Tuesday, January 13, 2009

11% A1c

That's about 280 right? 11% would equal 280? I keep saying this to myself, over and over. 11%???? That hurts my heart and echos in my mind. Tonight I was talking with my mom over the phone and she was updating me on my Dad's recent lab work. He sees his Kidney doctor every month since starting Dialysis back in 2004. Normally his doctor says he is doing great, but not this time. His Phosphorus levels are sky high, (which I thought they would be just due to the Dialysis?) his blood pressure has skyrocketed, among many other serious concerns. His A1c is steady at 11% where it has been for years, WHAT? I swore my mom said he normally ran in the 7's!! 11%??? That's typical for him?

8-10 yrs ago my Dad really started to go downhill. At that point he had Diabetes for nearly 20 years and was still on 70/30 insulin. (still is to this day!) The day his health came crashing down was on Hannah's 4th birthday. He was experiencing symptoms of a stroke but still attended her birthday party, without mention. I'm not sure if my mom knew of his symptoms the entire time or not, but afterwards she mentioned it to me and I finally convinced them to go to the ER. She could never convince him to stop and seek treatment for any ailment anyway. I don't know if he thought the feelings would pass or if he just hated the hospital that much, maybe he didn't care. To this day I still don't know what makes that man tick!

As a child my Dad often told us that doctors are useless. He is a very stubborn man, set in his way. Old fashioned, anti-social and a quite bitter overall, although his laughter would always brighten my day. He didn't laugh or smile often, but when he did it sure made a difference to us kids. My mom was a stay at home mom because she WANTED to be. My dad worked as a department manager in the factory for PING golf clubs. His job was strenuous. He worked in a swamp cooled building in the Arizona heat 10 hours a day. He never missed a day of work unless he physically couldn't be there. He had alot of stress being the only income for our large family. My Dad had a horrible childhood. Thank goodness he didn't have Diabetes as a child, his life was hard enough. He was diagnosed at age 32 as Type 2 and put on pills. My entire family is on the small side, I'm guessing my Dad is about 5'9 and stays around 170lbs max. When he was diagnosed he weighed in at just 130lbs according to my mom. She says she will never forget how sick he was. Other than her telling me how sick he was initially we NEVER talked about my Dads Diabetes. He remained on pills for many, many months before injuring his finger at work. When the doctors realized his finger would need to be amputated they diagnosed him as Type 1 and he was put on insulin.

My Dad seems to always wait too long to care for himself. He doesn't speak up. We all know how Diabetes was treated back then. See the Dietitian, alter your diet. Adjust insulin accordingly. Visit the doctor once a year. Well, my dad never did. He didn't have routine lab work because he felt it was a waste of his time. He didn't check his blood sugar routinely, in fact, I don't remember him ever testing each day. I think I saw his meter once a month perhaps? I knew when my Dad was high because he wouldn't eat anything but green beans for days. I knew when he was low because he would sweat profusely and drink regular soda or juice. I never heard a number. I didn't even know what normal blood sugar was as a kid, even with a Type 1 parent. I wonder how low was low for him? Was he not technically low but feeling "low" in the 100's?? I never saw him check his blood sugar when he felt low, he just treated it. (yes we all do that sometimes!) My Dad was a very active man, always working in the yard, rebuilding old cars, or being Mr fix it. He was low alot, I remember that. My Dad was rarely found sitting around even though his job was just as physical as the time he spent around the house. Even in the 120 degree Phoenix weather my dad never stopped working. When my dad would become ill he would refuse to go to the doctor or hospital until he was physically unable to stand. Usually this was by the third day or so of vomiting. (I assume DKA) He spent several days in the ICU on countless occasions when I was a child. I had no idea why/how Diabetes did these things to him. As a child I just figured this was "normal" for Diabetes. I remember at the age of 10 or so thinking that Diabetes must be alot like Cancer, debilitating, but it wouldn't kill you. I never knew how serious it was. I never knew if Diabetes was left "uncontrolled" it could have such complications. I wonder if my Dad even knew?

After my Dads stroke it seemed a domino effect had set in. Multiple attempts with laser surgery for his Retinopathy failed leading to his disability status. My Dad was disabled? It couldn't be! He was always so active and busy, he seemed so healthy! He was legally blind? What will he do if he can't work? He HAS to work, he lives to work hard, that is all he has... He doesn't leave the house other than to go to work, Home Depot or Auto Zone!! He has never been to a shopping mall, movie theatre or even other family members houses! He NEEDS to work!

My Dad's Kidney failure set in just after his "disability" from blindness. I still didn't have my own Diabetes at that point. My sisters and I had to co-ordinate with my moms work schedule to get him to the Dialysis clinic three times a week. It was pure torture seeing him and all the other patients hooked up to the Dialysis machines. I can only imagine how he felt himself. It was then that I started to read alot about Diabetes and learned all the truths associated with it. The more I learned the more I wanted to learn. I wanted to know WHY these things were happening to him. I wanted to help him get better, I wanted my children to have their Grandpa no matter how grumpy he may be.

I was about 21 at this time and for some reason I had always felt that I would "get" Diabetes too, even when I was a child. Maybe that is a normal thought for a child when their parent has a disease, I don't know. Maybe it was because I often had "hypo" feelings when I didn't eat. Somehow, I just knew my time would come. I watched my diet knowing that sugar made me feel bad, and I knew I would crash feeling low if I ate too many carbs without balancing my meals. I always thought Diabetes was an adult disease, I never knew there was a "Juvenile Diabetes." I remember feeling like I HAD to know all there was to know about how our bodies work because I never wanted to be in my Dads place. The more I realized my Dad could have learned more about Diabetes to stay healthy, the more sad for him I became. It really didn't have to be this way. Did he know there were new ways of managing his Diabetes? Did he know about all the new insulins available? Would he still be in this same place regardless of how "educated" and diligent he was?

I know in my heart that my Dad did his honest best by watching his diet all those years and taking his shot every night. He really did. That was all he knew to do. I realize he wasn't educated enough to live well with Diabetes. He didn't know it was up to him to learn more. He probably didn't even know there was more to know! He simply did what he was taught in the beginning, which wasn't enough. He was left behind, and today he pays the price. My heart has suffered with him, every step of the way. We have all watched Diabetes destroy him slowly one step at a time....Because he didn't know any better. That makes me sick to think about. It didn't have to come to this. The scariest part is that maybe it would have anyway. I hate that my mom doesn't understand that. There are no promises with this disease, that to me, is the hardest part to accept. Studies indicate that a large percentage of people with Diabetes have complications of some sort after 20 years. At age 48 I will see my 20th year of Diabetes. At age 26 Maddison will see hers. Is it ever enough? Are we ever doing enough to manage this disease? Is our best effort and constant diligence even enough?

I tell my Dads story not to inflict sadness or heartache, or to gain pity. I tell you his story because it has influenced who I am today. My Dads situation explains alot about my desperation to "micro" manage Diabetes, especially for Maddison, and I am tired of it. I know better. All I can do is my best. I'm trying to stay on top of the Diabetes emotional roller coaster and tonight talking to my mom has gotten the best of me. Now I can't sleep. I'm thinking too much about his life, his struggles, his complications and the fact that he has nowhere to go now but down. I don't think his body can fight much longer. At age 63 my Dad has fought his Diabetes for over 30 years. I want him to know his complications aren't his "fault" and I want him to know that Maddison and I will be okay. Most of all, I want to tell him I understand what he has endured all these years and I want to tell him how much I appreciate the Father he was despite it all. I think I need to visit with my Dad. He lives just 15min away yet I don't make it there often enough. I can't hide from his nasty moods any longer. He needs me. He needs his children and Grandchildren to visit him, we are all that he has to look forward to each day. Alone in a quiet house all day. Dialysis every 5 hours. I need to overlook the sadness that seeing him inflicts. This weekend, I will.


Scott K. Johnson said...

Very touching post. I too often wonder if doing our best is even enough. There's just no rhyme or reason to it all sometimes.

Penny said...

I have days where I feel burned out and think "why bother?". Days where I think Riley's sugars are going to do whatever they want anyway so why not let him have cake for supper.

But, we have knowledge and knowledge is power. It sounds like your dad never gained that knowledge for whatever reason. Now all you can do is love him and support him.

The complications after 20 years of D gets to me too. Riley will be 23. But, I look at the advancements that have been made in the 3 years since his diagnosis and I know he'll be OK. He's smart and he's motivated. He'll be OK.

And your Mady and you, you'll be OK too. And your dad, he'll be OK because he has the love of his daughter and granddaughter who "get it". The love of family trumps everything else.

(((big hug)))

Jill said...

Ditto what Penny said! Right now all you can do is continue to educate yourself and Maddison...as well as those around you...because it might just be that one person you speak to that ends up being diagnosed with diabetes at a later date and they can say "I knew that already because I was told about this before" and they will think back to YOU educating them.