Saturday, March 20, 2010

Part 2, the Journey

I think it was his second night in ICU. They took his oxygen off and put on his cpap. Sometime in the middle of the night, he woke up and couldn't breathe. His oxygen saturation had dropped and this was compounded by the fact that he had to lay flat on his back and he always sleeps on his side with the cpap. He couldn't roll to his side, he couldn't get up. He said he was gasping for air.

He panicked. He went into a major anxiety attack. He rang the call button. The nurses came and put him back on oxygen, but that fear he was in kept him awake all night long. He didn't call me because he didn't want to wake me up. I felt horrible when he told me the next day and made him promise to call me any time. We also arranged to have the phone put on his bedtray at night so he could call. I think it was day 4 that he decided to keep his iphone in his pocket. And he did use it to call me whenever I wasn't there. Once he got moved to the heart unit, he had a privat room and I could be there from 8 am to 8 pm. I think it's ok that they ask family to go home at night. I was able to keep up with my rest and he was resting knowing that I was taking care of myself.

Because of that incident, he stayed on oxygen for the next 5 days. I'm pretty sure he was scared to death to take it off. Even during the day when the nurses asked, he did not want to take it off. They slowly started lowering the amount he was getting and he realized in time what was happening and that he was breathing just fine.

I can't fathom the fear that he must have had. To be alone in a hospital room (thank goodness he was still in the ICU unit), have no one in the world with you, wake up from sleeping, and not be able to breathe. It must have been a horrible experience. He has talked about it a few times and said he never wanted to go through that again.

The next night was the longest. He called me several times and I knew he was afraid to go to sleep. I just kept reassuring him that he was back on oxygen and didn't have a thing to worry about. I'm sure that was easy for me to say and hard for him to accept.

On the upside of it, I think it made him a better patient. I think it made him listen to his own body a little harder. He said he didn't think he was ready for the cpap but they wanted him to try it. After that, he would say "no" to anything he didn't think he was ready for. So that is good.

Because he has spinal stenosis, walking was almost impossible. But he did so well. He did 300 feet the 3rd and 4th days, 4 times a day. I noticed that even with the oxygen while walking, if he started to get a little winded, he would turn around and head right back to his room. I know he was still afraid of not being able to breathe. I did many of the walks with him, counting steps. Some days were 400 ft, some were 100 ft. The staff was ever so supportive of him and encouraging with each little improvement. Since coming home, he has continued his walking - about 400 ft, 5 minutes, 4 times a day. Now, to a normal person, that might seem so minimal, but it is more than he has done in 3 years, so I think it's wonderful!

Ever stop to think about the fear of falling down while walking just after you've had open heart surgery? The Physical Therapist talked to us about that. And the fear of having a car wreck on the way home. I don't think I ever drove so slow in my life! LOL!!! And we are being pretty cautious about how he walks here at home.


Friday, March 19, 2010

Remembering the journey

It's been 9 days since he had his bypass surgery. And in all that time, I haven't had the time to sit down and write about the actual surgery. So if your spouse is headed that way, know that you will be completely consumed with his care. Hospitals no longer provide in home care. They spend a couple of hours teaching someone in the family what to do. I never wanted to be a nurse...but guess what - I can't think of much that a nurse would do that I haven't done this week!

We woke up at 4 am to leave at 4:30 am to arrive at the hospital at 5:30 am. His surgery was scheduled for 8 am, so he was in pre-op for 2 1/2 hours and he says they were working on him non-stop. I got to go in for 5 minutes to say good bye. I can't tell you how heart wrenching that is. You just don't know what is going to happen. They had explained it to us step-by-step...with all the possible outcomes including death. But when the moment arrives, you realize that while you know all the possibilities, you don't have a clue as to what is really going to happen.

I haven't written about my religious beliefs, but they are quite strong and I was surrounded by family who were in constant prayer the entire 5 1/2 hours of surgery. I literally felt the presence of God in our midst. Yet at the same moment I felt His peace, I still felt the anxiety if the nurse wasn't out to give her report the moment she said she would be.

The first report came at 9:30 am when they had finished harvesting his veins. I remember thinking, "1 1/2 hours to pull a vein out of his leg? We are going to be here forever!" I refused to leave the room. I didn't eat. I didn't even think about eating. I think I sat there just praying. Family members would talk to me, carry on conversations....but I swear, I can't remember what they said. I was focused on one thing only - my husbands success. Well, perhaps the surgeon's success is a better way to say that.

At 11 am, the nurse returned and said they had done 3 bypasses and a TMR. I had absolutely no idea what a TMR was and she tried to explain it to me, but I think my brain had shut down from stress at that time. I remember she said something about poking 9 holes in his heart. I think because we had not discussed this before hand....that I just went into shock. After all, hearing that someone has had 9 holes poked in their heart...ok, they really should bring the needle out and show you how tiny 1 mm is, because my brain is thinking horse needle at this point!

So, for the next 2 1/2 hours, I sat there in a panic. I had this vision of blood gushing out of his heart. I did not know that the blood clots the moment the microscopic needle is removed. No one bothered to explain that to me. At 1:30, the nurse came out and said he was all stitched up and the doctor would be out shortly. So my brother decided that we would record the conversation on my iphone. I still have not listened to it. I don't know when I will be able to.

The surgeon was wonderful. He took my brother and I into a private room. I know the rest of the family wanted to be there, but my brother is my rock. The surgeon (finally) explained what a TMR was and why they had to do that instead of the 4th and 5th bypasses that were planned. High blood sugars had caused his arteries to corode...constrict...and in many places, completely close off. So 100% blockage with not even enough healthy vein to attach a graft to. The surgeon had sketches and showed us exactly where the 3 grafts were done and where the punches were made. He kindly and gently explained how these punches will generate blood flow that will create new capillaries that will improve his blood flow. He said that he was pumping 3 L of blood per minute before surgery and that increased to 5 L per minute after the surgery.

I think I was able to listen because I knew we were recording it. But it helped to have the diagrams as well. And he said, "now, go eat!" And just like a robot, I ate. But again, no idea what I ate. I just did what someone told me to do. Sort of numb, suspended, not thinking yet not not thinking - if that makes sense.

It was about 3:30 pm when we got to go into post op to see him. He was still on a ventilator. That was pretty hard to handle. I stood there and stroked his forehead because that was literally the only place I could touch that didn't have a needle, tape, something else covering him up. His arms were strapped to the bed to prevent him from yanking the tube out of his mouth. He finally responded to my voice by shaking his head yes. But mostly he was asleep.

He says he doesn't remember a thing until his son left which was about 7:30 pm. I'm grateful for that. It was 5:30 before they took him off the ventilator. Family could not be in the room during shift change between 6 and 8 pm, but they did let his son in. I went back at 8 pm and stayed for another hour before going home. They don't allow family to stay after 8 pm. He went to ICU about 7 pm. It was literally the longest day of my life. Physically getting up at 4 am, mentally sitting in the surgery waiting room, wondering each moment of each second what was happening down the hall, worry beyond comprehension, relief I have never experienced each time the nurse came out with a good report, and then sheer exhaustion after talking to the surgeon and knowing all was well for the moment.

If you ever have to go through this, just make sure you surround yourself with family, people you love and that love you, and put your trust in God. I had asked for nerves of steel and they kicked in the moment I saw him in post op. I'm the type that gets sick to their stomach at the sight of a needle. Yet in that room, with all those machines, constant beeping, him on the ventilator....I didn't even flinch. That in itself was amazing.

He has no idea....and will never know....what he put me through that day. I realize that the physical side of what he went through was extreme, but the emotional side of waiting and worrying was what I had to endure. I had moments of anger. I "saw" him sitting on the sofa, eating an entire bag of potato chips and thinking that if he had taken care of himself, neither of us would have been there. I had moments of "survival" when I would tell myself that if he ever eats a single potato chip again, I will leave him. I think that's what those thoughts were....survival. Ways to get through the day, past the moment, escape the constant worry. It felt like being on a merry-go-round and a roller coaster at the same time.

Enough for tonight. I wonder how long it will be before I can listen to the doctor's conversation. I haven't even told hubby we have it recorded. He needs to heal a bit more.

If you have a diabetic spouse, read this to them. Let them know they could be here sooner than they think. Remember, my husband had a normal A1c until last Thanksgiving and this damage did not happen in the last 3 months. It's been happening every single time he had a high. I may just have to change the name of this blog and call it "the ugly truth about diabetes". You can choose to be just like him and deny that you have a problem with your diabetes. Or you can step up to the plate and test yourself 10 times a day and know how often you are actually going high. You can change your diet now. You can start to exercise today. Because if you don't, you are going to put your spouse through this very same scenario. And you might not be as lucky as my husband is. Trust me, I know that each day I have with him from now on is nothing short of a gift.


Wednesday, March 17, 2010

The UGHY truth!

I think you can think you are doing everything you can to keep your diabetes under control, but still be one of these numbers (below).

Numbers don't lie. They tell us the ugly truth about this disease.

I think you can have all the right labs, do all the right things, eat all the right foods, and still be one of these numbers in the works.

I think it depends on how long the disease has been with you. How often you test in order to find out if you are going high and low and averaging out to a good lab result. How much sugar you eat (remember I think a carb is NOT just a carb, that they put sugar in our bodies at different rates). How much exercise you get - in order to keep oxygen in your blood and flowing to all areas of your body.

I think you can think you are a "compliant" diabetic and you can still be one of these numbers.

It's only my thoughts, but if you take the time to read through all these statistics.....if these are just the "non-compliant" diabetics.....then there has to be a whole lot more spouses out there going through this than just me. Think about it, 1400 non-compliant diabetics die every week? I'm going to guess there are a whole lot of "compliant" diabetics in these statistics.

Just read each number and then ask the question, "Were these all non-compliant? How many were compliant? Could it be you next?"

So many diabetics send me comments like "this will never happen to me" or "these things don't have to happen to your husband" or "if he would take better care of himself, this wouldn't happen."

Ya think?

From Stop diabetes and the Diabetes Assoc

In the next 24 hours, diabetes will kill 200 people. That's 1400 people per week.

"Were these all non-compliant? How many were compliant? Could it be you next?"

72,507 died from it in 2006, but it contributed to 233,619 deaths in 2005.

"Were these all non-compliant? How many were compliant? Could it be you next?"

1 out of every 4 people who have diabetes, don't know they have it.

"are any of these people compliant?"

20% of the population is at risk for developing it. That means for every mother, father and 3 children, 1 of them is at risk.

"are any of these people compliant?"

Diabetes doubles your risk for heart attack and stroke.

"does it matter if you are compliant or not? They don't tell us"

23.6 million people in the US already have it and another 57 million are prediabetic

23% of people over 60 have diabetes

75% of adults with diabetes have high blood pressure

"are all 75% non-compliant?"

So just keep inserting those questions after each statistic:

It is the leading cause of blindness in adults. It casues 12,000 - 24,000 new cases each year.

In 2005, 46,739 people with diabetes became ESRD - end-stage kidney disease - living on dialysis.

60 -70% of people with diabetes have mild to severe forms of nervous system damage.

in 2004, 71,000 lower-limb amputations were performed in people with diabetes

Average medical expenditures are 2.3 times higher than non diabetics.

In 2007, the total cost of diabetes in the US was $218 BILLION

1 out of 3 children born in 2000 wil develop diabetes in their lifetime.

40% of people with diabetes suffer some degree of hearing impairment.

2/3 of those with diabetes die from a heart attack or stroke

23% have foot problems

28% develop chronic kidney disease

Which number are you?

Do you read my blog and think that none of this will ever happen to you? Probably might want to rethink that one! The numbers are just too great for me to believe that this only happens to people like my husband.

Do you read my blog and get angry because you don't think you could ever put your spouse into this position? Think again. How many of those 72,500 diabetics who died had a spouse? You can't believe all of them were non-compliant? They put their spouses through the very same fear, heartache, burden, nursing tasks, etc. that I am going through. Reread that line because that's the number that died from diabetes. Another 233,619 people died from something else with diabetes as a contributing factor.

Print this out. Post it on your refrigerator. Circle the number that you are. And start talking to your family about it now. Start preparing them. And if you can't circle the number you are, then start working on your own denial. Because if you already have diabetes, you already are a number. And that's the ugly truth!!!


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.