I let him decide what he wants for breakfast and lunch. So today, he had turkey, cottage cheese and peaches. Hardly any carbs at all. The nutritionist had told him yesterday that he needs 45- 60 carbs per meal and that he should make sure he has them on the days that he has cardiac therapy. I asked him if he wanted more carbs, he said, no.
So, at 2 pm, he was low. He ate an apple. No glucose tabs, of course. And he was low at cardiac therapy.
So how stupid is that? He knows absolutely what he is supposed to do. He knows what he is supposed to eat. He just doesn't want to do it. Or is it a control issue? Or does he just want the attention of the therapists? I sat out in the lobby today - I'm just not going to watch him be stupid. Someone needs to slap this guy up the side of the head for sure!!!
On the way home, I couldn't keep my mouth shut. I told him that if he has a death wish, if he wants to die, let me know, I'll help him out. All he has to do is quit taking all of his meds and we will eat out 3 meals a day, 7 days a week. And if he wants to live, then he needs to do this 100%, not just the parts of it he wants to do.
He said, "yes maam". And I told him not to put this on me. I said that I'm not the person with diabetes or a heart problem. That I am only changing my eathing habits to help him, but I sure don't have to do that. I reminded him that he is the person picking what he wants to eat, not me. I ask him every single meal what he wants. So I have nothing to do with it - it's entirely up to him.
So of course, he's mad at me still. But today, I just didn't care. I'm back to my "good place" where I know this is not my problem, not my disease. I have done a really good job of taking care of him for the last 4 weeks and now it's time that he start taking care of himself. I know he doesn't want to. I know he wants to blame me or anyone else for everything that is wrong. But I'm not going to let him blame me.
He's been given a new chance to live with this surgery. He's just pretty stupid to not do what he has to do. And don't tell me it's hard. I'm eating exactly what his doctors and the nutritionist have told him to eat. So I know it can be done.
DW
Friday, April 09, 2010
Thursday, April 08, 2010
A horrible day
Visit to the nutritionist. She said he needs to load up on carbs when he has a low. I said they need to reduce his humulin, he's getting too much. She is sending a note to the endocrinologist to recommend dropping his humulin from 20cc - 18 or even 15 cc. He agreed to drop to 18 tomorrow. He was low again all afternoon.
So why would anyone say to load up on carbs when he has been low almost every afternoon for 2 weeks....I am charting and graphing so much the pattern is quite obvious. The heart surgeon's nurses said when he goes low to give him OJ. That gave him gout. So the endocrinologist said to give him peanut butter, apples, apple juice. Cardiac PT gave him apple juice. I have tried to get him to take glucose tabs for the last 3 years and he has absolutely refused to do so. The nutritionist wants him to take glucose tabs. . He told her today that he would. I wanted to scream my head off.
He came home, had a low, took smarties instead.
She said he should take a glucose tab every 15 minutes til he gets to 70. I asked - all afternoon? I showed her the charts where he has been low for 6 hours at a time....with everything he has been taking. Her answer? Glucose tabs act faster than smarties. Maybe they do. But remember, when he is low, he can't remember anything, can't remember what she said to do, can't remember what's best for him to do and will simply refuse to take what I offer him unless it's something he wants.
Shall I just let him go into a coma???
She made suggestions to increase carbs like putting raisens in his cereal. Of course, she didn't ask if he would do that and I know he hates raisens, so it won't happen. She suggested that rather than eating cockail sauce with the shrimp, that we sautee the shrimp. Probably won't happen either. She never asked him if he was a picky eater. She never asked him if he liked this or that. And it would not have mattered because he would have lied about it.
At one point, she asked him if he would do something and he looked at her, then at me and said, "if she will let me have it". I said, "Don't you dare put this on me!" But what I failed to tell her was that he is has been fixing his own breakfast and lunch the last 3 days - the decision on what to have is 100% up to him. Even when I fix his meals, I ask him what he wants to eat. I have learned over the years if I don't ask, then I'm just working for nothing because if he's not in the mood, he won't eat it. Yet we get into a meeting and he wants to put the blame on me. I just wanted to scream my head off.
We ran out of time. I didn't get to ask her about Mrs. Dash. At the hospital, they told us to not use salt substitutes, but to use all the Mrs. Dash's line. They told us a bout a local store that sold non-salt spices and to go there. Which I did. Yesterday, during the education session on medicines, they told us not to use any Mrs. Dash's products. When I questioned this, they said, "don't use the ones that have potassium in them". OK - but the hospital staff said to use ALL of the Mrs. Dash line.
And maybe that sounds like such a simple tiny problem to many, but this is a huge change in diet for him and he doesn't like herbs and spices - he wants salt.
Then he had the NIVA ultrasound done on his legs and arms. My sister and I picked him up and he wanted to go out for lunch. And I just said, "we better not" and drove home. He has been mad at me the rest of the day. And I mean really really mad! I just don't get it. We go talk to a nutritionist....and he wants to go out to lunch.
I want to give up. I want to quit. I have caregiver burnout so bad. I am sick and tired of doing everthing that I can to help him lose weight, keep his sugar stable, encourage him to exercise.....I have changed everything about how I live....and he gets mad because I tell him I'm not going out to eat.
More proof that he has a death wish?
Then, we were talking about next weeks appointments and I told him that Wednesday will be the worst. He has an education class followed by cardiac therapy and I have a minor outpatient surgery scheduled while he's doing that. He said, "the grandson is going to be delivered that day" and I said that we would be free on Thursday to go see him. Well, he got even madder. Not sure why - I only scheduled my appt to save yet another trip to the clinic. He already had his 2 appointments that day - was he planning on skipping them? He just forgot to mention that to me?
Anyway, it has been a horrible day here. I'm exhausted. Watching chick flicks with my sister and I may just sleep downstairs tonight. I'm just too tired to look at him, see his sullenness, feel how angry he is at me....when all I'm trying to do is help.
Tomorrow is a new day. I'm praying that it will be better.
DW
So why would anyone say to load up on carbs when he has been low almost every afternoon for 2 weeks....I am charting and graphing so much the pattern is quite obvious. The heart surgeon's nurses said when he goes low to give him OJ. That gave him gout. So the endocrinologist said to give him peanut butter, apples, apple juice. Cardiac PT gave him apple juice. I have tried to get him to take glucose tabs for the last 3 years and he has absolutely refused to do so. The nutritionist wants him to take glucose tabs. . He told her today that he would. I wanted to scream my head off.
He came home, had a low, took smarties instead.
She said he should take a glucose tab every 15 minutes til he gets to 70. I asked - all afternoon? I showed her the charts where he has been low for 6 hours at a time....with everything he has been taking. Her answer? Glucose tabs act faster than smarties. Maybe they do. But remember, when he is low, he can't remember anything, can't remember what she said to do, can't remember what's best for him to do and will simply refuse to take what I offer him unless it's something he wants.
Shall I just let him go into a coma???
She made suggestions to increase carbs like putting raisens in his cereal. Of course, she didn't ask if he would do that and I know he hates raisens, so it won't happen. She suggested that rather than eating cockail sauce with the shrimp, that we sautee the shrimp. Probably won't happen either. She never asked him if he was a picky eater. She never asked him if he liked this or that. And it would not have mattered because he would have lied about it.
At one point, she asked him if he would do something and he looked at her, then at me and said, "if she will let me have it". I said, "Don't you dare put this on me!" But what I failed to tell her was that he is has been fixing his own breakfast and lunch the last 3 days - the decision on what to have is 100% up to him. Even when I fix his meals, I ask him what he wants to eat. I have learned over the years if I don't ask, then I'm just working for nothing because if he's not in the mood, he won't eat it. Yet we get into a meeting and he wants to put the blame on me. I just wanted to scream my head off.
We ran out of time. I didn't get to ask her about Mrs. Dash. At the hospital, they told us to not use salt substitutes, but to use all the Mrs. Dash's line. They told us a bout a local store that sold non-salt spices and to go there. Which I did. Yesterday, during the education session on medicines, they told us not to use any Mrs. Dash's products. When I questioned this, they said, "don't use the ones that have potassium in them". OK - but the hospital staff said to use ALL of the Mrs. Dash line.
And maybe that sounds like such a simple tiny problem to many, but this is a huge change in diet for him and he doesn't like herbs and spices - he wants salt.
Then he had the NIVA ultrasound done on his legs and arms. My sister and I picked him up and he wanted to go out for lunch. And I just said, "we better not" and drove home. He has been mad at me the rest of the day. And I mean really really mad! I just don't get it. We go talk to a nutritionist....and he wants to go out to lunch.
I want to give up. I want to quit. I have caregiver burnout so bad. I am sick and tired of doing everthing that I can to help him lose weight, keep his sugar stable, encourage him to exercise.....I have changed everything about how I live....and he gets mad because I tell him I'm not going out to eat.
More proof that he has a death wish?
Then, we were talking about next weeks appointments and I told him that Wednesday will be the worst. He has an education class followed by cardiac therapy and I have a minor outpatient surgery scheduled while he's doing that. He said, "the grandson is going to be delivered that day" and I said that we would be free on Thursday to go see him. Well, he got even madder. Not sure why - I only scheduled my appt to save yet another trip to the clinic. He already had his 2 appointments that day - was he planning on skipping them? He just forgot to mention that to me?
Anyway, it has been a horrible day here. I'm exhausted. Watching chick flicks with my sister and I may just sleep downstairs tonight. I'm just too tired to look at him, see his sullenness, feel how angry he is at me....when all I'm trying to do is help.
Tomorrow is a new day. I'm praying that it will be better.
DW
Wednesday, April 07, 2010
exhaustion
Tonight, I think I have a new definition of the word exhaustion. But I don't know how to describe it. I don't know when I have been this worn out. I'm not sure that I can physically do another set of stairs tonight. But I have to, to get to bed. It's only Wednseday. How do I make it through the rest of the week?
He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.
I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.
I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.
My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.
There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.
DW
He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.
I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.
I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.
My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.
There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.
DW
Tuesday, April 06, 2010
The ups and downs of post surgery
Yesterday morning, he took 22 cc of humulin and he was only supposed to take 20. I was wondering why he got confused...and then remembered that this can happen post surgery. So of course, he had a couple of major lows in the early afternoon. And I don't think he recognized them coming on. So I am ever so grateful that he is now testing on a very regular basis.
He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.
We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.
The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.
My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.
All-in-all it was a good day today. :o)
DW
He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.
We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.
The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.
My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.
All-in-all it was a good day today. :o)
DW
Monday, April 05, 2010
Post-surgery emotions
I had been warned that open heart surgery can completely change a person's emotions. And that for the first 2 years post surgery, there can be lots of emotions, depression, etc. But I just was not prepared for what he did Saturday morning.
I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.
I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.
He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?
He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.
When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.
And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.
I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.
I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.
And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.
So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.
Here's hoping the week improves.
DW
I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.
I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.
He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?
He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.
When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.
And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.
I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.
I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.
And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.
So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.
Here's hoping the week improves.
DW
Friday, April 02, 2010
The nephrologist
Said he doesn't think hubby's kidney failure is from the diabetes.
Go figure.
I'm trying to figure out if the nephrologist is an idiot, or uneducated, or just doesn't have a clue?
He was a pretty young guy.
He wanted to reduce the alopurinol from 500 mg to 150 mg. Hubby takes it for gout and to keep his uric acid low. It's working just fine. Why reduce it? Especially since hubby just had a MAJOR gout attack last weekend.
So the doctor at least agreed that he would make that a referral to hubby's GP and let the GP (who just saw the gout) make the call.
It's like they all just look at a chart and tell him what to do. But no one is looking at the whole - the entire picture - to see what might be best to do.
Lower the alopurinol, increase the gout, increase the prednisone, make the glucose go up, increase the insulin......
Am I the only person on earth who sees the path this would set him on?
I honestly think none of his physicians really care.
And that is so sad.
DW
Go figure.
I'm trying to figure out if the nephrologist is an idiot, or uneducated, or just doesn't have a clue?
He was a pretty young guy.
He wanted to reduce the alopurinol from 500 mg to 150 mg. Hubby takes it for gout and to keep his uric acid low. It's working just fine. Why reduce it? Especially since hubby just had a MAJOR gout attack last weekend.
So the doctor at least agreed that he would make that a referral to hubby's GP and let the GP (who just saw the gout) make the call.
It's like they all just look at a chart and tell him what to do. But no one is looking at the whole - the entire picture - to see what might be best to do.
Lower the alopurinol, increase the gout, increase the prednisone, make the glucose go up, increase the insulin......
Am I the only person on earth who sees the path this would set him on?
I honestly think none of his physicians really care.
And that is so sad.
DW
Wednesday, March 31, 2010
Agnus wrote
Gosh, I feel for you. Been there. Stage-setter: Different risks - history of addiction, depression, HepC, bad hips and shoulders; Amaryl, Metformin and Glucophage; A1Cs 7- 8, bs 200-400, never reported. He refused insulin, afraid needles would trigger a heroin relapse. So, bypass in 1999.
What to expect? Tears, normal and healthy, release bad stress. Testosterone disappears in surgery so he's all estrogen now til it rebuilds – enjoy it! Men ignore this, you'll hate it: We watched chick flicks and boo-hooed together, what a hoot!
His pain was hard to control in this order:
1) where the tubes had been, 8-9 first week, livable by week 3
2) lower back, 8-9. BTW they quit using steel gurneys; cardio says now they pad ‘em cuz the patient's full weight rests on spine and sacrum but there’s no blood-fed tissue to protect nerves.
3) legs where veins were pulled - fiery 7-9 for weeks, worse when he walked for his rehab. With pain pills he gradually got walking 45 minutes a day after 2-3 months.
We had two pretty good years after the surgery when he stuck with rehab. They stepped him down to Tramadol but a year later pulled that too when his liver enzymes crept up. He stopped walking, too painful. He could not return to factory work, failed the paperwork parts of retraining for new work, stayed unemployed 3 years, then found part-time work he loved.
His heart, thank God, has stayed great. They had time for only 5 of 6 bypasses, but the last was not critical. A recent check 11 years post-op shows his heart still ticking along fine. (They let him back on tramadol last year; guess it's moot now that he has cirhossis.) And he injects insulin now 4x day.
Sometime post-surgery I started noticing what I thought were lows or highs, but somehow different. He was tested and found to have a learning disability affecting multi-dimension and abstract perceptions. They said he may have had it all along, just noticeable now that he was out of the factory. Maybe. Or, diabetes? Surgery? Drug abuse? Rx side-fx? Head injuries? He’s had ‘em all. In 2003 he was diagnosed with a liver-related brain disease too.
I walk a daily tightrope between taking care of myself and taking care of him, being his friend and being his mommy, being his support and being his boss. I used to ask myself why I stayed, but I know: I love the guy, I don't break vows before God today, and I don't want to spend the rest of my life knowing myself as the kind of person who would bail on such a sick man when he has no one else.
My belief is that we are each here to learn certain lessons in life, and God will help us learn them as quickly and painlessly as we will let Him. His illness has changed me in ways I don't like, but also in ways that I am pretty proud of today (see preceding paragraph). I might have learned these life lessons some other way, like having a terminally ill child, or becoming a paraplegic or something. In the end, I had to surrender and accept that neither God nor I had made a mistake about my marriage. This is where I belong.
My Dad was a stick-to-the-end husband and father, and in my younger days I did not respect that or follow his example. Fortunately he saw me change, and before Alzheimer’s got him, he recognized me as a “sticker” now too. Dad died 2 weeks ago and it feels good to know he is proud of me today.
Well, I've written War and Peace again, I'm afraid - apparently I need a more regular outlet for my creativity or it floods when I'm pumped! Hope you're not drowned. You are a blessing, and I'm praying for you.
Agnus
Agnes, I am so sorry for the death of your father. I lost mine almost 20 years ago and it seems like yesterday in so many ways. Thank you for writing your story. You are quite brave to do so. And gave me a few new things to think about. I have to say, I thought it was so strange last week when he agreed to watch a chick flick with me! But you have now explained that to me, so I will take advantage of it while it lasts! :o)
It's good to know that he is 11 years post op. I think once they get my hubby's back fixed - he may outlive me!
After the past several days, today was a good day. It was wonderful! His pain is down, his sugars are remaining good, and he was in overall good spirits. I really needed a break and I got it today! And I had a really good night's sleep last night and looking forward to another one tonight.
DW
Gosh, I feel for you. Been there. Stage-setter: Different risks - history of addiction, depression, HepC, bad hips and shoulders; Amaryl, Metformin and Glucophage; A1Cs 7- 8, bs 200-400, never reported. He refused insulin, afraid needles would trigger a heroin relapse. So, bypass in 1999.
What to expect? Tears, normal and healthy, release bad stress. Testosterone disappears in surgery so he's all estrogen now til it rebuilds – enjoy it! Men ignore this, you'll hate it: We watched chick flicks and boo-hooed together, what a hoot!
His pain was hard to control in this order:
1) where the tubes had been, 8-9 first week, livable by week 3
2) lower back, 8-9. BTW they quit using steel gurneys; cardio says now they pad ‘em cuz the patient's full weight rests on spine and sacrum but there’s no blood-fed tissue to protect nerves.
3) legs where veins were pulled - fiery 7-9 for weeks, worse when he walked for his rehab. With pain pills he gradually got walking 45 minutes a day after 2-3 months.
We had two pretty good years after the surgery when he stuck with rehab. They stepped him down to Tramadol but a year later pulled that too when his liver enzymes crept up. He stopped walking, too painful. He could not return to factory work, failed the paperwork parts of retraining for new work, stayed unemployed 3 years, then found part-time work he loved.
His heart, thank God, has stayed great. They had time for only 5 of 6 bypasses, but the last was not critical. A recent check 11 years post-op shows his heart still ticking along fine. (They let him back on tramadol last year; guess it's moot now that he has cirhossis.) And he injects insulin now 4x day.
Sometime post-surgery I started noticing what I thought were lows or highs, but somehow different. He was tested and found to have a learning disability affecting multi-dimension and abstract perceptions. They said he may have had it all along, just noticeable now that he was out of the factory. Maybe. Or, diabetes? Surgery? Drug abuse? Rx side-fx? Head injuries? He’s had ‘em all. In 2003 he was diagnosed with a liver-related brain disease too.
I walk a daily tightrope between taking care of myself and taking care of him, being his friend and being his mommy, being his support and being his boss. I used to ask myself why I stayed, but I know: I love the guy, I don't break vows before God today, and I don't want to spend the rest of my life knowing myself as the kind of person who would bail on such a sick man when he has no one else.
My belief is that we are each here to learn certain lessons in life, and God will help us learn them as quickly and painlessly as we will let Him. His illness has changed me in ways I don't like, but also in ways that I am pretty proud of today (see preceding paragraph). I might have learned these life lessons some other way, like having a terminally ill child, or becoming a paraplegic or something. In the end, I had to surrender and accept that neither God nor I had made a mistake about my marriage. This is where I belong.
My Dad was a stick-to-the-end husband and father, and in my younger days I did not respect that or follow his example. Fortunately he saw me change, and before Alzheimer’s got him, he recognized me as a “sticker” now too. Dad died 2 weeks ago and it feels good to know he is proud of me today.
Well, I've written War and Peace again, I'm afraid - apparently I need a more regular outlet for my creativity or it floods when I'm pumped! Hope you're not drowned. You are a blessing, and I'm praying for you.
Agnus
Agnes, I am so sorry for the death of your father. I lost mine almost 20 years ago and it seems like yesterday in so many ways. Thank you for writing your story. You are quite brave to do so. And gave me a few new things to think about. I have to say, I thought it was so strange last week when he agreed to watch a chick flick with me! But you have now explained that to me, so I will take advantage of it while it lasts! :o)
It's good to know that he is 11 years post op. I think once they get my hubby's back fixed - he may outlive me!
After the past several days, today was a good day. It was wonderful! His pain is down, his sugars are remaining good, and he was in overall good spirits. I really needed a break and I got it today! And I had a really good night's sleep last night and looking forward to another one tonight.
DW
Sharing my charts
Here are the spreadsheets that I came up with to chart his daily intake of food (we have to limit sodium, fat, carbs, calories, fiber.....) and charting of blood tests, with places for his hypos. After a week of using these, they seem to meet his needs. The nurses are beyond happy with what we can fax to them. We'll see what the nutritionist says when we see her next week.
Just click on the image to make it larger.
DW
Just click on the image to make it larger.
DW
Tuesday, March 30, 2010
Thank you!
I received this comment today:
Wife: Chances are your husband does not know what he's putting you through, at least not at THAT moment. When we go Low, resistence and fussiness are common happenings. We will fight to avoid eating or drinking what's necessary. For Type 1s, that can manifest into crazy, surreal, sci-like scenes where you're more like an Alien trying to poison him rather than a loving spouse trying to help. That is what it is. Hopefully, your husband is someone who feels guilt following these Lows and apologizes after the fact. They are tormenting on those who must confront them, and I personally am thankful for my wife, the efforts of my parents during my childhood, and all those who've had to deal with diabetic hypos to whatever extent. Thanks for posting this, and continued wishes for good luck your way.
Thank you.
He always feels guilt the following day, but never really knows why. I feel so bad for him. It must be awful not being able to remember what happened, but feeling you need to apologize.
I do think he is less and less able to tell when a low is coming on, so I am really grateful that he has started testing numerous times a day. It is making him aware that he is not aware of the hypos.
I got a 2 hour nap in this afternoon which really helped. He slept about 2 hours as well. Pain still significant after 6 narcotic strength pain pills today. Getting ready to do our "evening routine" as we like to call it. Hope we can get some much needed sleep tonight.
DW
+++++++
Wife: Chances are your husband does not know what he's putting you through, at least not at THAT moment. When we go Low, resistence and fussiness are common happenings. We will fight to avoid eating or drinking what's necessary. For Type 1s, that can manifest into crazy, surreal, sci-like scenes where you're more like an Alien trying to poison him rather than a loving spouse trying to help. That is what it is. Hopefully, your husband is someone who feels guilt following these Lows and apologizes after the fact. They are tormenting on those who must confront them, and I personally am thankful for my wife, the efforts of my parents during my childhood, and all those who've had to deal with diabetic hypos to whatever extent. Thanks for posting this, and continued wishes for good luck your way.
Thank you.
He always feels guilt the following day, but never really knows why. I feel so bad for him. It must be awful not being able to remember what happened, but feeling you need to apologize.
I do think he is less and less able to tell when a low is coming on, so I am really grateful that he has started testing numerous times a day. It is making him aware that he is not aware of the hypos.
I got a 2 hour nap in this afternoon which really helped. He slept about 2 hours as well. Pain still significant after 6 narcotic strength pain pills today. Getting ready to do our "evening routine" as we like to call it. Hope we can get some much needed sleep tonight.
DW
+++++++
Daily notes
Don't have much time for anything else in life right now other than charting his food/meds/stats and keeping notes. Thought I would post this mornings notes here. I like to write things down before I/he calls a doctor just so we don't forget something in the conversation.
I wish someone who has been down this road would post and let me know what to expect next! Maybe it's not possible.
It's now almost 2pm. And I have been providing him care since 6 am - non stop. Probably not a good day for me to make any decisions. But I have to wonder what I'm doing still here. How much can love endure? He has absolutely no quality of life at the moment. I'm trying hard to see any kind of light at the end of the tunnel, but at the moment, it looks like one huge black hole. I do know it's there.....it's just not visible at all today. I am in my one minute at a time mode. If I even stop to think how much of my life is currently being consumed by HIS disease I will get depressed. I thank God daily that I am healthy. Because I know that no one else in his life is going to take care of him.
DW
Wed - 4 sugar lows
Thurs 6 sugar lows
Fri 3 sugar lows, saw endo, changed humulin
Sat ok
Sun 1 low
Mon 1 low
Possibly too much OJ to resolve the lows, too much citric acid, thinks his gout has flared up.
Infection in l hand/wrist and l knee.
started colchicine on Saturday, took until he got nauseated (per instructions)
Has not been taking diladid as he is still constipated somewhat. Had hard BM yesterday, still taking stool softeners.
In pain since last Friday, not improving.
Awake at 3 am today.
4 extra strength tylenol at 6 am
1 diladid at 8 am
Zero relief from pain.
Overall pain level 7, spikes to 9 are random
Left writs pain 10 to touch or move
So much pain he is now nauseated from the pain
Backpain with no movement is 5
hip to knee pain 0-7 in cycles
He has had hot searing pain from outside left hip to knee since he got home from surgery, had associated it with healing, but that pain has intensified since Friday.
Called surgeon's office. In surgery til 3 pm today. Nurse does not think this is gout due to location of infections, wants him to see a physician today.
Called the doctor's office and his GP is out today.
Cardiac Rehab assessment at 9:15 am.
1 hour assessment of his physical condition.
Do not want to start PT until next week due to pain levels today.
Nurse ret'd call, go from there to doctor's office, get labs first.
Labs done, then waiting
GP: only way to know if it's gout is to do a needle biopsy, but he doesn't see enough fluid to do that. Uric acid level won't tell anything - usually goes down during an attack.
While not typical joints for gout to attack, agree he has had gout there in the past. Atypical in how it started, but that doesn't matter now either.
Treat with prednisone for presumed gout, a lower dose. There should be clear progress by Thursday. If not, or if it's worse tomorrow, call back in.
Prednisone increases blood sugars, contact endocrinology to adjust Humulin levels.
At the clinic from 9 am - noon. Home. Fixed lunch. Basically skipped entire morning routines, no glucose levels, etc.
Called cardiac surgeon's office to insure ok to take prednisone this soon after surgery. (She called back, it's ok)
Called endo office. Doctor is out ill today, but taking messages Nurse not sure how to adjust humulin, wants to consult with physician.
1 pm. First dose of prednisone. And doubled the dilaudid.
Sound asleep at 1:30 pm.
I wish someone who has been down this road would post and let me know what to expect next! Maybe it's not possible.
It's now almost 2pm. And I have been providing him care since 6 am - non stop. Probably not a good day for me to make any decisions. But I have to wonder what I'm doing still here. How much can love endure? He has absolutely no quality of life at the moment. I'm trying hard to see any kind of light at the end of the tunnel, but at the moment, it looks like one huge black hole. I do know it's there.....it's just not visible at all today. I am in my one minute at a time mode. If I even stop to think how much of my life is currently being consumed by HIS disease I will get depressed. I thank God daily that I am healthy. Because I know that no one else in his life is going to take care of him.
DW
Saturday, March 27, 2010
Sugar lows
I wonder if he knows what he puts me through when he goes low?
10:00 pm last night:
57
OJ
wait 15 minutes
test
54
Peanut butter
wait 15 minutes
test
48
He's getting grouchier by the moment. Refuses to drink water. Won't take a glucose tablet or a smartie. Refused those from the beginning. Starting to get paler (is that possible?) Blood pressure is dropping. He says he's tired. Doesn't want anything at all to eat right now. Doesn't want to test his sugar again. Just wants to go to sleep.
Do I walk over and smack him?
Do I start a rip roaring argument?
Obviously, he's still getting too much insulin. Will he remember in the morning? Well, at least he can look at his meter and see that he went low. But how do I get him to test a 4th, 5th and 6th time if he goes low?
Do I just let him go to sleep and pray that whatever happens, it will be ok?
Particularily rough day and I am exhausted already. Literally no strength left to give him an ounce of support. I'm so exhausted from the last 3 weeks that I'm sick to my stomach. Ever been that worn out? Can only think of once in my lifetime, I was 21 and had mono. Took me 6 weeks to recover from that.
He promises to test one more time. I tried so hard to stay awake, but I wasn't successful. The next thing I remember it was 6 am and a woodpecker was pounding on the side of the house, waking me up. Woke him up, too.
He said he fell asleep the same time I did. We looked at his meter and he did not test again. So no idea where his glucose was...but we both made it through the night,
I can't allow myself to do all the "what ifs". There is nothing left in me to expend on wasted worries.
Today, his left leg is on fire. It's where they took the vein(s) from. He is in severe pain. He has it elevated and has heat on it. We will keep an eye on it. Glucose is up to 157 this morning. Need to get it back down. Will retest in half hour.
Need to come up for a better word than exhausted. Drained? Zapped? Way too old for this? Overwhelmed? Burdened? And I'm getting a good 8 hours of sleep every night!
Hopefully we will both get caught up on rest this weekend,
DW
10:00 pm last night:
57
OJ
wait 15 minutes
test
54
Peanut butter
wait 15 minutes
test
48
He's getting grouchier by the moment. Refuses to drink water. Won't take a glucose tablet or a smartie. Refused those from the beginning. Starting to get paler (is that possible?) Blood pressure is dropping. He says he's tired. Doesn't want anything at all to eat right now. Doesn't want to test his sugar again. Just wants to go to sleep.
Do I walk over and smack him?
Do I start a rip roaring argument?
Obviously, he's still getting too much insulin. Will he remember in the morning? Well, at least he can look at his meter and see that he went low. But how do I get him to test a 4th, 5th and 6th time if he goes low?
Do I just let him go to sleep and pray that whatever happens, it will be ok?
Particularily rough day and I am exhausted already. Literally no strength left to give him an ounce of support. I'm so exhausted from the last 3 weeks that I'm sick to my stomach. Ever been that worn out? Can only think of once in my lifetime, I was 21 and had mono. Took me 6 weeks to recover from that.
He promises to test one more time. I tried so hard to stay awake, but I wasn't successful. The next thing I remember it was 6 am and a woodpecker was pounding on the side of the house, waking me up. Woke him up, too.
He said he fell asleep the same time I did. We looked at his meter and he did not test again. So no idea where his glucose was...but we both made it through the night,
I can't allow myself to do all the "what ifs". There is nothing left in me to expend on wasted worries.
Today, his left leg is on fire. It's where they took the vein(s) from. He is in severe pain. He has it elevated and has heat on it. We will keep an eye on it. Glucose is up to 157 this morning. Need to get it back down. Will retest in half hour.
Need to come up for a better word than exhausted. Drained? Zapped? Way too old for this? Overwhelmed? Burdened? And I'm getting a good 8 hours of sleep every night!
Hopefully we will both get caught up on rest this weekend,
DW
Friday, March 26, 2010
Endocrinology
Finally. The first time he has actually seen an endocrinologist. What's it been? 5 years I think. Nurse after nurse, but never a doctor. It was interesting that she felt his heart condition was heriditary while the surgeon said it was caused by his diabetes. Proof that no one physician is responsible for the overall person. They just break it down by speciality. So we have decided that together, we are going to insure he gets all the care he needs.
Today was good. We now have permission to drop doses by 2 cc every day that he goes low. Of course, we can raise by 2 as well.
We have an email address - somewhere to actually send the numbers from his meter to show how often he's going low.
We have a telephone number and a fax number.
More than he has ever had in the past.
We have a plan. He has lost 20 pounds and wants to take off another 40. When he gets to his goal, then she will look at taking him off the Humulin and back on the regular insulan.
Our goal is to see how much of this we can reverse. With good diet, good control and exercise.
Of course, he is only 2 weeks post op. I pray that he will stick with this. But I'm wise enough to know that it's up to him to continue with these changes.
Morning dose was 30, tomorrow will be 22. Evening dose was 17, tonight was 11. So nearly a 1/3 drop already, post surgery.
Still had 2 lows this afternoon, but we did not reduce this mornings dose, so the proof will be when he takes his bedtime glucose....he should not below if her theory holds true.
A good day.
DW
Today was good. We now have permission to drop doses by 2 cc every day that he goes low. Of course, we can raise by 2 as well.
We have an email address - somewhere to actually send the numbers from his meter to show how often he's going low.
We have a telephone number and a fax number.
More than he has ever had in the past.
We have a plan. He has lost 20 pounds and wants to take off another 40. When he gets to his goal, then she will look at taking him off the Humulin and back on the regular insulan.
Our goal is to see how much of this we can reverse. With good diet, good control and exercise.
Of course, he is only 2 weeks post op. I pray that he will stick with this. But I'm wise enough to know that it's up to him to continue with these changes.
Morning dose was 30, tomorrow will be 22. Evening dose was 17, tonight was 11. So nearly a 1/3 drop already, post surgery.
Still had 2 lows this afternoon, but we did not reduce this mornings dose, so the proof will be when he takes his bedtime glucose....he should not below if her theory holds true.
A good day.
DW
Thursday, March 25, 2010
Humulin R U 500
Eli Lilly says that this product can increase your hypos.
DUH!
Hubby had 4 lows 2 days ago and the reduced his dose.
He had 2 lows yesterday.
Went to his GP today who said he needs to be in daily contact with endocrinology while he is having lows. So we stopped by that department onour way out and there was no one available. Not even a nurse!
He has been with his HMO since 2006. He has never once in all this time seen a doctor in the department - just a nurse.
I got mad. We came home and I called his diabetes nurse. She in turn, forwarded my voice mail to a diabetes patient advocate Good for her! The advocate was amazing. I think she was a bit shocked he had not seen a physician. She asked if he had requested to see on and I told her he had on multiple occassions and all he ever got was an appointment with a nurse!!!
Well, we have an appointment with a physician in the endocrinology at the main facility tomorrow. It's a 26 mile drive, but we don't care.
She also told us that any time he has a low, it's safe to lower the Humulin by 10%. She instructed us the dose to give tonight and in the morning.
At 2:30 pm, he went low. Had OJ. At 4 pm, he was low again. MoreOJ. Company interrupted his routine. He hasn't learned yet that testing is more important than company, but that's ok. He retested at 6 and was still low. More OJ. At 6:30 he retested and had come up a little. I suggested that he reduce the insulin even more, but he didn't want to. So he took her recommended dose tonight. Ate a huge dinner, but has been low since 8:30. OJ and PB every 15 minutes with another test. Still low. Took a double dose of OJ and we'll see where he is in another 5 minutes.
I have to say that today's lows - he didn't get all angry and nasty. He was pretty calm. Somewhat aggitated. But calm.
I am praying that the physician we see tomorrow can give him some relief. I'm sure with his new diet and exercise plan, he is getting way too much insulin. Compounded by the fact that Humulin creates additional lows. And an endo department that has basically ignored him up til this point.
Sigh.
DW
DUH!
Hubby had 4 lows 2 days ago and the reduced his dose.
He had 2 lows yesterday.
Went to his GP today who said he needs to be in daily contact with endocrinology while he is having lows. So we stopped by that department onour way out and there was no one available. Not even a nurse!
He has been with his HMO since 2006. He has never once in all this time seen a doctor in the department - just a nurse.
I got mad. We came home and I called his diabetes nurse. She in turn, forwarded my voice mail to a diabetes patient advocate Good for her! The advocate was amazing. I think she was a bit shocked he had not seen a physician. She asked if he had requested to see on and I told her he had on multiple occassions and all he ever got was an appointment with a nurse!!!
Well, we have an appointment with a physician in the endocrinology at the main facility tomorrow. It's a 26 mile drive, but we don't care.
She also told us that any time he has a low, it's safe to lower the Humulin by 10%. She instructed us the dose to give tonight and in the morning.
At 2:30 pm, he went low. Had OJ. At 4 pm, he was low again. MoreOJ. Company interrupted his routine. He hasn't learned yet that testing is more important than company, but that's ok. He retested at 6 and was still low. More OJ. At 6:30 he retested and had come up a little. I suggested that he reduce the insulin even more, but he didn't want to. So he took her recommended dose tonight. Ate a huge dinner, but has been low since 8:30. OJ and PB every 15 minutes with another test. Still low. Took a double dose of OJ and we'll see where he is in another 5 minutes.
I have to say that today's lows - he didn't get all angry and nasty. He was pretty calm. Somewhat aggitated. But calm.
I am praying that the physician we see tomorrow can give him some relief. I'm sure with his new diet and exercise plan, he is getting way too much insulin. Compounded by the fact that Humulin creates additional lows. And an endo department that has basically ignored him up til this point.
Sigh.
DW
Tuesday, March 23, 2010
Jason said,
Jason, I applaud you!!! Kudos on your attitude. I know my hubby needs to test, test, test. But it's sure easier to know what he needs to do that it is to get him to do it. :o) I wish he had your attitude, that this was up to him. That he didn't rely on anyone else to help him through this. I think today, he's relying too much on me and I'm backing off. I'm giving him a time out.
Please do keep up the good work. You are so right - you have a chance to have a wonderful life. And because you are young, there is hope that medicine can grow so much in the coming years and perhaps, this disease can even be stopped.
My sincerest best wishes for your continued success!
DW
See, I agree. It IS all about discipline. When I was Dx'ed, I turned around and laughed at the nurse who told me I needed carbs to live. I did my reading/research, and took control.
I will not rely on anyone to deal with this, I have to.
I commend you for your efforts. I hope to hell your hubby has smartened up! I do caution you though: I come from a long line of diabetics, but a LONG-lived line. Dealing with it, making the change is the key. Test! Test! And Test some more.
I have got my avg from 17 mmols to 6.8 in just three weeks. I am young, and I refuse to throw away my chances of healthy living later on. I know that there might be a chance that I develop those symptoms, but I am gonna try my HARDEST to prevent that.
Hang in there. You are a warrior, and the fight will be won.
Jason, I applaud you!!! Kudos on your attitude. I know my hubby needs to test, test, test. But it's sure easier to know what he needs to do that it is to get him to do it. :o) I wish he had your attitude, that this was up to him. That he didn't rely on anyone else to help him through this. I think today, he's relying too much on me and I'm backing off. I'm giving him a time out.
Please do keep up the good work. You are so right - you have a chance to have a wonderful life. And because you are young, there is hope that medicine can grow so much in the coming years and perhaps, this disease can even be stopped.
My sincerest best wishes for your continued success!
DW
4 lows by 4 pm
I can't take it. Seriously. FOUR lows today. I know it's because he has changed his diet and he is exercising and they haven't reduced his insulin. But because he's on Humulin R U 500 - no one wants to mess with it. And his diabetic nurse is on vacation. He said he called and they wanted him to download his sugars. So he walked upstairs to get his meter cable. Remember, he just had open heart surgery and he is not supposed to do more than one set of stairs.
But he's in a low. So he doesn't have the ability to reason or remember. He's like a bull in a china shop.
He can't find the cable. He wants to know where it is, what I did with it. Of course, I haven't touched it and don't have a clue where he last had it - it was before surgery.
Hrumph. He said last night that he downloaded and sent his numbers to his nurse. Guess that was another lie. Are we back into our old patterns?
Oh, my mistake, he said he emailed her the numbers.
I seriously want to ask him for a copy of the email, but at that point - he would have gone ballistic. So I started looking through his drawers trying to find this cable. Note, he is a computer geek and there are at least 500 cables in his drawers/closte, etc. I don't find it. He's truly upset because I can't find it.
He says, "do we have any potatoes?"
I'm wondering why, thinking that he wants a baked potato and I say, "no, why do you want one?"
He looks at me like I'm an idiot and he says, "DO (pause) we (pause) have (pause) any (pause) potatoes?
I said, "we have raw potatoes in the pantry.
He said, can you bake me one?
I said, "Sweetie, we are having baked potatoes for dinner toinght."
He said, "that's 2 1/2 hours from now. I need one right now."
I said, "it will take an hour to bake it"
He said, "just put it in the microwave for 12 minutes".
So I did just that.
Then I asked him, "why do you want a potato? It's a fast acting carb."
He says, "no, it's long lasting carbs".
I said, "a potato is high glycemic, that means it's a fast acting carb."
He says, "look it up in the book - you don't know what you are talking about, you need to learn this stuff."
I go get the book, find the page, show him that it says "high".
He says, It's high in carbs and that's what I need right now, more carbs.
I said, "I think what you mean is that you need long acting carbs and a potato is a fast acting carb."
He said, "you don't have any idea what you are talking about!".
This is after he has had 2 things of smarties, a glass of orange juice, and 2 cookies.
(God help me. One of his employees sent him a gift basked filled to the brim with cookies and candies. Arrived at noon today. Must be an employee that wants him dead!)
I said to him, "I think you are a little confused right now."
He said, "get out. Just leave"
So I did. I walked upstairs and shut the door.
I can't help him when he's in a low. I can't do anything for him. But I did call the diabetic nurse and told her that I needed immediate help. I said I knew his nurse was on vacation but there has to be someone who can help me. I explained the whole scenario to her and she had me read the numbers to him from his machine. I did. She took it to the endocronologist and they called back in 10 minutes and are reducing his insulin starting today.
I am praying that tomorrow is a better day with less lows. How do other spouses handle the lows? I am already beyond exhausted from everything that we are doing as part of his cardiac rehab.....I can't take these lows and his argumentative moods. He has no idea how hurtful his words are. I can't take the blame. And I really do know what I'm talking about, but I know he's in a low and has no clue.
Want to know something funny? The baked potato is still in the microwave! :o)
DW
But he's in a low. So he doesn't have the ability to reason or remember. He's like a bull in a china shop.
He can't find the cable. He wants to know where it is, what I did with it. Of course, I haven't touched it and don't have a clue where he last had it - it was before surgery.
Hrumph. He said last night that he downloaded and sent his numbers to his nurse. Guess that was another lie. Are we back into our old patterns?
Oh, my mistake, he said he emailed her the numbers.
I seriously want to ask him for a copy of the email, but at that point - he would have gone ballistic. So I started looking through his drawers trying to find this cable. Note, he is a computer geek and there are at least 500 cables in his drawers/closte, etc. I don't find it. He's truly upset because I can't find it.
He says, "do we have any potatoes?"
I'm wondering why, thinking that he wants a baked potato and I say, "no, why do you want one?"
He looks at me like I'm an idiot and he says, "DO (pause) we (pause) have (pause) any (pause) potatoes?
I said, "we have raw potatoes in the pantry.
He said, can you bake me one?
I said, "Sweetie, we are having baked potatoes for dinner toinght."
He said, "that's 2 1/2 hours from now. I need one right now."
I said, "it will take an hour to bake it"
He said, "just put it in the microwave for 12 minutes".
So I did just that.
Then I asked him, "why do you want a potato? It's a fast acting carb."
He says, "no, it's long lasting carbs".
I said, "a potato is high glycemic, that means it's a fast acting carb."
He says, "look it up in the book - you don't know what you are talking about, you need to learn this stuff."
I go get the book, find the page, show him that it says "high".
He says, It's high in carbs and that's what I need right now, more carbs.
I said, "I think what you mean is that you need long acting carbs and a potato is a fast acting carb."
He said, "you don't have any idea what you are talking about!".
This is after he has had 2 things of smarties, a glass of orange juice, and 2 cookies.
(God help me. One of his employees sent him a gift basked filled to the brim with cookies and candies. Arrived at noon today. Must be an employee that wants him dead!)
I said to him, "I think you are a little confused right now."
He said, "get out. Just leave"
So I did. I walked upstairs and shut the door.
I can't help him when he's in a low. I can't do anything for him. But I did call the diabetic nurse and told her that I needed immediate help. I said I knew his nurse was on vacation but there has to be someone who can help me. I explained the whole scenario to her and she had me read the numbers to him from his machine. I did. She took it to the endocronologist and they called back in 10 minutes and are reducing his insulin starting today.
I am praying that tomorrow is a better day with less lows. How do other spouses handle the lows? I am already beyond exhausted from everything that we are doing as part of his cardiac rehab.....I can't take these lows and his argumentative moods. He has no idea how hurtful his words are. I can't take the blame. And I really do know what I'm talking about, but I know he's in a low and has no clue.
Want to know something funny? The baked potato is still in the microwave! :o)
DW
Sunday, March 21, 2010
Discipline
You know, when I was a kid, my parents spanked me. Hard! They made me clean out the pig stall in the barn when I was bad (oh, how I absolutely hated that!) With each incident, my punishment was worse. There was no mercy. It was called discipline! They instilled in me a good strong set of values, a good work ethic, a whole lot of logic, and the knowledge of right and wrong.
They did not beat around the bush. They did not sugar-coat much of anything in life. They were honest people. God-fearing Christians. They did not spare the rod. The child was not spoiled. I grew up in a house with no TV. Ever! We rode horses, played in the barn, learned about life by watching farm animals and product growing in the fields.
Today, we have become such a sympathetic society. We sugar coat everything. We never spank our children. We rarely raise our voices to them. We entertain them more that we educate them. We try our best to make everything sound nice. We don't talk much about what is going on in the whole world - most of us are limited to what's going on in our neighborhood, our own town, perhaps even our state. We don't have much of a global vison about anything.
And we stuff anything into our kids to hush them up. We reward them with sugar. Every holiday or event is a reason to serve up sugar. On the news tonight they said this is the first generation that will live a shorter lifespan than their parents. How sad is that?
I think diabetes is the same thing. Mom was a visiting nurse when I was a kid. I remember her going to homes of people with diabetes. She would say to them, "if you keep eating all that chocolate they are going to have to cut off your foot." She did not mince words. Ever. She didn't tell them when it would happen, she just told them that it would. At church, they would take food to the shut-ins. Mom would never allow them to take sweets to a diabetic. She was quite adamant about that. She wasn't nice when it came to someone else's disease. It wasn't just diabetes....it was anything. She took the time to teach people how to take care of themselves, what to eat, how to change dressings. She was a wonderful caregiver. But she had no patience with people who did not do what it took to manage whatever it was they had wrong with them.
Today, diabetic nutritionists will tell you it's perfectly ok to have something sweet once in awhile. And I hear mom say, "yes, go ahead, eat it....and they will cut off your foot!" Everyone seems to sugarcoat the seriousness of this disease. And I think that's what's allowed my husband to remain in denial for so long.
How often has he said to me, "the doctor said I can eat anything I want."How often has he eaten a whole bag of twix bars in one setting? He has not exercised in the last 3 years. And I think it's because no one said to him, "go ahead, do that.....and they will be cutting off your foot!!!"
If we don't teach our children to look before they cross a street, they are going to get hit by a car one day. If we don't discipline them when they dart out into a street, there's a good chance they will get hit by a car. If you don't remove all the sweets, sugars, fat, etc., from your house, you are allowing your spouse (family member) to walk out into the street. And if you see them eating a candy bar or french fries, make sure you say to them, "Go ahead! One day they are going to cut your chest open right down the middle, rip your ribcage wide open, and do some bypasses and punctures into your heart!"
We really have to get those with diabetes to start thinking about what they are doing to themselves. And what they are doing to their spouses and families. We need to be blunt. You know, yank the ice cream cone out of their hand and smash it to the ground! I still say a person can give up sugar completely and totally. Not just baked goods, but other items that have a high sugar content in them! I know because I've done it. My hubby never gets offered anything sweet. Nothing with white flour in it. No potatoes. He was a bit upset when I pointed out that clam chowder has potatoes in it!
We have done this together, in phases.
Phase 1 - cut out all sugar,all baked goods, started this on December 26
Phase 2 - cut out all white flour, white potatoes
Phase 3 - reduce sodium to under 2000 per day (this is our current phase)
Phase 4 - cut out all sodas (we've started this phase as well. I haven't had any soda since December 26 and he is down to 1 can a day.
Phase 5 - reduce calories.
We decided that if we are giving up certain foods, we should be able to eat what we want of what's left that we can have. That has helped. But in 2 weeks, we start counting calories, sodium, fat.....we are going to do this.
Do you think I hate it? Beyond words! But I love him and want him around and know that if I don't do this, he won't. I know that if I don't get up in the morning and get on the treadmill, he won't. So, as his spouse, I probably have had to have more discipline than he does. So sad that it took open heart surgery to get him to see the light. Beyond words sad.
So no nice words today. No sugar coating anything. No making you feel good about anything. Just go back and look at yesterdays numbers and look at the number you circled, then decide how much discipline you have. Take it upon yourself - don't put that burden on your spouse. Just do it.
DW
They did not beat around the bush. They did not sugar-coat much of anything in life. They were honest people. God-fearing Christians. They did not spare the rod. The child was not spoiled. I grew up in a house with no TV. Ever! We rode horses, played in the barn, learned about life by watching farm animals and product growing in the fields.
Today, we have become such a sympathetic society. We sugar coat everything. We never spank our children. We rarely raise our voices to them. We entertain them more that we educate them. We try our best to make everything sound nice. We don't talk much about what is going on in the whole world - most of us are limited to what's going on in our neighborhood, our own town, perhaps even our state. We don't have much of a global vison about anything.
And we stuff anything into our kids to hush them up. We reward them with sugar. Every holiday or event is a reason to serve up sugar. On the news tonight they said this is the first generation that will live a shorter lifespan than their parents. How sad is that?
I think diabetes is the same thing. Mom was a visiting nurse when I was a kid. I remember her going to homes of people with diabetes. She would say to them, "if you keep eating all that chocolate they are going to have to cut off your foot." She did not mince words. Ever. She didn't tell them when it would happen, she just told them that it would. At church, they would take food to the shut-ins. Mom would never allow them to take sweets to a diabetic. She was quite adamant about that. She wasn't nice when it came to someone else's disease. It wasn't just diabetes....it was anything. She took the time to teach people how to take care of themselves, what to eat, how to change dressings. She was a wonderful caregiver. But she had no patience with people who did not do what it took to manage whatever it was they had wrong with them.
Today, diabetic nutritionists will tell you it's perfectly ok to have something sweet once in awhile. And I hear mom say, "yes, go ahead, eat it....and they will cut off your foot!" Everyone seems to sugarcoat the seriousness of this disease. And I think that's what's allowed my husband to remain in denial for so long.
How often has he said to me, "the doctor said I can eat anything I want."How often has he eaten a whole bag of twix bars in one setting? He has not exercised in the last 3 years. And I think it's because no one said to him, "go ahead, do that.....and they will be cutting off your foot!!!"
If we don't teach our children to look before they cross a street, they are going to get hit by a car one day. If we don't discipline them when they dart out into a street, there's a good chance they will get hit by a car. If you don't remove all the sweets, sugars, fat, etc., from your house, you are allowing your spouse (family member) to walk out into the street. And if you see them eating a candy bar or french fries, make sure you say to them, "Go ahead! One day they are going to cut your chest open right down the middle, rip your ribcage wide open, and do some bypasses and punctures into your heart!"
We really have to get those with diabetes to start thinking about what they are doing to themselves. And what they are doing to their spouses and families. We need to be blunt. You know, yank the ice cream cone out of their hand and smash it to the ground! I still say a person can give up sugar completely and totally. Not just baked goods, but other items that have a high sugar content in them! I know because I've done it. My hubby never gets offered anything sweet. Nothing with white flour in it. No potatoes. He was a bit upset when I pointed out that clam chowder has potatoes in it!
We have done this together, in phases.
Phase 1 - cut out all sugar,all baked goods, started this on December 26
Phase 2 - cut out all white flour, white potatoes
Phase 3 - reduce sodium to under 2000 per day (this is our current phase)
Phase 4 - cut out all sodas (we've started this phase as well. I haven't had any soda since December 26 and he is down to 1 can a day.
Phase 5 - reduce calories.
We decided that if we are giving up certain foods, we should be able to eat what we want of what's left that we can have. That has helped. But in 2 weeks, we start counting calories, sodium, fat.....we are going to do this.
Do you think I hate it? Beyond words! But I love him and want him around and know that if I don't do this, he won't. I know that if I don't get up in the morning and get on the treadmill, he won't. So, as his spouse, I probably have had to have more discipline than he does. So sad that it took open heart surgery to get him to see the light. Beyond words sad.
So no nice words today. No sugar coating anything. No making you feel good about anything. Just go back and look at yesterdays numbers and look at the number you circled, then decide how much discipline you have. Take it upon yourself - don't put that burden on your spouse. Just do it.
DW
Saturday, March 20, 2010
Part 2, the Journey
I think it was his second night in ICU. They took his oxygen off and put on his cpap. Sometime in the middle of the night, he woke up and couldn't breathe. His oxygen saturation had dropped and this was compounded by the fact that he had to lay flat on his back and he always sleeps on his side with the cpap. He couldn't roll to his side, he couldn't get up. He said he was gasping for air.
He panicked. He went into a major anxiety attack. He rang the call button. The nurses came and put him back on oxygen, but that fear he was in kept him awake all night long. He didn't call me because he didn't want to wake me up. I felt horrible when he told me the next day and made him promise to call me any time. We also arranged to have the phone put on his bedtray at night so he could call. I think it was day 4 that he decided to keep his iphone in his pocket. And he did use it to call me whenever I wasn't there. Once he got moved to the heart unit, he had a privat room and I could be there from 8 am to 8 pm. I think it's ok that they ask family to go home at night. I was able to keep up with my rest and he was resting knowing that I was taking care of myself.
Because of that incident, he stayed on oxygen for the next 5 days. I'm pretty sure he was scared to death to take it off. Even during the day when the nurses asked, he did not want to take it off. They slowly started lowering the amount he was getting and he realized in time what was happening and that he was breathing just fine.
I can't fathom the fear that he must have had. To be alone in a hospital room (thank goodness he was still in the ICU unit), have no one in the world with you, wake up from sleeping, and not be able to breathe. It must have been a horrible experience. He has talked about it a few times and said he never wanted to go through that again.
The next night was the longest. He called me several times and I knew he was afraid to go to sleep. I just kept reassuring him that he was back on oxygen and didn't have a thing to worry about. I'm sure that was easy for me to say and hard for him to accept.
On the upside of it, I think it made him a better patient. I think it made him listen to his own body a little harder. He said he didn't think he was ready for the cpap but they wanted him to try it. After that, he would say "no" to anything he didn't think he was ready for. So that is good.
Because he has spinal stenosis, walking was almost impossible. But he did so well. He did 300 feet the 3rd and 4th days, 4 times a day. I noticed that even with the oxygen while walking, if he started to get a little winded, he would turn around and head right back to his room. I know he was still afraid of not being able to breathe. I did many of the walks with him, counting steps. Some days were 400 ft, some were 100 ft. The staff was ever so supportive of him and encouraging with each little improvement. Since coming home, he has continued his walking - about 400 ft, 5 minutes, 4 times a day. Now, to a normal person, that might seem so minimal, but it is more than he has done in 3 years, so I think it's wonderful!
Ever stop to think about the fear of falling down while walking just after you've had open heart surgery? The Physical Therapist talked to us about that. And the fear of having a car wreck on the way home. I don't think I ever drove so slow in my life! LOL!!! And we are being pretty cautious about how he walks here at home.
DW
He panicked. He went into a major anxiety attack. He rang the call button. The nurses came and put him back on oxygen, but that fear he was in kept him awake all night long. He didn't call me because he didn't want to wake me up. I felt horrible when he told me the next day and made him promise to call me any time. We also arranged to have the phone put on his bedtray at night so he could call. I think it was day 4 that he decided to keep his iphone in his pocket. And he did use it to call me whenever I wasn't there. Once he got moved to the heart unit, he had a privat room and I could be there from 8 am to 8 pm. I think it's ok that they ask family to go home at night. I was able to keep up with my rest and he was resting knowing that I was taking care of myself.
Because of that incident, he stayed on oxygen for the next 5 days. I'm pretty sure he was scared to death to take it off. Even during the day when the nurses asked, he did not want to take it off. They slowly started lowering the amount he was getting and he realized in time what was happening and that he was breathing just fine.
I can't fathom the fear that he must have had. To be alone in a hospital room (thank goodness he was still in the ICU unit), have no one in the world with you, wake up from sleeping, and not be able to breathe. It must have been a horrible experience. He has talked about it a few times and said he never wanted to go through that again.
The next night was the longest. He called me several times and I knew he was afraid to go to sleep. I just kept reassuring him that he was back on oxygen and didn't have a thing to worry about. I'm sure that was easy for me to say and hard for him to accept.
On the upside of it, I think it made him a better patient. I think it made him listen to his own body a little harder. He said he didn't think he was ready for the cpap but they wanted him to try it. After that, he would say "no" to anything he didn't think he was ready for. So that is good.
Because he has spinal stenosis, walking was almost impossible. But he did so well. He did 300 feet the 3rd and 4th days, 4 times a day. I noticed that even with the oxygen while walking, if he started to get a little winded, he would turn around and head right back to his room. I know he was still afraid of not being able to breathe. I did many of the walks with him, counting steps. Some days were 400 ft, some were 100 ft. The staff was ever so supportive of him and encouraging with each little improvement. Since coming home, he has continued his walking - about 400 ft, 5 minutes, 4 times a day. Now, to a normal person, that might seem so minimal, but it is more than he has done in 3 years, so I think it's wonderful!
Ever stop to think about the fear of falling down while walking just after you've had open heart surgery? The Physical Therapist talked to us about that. And the fear of having a car wreck on the way home. I don't think I ever drove so slow in my life! LOL!!! And we are being pretty cautious about how he walks here at home.
DW
Friday, March 19, 2010
Remembering the journey
It's been 9 days since he had his bypass surgery. And in all that time, I haven't had the time to sit down and write about the actual surgery. So if your spouse is headed that way, know that you will be completely consumed with his care. Hospitals no longer provide in home care. They spend a couple of hours teaching someone in the family what to do. I never wanted to be a nurse...but guess what - I can't think of much that a nurse would do that I haven't done this week!
We woke up at 4 am to leave at 4:30 am to arrive at the hospital at 5:30 am. His surgery was scheduled for 8 am, so he was in pre-op for 2 1/2 hours and he says they were working on him non-stop. I got to go in for 5 minutes to say good bye. I can't tell you how heart wrenching that is. You just don't know what is going to happen. They had explained it to us step-by-step...with all the possible outcomes including death. But when the moment arrives, you realize that while you know all the possibilities, you don't have a clue as to what is really going to happen.
I haven't written about my religious beliefs, but they are quite strong and I was surrounded by family who were in constant prayer the entire 5 1/2 hours of surgery. I literally felt the presence of God in our midst. Yet at the same moment I felt His peace, I still felt the anxiety if the nurse wasn't out to give her report the moment she said she would be.
The first report came at 9:30 am when they had finished harvesting his veins. I remember thinking, "1 1/2 hours to pull a vein out of his leg? We are going to be here forever!" I refused to leave the room. I didn't eat. I didn't even think about eating. I think I sat there just praying. Family members would talk to me, carry on conversations....but I swear, I can't remember what they said. I was focused on one thing only - my husbands success. Well, perhaps the surgeon's success is a better way to say that.
At 11 am, the nurse returned and said they had done 3 bypasses and a TMR. I had absolutely no idea what a TMR was and she tried to explain it to me, but I think my brain had shut down from stress at that time. I remember she said something about poking 9 holes in his heart. I think because we had not discussed this before hand....that I just went into shock. After all, hearing that someone has had 9 holes poked in their heart...ok, they really should bring the needle out and show you how tiny 1 mm is, because my brain is thinking horse needle at this point!
So, for the next 2 1/2 hours, I sat there in a panic. I had this vision of blood gushing out of his heart. I did not know that the blood clots the moment the microscopic needle is removed. No one bothered to explain that to me. At 1:30, the nurse came out and said he was all stitched up and the doctor would be out shortly. So my brother decided that we would record the conversation on my iphone. I still have not listened to it. I don't know when I will be able to.
The surgeon was wonderful. He took my brother and I into a private room. I know the rest of the family wanted to be there, but my brother is my rock. The surgeon (finally) explained what a TMR was and why they had to do that instead of the 4th and 5th bypasses that were planned. High blood sugars had caused his arteries to corode...constrict...and in many places, completely close off. So 100% blockage with not even enough healthy vein to attach a graft to. The surgeon had sketches and showed us exactly where the 3 grafts were done and where the punches were made. He kindly and gently explained how these punches will generate blood flow that will create new capillaries that will improve his blood flow. He said that he was pumping 3 L of blood per minute before surgery and that increased to 5 L per minute after the surgery.
I think I was able to listen because I knew we were recording it. But it helped to have the diagrams as well. And he said, "now, go eat!" And just like a robot, I ate. But again, no idea what I ate. I just did what someone told me to do. Sort of numb, suspended, not thinking yet not not thinking - if that makes sense.
It was about 3:30 pm when we got to go into post op to see him. He was still on a ventilator. That was pretty hard to handle. I stood there and stroked his forehead because that was literally the only place I could touch that didn't have a needle, tape, something else covering him up. His arms were strapped to the bed to prevent him from yanking the tube out of his mouth. He finally responded to my voice by shaking his head yes. But mostly he was asleep.
He says he doesn't remember a thing until his son left which was about 7:30 pm. I'm grateful for that. It was 5:30 before they took him off the ventilator. Family could not be in the room during shift change between 6 and 8 pm, but they did let his son in. I went back at 8 pm and stayed for another hour before going home. They don't allow family to stay after 8 pm. He went to ICU about 7 pm. It was literally the longest day of my life. Physically getting up at 4 am, mentally sitting in the surgery waiting room, wondering each moment of each second what was happening down the hall, worry beyond comprehension, relief I have never experienced each time the nurse came out with a good report, and then sheer exhaustion after talking to the surgeon and knowing all was well for the moment.
If you ever have to go through this, just make sure you surround yourself with family, people you love and that love you, and put your trust in God. I had asked for nerves of steel and they kicked in the moment I saw him in post op. I'm the type that gets sick to their stomach at the sight of a needle. Yet in that room, with all those machines, constant beeping, him on the ventilator....I didn't even flinch. That in itself was amazing.
He has no idea....and will never know....what he put me through that day. I realize that the physical side of what he went through was extreme, but the emotional side of waiting and worrying was what I had to endure. I had moments of anger. I "saw" him sitting on the sofa, eating an entire bag of potato chips and thinking that if he had taken care of himself, neither of us would have been there. I had moments of "survival" when I would tell myself that if he ever eats a single potato chip again, I will leave him. I think that's what those thoughts were....survival. Ways to get through the day, past the moment, escape the constant worry. It felt like being on a merry-go-round and a roller coaster at the same time.
Enough for tonight. I wonder how long it will be before I can listen to the doctor's conversation. I haven't even told hubby we have it recorded. He needs to heal a bit more.
If you have a diabetic spouse, read this to them. Let them know they could be here sooner than they think. Remember, my husband had a normal A1c until last Thanksgiving and this damage did not happen in the last 3 months. It's been happening every single time he had a high. I may just have to change the name of this blog and call it "the ugly truth about diabetes". You can choose to be just like him and deny that you have a problem with your diabetes. Or you can step up to the plate and test yourself 10 times a day and know how often you are actually going high. You can change your diet now. You can start to exercise today. Because if you don't, you are going to put your spouse through this very same scenario. And you might not be as lucky as my husband is. Trust me, I know that each day I have with him from now on is nothing short of a gift.
DW
We woke up at 4 am to leave at 4:30 am to arrive at the hospital at 5:30 am. His surgery was scheduled for 8 am, so he was in pre-op for 2 1/2 hours and he says they were working on him non-stop. I got to go in for 5 minutes to say good bye. I can't tell you how heart wrenching that is. You just don't know what is going to happen. They had explained it to us step-by-step...with all the possible outcomes including death. But when the moment arrives, you realize that while you know all the possibilities, you don't have a clue as to what is really going to happen.
I haven't written about my religious beliefs, but they are quite strong and I was surrounded by family who were in constant prayer the entire 5 1/2 hours of surgery. I literally felt the presence of God in our midst. Yet at the same moment I felt His peace, I still felt the anxiety if the nurse wasn't out to give her report the moment she said she would be.
The first report came at 9:30 am when they had finished harvesting his veins. I remember thinking, "1 1/2 hours to pull a vein out of his leg? We are going to be here forever!" I refused to leave the room. I didn't eat. I didn't even think about eating. I think I sat there just praying. Family members would talk to me, carry on conversations....but I swear, I can't remember what they said. I was focused on one thing only - my husbands success. Well, perhaps the surgeon's success is a better way to say that.
At 11 am, the nurse returned and said they had done 3 bypasses and a TMR. I had absolutely no idea what a TMR was and she tried to explain it to me, but I think my brain had shut down from stress at that time. I remember she said something about poking 9 holes in his heart. I think because we had not discussed this before hand....that I just went into shock. After all, hearing that someone has had 9 holes poked in their heart...ok, they really should bring the needle out and show you how tiny 1 mm is, because my brain is thinking horse needle at this point!
So, for the next 2 1/2 hours, I sat there in a panic. I had this vision of blood gushing out of his heart. I did not know that the blood clots the moment the microscopic needle is removed. No one bothered to explain that to me. At 1:30, the nurse came out and said he was all stitched up and the doctor would be out shortly. So my brother decided that we would record the conversation on my iphone. I still have not listened to it. I don't know when I will be able to.
The surgeon was wonderful. He took my brother and I into a private room. I know the rest of the family wanted to be there, but my brother is my rock. The surgeon (finally) explained what a TMR was and why they had to do that instead of the 4th and 5th bypasses that were planned. High blood sugars had caused his arteries to corode...constrict...and in many places, completely close off. So 100% blockage with not even enough healthy vein to attach a graft to. The surgeon had sketches and showed us exactly where the 3 grafts were done and where the punches were made. He kindly and gently explained how these punches will generate blood flow that will create new capillaries that will improve his blood flow. He said that he was pumping 3 L of blood per minute before surgery and that increased to 5 L per minute after the surgery.
I think I was able to listen because I knew we were recording it. But it helped to have the diagrams as well. And he said, "now, go eat!" And just like a robot, I ate. But again, no idea what I ate. I just did what someone told me to do. Sort of numb, suspended, not thinking yet not not thinking - if that makes sense.
It was about 3:30 pm when we got to go into post op to see him. He was still on a ventilator. That was pretty hard to handle. I stood there and stroked his forehead because that was literally the only place I could touch that didn't have a needle, tape, something else covering him up. His arms were strapped to the bed to prevent him from yanking the tube out of his mouth. He finally responded to my voice by shaking his head yes. But mostly he was asleep.
He says he doesn't remember a thing until his son left which was about 7:30 pm. I'm grateful for that. It was 5:30 before they took him off the ventilator. Family could not be in the room during shift change between 6 and 8 pm, but they did let his son in. I went back at 8 pm and stayed for another hour before going home. They don't allow family to stay after 8 pm. He went to ICU about 7 pm. It was literally the longest day of my life. Physically getting up at 4 am, mentally sitting in the surgery waiting room, wondering each moment of each second what was happening down the hall, worry beyond comprehension, relief I have never experienced each time the nurse came out with a good report, and then sheer exhaustion after talking to the surgeon and knowing all was well for the moment.
If you ever have to go through this, just make sure you surround yourself with family, people you love and that love you, and put your trust in God. I had asked for nerves of steel and they kicked in the moment I saw him in post op. I'm the type that gets sick to their stomach at the sight of a needle. Yet in that room, with all those machines, constant beeping, him on the ventilator....I didn't even flinch. That in itself was amazing.
He has no idea....and will never know....what he put me through that day. I realize that the physical side of what he went through was extreme, but the emotional side of waiting and worrying was what I had to endure. I had moments of anger. I "saw" him sitting on the sofa, eating an entire bag of potato chips and thinking that if he had taken care of himself, neither of us would have been there. I had moments of "survival" when I would tell myself that if he ever eats a single potato chip again, I will leave him. I think that's what those thoughts were....survival. Ways to get through the day, past the moment, escape the constant worry. It felt like being on a merry-go-round and a roller coaster at the same time.
Enough for tonight. I wonder how long it will be before I can listen to the doctor's conversation. I haven't even told hubby we have it recorded. He needs to heal a bit more.
If you have a diabetic spouse, read this to them. Let them know they could be here sooner than they think. Remember, my husband had a normal A1c until last Thanksgiving and this damage did not happen in the last 3 months. It's been happening every single time he had a high. I may just have to change the name of this blog and call it "the ugly truth about diabetes". You can choose to be just like him and deny that you have a problem with your diabetes. Or you can step up to the plate and test yourself 10 times a day and know how often you are actually going high. You can change your diet now. You can start to exercise today. Because if you don't, you are going to put your spouse through this very same scenario. And you might not be as lucky as my husband is. Trust me, I know that each day I have with him from now on is nothing short of a gift.
DW
Wednesday, March 17, 2010
The UGHY truth!
I think you can think you are doing everything you can to keep your diabetes under control, but still be one of these numbers (below).
Numbers don't lie. They tell us the ugly truth about this disease.
I think you can have all the right labs, do all the right things, eat all the right foods, and still be one of these numbers in the works.
I think it depends on how long the disease has been with you. How often you test in order to find out if you are going high and low and averaging out to a good lab result. How much sugar you eat (remember I think a carb is NOT just a carb, that they put sugar in our bodies at different rates). How much exercise you get - in order to keep oxygen in your blood and flowing to all areas of your body.
I think you can think you are a "compliant" diabetic and you can still be one of these numbers.
It's only my thoughts, but if you take the time to read through all these statistics.....if these are just the "non-compliant" diabetics.....then there has to be a whole lot more spouses out there going through this than just me. Think about it, 1400 non-compliant diabetics die every week? I'm going to guess there are a whole lot of "compliant" diabetics in these statistics.
Just read each number and then ask the question, "Were these all non-compliant? How many were compliant? Could it be you next?"
So many diabetics send me comments like "this will never happen to me" or "these things don't have to happen to your husband" or "if he would take better care of himself, this wouldn't happen."
Ya think?
From Stop diabetes and the Diabetes Assoc
In the next 24 hours, diabetes will kill 200 people. That's 1400 people per week.
"Were these all non-compliant? How many were compliant? Could it be you next?"
72,507 died from it in 2006, but it contributed to 233,619 deaths in 2005.
"Were these all non-compliant? How many were compliant? Could it be you next?"
1 out of every 4 people who have diabetes, don't know they have it.
"are any of these people compliant?"
20% of the population is at risk for developing it. That means for every mother, father and 3 children, 1 of them is at risk.
"are any of these people compliant?"
Diabetes doubles your risk for heart attack and stroke.
"does it matter if you are compliant or not? They don't tell us"
23.6 million people in the US already have it and another 57 million are prediabetic
23% of people over 60 have diabetes
75% of adults with diabetes have high blood pressure
"are all 75% non-compliant?"
So just keep inserting those questions after each statistic:
It is the leading cause of blindness in adults. It casues 12,000 - 24,000 new cases each year.
In 2005, 46,739 people with diabetes became ESRD - end-stage kidney disease - living on dialysis.
60 -70% of people with diabetes have mild to severe forms of nervous system damage.
in 2004, 71,000 lower-limb amputations were performed in people with diabetes
Average medical expenditures are 2.3 times higher than non diabetics.
In 2007, the total cost of diabetes in the US was $218 BILLION
1 out of 3 children born in 2000 wil develop diabetes in their lifetime.
40% of people with diabetes suffer some degree of hearing impairment.
2/3 of those with diabetes die from a heart attack or stroke
23% have foot problems
28% develop chronic kidney disease
Which number are you?
Do you read my blog and think that none of this will ever happen to you? Probably might want to rethink that one! The numbers are just too great for me to believe that this only happens to people like my husband.
Do you read my blog and get angry because you don't think you could ever put your spouse into this position? Think again. How many of those 72,500 diabetics who died had a spouse? You can't believe all of them were non-compliant? They put their spouses through the very same fear, heartache, burden, nursing tasks, etc. that I am going through. Reread that line because that's the number that died from diabetes. Another 233,619 people died from something else with diabetes as a contributing factor.
Print this out. Post it on your refrigerator. Circle the number that you are. And start talking to your family about it now. Start preparing them. And if you can't circle the number you are, then start working on your own denial. Because if you already have diabetes, you already are a number. And that's the ugly truth!!!
DW
Numbers don't lie. They tell us the ugly truth about this disease.
I think you can have all the right labs, do all the right things, eat all the right foods, and still be one of these numbers in the works.
I think it depends on how long the disease has been with you. How often you test in order to find out if you are going high and low and averaging out to a good lab result. How much sugar you eat (remember I think a carb is NOT just a carb, that they put sugar in our bodies at different rates). How much exercise you get - in order to keep oxygen in your blood and flowing to all areas of your body.
I think you can think you are a "compliant" diabetic and you can still be one of these numbers.
It's only my thoughts, but if you take the time to read through all these statistics.....if these are just the "non-compliant" diabetics.....then there has to be a whole lot more spouses out there going through this than just me. Think about it, 1400 non-compliant diabetics die every week? I'm going to guess there are a whole lot of "compliant" diabetics in these statistics.
Just read each number and then ask the question, "Were these all non-compliant? How many were compliant? Could it be you next?"
So many diabetics send me comments like "this will never happen to me" or "these things don't have to happen to your husband" or "if he would take better care of himself, this wouldn't happen."
Ya think?
From Stop diabetes and the Diabetes Assoc
In the next 24 hours, diabetes will kill 200 people. That's 1400 people per week.
"Were these all non-compliant? How many were compliant? Could it be you next?"
72,507 died from it in 2006, but it contributed to 233,619 deaths in 2005.
"Were these all non-compliant? How many were compliant? Could it be you next?"
1 out of every 4 people who have diabetes, don't know they have it.
"are any of these people compliant?"
20% of the population is at risk for developing it. That means for every mother, father and 3 children, 1 of them is at risk.
"are any of these people compliant?"
Diabetes doubles your risk for heart attack and stroke.
"does it matter if you are compliant or not? They don't tell us"
23.6 million people in the US already have it and another 57 million are prediabetic
23% of people over 60 have diabetes
75% of adults with diabetes have high blood pressure
"are all 75% non-compliant?"
So just keep inserting those questions after each statistic:
It is the leading cause of blindness in adults. It casues 12,000 - 24,000 new cases each year.
In 2005, 46,739 people with diabetes became ESRD - end-stage kidney disease - living on dialysis.
60 -70% of people with diabetes have mild to severe forms of nervous system damage.
in 2004, 71,000 lower-limb amputations were performed in people with diabetes
Average medical expenditures are 2.3 times higher than non diabetics.
In 2007, the total cost of diabetes in the US was $218 BILLION
1 out of 3 children born in 2000 wil develop diabetes in their lifetime.
40% of people with diabetes suffer some degree of hearing impairment.
2/3 of those with diabetes die from a heart attack or stroke
23% have foot problems
28% develop chronic kidney disease
Which number are you?
Do you read my blog and think that none of this will ever happen to you? Probably might want to rethink that one! The numbers are just too great for me to believe that this only happens to people like my husband.
Do you read my blog and get angry because you don't think you could ever put your spouse into this position? Think again. How many of those 72,500 diabetics who died had a spouse? You can't believe all of them were non-compliant? They put their spouses through the very same fear, heartache, burden, nursing tasks, etc. that I am going through. Reread that line because that's the number that died from diabetes. Another 233,619 people died from something else with diabetes as a contributing factor.
Print this out. Post it on your refrigerator. Circle the number that you are. And start talking to your family about it now. Start preparing them. And if you can't circle the number you are, then start working on your own denial. Because if you already have diabetes, you already are a number. And that's the ugly truth!!!
DW
One week post op
I finally have a moment to post. One of these days I will tell the whole story. But in a nutshell, it was a success.
He was scheduled to have 5 bypasses. His arteries are shot. There was only enough good veins to do 3 bypasses. So then they did a TMR - something that's only been around since 2001. Punch microscopic holes in his heart to stimulate blood flow and create new capillaries. I googled it. Quite interesting. Not something the surgeon had mentioned beforehand. But perhaps a possible way to get blood flowing. 2 punches on the right side, 7 holes on the left side.
Surgery was 5 1/2 hours. It was another 4 hours before he was off the ventilator. The second night, they tried him with his cpap and his oxygen fell and he had an anxiety attack. So they left him on oxygen for 5 days. His intestines refused to start back into operation and had to be jump-started today. It has been a true rollercoaster ride with good days and bad days. Glucose has gone up to 350 and down to 60. No one at the hospital really understands humulin R U 500. The pharmacy can't seem to get it to the room til 11 am which is way too late in the day.
A train of doctors and nurses, lab workers coming to visit him. Dietitians can't seem to get a diabetic/heart menu figured out. They certainly don't do low glycemic there, but he is managing pretty well. His appetite comes and goes.
He is going to have a pretty serious schedule that next 12 weeks. We did our physical training yesterday. Yet he constantly forgets to move the way they want him to move. Simple things like he can't open a door - can't move one arm in one direction and not move the other in the same direction. Can't use his arms to get up from a chair with. I sure hope he learns soon!
The great news is that he made it through surgery. Now on to recovery and then he decides how to handle his back. Again, 2010 is going to be an amazing year of change.
DW
He was scheduled to have 5 bypasses. His arteries are shot. There was only enough good veins to do 3 bypasses. So then they did a TMR - something that's only been around since 2001. Punch microscopic holes in his heart to stimulate blood flow and create new capillaries. I googled it. Quite interesting. Not something the surgeon had mentioned beforehand. But perhaps a possible way to get blood flowing. 2 punches on the right side, 7 holes on the left side.
Surgery was 5 1/2 hours. It was another 4 hours before he was off the ventilator. The second night, they tried him with his cpap and his oxygen fell and he had an anxiety attack. So they left him on oxygen for 5 days. His intestines refused to start back into operation and had to be jump-started today. It has been a true rollercoaster ride with good days and bad days. Glucose has gone up to 350 and down to 60. No one at the hospital really understands humulin R U 500. The pharmacy can't seem to get it to the room til 11 am which is way too late in the day.
A train of doctors and nurses, lab workers coming to visit him. Dietitians can't seem to get a diabetic/heart menu figured out. They certainly don't do low glycemic there, but he is managing pretty well. His appetite comes and goes.
He is going to have a pretty serious schedule that next 12 weeks. We did our physical training yesterday. Yet he constantly forgets to move the way they want him to move. Simple things like he can't open a door - can't move one arm in one direction and not move the other in the same direction. Can't use his arms to get up from a chair with. I sure hope he learns soon!
The great news is that he made it through surgery. Now on to recovery and then he decides how to handle his back. Again, 2010 is going to be an amazing year of change.
DW
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