Tuesday, February 09, 2010

A letter to my friends.....

This is a copy of a letter that I sent out to my friends. I thought I would share it here. You will see a different side of me. This blog is where I spew forth my anger about diabetes, my frustrations with the medical community.....and I tell it like it is. It's the side of me that my husband and my friends never see. But at this point, I thought my art pals (all over the world) needed to be brought into the loop, so here's what I wrote to them (removed the identifying factors I hope):

To those of you who personally know my husband and I, this will hardly come as a surprise. Yet I find myself fighting depression and I know he is, too. The news from the cardiologist is not good. So I will back up for those of you who don't know him.

He has had type II diabetes for about 35 years now. It's hereditary. His father has it. His grandfather and great grandfather both had it. He opted at a very young age to "blow it off". He chose a path of non-compliance.....eating whatever he wanted, doing whatever he wanted, never testing his blood levels.

When I met him, he was simply taking pills to control his blood sugar. About 5 years ago, he went on insulin shots. And I started doing the research then.

About 3 years ago, he found out that his kidney function had dropped to 50%. I went through a year and a half of crying, pleading, begging him to start taking better care of himself. But he said that he wanted to live his life the way he wanted. I decided that he had a death wish, gave up, and lost myself in my art. His kidney function dropped to 26% and he would shift between stage 3 and stage 4 kidney failure. I started a very private blog and began recording what was going on with his diabetes. It got me into a lot of "hot water" with diabetic individuals because they refused to acknowledge that what was happening to him could ever happen to them.

He never tested his sugar. His A1C always showed up normal. But I knew he was going between great highs and great lows and it was merely averaging out as normal. He refused to listen to me. I kept studying.

A year ago, his back started to hurt. He refused to see his doctor. Last May, he had what we thought was a major angina attack when we were in a remote canyon in a foreign country. At the time, I thought it was a heart attack and thought he was going to die. He was deathly ill for the next 2 days. I pretty much figured that was the last of our adventurous trips. He promised me he would go to the doctor when we got home. He never did. I gave up.

By Thanksgiving, his hip had started hurting from his back pain and he cancelled our trip and took to bed where he has been most of the time since then.

In December he went in for his annual physical and finally, his A1c was off the charts. His glucose levels were averaging about 300 a day. The phone started ringing off the hook and the "professionals" took over. He postponed everything until this week in order to have his staff here for superbowl weekend. He has been surviving on percocet the past month.

So yesterday, the cardiologist told him that the "episode" in the canyon was a heart attack and that he was lucky to be alive. She put it into very plain English....but I'm not sure how much I "heard" after that. Because of his diabetes and his glucose levels, he is at a crossroads. He needs to have heart surgery first. We have scheduled an echocardiogram and a cardiac catheterization in the next 2 weeks. He has to have both procedures done. This will reduce the amount of dye they use in the cath. The dye may still cause kidney failure and result in dialysis. His kidney levels have reduced down even farther.

Those 2 tests will confirm the path he will take, but it is most likely, because of the diabetes, that he will need bypass surgery. If he has a heart attack during the cath process, they will take him by ambulance to the downtown hospital, to do surgery that day. She said it in such a matter-of-fact voice that it was almost like this is what she is expecting to happen. They do not do heart surgery at the hospital here. She told him to pack as though he were going to stay in the hospital.

If he survives this (he does have a DNR in place), then he will need surgery on his back as soon as he can. She read the notes from the MRI in full to us. I think she said he would have surgery at the L3, L4, L5, and L6 and that it would be major and extensive. "the neurosurgeon has a really tough job in front of him if he is to fix all this." Hubby visits the neurosurgeon in a couple weeks. She wanted that visit before the cath, so the cath is scheduled after that. She explained that his spinal stenosis is part hereditary, but part caused by a type of hardening of the arteries, narrowing of cores, brought on by his high glucose levels.

On top of all of this, he has high blood pressure, arthritis, gout, and several other issues that can all impact surgeries.

My prayer is that Jehovah's will be done. I would ask that you pray for the same. And that his spirits be lifted up. He was in a tailspin depression last night and I was fighting it myself. It is up to me to remain in good spirits and keep him as cheerful as I can. The cardiologist was incredible. She explained to this that this is not his fault. His diabetes is genetic. His heart disease is genetic. His father and mother have both already had stints and bypasses done. He simply chose a path that brought him to this point at a much earlier stage than he might have been, but there isn't even a guarantee on that. She told him that he absolutely has to counsel his kids that they and their kids are already on this path and that it simply doesn't matter how well they take care of themselves, they may end up in the same place because it is in their genes.

Because I have been studying and researching, I have known for the last couple of years just how precious our life together is. He can drop to stage 4 kidney failure at any time and have to go on dialysis. I know he will not opt for a kidney transplant. I know that we probably have no more than 10 years left. I have known that the key has been to keep him at stage 3. He has never understood that. Until now. He has finally agreed to a low glycemic menu which I have been doing since December. He has joined me...."kicking and screaming" every step of the way. But he is finally starting to make healthy choices when it comes to what he eats. He needs to exercise....but literally cannot because of the pain. He discussed that with the cardiologist yesterday and she agreed it was part of the catch 22 he has himself in at the moment.

I know that I am scared to death. I am putting my heart out on my sleeve here today for all of you to see. A side of me that I rarely share with anyone else. But for this journey, I am calling in all my markers. I have told my family and they will all be here for me. I may call on you that live close by. I know you are all more than willing to help. But as the cardiologist explained the progression of what is ahead for us, I think I will save most of your offers for his back surgery. If we make it through the heart surgery, I think his greatest trial will be the back.

I knew that 2010 was going to take a different turn for us. I knew he was going to need heart surgery and back surgery. I have been trying to prepare us for that. But we were both completely thrown off track when she explained that he had already had a heart attack. She said, "9 months ago? It's time we deliver this baby!" It hit me that the last 9 months have been a complete gift. And that each day from now on will be yet another gift.

He does have a goal. To survive until April. His first (and probably only) grandson is due then. I'm hoping we can get through this and be on the road to recovery by then. His second "goal" is a trip the first of May. He wants to buy the tickets today and I think I will let him - just because it will be more incentive for him to be in travel mode by then. Not realistic at all.....but money well spent in "inspiration".

I wonder about my art. What I will be inspired to design. When you have to travel a path you did not chose and do not want....I suspect that art can still heal and help. I'm not ready to call this an "adventure", but I already know that when I look back, we will all say, "well, that was definitely an adventure!"

Finally, to R. My dear friend. Read this to H. MAKE him do whatever the doctors tell him to do. If he doesn't, he will end up exactly like this. And I wouldn't wish this on anyone.

If you are local, and come over, do not give him one ounce of sympathy. Seriously! It will just make him feel worse. He needs to have laughter in his life right now. He's the kind of guy who needs to be a man's man and that's why this is so hard for him. S is coming tomorrow and I know she will make him laugh. Kwill be over Thursday and you and I are just going to have to be plain silly!! So now that you all know exactly where I am....we can get back to the "art of playing" - it truly heals.


So to add to this, the more personal side of what's going on......as I remember bits and pieces of yesterday's conversation with the cardiologist, I will come back and post them here.

She asked him if he had high blood pressure. He said "no". She looked at me, I looked at him. He said, "well, I am taking medicine to keep it down". She looked at me. I looked at him. She said, "You have been diagnosed with hypertension and cardiovascular disease. You HAVE high blood pressure."

I mean she called a spade a spade. Yet I think this is a good example of how he has rationalized everything.....and what I have had to deal with. He has never admitted that he has high blood pressure. He feels that because his numbers come out good every time he takes it...he is "normal". The pill that he takes to keep it normal doesn't count.

Diabetes has been the same way. Because his A1c has been normal in the past...he didn't really have diaetes. He could eat anything he wanted. The pills and then the shots he took didn't really count.....it was the A1c that counts and as long as that was normal....he could eat anything he wanted and he never had to test his glucose levels.

Perhaps that will help to explain the logic he has used for the past 35 years in dealing with his disease.

She told him that he was lucky to have me. That he needed someone to constantly remind him what he could and couldn't do. I think she was preparing both of us for the trip we are about to embark on.



Anonymous said...

Dear DW, My heart goes out to you; as I wrote to you awhile back we have been there - exception is the kidney disease (my DH has liver disease instead). His open heart surgery was in 1999 and he has never been evaluated for back surgery, just takes tramadol and tylenol which are terrible for his liver. Same catch-22 on the exercise: he must but he can't.

Interesting that in our case it was also a woman practitioner - actually the RNP at our primary's office - who finally was able to speak in ways that J would hear. She convinced him to go on insulin after 17 years on oral meds with glucose levels ranging from 40 to 500 and A1Cs ranging from 8 to 11. It had been "suggested" by the (male) doc for years but J was afraid of needles and doc never pushed it. The RNP told him in no uncertain terms what would happen - was already happening - to his body and mind if he did not go on insulin; finally, he got it.
Makes me wonder how much of a role gender plays in the practitioner's willingness to tell a "man's man" what he needs to hear whether he likes it or not...and the man's openness to it.

Anonymous said...

DW - I don't know whether to say "I'm so sorry" or "keep up the good work" you are so strong and you will do well. you do have the strength to handle this -- even though it is SO HARD!!!

I'm struggling through all the snow and really tough work stuff right now. At least Tom is handling his diabetes reasonably well -- for the most part right now. We have our days. But its mostly ok.

Maybe its because he knows I just couldn't handle it right now.

please know my heart and hopes are with you. even if I'm not writing so much.

Tom's wife.