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

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

Jason said,

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

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

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

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

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

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

36 hours

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

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

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

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

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

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

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

to Carol

thank you.

DW

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

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

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

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

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

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

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

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

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

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

Week long high

Phil wrote:

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

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