It's sort of a countdown around here. A very different type of rollercoaster ride. We have our good moments and our rough ones. He is obviously scared. As am I. But we are talking our way through it. I think we have finished with the last of the "business" stuff. We have things set up so I can take over finances if he has to stay in the hospital more than a couple of weeks. We have a system to notify family and friends of his progress. Tomorrow will be fun. We have family coming in and then a dinner with friends. Enough to keep both of our minds off the next morning.
He seems to be way too worried about me, so I interpret that to mean he is worried about himself. But if it helps him to get through this by worrying about me, that's fine, too.
I don't know what I would do if I were in his shoes. The very thought of them cutting open his chest is horrifying. I know they do it all the time....but they do it to other people all the time, not to him. And I think he is having some of the very same feelings.
We sat together for awhile this afternoon and talked some more about our future plans. Things we are both afraid of when he gets back home to recover. I'm glad we are talking about the future. I'm afraid he's not going to want to go to physical therapy. He said, "I know I'm not going to want to go!" and then he laughed and said that I would just have to make him go.
I said I was afraid he would be on the phone with work before the first month is up. I warned him that I will unplug the phones and take his cell away from him. He laughed. But at least he knows what I'm worrying about.
While he's in the hospital, I plan to strip our bedroom and clean it from top to bottom. Get all the pet hairs out of it. I don't want him to risk getting an infection. If the doctor suggests that the pups not be in the bed with him, I'll go find a carrier that they can be in when they are in the room with him. I do think they are going to be his best therapy - even if all he can do is pet them from a distance.
Thank you for your prayers. While I know that Thursday is going to be an incredibly long day, I know that we will get through it. Family will be there with us and that will make time pass a little quicker.
I'm still doing stupid things. I think I'm ok, then I realize there was no need to take the trash out to the curb - trash day is tomorrow, not today. LOL!
DW
Tuesday, March 09, 2010
Monday, March 08, 2010
emotions
He has a new meter that has a software package and cable to upload tests to his laptop, drop them into a spreadsheet and allow him to email them to his doctor. He is testing 7 times a day.....at the specific time requested on the spreadsheet. That requires that he eat at specific times - which he is trying hard to do.
Why didn't he do this 25 years ago??? Why did it take a quintuple bypass surgery to get him here?
And that's sort of where I am today in my own emotions. A whole lot of whys. And while I know there are no answers for my "whys".....I still have to go through the process of asking them.
I didn't sleep at all last night and this morning, it's already 8:30 am, and I don't wnat to get up. I don't want to move forward. I don't want the days to progress. I made a "to do" list for exactly this moment and I don't even want to look at it.
He had a rough evening yesterday. I laid next to him, holding him, saying all the right words to comfort him. And it seems to have worked because before we went to sleep he said thanks and told me that it had helped.
But while I was saying all the right words to him, my own brain was asking all the questions.
It is completely impossible to be angry with him at the moment. Yet I am. Or perhaps the anger has dissolved to a sense of fate - that this is out of my hands - but why didn't he do the right thing 25 years ago?
I have always said that I would not drive him to dialysis....but is this different? I am driving him to all of his appointments.
And then the "what ifs". What if they can't find enough healthy veins to do all the bypasses he needs? What if they can't get his heart to fire back up when they ae done? The list is endless I know they are all typical questions that every other spouse has asked and I know there are no answers because we simply can't predict the future.
And then my biggest question. How can I help you so that your spouse doesn't lead you down this path? And I still don't know the answer to that one. Because if they are like my husband.....they won't make any changes. I even doubt if this had been someone else's blog and I had read it to him if he would have made any changes. Again, I think he has been in denial over so much of his diabetes for so many years.....and now he is getting his eyes opened overnight.
Is he afraid of death? I think his fear of pain that they cannot relieve is his greatest fear. I've tried to reassure him that medicine has come along way and that all he has to do is tell them that he still has pain and they will give him something for it. If he can calm that single fear, then I think he will do a whole lot better.
So what next? I am going to force myself to get up, shower, get dressed, and then put one foot in front of the other and walk my way through the day.
But I'd sure just rather stay in bed.
DW
Why didn't he do this 25 years ago??? Why did it take a quintuple bypass surgery to get him here?
And that's sort of where I am today in my own emotions. A whole lot of whys. And while I know there are no answers for my "whys".....I still have to go through the process of asking them.
I didn't sleep at all last night and this morning, it's already 8:30 am, and I don't wnat to get up. I don't want to move forward. I don't want the days to progress. I made a "to do" list for exactly this moment and I don't even want to look at it.
He had a rough evening yesterday. I laid next to him, holding him, saying all the right words to comfort him. And it seems to have worked because before we went to sleep he said thanks and told me that it had helped.
But while I was saying all the right words to him, my own brain was asking all the questions.
It is completely impossible to be angry with him at the moment. Yet I am. Or perhaps the anger has dissolved to a sense of fate - that this is out of my hands - but why didn't he do the right thing 25 years ago?
I have always said that I would not drive him to dialysis....but is this different? I am driving him to all of his appointments.
And then the "what ifs". What if they can't find enough healthy veins to do all the bypasses he needs? What if they can't get his heart to fire back up when they ae done? The list is endless I know they are all typical questions that every other spouse has asked and I know there are no answers because we simply can't predict the future.
And then my biggest question. How can I help you so that your spouse doesn't lead you down this path? And I still don't know the answer to that one. Because if they are like my husband.....they won't make any changes. I even doubt if this had been someone else's blog and I had read it to him if he would have made any changes. Again, I think he has been in denial over so much of his diabetes for so many years.....and now he is getting his eyes opened overnight.
Is he afraid of death? I think his fear of pain that they cannot relieve is his greatest fear. I've tried to reassure him that medicine has come along way and that all he has to do is tell them that he still has pain and they will give him something for it. If he can calm that single fear, then I think he will do a whole lot better.
So what next? I am going to force myself to get up, shower, get dressed, and then put one foot in front of the other and walk my way through the day.
But I'd sure just rather stay in bed.
DW
Sunday, March 07, 2010
The numbers game
If you have an average blood glucose, you A1c should be 5.0. This means thatyour blood glucose averages 101 over time. So we are going to start with that for the purpose of this example.
Let's say your A1c is 5.0. Does that mean you are always at 101? Of course not. It's just an average.
If you test over a day something like this:
8: am 170
11 am 120
2 pm 40
5 pm 70
8 pm 100
That totals 500. Divide that by 5 tests, your average for that day is 100.
Your A1c would come in at 5.0.
But that 120 and the 170 could be doing damage.
Let's expand that over a 24 hour period.
Let's say that at midnight, you are at 300
at 4 am, you are at 50
at 8 am, you are at 90
at 11 am, you are at 60
at 2 pm, you are at 90
at 5pm, you are at 90
at 8 pm, you are at 90
The total here is 770. Divide that by 7 and your score is 110. Still probably a good A1c of 5.0
But that 300 is bound to uspet something.
And if you do this every single day.....go high and then go low....yet have a good A1c, how would you ever know if you are not testing 24 hours a day.
Because my husband has lows during the day and always had a good A1c - it was my indication that he had to be going high at night. Yet he would never test. And....the doctors never asked a question. Because his A1c was always good.
That 300 that he must have been hitting at last once a day.....is exactly what got him to this point. Where he now needs to have 5 bypasses. High sugar in the blood will eat the arteries right up.
With a good A1c, a diabetic like my husband will tell you there is no reason to test. Why should he? There is nothing wrong. Blood sugars are under control. A1c is averate.
So learn from his experience. It's just a numbers game. Unless you do your own person A1c, test every single day, get up at midnight ant test, get up at 4 am and test.......get and average and then compare that to you A1c, you will never have a clue about what might be going on inside of your body.
The numbers game. It could be "your" number if you don't test multiple times a day.
DW
Let's say your A1c is 5.0. Does that mean you are always at 101? Of course not. It's just an average.
If you test over a day something like this:
8: am 170
11 am 120
2 pm 40
5 pm 70
8 pm 100
That totals 500. Divide that by 5 tests, your average for that day is 100.
Your A1c would come in at 5.0.
But that 120 and the 170 could be doing damage.
Let's expand that over a 24 hour period.
Let's say that at midnight, you are at 300
at 4 am, you are at 50
at 8 am, you are at 90
at 11 am, you are at 60
at 2 pm, you are at 90
at 5pm, you are at 90
at 8 pm, you are at 90
The total here is 770. Divide that by 7 and your score is 110. Still probably a good A1c of 5.0
But that 300 is bound to uspet something.
And if you do this every single day.....go high and then go low....yet have a good A1c, how would you ever know if you are not testing 24 hours a day.
Because my husband has lows during the day and always had a good A1c - it was my indication that he had to be going high at night. Yet he would never test. And....the doctors never asked a question. Because his A1c was always good.
That 300 that he must have been hitting at last once a day.....is exactly what got him to this point. Where he now needs to have 5 bypasses. High sugar in the blood will eat the arteries right up.
With a good A1c, a diabetic like my husband will tell you there is no reason to test. Why should he? There is nothing wrong. Blood sugars are under control. A1c is averate.
So learn from his experience. It's just a numbers game. Unless you do your own person A1c, test every single day, get up at midnight ant test, get up at 4 am and test.......get and average and then compare that to you A1c, you will never have a clue about what might be going on inside of your body.
The numbers game. It could be "your" number if you don't test multiple times a day.
DW
Saturday, March 06, 2010
The insensitivity of others
Everyone came today to visit my husband. I almost had to laugh outloud. His son did not call him on his birthday. Did not bother to call him on Father's Day, but now claims he is going to be in pre-op with him for surgery. I told him they had said I would be the only one allowed in pre-op. He said, "I don't care!"
This son has 2 kids. My husband adores them. The youngest one is 3 years old. Before today, he had spent 6 hours with her in her entire life. We are not invited to anything because hubby's ex-wife gets invited to all the family functions and her husband has said he will not be in the same room with us. He has never met us. Not once. So he made that choice from whatever hubby's ex-wife told him. We are excluded from everything.
His daughter came today. She said, "you got a new refrigerator!" I said, "Yes, 3 years ago!" So it has been that long since she has come to visit him. She lives 2 hours away. But at least she does remember to call on the important dates.
They seem to have no use for him, no desire to be with him, yet now that he is going in for surgery.....they are here.
His parents have not been to visit him at his home since 1982. They are insisting on driving up for surgery. I am still hoping he can talk them out of it. They do not need to see him after surgery -he is going to have so many IVs in him - and they are not in the best of health as it is.
Now, don't misunderstand me. It's not that I don't want them all to surround him with their love and support - it's just that one has to ask, where have they been the last 12 years? Why haven't they surrounded him with their love and support prior to this? Is it just for show? Is it a sense of "duty"?
I feel certain the only reason his parents are making the drive up is to be the center of attention. In all the years I have known them, it has been their single goal. And if it doesn't happen, they will make such a scene, that it does happen. She has trigeminal neuralgia and will literally go into a fit of schrill screams when the "pain" becomes more than she can handle. Exactly what we need in an ICU waiting room! He is diabetic and will go low at the drop of a pin and have to go to ER. We need that in ICU as well!
When his own father had a triple bypass, he had to fly to be with him because his mom wouldn't make the 3 hour drive to be with him. Yet she will take 3 days to drive here to be with my husband? Makes absolutely no sense to me. Unless it really is that she wants to make a scene.
So I am calling in the troops! 2 of my sisters, a brother-in-law and my brother will all be here to assist and help with his family so I can focus on being with him. Hubby and I have talked it all out and he agrees that I don't need to be spending time getting food, water, etc. for his family or trying to make them comfortable, my family can do all that for me. And they will do it gladly. They absolutely adore hubby, call him all the time, include him in everything.
I wish family would simply be consistent in their relationships. If you never come visit him.....don't make a show and be here for surgery like this. If you want to be included in surgery, then include him in all your other activities. Seems pretty simple to me.
Guess I just needed to vent today.
DW
This son has 2 kids. My husband adores them. The youngest one is 3 years old. Before today, he had spent 6 hours with her in her entire life. We are not invited to anything because hubby's ex-wife gets invited to all the family functions and her husband has said he will not be in the same room with us. He has never met us. Not once. So he made that choice from whatever hubby's ex-wife told him. We are excluded from everything.
His daughter came today. She said, "you got a new refrigerator!" I said, "Yes, 3 years ago!" So it has been that long since she has come to visit him. She lives 2 hours away. But at least she does remember to call on the important dates.
They seem to have no use for him, no desire to be with him, yet now that he is going in for surgery.....they are here.
His parents have not been to visit him at his home since 1982. They are insisting on driving up for surgery. I am still hoping he can talk them out of it. They do not need to see him after surgery -he is going to have so many IVs in him - and they are not in the best of health as it is.
Now, don't misunderstand me. It's not that I don't want them all to surround him with their love and support - it's just that one has to ask, where have they been the last 12 years? Why haven't they surrounded him with their love and support prior to this? Is it just for show? Is it a sense of "duty"?
I feel certain the only reason his parents are making the drive up is to be the center of attention. In all the years I have known them, it has been their single goal. And if it doesn't happen, they will make such a scene, that it does happen. She has trigeminal neuralgia and will literally go into a fit of schrill screams when the "pain" becomes more than she can handle. Exactly what we need in an ICU waiting room! He is diabetic and will go low at the drop of a pin and have to go to ER. We need that in ICU as well!
When his own father had a triple bypass, he had to fly to be with him because his mom wouldn't make the 3 hour drive to be with him. Yet she will take 3 days to drive here to be with my husband? Makes absolutely no sense to me. Unless it really is that she wants to make a scene.
So I am calling in the troops! 2 of my sisters, a brother-in-law and my brother will all be here to assist and help with his family so I can focus on being with him. Hubby and I have talked it all out and he agrees that I don't need to be spending time getting food, water, etc. for his family or trying to make them comfortable, my family can do all that for me. And they will do it gladly. They absolutely adore hubby, call him all the time, include him in everything.
I wish family would simply be consistent in their relationships. If you never come visit him.....don't make a show and be here for surgery like this. If you want to be included in surgery, then include him in all your other activities. Seems pretty simple to me.
Guess I just needed to vent today.
DW
Friday, March 05, 2010
Pre op visit
OK, I don't think either one of us were prepared for this. We met with a nurse this afternoon and sat as she explained what was going to happen. Starting the night before surgery - going thru til he comes home. She was graphic. She was explicit. She didn't leave out a single detail. We were there for about 1 1/2 hours. I can't even put it all down because I will get sick to my stomach again.
Yes - again! About an hour after we left her office, my husband got terribly ill. He said he didn't know what was going on, he just felt horribly sick to his stomach. About 10 minutes later I had the same wave come over me and as we talked about it, we realized it was a combination of nerves, and graphic images of what she had been talking about. We both had to lay down for a bit. AFter we had supper, we were a whole lot better.
Just the thought of a large needle going into his jugular vein....or wires coming out of his heart to hook him up to a pacemaker should arythmia set in.....and neither one of us handle hosptials very well to start out with.
I would have to say that we are probably just a little shell shocked this evening. The really good thing is that for the next 5 days - no doctors visits or labs....we don't have to look at anyone or do anything related to medical stuff. My sister and her husband came down tonight and will be here thru the weekend. The grandkids will be here tomorrow. It will be a good weekend and it will go past quickly.
He is havinga whole lot of lows today and I'm not happy about them. Nothing seems to be bringing them up. OK, peanut butter - nothing is bringing him up. So I suggested that he try to get ahold of someone tomorrow. It does worry me that he will go too low in the middle of the night.
So,other than being a nervous wreck and feeling like I want to puke my guts out....we're doing just fine! LOL!
DW
Yes - again! About an hour after we left her office, my husband got terribly ill. He said he didn't know what was going on, he just felt horribly sick to his stomach. About 10 minutes later I had the same wave come over me and as we talked about it, we realized it was a combination of nerves, and graphic images of what she had been talking about. We both had to lay down for a bit. AFter we had supper, we were a whole lot better.
Just the thought of a large needle going into his jugular vein....or wires coming out of his heart to hook him up to a pacemaker should arythmia set in.....and neither one of us handle hosptials very well to start out with.
I would have to say that we are probably just a little shell shocked this evening. The really good thing is that for the next 5 days - no doctors visits or labs....we don't have to look at anyone or do anything related to medical stuff. My sister and her husband came down tonight and will be here thru the weekend. The grandkids will be here tomorrow. It will be a good weekend and it will go past quickly.
He is havinga whole lot of lows today and I'm not happy about them. Nothing seems to be bringing them up. OK, peanut butter - nothing is bringing him up. So I suggested that he try to get ahold of someone tomorrow. It does worry me that he will go too low in the middle of the night.
So,other than being a nervous wreck and feeling like I want to puke my guts out....we're doing just fine! LOL!
DW
Wednesday, March 03, 2010
How do you do it?
Pam wrote:
how do you do it?? How can you be the "rock" of it all, the cheerleader, care giver etc, everything? I am facing a similar situtation and sometimes I NEED to be the one being taken care of. I have 4 kids under 3yrs and a very non compliant husband. Dealing with the every day stress of 4 kids, i have to treat him like my 5th, and i want to say "grow up"!!! Thanks for all of your stories and information, it helps me deal with my own CRAP!!!
I sat here thinking about this. Well, I probably couldn't do a think if I had 4 kids! I think they would come first in my life.
But here's what I think:
1. Surround yourself with a huge network of other women who can support you, help you out, lift you up.
2. Find some way to take 30 minutes for yourself every single day. Today, I walked to the grocery store and on the way home, I sat on a bench overlooking a small pond for about 10 minutes. It got me out of the house, away from everything. I could clear my head.
3. Find something in your life that is just for you. I have my art. It is wonderful therapy. It grounds me. I find that when you slip over into the right side of the brain, it gives the left side time to heal.
4. Pray. If you are not religious, then meditate. 5 minutes at a time. Focus. Tune out the rest of the world.
5. Write. Start a blog. If you write it all down, then you don't have to dwell on it. I put my anger here. I put my frustrations here. I take it all out in the blog....and then I can walk away and simply forget about it. If I need to "remember" - I just come back here.
6. Know that you can stay or leave. You have options. Really - it's like any other marriage. Diabetes does make it more difficult. But we all have options. Get counseling, get therapy. But bottom line is that you have a choice. And you can change your mind at any time. That "freedom" is what gets me through the worst hours. It's what makes me happiest during our good hours. I'm still here. But knowing that it is my choice is what makes it easier for me.
I think that's how I get through every day. Just one step at a time.
So, updates for today. It was a doozie! We went through the list of things to prepare for in the event he were not to survive surgery. Gruesome. Horrible. Awful. Tears. Hugs. Sweetness. Sorrow. Horrible almost unbearable grief. But it is a process that we had to go through and now, I know what his wishes are and we both agreed that we are comfortable going forward.
There has been an overnight change in him. Almost like there was an old-fashioned revival and he walked down the aisle. I will take it gladly! He is eating right. He is testing his sugars. He is doing exactly what the doctors are telling him to do. Is it too late? Only time will tell. He did more labs today. (He's had more labs in the last 3 weeks than in the past 4 years!) The results were good and bad. Improvement in some areas....setbacks in others. We focused on what he needs to do to improve even more. I think that rather than being out of control, he is starting to see how eating healthy can put him "in control". And with constant testing of his glucose, it is slowly coming into control, and his fits of anger are slowing down. I just want to raise my arms and wave them up over my head and yell "praise the lord!"....but then I look around and realize we really aren't at a revival meeting. LOL!
We are working to take care of everything this week so that next week he can just relax and try to mentally prepare for surgery. We have planned an evening out with friends the night before and are jokingly calling it the "last supper". I know - morbid people. But he is laughing at the reactions and that's just what he needs right now - laugher.
DW
Tuesday, March 02, 2010
Surgery - I like a good blunt surgeon.
I thought I would post the rather graphic description that the surgeon gave us this morning. I understand that they have to prepare us for the worst, and I am truly grateful for that. But I wonder if my husband ever gave thought to any of this 30 years ago when he first got diabetes. Ok, I know he didn't, nor has he given thought to it at all in the last 30 years.
Uncontrolled sugar is what got him here. Remember, this is a guy who last renewed his test strip Rx in 2001. He has not tested since I met him in 1998. He takes all the meds they give him. He eats anything he wants. Whenever he wants. Until a month ago.
So, first, we saw photos from the angiogram and echocardiogram. The surgeon says, "there just are not many spots that are healthy enough for us to go in and graft a good vein to."
Whoa! Hold the fort! I was thinking "multiple blockage in each artery". I was not thinking "we can't find a spot to do a graft - it's that bad in there!!!" I think my own heart missed a beat right there. But as we looked at the photos of where the dye had gone in, you could clearly see blockage.....everywhere. Some more than other places. But a good healty vein? A good solid opening? I saw one spot! The doctor had circled 5 possiblities and said that he honestly couldn't say for sure until he gets inside.
This did NOT happen overnight! This did not happen in the last year. This has been happening over the last several years. And my husband just helped it along. All from high sugar? The surgeon thinks so.
Once we looked at all the photos, he started to explain the process. They will prep him for surgery. Once in the OR, they will of course, put him to sleep. They will cut through his chest bone. I'm thinking power saw? skillsaw? dremel tool? He didn't say and I didn't want to ask. The body gets hooked up to a heart machine during the surgery. The blood will pool in the sac under the heart, get syphoned into another machine, washed, then put back into his body via and IV. When the bypasses are all done, they will shock the heart to restart it. He has a DNR in place, but he has to revoke it or they can't do the surgery. Makes sense. So they then explained the process of what happens if something goes wrong.
Basically, they will keep him alive on life support, make a decision to invoke my medical power of attorney, and I have to reinstate the DNR.
Did I ever think this would be my "job" when I married him? Of course not! Do I want this "job"? I do know what his wishes are, but I wonder if I got to that point, would I be able to do it? I just don't know.
The veins will be taken out of his left leg. I worry that this might have a future impact on his legs? Always a concern for a diabetic, but I guess when you weigh the pros and cons, it'sa risk he has to take.
And then the seemingly endless list of what can go wrong. Stroke. Heart attack. arrythmia. Infection. Problems with blood transfusions. Pneumonia. Fluid in the lungs. Each with an increased risk.
All that was standard. Then the surgeon started looking at the endless list of medications that hubby is on and that brought on a brand new list of risks. And more labs and tests that have to be done before surgery.
And then he brought in the additional problem of his stenosis of the spinal column, inability to participate in cardio physical therapy after surgery and what that might lead to. None of it good. I know by then I was blocking things out - I just didn't want to hear any more. We had been in his office nearly 2 hours at this point. Hubby was blocking it out long before I was.
I think by then my head was throbbing. I wonder if the benefits outweigh the risks. But I just don't think there are any options and the surgeon didn't offer any either.
We are both happy that we felt comfortable with the surgeon and his team. We are grateful that a date has been set and we won't have to wait long. Hubby is making plans for coverage at work. Between labs, tests, and getting ready, we will both keep busy.
Isn't it sad that we had to get to this point before hubby let me participate in his medical program? But I don't think he has an option either. He's not supposed to drive until after the surgery. He's not supposed to lift anything over 5 pounds between now and 3 months after surgery. He's not supposed to do stairs more than once a day until after surgery.
I have my moments when I really want to look at him at tell him what an idiot he has been for the last 30 years. But I won't. I'll just say it here. It wouldn't do a bit of good to say it to him now.
I am pretty grateful that I don't have to get up and go to a job every day. I don't know how I could do anything other than this right now. We have an excellent support network of family and friends here and I am doing plenty to take care of myself - so I can take care of him. For fun, we're going to get mani/pedis tomorrow. He simply can't go to surgery with his feet the way they are. LOL!
Keeping his spirits up will be my full time job the next few day. Keeping him from getting depressed. Cooking healthy meals for him. Yep - a full time job. So, to the diabetics who read my blog - test, test, test. Don't trust a good A1c. Remember - his has always been good until last December.
And if you are married to someone who doesn't test, print out my entire blog and make them read it! This is simply not a journey I would wish on anyone. But we are here and we will journey forward one way or another.
DW
Uncontrolled sugar is what got him here. Remember, this is a guy who last renewed his test strip Rx in 2001. He has not tested since I met him in 1998. He takes all the meds they give him. He eats anything he wants. Whenever he wants. Until a month ago.
So, first, we saw photos from the angiogram and echocardiogram. The surgeon says, "there just are not many spots that are healthy enough for us to go in and graft a good vein to."
Whoa! Hold the fort! I was thinking "multiple blockage in each artery". I was not thinking "we can't find a spot to do a graft - it's that bad in there!!!" I think my own heart missed a beat right there. But as we looked at the photos of where the dye had gone in, you could clearly see blockage.....everywhere. Some more than other places. But a good healty vein? A good solid opening? I saw one spot! The doctor had circled 5 possiblities and said that he honestly couldn't say for sure until he gets inside.
This did NOT happen overnight! This did not happen in the last year. This has been happening over the last several years. And my husband just helped it along. All from high sugar? The surgeon thinks so.
Once we looked at all the photos, he started to explain the process. They will prep him for surgery. Once in the OR, they will of course, put him to sleep. They will cut through his chest bone. I'm thinking power saw? skillsaw? dremel tool? He didn't say and I didn't want to ask. The body gets hooked up to a heart machine during the surgery. The blood will pool in the sac under the heart, get syphoned into another machine, washed, then put back into his body via and IV. When the bypasses are all done, they will shock the heart to restart it. He has a DNR in place, but he has to revoke it or they can't do the surgery. Makes sense. So they then explained the process of what happens if something goes wrong.
Basically, they will keep him alive on life support, make a decision to invoke my medical power of attorney, and I have to reinstate the DNR.
Did I ever think this would be my "job" when I married him? Of course not! Do I want this "job"? I do know what his wishes are, but I wonder if I got to that point, would I be able to do it? I just don't know.
The veins will be taken out of his left leg. I worry that this might have a future impact on his legs? Always a concern for a diabetic, but I guess when you weigh the pros and cons, it'sa risk he has to take.
And then the seemingly endless list of what can go wrong. Stroke. Heart attack. arrythmia. Infection. Problems with blood transfusions. Pneumonia. Fluid in the lungs. Each with an increased risk.
All that was standard. Then the surgeon started looking at the endless list of medications that hubby is on and that brought on a brand new list of risks. And more labs and tests that have to be done before surgery.
And then he brought in the additional problem of his stenosis of the spinal column, inability to participate in cardio physical therapy after surgery and what that might lead to. None of it good. I know by then I was blocking things out - I just didn't want to hear any more. We had been in his office nearly 2 hours at this point. Hubby was blocking it out long before I was.
I think by then my head was throbbing. I wonder if the benefits outweigh the risks. But I just don't think there are any options and the surgeon didn't offer any either.
We are both happy that we felt comfortable with the surgeon and his team. We are grateful that a date has been set and we won't have to wait long. Hubby is making plans for coverage at work. Between labs, tests, and getting ready, we will both keep busy.
Isn't it sad that we had to get to this point before hubby let me participate in his medical program? But I don't think he has an option either. He's not supposed to drive until after the surgery. He's not supposed to lift anything over 5 pounds between now and 3 months after surgery. He's not supposed to do stairs more than once a day until after surgery.
I have my moments when I really want to look at him at tell him what an idiot he has been for the last 30 years. But I won't. I'll just say it here. It wouldn't do a bit of good to say it to him now.
I am pretty grateful that I don't have to get up and go to a job every day. I don't know how I could do anything other than this right now. We have an excellent support network of family and friends here and I am doing plenty to take care of myself - so I can take care of him. For fun, we're going to get mani/pedis tomorrow. He simply can't go to surgery with his feet the way they are. LOL!
Keeping his spirits up will be my full time job the next few day. Keeping him from getting depressed. Cooking healthy meals for him. Yep - a full time job. So, to the diabetics who read my blog - test, test, test. Don't trust a good A1c. Remember - his has always been good until last December.
And if you are married to someone who doesn't test, print out my entire blog and make them read it! This is simply not a journey I would wish on anyone. But we are here and we will journey forward one way or another.
DW
Friday, February 26, 2010
Time
Would I make it stand still if I could? Would I turn back the clock if I could? Would it do any good if I could? All questions I've been thinking about. The cardiologist said that he would be where he is, but not this soon, had he chosen a healthier path of living at a much earlier age. But then, he would have given up the one thing he loves the most - eating. Eating what he wants, when he wants. So I don't know. Do you give up something you enjoy to have a longer healthier life, or do you just charge through what you have of life knowing that you are loving every moment of every day?
I don't think my husband would have been a very happy man living his life with restrictions and I understand that now. I understand the choice he made to not be compliant. But how sad. That at such a relatively young age, he is facing death.
OK, how pessimistic was that? Of course we both hope and pray that the outcome of the bypasses will be only positive. But this has made us stop and look at what will happen should he have a stroke, become paralyzed, become incompacitated, or die. Something the every diabetic family probably needs to think about - ahead of the event.
Yesterday, he got a handicap parking sticker. Something he has needed for over a year. We laughed and joked that this made it official. But I think laughter is a way to avoid the fear. Or perhaps it allows us to remain in our "fog". We know we are still in shock. We figure the stages of grief can wait for now. Yet I see both of us floating in and out of them. We have our moments of denial, anger, reconciliation and progress. We have moments where we sit and talk about what to do, what we can do. We focus on healthy foods (he has already dropped 10 pounds). We talk about what types of exercise he can do as soon as surgery is over. We talk about pain management.
Then we have our moments of sheer denial. This isn't happening. Let's plan a cruise for June. Until reality slaps us both back to the present. We both agree that we are living in the unknown. It's like wandering around in a tunnel and there's no light at either end. Until we meet with the surgeon and they actually schedule a date for surgery, everything is just in limbo.
Until reality slaps us back to the present and we realize the dogs are out of food, the refrigerator repair guy will be here in a couple of hours, we need to work on next weeks menu and grocery list......
I think today I want time to stand still. I don't want him to have to have this surgery. I want there to be an alternative. I want to turn the clock back 30 years and make him eat right and exercise. I don't want to go forward down this particular path. We sit and talk and he doesn't want to go down this path either. He is anxious about the pain. I try to reassure him that they will manage his pain, all he has to do is tell them what the level is. He is anxious about having to get up and walk immediately after surgery. He can't walk now because of his back. I remind him that the back surgeon's team is already coordinating with the cardiac team to insure that he doesn't experience pain.
So I find myself now in the role of comfortor, cheerleader, motivator, encourager. And this blog has become a place for me to grieve, to share my own fears, because I can't let him know any of it. I have to remain strong for him. I have to keep his spirits up. I have to find humor every day in something so he can see the humor in something.
I couldn't share with him my anger. I can't share with him my fear. Thank goodness for blogs!
We have researched his surgeon and the facility and are extremely pleased - they are in the top 15% of the nation for this type of surgery. It has helped his confidence to know this. We have made a list of quesitons to ask and have been modifying it daily. We are just waiting. Waiting til Tuesdays consultation. Waiting to have the surgery scheduled. Trying to stay "normal" - yet all the time a sense of wandering around, no direction, worried that he could have a heart attack at any moment, gently reminding him that he can only do stairs one time a day.
I am working to keep my own physical strength up. I'm obviously running up and down stairs for him multiple times a day. Alone in carrying in all the groceries now. Having to carry the carpet shampoo machine upstairs by myself (you know, puppies do make messes). So I have started a strengh building program working with repetitions and weights on a bowflex machine. Hoping I can keep up with the demands of what I need to do to keep him from lifting anything over 3 pounds or exerting himself in any way until we get past this.
In limbo. That's where we are today. I'm off to find something fun to share with him. I think it's time for a smile today. :o)
DW
I don't think my husband would have been a very happy man living his life with restrictions and I understand that now. I understand the choice he made to not be compliant. But how sad. That at such a relatively young age, he is facing death.
OK, how pessimistic was that? Of course we both hope and pray that the outcome of the bypasses will be only positive. But this has made us stop and look at what will happen should he have a stroke, become paralyzed, become incompacitated, or die. Something the every diabetic family probably needs to think about - ahead of the event.
Yesterday, he got a handicap parking sticker. Something he has needed for over a year. We laughed and joked that this made it official. But I think laughter is a way to avoid the fear. Or perhaps it allows us to remain in our "fog". We know we are still in shock. We figure the stages of grief can wait for now. Yet I see both of us floating in and out of them. We have our moments of denial, anger, reconciliation and progress. We have moments where we sit and talk about what to do, what we can do. We focus on healthy foods (he has already dropped 10 pounds). We talk about what types of exercise he can do as soon as surgery is over. We talk about pain management.
Then we have our moments of sheer denial. This isn't happening. Let's plan a cruise for June. Until reality slaps us both back to the present. We both agree that we are living in the unknown. It's like wandering around in a tunnel and there's no light at either end. Until we meet with the surgeon and they actually schedule a date for surgery, everything is just in limbo.
Until reality slaps us back to the present and we realize the dogs are out of food, the refrigerator repair guy will be here in a couple of hours, we need to work on next weeks menu and grocery list......
I think today I want time to stand still. I don't want him to have to have this surgery. I want there to be an alternative. I want to turn the clock back 30 years and make him eat right and exercise. I don't want to go forward down this particular path. We sit and talk and he doesn't want to go down this path either. He is anxious about the pain. I try to reassure him that they will manage his pain, all he has to do is tell them what the level is. He is anxious about having to get up and walk immediately after surgery. He can't walk now because of his back. I remind him that the back surgeon's team is already coordinating with the cardiac team to insure that he doesn't experience pain.
So I find myself now in the role of comfortor, cheerleader, motivator, encourager. And this blog has become a place for me to grieve, to share my own fears, because I can't let him know any of it. I have to remain strong for him. I have to keep his spirits up. I have to find humor every day in something so he can see the humor in something.
I couldn't share with him my anger. I can't share with him my fear. Thank goodness for blogs!
We have researched his surgeon and the facility and are extremely pleased - they are in the top 15% of the nation for this type of surgery. It has helped his confidence to know this. We have made a list of quesitons to ask and have been modifying it daily. We are just waiting. Waiting til Tuesdays consultation. Waiting to have the surgery scheduled. Trying to stay "normal" - yet all the time a sense of wandering around, no direction, worried that he could have a heart attack at any moment, gently reminding him that he can only do stairs one time a day.
I am working to keep my own physical strength up. I'm obviously running up and down stairs for him multiple times a day. Alone in carrying in all the groceries now. Having to carry the carpet shampoo machine upstairs by myself (you know, puppies do make messes). So I have started a strengh building program working with repetitions and weights on a bowflex machine. Hoping I can keep up with the demands of what I need to do to keep him from lifting anything over 3 pounds or exerting himself in any way until we get past this.
In limbo. That's where we are today. I'm off to find something fun to share with him. I think it's time for a smile today. :o)
DW
Wednesday, February 24, 2010
survival mode
I woke up this morning thinking that both of us have gone into "survival" mode. It doesn't matter what he did or did not do that got him to this point. He is here. We need to do whatever it takes to prevent a heart attack between now and surgery. That includes cancelling all non-essential appointments, cutting back on work so stress is reduced, limiting stairs to once down and once back up a day for him. Doing whatever it takes to survive.
We are starting to talk about the "what-ifs", trying to prepare for the future. If one can do that. We talked about his return home, getting a hospital bed on the main floor since our bedroom is upstairs.....long term care arrangements if those are needed. Rearranging furniture, who can come help moving furniture, etc. Today I hope we work on the financial aspect of this. They are all good conversations. Trying to think logically, yet long term. I think that while we are both still in a bit of shock and trying to absorb the information as it comes in.....and perhpas in a bit of denial on some level, we are making a bit of progress in preparing ourselves for this. We have requested support from the chronic care counseling unit and hopefully we can schedule that in the near future.
While I truly do not like counseling, I think he needs it in order to avert depression, so I'm requesting it for both of us. He has made a remarkable turnaround in that he is allowing me to participate in all of this with him. I guess it had to get so bad that he didn't want to make the decisions alone.
We have no appointments today. But hopefully we can take care of a few errands we need to make. Need to spread them out over the next few days so that we limit his activity and exertion levels. I feel a peace about me this morning that I know is coming from the prayers of all our family and loved ones. It is good.
DW
We are starting to talk about the "what-ifs", trying to prepare for the future. If one can do that. We talked about his return home, getting a hospital bed on the main floor since our bedroom is upstairs.....long term care arrangements if those are needed. Rearranging furniture, who can come help moving furniture, etc. Today I hope we work on the financial aspect of this. They are all good conversations. Trying to think logically, yet long term. I think that while we are both still in a bit of shock and trying to absorb the information as it comes in.....and perhpas in a bit of denial on some level, we are making a bit of progress in preparing ourselves for this. We have requested support from the chronic care counseling unit and hopefully we can schedule that in the near future.
While I truly do not like counseling, I think he needs it in order to avert depression, so I'm requesting it for both of us. He has made a remarkable turnaround in that he is allowing me to participate in all of this with him. I guess it had to get so bad that he didn't want to make the decisions alone.
We have no appointments today. But hopefully we can take care of a few errands we need to make. Need to spread them out over the next few days so that we limit his activity and exertion levels. I feel a peace about me this morning that I know is coming from the prayers of all our family and loved ones. It is good.
DW
Tuesday, February 23, 2010
cardiologists call
the doctor had more time to go over the cath and called and said she does not want him to exert himself at all. No activity until he has the surgery. That tells me they are fearful that he might have a heart attack before surgery which indicates it's worse than we thought.
He told his parents. They want to be here. They have not visited him at his home since 1982. Missed their grandkids graduations, but for this, they want to be here. I told him that I cannot take care of them, he is going to be my primary concern. He has a consult with the surgeon next week, so we will wait til then to make a decisions. Hopefully they will schedule the surgery then, but we have to wait for the dye to clear his system.
He is eating healty. He is testing. Glucose at 57 at 11 am today.
DW
He told his parents. They want to be here. They have not visited him at his home since 1982. Missed their grandkids graduations, but for this, they want to be here. I told him that I cannot take care of them, he is going to be my primary concern. He has a consult with the surgeon next week, so we will wait til then to make a decisions. Hopefully they will schedule the surgery then, but we have to wait for the dye to clear his system.
He is eating healty. He is testing. Glucose at 57 at 11 am today.
DW
Monday, February 22, 2010
BLAME it on Diabetes!!!
The cardiac surgeon said, and I quote word for word:
His diabetes has literally chewed up all of his arteries.
I sure hope diabetics will start to listen to me now! He had the cardiac catheterization this morning. They went in just enough to look at the damage and came right back out. So the good news is that very little dye was used in today's procedure, so very little risk of additional damage. He will get tests to verify this in a week.
BUT.....he is going to have to have FIVE bypasses done! Every artery has been destroyed by diabetes.
Not by high cholesterol.
Not by coronary disease.
BY DIABETES!!!
Now, tell me this has no impact on the spouse, family, everyone involved in his life? He will be out of work for up to 6 weeks. A minimum of a month. He could have "the big one" any time between now and surgery...or even during surgery.
the"news" has been coming in all afternoon with each visit from a doctor or a nurse as he is still in recovery. He has to modify the low glycemic menu to a heart healthy menu. Immediately after surgery, he will start with cardiac rehabilatation. He HAS to lose weight. He HAS to follow the diet. He is not going to be allowed any options. So all that is wonderful news as far as I'm concerned.
Bottom line, I still am the one to play police and monitor what he heats, what his activity level is.
But backing up. Lots of issues today with just this procedure. He was fasting and woke up to glucose at 57. Yikes! Took orange juice with the stuff to protect his kidneys Got to hospital and glucose was at 87. They started a dextrose IV. Wanted it higher.
Then, had to use an ultrasound to find pulse in his feet. Did a special test called AVI to determine difference between BP in feet and arms. Had to be at least 1.0 and that was where he was. IV drip with more stuff to protect his kidneys. His pain shot up because he couldn't move (back and hip pain) so they called an anethesiologist in for standby in case they had to put him under during the cath (ended up not having to go this route). Couldn't administer any pain meds until he had signed all of the releases. So lots of tiny little details to consider. Excellent hospital. Wonderful staff. Thank goodness!
After the cath, they put hard pressure on the incision point in his groin for 20 minutes. We are now 3 hours post op and they still have the IV with the kidney stuff going. He cannot get up until 30 minutes after that is turned off.
I think the biggest problem for him has been the pain from his hips and back - he has to lay perfectly flat and cannot move his leg or hip. Pretty miserable, but he is handling it well.
So, let's have that famous argument now. If you take all your meds and follow your diet...you can STILL get right to where he is needing to have al 5 arteries bypassed. Why? because even if you have a NORMAL A1C.....you can be going equally high and low and have it average out to a normal. And there is no way to know this unless you test your glucose 8 times a day and also throughout the night. And for each time your glucose goes high, there is probably going to be damage to your arteries. And yet....your doctors will not pick up on any of this because your A1C is normal.
He has had a normal A1C for the last 30 years. It only went to 9.2 in December. His heart did not get to this point in the last 2 months! It has been coming on for years and that is according to his cardiologist. Yet no one ever did a thing about it until his A1c shot up....and he reported angina pains a full year after they started happening.
So just because you have a normal A1C - that does not guarantee you anything!
If you are the spouse of a diabetic who has a normal A1c.....I would recommend that you insist they test 8 times a day and ate least 2 - 3 times at night. If it truly stays normal - great. But if it goes low or high, even once, understand that it has to go equally the same distance in the other direction in order for it to average out to be normal. For instance.....if it goes up to 300 and the average is 120, then it has to drop to ZERO at least once, or go down to 50 or lower twice, at some time, to have it average out to 120.
I would have to say that a good A1C is really not a good test. Testing every 2 - 3 hours around the clock is the only thing that will tell you what's really going on. We did that back in 2006. He has not done it since I feel certain that he's been doing the high/low thing for at least the last 4 years!!! No wonder he needs 5 bypasses.
Please remember, I'm merely writing about the life of one guy, and my life as his primary care giver, and my battle to accept this "lot in life" that has been cast upon us. It is the ugly truth about what hapens to a diabetic who has passed stage 3 of kidney failure and entering into stage 4.
DW
His diabetes has literally chewed up all of his arteries.
I sure hope diabetics will start to listen to me now! He had the cardiac catheterization this morning. They went in just enough to look at the damage and came right back out. So the good news is that very little dye was used in today's procedure, so very little risk of additional damage. He will get tests to verify this in a week.
BUT.....he is going to have to have FIVE bypasses done! Every artery has been destroyed by diabetes.
Not by high cholesterol.
Not by coronary disease.
BY DIABETES!!!
Now, tell me this has no impact on the spouse, family, everyone involved in his life? He will be out of work for up to 6 weeks. A minimum of a month. He could have "the big one" any time between now and surgery...or even during surgery.
the"news" has been coming in all afternoon with each visit from a doctor or a nurse as he is still in recovery. He has to modify the low glycemic menu to a heart healthy menu. Immediately after surgery, he will start with cardiac rehabilatation. He HAS to lose weight. He HAS to follow the diet. He is not going to be allowed any options. So all that is wonderful news as far as I'm concerned.
Bottom line, I still am the one to play police and monitor what he heats, what his activity level is.
But backing up. Lots of issues today with just this procedure. He was fasting and woke up to glucose at 57. Yikes! Took orange juice with the stuff to protect his kidneys Got to hospital and glucose was at 87. They started a dextrose IV. Wanted it higher.
Then, had to use an ultrasound to find pulse in his feet. Did a special test called AVI to determine difference between BP in feet and arms. Had to be at least 1.0 and that was where he was. IV drip with more stuff to protect his kidneys. His pain shot up because he couldn't move (back and hip pain) so they called an anethesiologist in for standby in case they had to put him under during the cath (ended up not having to go this route). Couldn't administer any pain meds until he had signed all of the releases. So lots of tiny little details to consider. Excellent hospital. Wonderful staff. Thank goodness!
After the cath, they put hard pressure on the incision point in his groin for 20 minutes. We are now 3 hours post op and they still have the IV with the kidney stuff going. He cannot get up until 30 minutes after that is turned off.
I think the biggest problem for him has been the pain from his hips and back - he has to lay perfectly flat and cannot move his leg or hip. Pretty miserable, but he is handling it well.
So, let's have that famous argument now. If you take all your meds and follow your diet...you can STILL get right to where he is needing to have al 5 arteries bypassed. Why? because even if you have a NORMAL A1C.....you can be going equally high and low and have it average out to a normal. And there is no way to know this unless you test your glucose 8 times a day and also throughout the night. And for each time your glucose goes high, there is probably going to be damage to your arteries. And yet....your doctors will not pick up on any of this because your A1C is normal.
He has had a normal A1C for the last 30 years. It only went to 9.2 in December. His heart did not get to this point in the last 2 months! It has been coming on for years and that is according to his cardiologist. Yet no one ever did a thing about it until his A1c shot up....and he reported angina pains a full year after they started happening.
So just because you have a normal A1C - that does not guarantee you anything!
If you are the spouse of a diabetic who has a normal A1c.....I would recommend that you insist they test 8 times a day and ate least 2 - 3 times at night. If it truly stays normal - great. But if it goes low or high, even once, understand that it has to go equally the same distance in the other direction in order for it to average out to be normal. For instance.....if it goes up to 300 and the average is 120, then it has to drop to ZERO at least once, or go down to 50 or lower twice, at some time, to have it average out to 120.
I would have to say that a good A1C is really not a good test. Testing every 2 - 3 hours around the clock is the only thing that will tell you what's really going on. We did that back in 2006. He has not done it since I feel certain that he's been doing the high/low thing for at least the last 4 years!!! No wonder he needs 5 bypasses.
Please remember, I'm merely writing about the life of one guy, and my life as his primary care giver, and my battle to accept this "lot in life" that has been cast upon us. It is the ugly truth about what hapens to a diabetic who has passed stage 3 of kidney failure and entering into stage 4.
DW
Sunday, February 21, 2010
Nervous- but not nervous
As the wife of a diabetic, I thought I would sit here today and write my thoughts about tomorrow. I tell myself over and over that it is wasted energy to worry. Yet I think you need to have some kind of plan in the event something goes wrong.
What if he has a heart attack during the procedure? Check. Have my list of people to call first.
What if he has a stroke? Check Have the medical/financial power of attny and the DNR ready to take with me.
What if his kidneys fail? Well, that's on the insurance will have to take care of, but we have space for a home dialysis system here.
What if he needs surgery in a week or so? Check. Calendar is clear the rest of the month.
What if everything goes ok and they find absolutely nothing wrong with his heart? Check. Praise Jehovah!
I think I understand all of the risks involved since he is so far progressed with his diabetes. I don't see an option, I think it's a test he has to undergo. I think my greatest worry and his biggest risk is that of kidney failure. I realize that it can come back. It can be permanent.
He does not seem to have any of these thoughts at all. It's almost as though he thinks he's going in for a simple xray and that's all it will be.
I don't think I'm really worried - I'm just trying to cover all the bases and be prepared for any outcome....if one can be prepared. I do have great confidence (too much so?) in his providers that they will make the best decisions moment by moment.
However....as the spouse of a diabetic....these are not worries that I would have ever considered before I met this man. His risk in this procedure is MUCH greater than someone who does not have diabetes. At this age, he most likely would not even be considered for this process. It wouldn't happen for another 20 years....as an average...of what statistics show us. But neuropathy and high glucose increase the damage that occurs in arteries, thus bringing this on at a much earlier age.
He does not want to make a big deal out of this. I have informed a few close friends and my family that I might need to call on them should he end up with an extended stay in the hospital. As advised, he is packing an overnight bag. He took the first does of a liquid med this morning that is supposed to help protect his kidneys. He said it was absolutely horrid. The smell is still in the house and quite rank. Interesting that something that smelly could protect anything.
I think mostly, it's hard to put my feelings into words today. Worried, but trying not to worry. Nervous, but really not nervous (because I know that no matter what happens, it will be ok). Optimistic - because I have to be that way for him to help keep his spirits high. Jovial - because he endures stress best with jokes. So a complete roller coaster of emotions today - that I probably wouldn't have if he didn't have diabetes.
Bottom line. I have learned that no matter what happens in life, we somehow manage to survive it. So no matter what happens tomorrow, it will be ok.
DW
What if he has a heart attack during the procedure? Check. Have my list of people to call first.
What if he has a stroke? Check Have the medical/financial power of attny and the DNR ready to take with me.
What if his kidneys fail? Well, that's on the insurance will have to take care of, but we have space for a home dialysis system here.
What if he needs surgery in a week or so? Check. Calendar is clear the rest of the month.
What if everything goes ok and they find absolutely nothing wrong with his heart? Check. Praise Jehovah!
I think I understand all of the risks involved since he is so far progressed with his diabetes. I don't see an option, I think it's a test he has to undergo. I think my greatest worry and his biggest risk is that of kidney failure. I realize that it can come back. It can be permanent.
He does not seem to have any of these thoughts at all. It's almost as though he thinks he's going in for a simple xray and that's all it will be.
I don't think I'm really worried - I'm just trying to cover all the bases and be prepared for any outcome....if one can be prepared. I do have great confidence (too much so?) in his providers that they will make the best decisions moment by moment.
However....as the spouse of a diabetic....these are not worries that I would have ever considered before I met this man. His risk in this procedure is MUCH greater than someone who does not have diabetes. At this age, he most likely would not even be considered for this process. It wouldn't happen for another 20 years....as an average...of what statistics show us. But neuropathy and high glucose increase the damage that occurs in arteries, thus bringing this on at a much earlier age.
He does not want to make a big deal out of this. I have informed a few close friends and my family that I might need to call on them should he end up with an extended stay in the hospital. As advised, he is packing an overnight bag. He took the first does of a liquid med this morning that is supposed to help protect his kidneys. He said it was absolutely horrid. The smell is still in the house and quite rank. Interesting that something that smelly could protect anything.
I think mostly, it's hard to put my feelings into words today. Worried, but trying not to worry. Nervous, but really not nervous (because I know that no matter what happens, it will be ok). Optimistic - because I have to be that way for him to help keep his spirits high. Jovial - because he endures stress best with jokes. So a complete roller coaster of emotions today - that I probably wouldn't have if he didn't have diabetes.
Bottom line. I have learned that no matter what happens in life, we somehow manage to survive it. So no matter what happens tomorrow, it will be ok.
DW
Saturday, February 20, 2010
Neurosurgeon
I'm running behind on my posts here -busy week. So, he was supposed to see the neuro at 8 am on Thursday. On Wed night, he figured out that the appt had been that morning- he missed it. I'm still not sure what I thought. I think I couldn't believe he would mess up on the dates when he has been in such pain. He never lets me see anything in writing, so, of course, I went by his word that the appt was Thurs, not Wed. He got up Thurs am and called and did confess that he had messed up. Told them how critical it was that he see the neuro before they do the cath. Amazing, they had a cancellation for that afternoon and got him in.
He let me go with him. We both liked the neuro. He showed us the MRI. Hubby has horrible narrowing of the spinal column. So narrow, I don't know how anything flows through it. He has compression of 3 vertebrae. He has degeneration in 3 vertebra. Then he showed us the xrays which show rather significant scoliosis. That was a shock!
He wants to refer hubby to physical therapy for a month and agreed that's not going to work, but needs to make the referral. Aftera month, he will go to the pain mgmt center and get steroid injection. They may work, they may not last 2 days. If they don't work, then it will be major surgery. So major that he will be referred outside the HMO. He said that could happen as soon as 3 months.
So it's good that he has a plan. I think the cardiologist is going to recomment bypass surgery as it looks like he can't be put on blood thinners in the event he needs back surgery. He has the cardiac catheterization on Monday. So, a lot going on at the moment.
He is still doing pretty good with the new low glycemic menu. Now if we can just get some motion in him. I agreed that whatever physical therapy tells him, I will do it along with him to help him out. He will make the call to them after the cath is over.
Life seems to be changing by the moment.
Oh, he had bad low, down to under 50, yesterday. Have started to keep fresh orange juice in the house for moments like that. He managed to come of that one in about 20 minutes.
DW
He let me go with him. We both liked the neuro. He showed us the MRI. Hubby has horrible narrowing of the spinal column. So narrow, I don't know how anything flows through it. He has compression of 3 vertebrae. He has degeneration in 3 vertebra. Then he showed us the xrays which show rather significant scoliosis. That was a shock!
He wants to refer hubby to physical therapy for a month and agreed that's not going to work, but needs to make the referral. Aftera month, he will go to the pain mgmt center and get steroid injection. They may work, they may not last 2 days. If they don't work, then it will be major surgery. So major that he will be referred outside the HMO. He said that could happen as soon as 3 months.
So it's good that he has a plan. I think the cardiologist is going to recomment bypass surgery as it looks like he can't be put on blood thinners in the event he needs back surgery. He has the cardiac catheterization on Monday. So, a lot going on at the moment.
He is still doing pretty good with the new low glycemic menu. Now if we can just get some motion in him. I agreed that whatever physical therapy tells him, I will do it along with him to help him out. He will make the call to them after the cath is over.
Life seems to be changing by the moment.
Oh, he had bad low, down to under 50, yesterday. Have started to keep fresh orange juice in the house for moments like that. He managed to come of that one in about 20 minutes.
DW
Monday, February 15, 2010
still 9.2
Neil wrote: I have read your long letter, and I can truly say this is very sad for you and me. You see, as a type 1 diabetic, I once thought I could make a difference in this world. I made myself an expert on the disease, and considered my disease a blessing because I had the opportunity to study the human metabolism first hand. I could compare animal studies and my own cause and effect. I tried and tried to help diabetics. I most received verbal stones like it is your way or the highway. Or everyone is different. It works for you but ..... I finally told my wife, despite I became an expert, not even the doctors want to listen to me. I never see a doctor myself because I have no reason to see a doctor. I just inject insulin every two hours 24-7 and limit red meat and carbs that rush into the system. I exercise a great deal, but that is easy for me. You see, I have always been an athlete.
I now conclude that I have a unique set of genetics. Not aht my diabetes is so different, but because genetics has instilled on me a powerful, will, determination, committment and perserverance to live not just healthy, but healthier than any one else, even non diabetics. I have pretty much accomplished my personal goals. But I have failed horribly to bring other diabetics down my path. After being diabetic for 40 years, I would think some one would believe me just by looking at my results. I have been studying the difference between listening and hearing. If my listening is correct, most want some one else to fix their health. I cried when my niece died from diabetes, and I am greatly saddened for you, your husband and ll those who I tried to help but will not believe a word.
Too many diabetics live a lie. Yes it does take a committment, but it is doable. I have made myself an example to my children and I have now agreed with my family, my efforts are pointless and futile. No one will ever believe a word I say. I feel like an island in a world when diabetics could live in perfect health, but they too often do not.
I love my childrem, I love my wife and I love life. I must now go forward and realize I can not do anything for anyone. I just do not have the leadership skills.
Neil, I'm not sure what to say except that I agree. My husband doen't "think" he can get "well", so he doesn't even want to try. I have to tell you thought, he is testing 3 times a day. The nurse from endo is making him! She emails and wants him to download his results. His new little tester won't lie. So that is a change for the good. They gave him a new tester, renewed his 2001 Rx for test strips (can you believe it had not been renewed since then?) and have him testing.
His latest A1c is still 9.2. NOT good. Today, he went to a deli for lunch and instead of picking a whole grain bun, he picked white bread. Not low glycemic. Sigh. I don't know what to do with the guy. He knows his sugar is still high, yet he still makes bad choices when eating The deli was good because they did offer whole grain buns. He just picked what he was hungry for at the moment. I have to "give up" to keep from going nuts! LOL!!!
The echo results are good. No indication of a major heart attack. But the are still planning the cath for Monday. In the meantime, I'm filled up the calendar this week with activities so I don't think about all the "what-ifs".
DW
Friday, February 12, 2010
echo
He had it done this morning. They let me go in and watch. Totally amazing. To see the heart in 3D. I did recognize the chambers and valves, but did not now enough to determine if there was blockage or not. So now we wait for the results. He said it was pretty painless. He probably would have fallen asleep if she hadn't kept telling him to breath, hold release.
He seems to still be fighting depression and I'm still trying to keep him in good spirits. Full time job.
DW
Tuesday, February 09, 2010
A letter to my friends.....
This is a copy of a letter that I sent out to my friends. I thought I would share it here. You will see a different side of me. This blog is where I spew forth my anger about diabetes, my frustrations with the medical community.....and I tell it like it is. It's the side of me that my husband and my friends never see. But at this point, I thought my art pals (all over the world) needed to be brought into the loop, so here's what I wrote to them (removed the identifying factors I hope):
To those of you who personally know my husband and I, this will hardly come as a surprise. Yet I find myself fighting depression and I know he is, too. The news from the cardiologist is not good. So I will back up for those of you who don't know him.
He has had type II diabetes for about 35 years now. It's hereditary. His father has it. His grandfather and great grandfather both had it. He opted at a very young age to "blow it off". He chose a path of non-compliance.....eating whatever he wanted, doing whatever he wanted, never testing his blood levels.
When I met him, he was simply taking pills to control his blood sugar. About 5 years ago, he went on insulin shots. And I started doing the research then.
About 3 years ago, he found out that his kidney function had dropped to 50%. I went through a year and a half of crying, pleading, begging him to start taking better care of himself. But he said that he wanted to live his life the way he wanted. I decided that he had a death wish, gave up, and lost myself in my art. His kidney function dropped to 26% and he would shift between stage 3 and stage 4 kidney failure. I started a very private blog and began recording what was going on with his diabetes. It got me into a lot of "hot water" with diabetic individuals because they refused to acknowledge that what was happening to him could ever happen to them.
He never tested his sugar. His A1C always showed up normal. But I knew he was going between great highs and great lows and it was merely averaging out as normal. He refused to listen to me. I kept studying.
A year ago, his back started to hurt. He refused to see his doctor. Last May, he had what we thought was a major angina attack when we were in a remote canyon in a foreign country. At the time, I thought it was a heart attack and thought he was going to die. He was deathly ill for the next 2 days. I pretty much figured that was the last of our adventurous trips. He promised me he would go to the doctor when we got home. He never did. I gave up.
By Thanksgiving, his hip had started hurting from his back pain and he cancelled our trip and took to bed where he has been most of the time since then.
In December he went in for his annual physical and finally, his A1c was off the charts. His glucose levels were averaging about 300 a day. The phone started ringing off the hook and the "professionals" took over. He postponed everything until this week in order to have his staff here for superbowl weekend. He has been surviving on percocet the past month.
So yesterday, the cardiologist told him that the "episode" in the canyon was a heart attack and that he was lucky to be alive. She put it into very plain English....but I'm not sure how much I "heard" after that. Because of his diabetes and his glucose levels, he is at a crossroads. He needs to have heart surgery first. We have scheduled an echocardiogram and a cardiac catheterization in the next 2 weeks. He has to have both procedures done. This will reduce the amount of dye they use in the cath. The dye may still cause kidney failure and result in dialysis. His kidney levels have reduced down even farther.
Those 2 tests will confirm the path he will take, but it is most likely, because of the diabetes, that he will need bypass surgery. If he has a heart attack during the cath process, they will take him by ambulance to the downtown hospital, to do surgery that day. She said it in such a matter-of-fact voice that it was almost like this is what she is expecting to happen. They do not do heart surgery at the hospital here. She told him to pack as though he were going to stay in the hospital.
If he survives this (he does have a DNR in place), then he will need surgery on his back as soon as he can. She read the notes from the MRI in full to us. I think she said he would have surgery at the L3, L4, L5, and L6 and that it would be major and extensive. "the neurosurgeon has a really tough job in front of him if he is to fix all this." Hubby visits the neurosurgeon in a couple weeks. She wanted that visit before the cath, so the cath is scheduled after that. She explained that his spinal stenosis is part hereditary, but part caused by a type of hardening of the arteries, narrowing of cores, brought on by his high glucose levels.
On top of all of this, he has high blood pressure, arthritis, gout, and several other issues that can all impact surgeries.
My prayer is that Jehovah's will be done. I would ask that you pray for the same. And that his spirits be lifted up. He was in a tailspin depression last night and I was fighting it myself. It is up to me to remain in good spirits and keep him as cheerful as I can. The cardiologist was incredible. She explained to this that this is not his fault. His diabetes is genetic. His heart disease is genetic. His father and mother have both already had stints and bypasses done. He simply chose a path that brought him to this point at a much earlier stage than he might have been, but there isn't even a guarantee on that. She told him that he absolutely has to counsel his kids that they and their kids are already on this path and that it simply doesn't matter how well they take care of themselves, they may end up in the same place because it is in their genes.
Because I have been studying and researching, I have known for the last couple of years just how precious our life together is. He can drop to stage 4 kidney failure at any time and have to go on dialysis. I know he will not opt for a kidney transplant. I know that we probably have no more than 10 years left. I have known that the key has been to keep him at stage 3. He has never understood that. Until now. He has finally agreed to a low glycemic menu which I have been doing since December. He has joined me...."kicking and screaming" every step of the way. But he is finally starting to make healthy choices when it comes to what he eats. He needs to exercise....but literally cannot because of the pain. He discussed that with the cardiologist yesterday and she agreed it was part of the catch 22 he has himself in at the moment.
I know that I am scared to death. I am putting my heart out on my sleeve here today for all of you to see. A side of me that I rarely share with anyone else. But for this journey, I am calling in all my markers. I have told my family and they will all be here for me. I may call on you that live close by. I know you are all more than willing to help. But as the cardiologist explained the progression of what is ahead for us, I think I will save most of your offers for his back surgery. If we make it through the heart surgery, I think his greatest trial will be the back.
I knew that 2010 was going to take a different turn for us. I knew he was going to need heart surgery and back surgery. I have been trying to prepare us for that. But we were both completely thrown off track when she explained that he had already had a heart attack. She said, "9 months ago? It's time we deliver this baby!" It hit me that the last 9 months have been a complete gift. And that each day from now on will be yet another gift.
He does have a goal. To survive until April. His first (and probably only) grandson is due then. I'm hoping we can get through this and be on the road to recovery by then. His second "goal" is a trip the first of May. He wants to buy the tickets today and I think I will let him - just because it will be more incentive for him to be in travel mode by then. Not realistic at all.....but money well spent in "inspiration".
I wonder about my art. What I will be inspired to design. When you have to travel a path you did not chose and do not want....I suspect that art can still heal and help. I'm not ready to call this an "adventure", but I already know that when I look back, we will all say, "well, that was definitely an adventure!"
Finally, to R. My dear friend. Read this to H. MAKE him do whatever the doctors tell him to do. If he doesn't, he will end up exactly like this. And I wouldn't wish this on anyone.
If you are local, and come over, do not give him one ounce of sympathy. Seriously! It will just make him feel worse. He needs to have laughter in his life right now. He's the kind of guy who needs to be a man's man and that's why this is so hard for him. S is coming tomorrow and I know she will make him laugh. Kwill be over Thursday and you and I are just going to have to be plain silly!! So now that you all know exactly where I am....we can get back to the "art of playing" - it truly heals.
------------
So to add to this, the more personal side of what's going on......as I remember bits and pieces of yesterday's conversation with the cardiologist, I will come back and post them here.
She asked him if he had high blood pressure. He said "no". She looked at me, I looked at him. He said, "well, I am taking medicine to keep it down". She looked at me. I looked at him. She said, "You have been diagnosed with hypertension and cardiovascular disease. You HAVE high blood pressure."
I mean she called a spade a spade. Yet I think this is a good example of how he has rationalized everything.....and what I have had to deal with. He has never admitted that he has high blood pressure. He feels that because his numbers come out good every time he takes it...he is "normal". The pill that he takes to keep it normal doesn't count.
Diabetes has been the same way. Because his A1c has been normal in the past...he didn't really have diaetes. He could eat anything he wanted. The pills and then the shots he took didn't really count.....it was the A1c that counts and as long as that was normal....he could eat anything he wanted and he never had to test his glucose levels.
Perhaps that will help to explain the logic he has used for the past 35 years in dealing with his disease.
She told him that he was lucky to have me. That he needed someone to constantly remind him what he could and couldn't do. I think she was preparing both of us for the trip we are about to embark on.
DW
Monday, February 08, 2010
changes
Cardiologist visit today. I went with him. Second time he's ever agreed that I go with him. Absolutely shocked at the number of couples in the waiting room. Liked the doctor just fine. She thinks he has already had a heart attack. cardiac catheterization scheduled and an echocardiogram scheduled. She talked about the dye causing additional damage to the kidneys including kidney failure. She gave us the worst case scenarios - I will hope for the best case. Most likely, he will need to have bypass surgery done. She proposed that he see the neurosurgeon before doing the cath.
She explained to him that this is genetic. His dad has heart problems. There is nothing he could have done to prevent this. But the path he chose of not taking good care of himself brought it on sooner than it might have been and now that choice was "snapping him in the butt." She told him that he has to eat right and loose weight. No other option. He seemed to listen. Tonight he ate a salad.
She was tough, firm, and fair. I hope he will listen. And because I went, he can't tell me something different. When I mentioned spinal stenosis, he said he didn't have that, only a narrowing of the column. So she started reading out of his medical record and quoted, "major spinal stenosis". Once again....did he forget, never "hear" the other doctor, just in denial? Hard to say. But she "got it" almost immediately and started asking him even more questions.
When he told her about the angina attack he had last May, she asked him how bad it was. He said, pretty bad. She looked at me. I said, "he had diahrrea and vomiting for 2 days afterwards and that he didn't leave the hotel room. She said, "that was bad." She "got it" that the pain is keeping his sugar elevated, that he needs to get his heart fixed before his back, that he needs to get his sugar down to do either, but the pain is keeping it up.
I wonder how much of what she said he will remember in a couple of weeks. If it were me, I'd be scared to death. He seems to be treating it like a normal business day.
He also agreed that I can go with him tomorrow to the endo visit. Major changes in him. Major.
DW
Saturday, February 06, 2010
Week long high
Phil wrote:
So, while I'm the wife of a diabetic, I'm certain that women who have diabetes can be just like my husband when it comes to lows, denial, no memory, not caring for themselves. Hadn't really thought about that too much. But I'm sure if a diabetic doesn't take care of themselves....the end results would be genderless.
Dear Wife of a diabetic...I'm the husband of a diabetic (some 30 years). I'm searching for an out let of "am I the only one out here with these issues....and I found this site and read a little of the same descriptions of my life....hummmm maybe I not the only one who is out here...I'll book mark and come back
So, while I'm the wife of a diabetic, I'm certain that women who have diabetes can be just like my husband when it comes to lows, denial, no memory, not caring for themselves. Hadn't really thought about that too much. But I'm sure if a diabetic doesn't take care of themselves....the end results would be genderless.
It has been such a hectic week around here. Hubby's staff has all flown in and there is such a flurry of activity going on. And he is ever so unaware of what he is doing to himself and his body right now. First, he is so pumped up on adrenaline from excitement - he is the "boss", the "leader of the pack" and "off on the hunt" to show them all a great time. Adrenaline = high glucose.
Then, he is pumping himself up on percocet. I gently reminded him that his Rx is only for 2 months and when it's out, he can't get it refilled. He said he will deal with that later on.
He is not getting enough sleep. He is eating anything he wants.
But yet I know he is in severe pain. He got up at 5 am today and had me get up with him so I could make out an order for tomorrow's lunch. Of course, yes, this is a last minute change. I don't mind. But he couldn't make it back up the stairs to get his cell phone....and then I had to make a second trip up and down to get something else he forgot. I simply smiled and said, "you owe me!" Couldn't do much else as we have houseguests this week and I have to present myself as the endearing "bosses wife". LOL!!!
Not sure what time the houseguest leaves Monday, but I know hubby has to go to the cardiologist that afternoon. Will be interesting to see if he crashes before he gets there. I'm anticipating next week will be a bear. He will be depressed when his staff leaves town....and he will be crashing from the high of this week. It's interesting that I am to the point where I can predict what is going to happen to him based on his highs and lows and what's going on in his life
So, he's off with his staff today on a sporting outing which will be quite physically exertive. One of the guys has already agreed to drive back. This evening is a social event with about 40 people. Tomorrow, they will all be here for most of the day. I'm wondering how much he can push his body before something major happens. I wonder if his glucose levels are so high that he won't even remember much about the week.
DW
Tuesday, February 02, 2010
Pain
So, the percocet is working. His pain is getting under control which is lowering his glucose, he's moving and feeling better.....even smiling. After 2 months in bed...we are slowly getting back to some type of "normal". And it is great!
But, he also has his his staff in town for a retreat of sorts this weekend and I think that will keep him in good spirits thru Sunday. I'll take what I can get. Monday is the cardiologist.
So far, he has stuck to the Low GI menu which I assume is helping as well.
Amazing how pain can throw a diabetic so far out of whack. Again, that roller-coaster merry-go-round vicious cycle. The more the pain, the more adrenaline, the higher the glucose, the less movement....it just compounds and explodes the problem. Sad that his doctors wouldn't give him any pain meds until after the MRI.
Was a good weekend all-in-all.
DW
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