swift hello and long story

graftgurl

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Does banging your head help one's memory?

swift hello and long story

« on: October 26, 2008, 12:13:22 AM »

Let me start off by saying that I am so thankful to have found this site. I hope to learn about everyone and how to deal with the detour my path has taken. Here's my story:

I have been a diabetic for 37 years (diagnosed when I was 5 years old). It has been a hard road most of the way. I wasn't the ideal patient because it seems my body did not respond to treatment (insulin shots) like others did. The doctors had to try 5 different types of insulin before they found one that my body could handle. It was expensive and my parents were typical working middle class parents. My mother had to quit her job when I was diagnosed because I required so much supervision in the beginning. My blood sugars would fall quickly and usually during the middle of the night. A majority of the time it was so low that I became confused and would fight her when she tried to get me to eat something with sugar in it. She usually ended up rubbing jelly or honey into my gums since she feared I would choke on solid food. It would be 20-30 minutes before I "came around." The next day I would be so sick from all the excess sugar during the night and so I would usually vomit and be dehydrated. It was rough.

We didn't have glucose meters to monitor out sugars back then (and we walked to school barefoot in the snow for 5 miles

). So the only time we had an accurate picture of my sugars was the bloodwork done at my 6 month visits with the doctor. There were also not alot of doctors that specialized in the treatment of diabetes and so we had to drive 4 hours to see the nearest specialist each time. The only other indicator we had that my sugars were not "normal" was a very old fashioned test tablet that you dropped into your urine. It would bubble and change color depending on how much sugar was in your urine. I was in and out of the ER several times over those years almost comatose due to extremely low sugars.

I learned about blood glucose meters when I was a freshman in college and never even knew there was such a thing. The first one I had was about the size of an old electric typewriter and could not be moved if you wanted it to be accurate. I tried to be a normal college student but did not have much success. During my senior year of college, I had trouble with alot of swelling in my legs. The doctors ran tests and could not determine the cause. So after awhile they stopped trying to figure out the reason and just treated it with diuretics/water pills. After about 8 months the problem resolved itself. I was determined to live a normal life and even though I stayed within some general sense of control, I did not take very good care of myself.

After graduation I got a job and worked hard. My high school sweetheart and I got back in touch and after a short period of dating long distance, we got married. Two days later he shipped out to Saudi Arabia/Iraq for Desert Storm. It was so much harder than I ever thought it would be and my health suffered from the stress. I began having debilitating headaches and was hospitalized for more tests. I spent a week in the hospital on IV pain medication for them and was finally diagnosed with migraines. Over the next 7 years I took various medications and frequently visited the ER for these headaches.

During that time I also became pregnant. We were elated and let everyone know as soon as we were sure. My pregnancy was extremely hard. I had morning sickness all day, every day for my entire pregnancy. The migraines were much worse and we consulted with several physicians to see what medicine would work and would be safe during pregnancy. No one agreed on any one medicine. Finally, after numerous conference calls they decided to compromise on one. I took it the rest of my pregnancy to prevent and treat the headaches.

One morning at the end of my 2nd trimester I woke up and my eyes were swollen shut. My face and whole body was full of fluid. I called my OB/GYN and they had me come in right away. My blood pressure was thru the roof. They sent me over to the hospital to be admitted for preeclampsia. I was in the hospital for 5 days on an IV medication for preeclampsia and to treat intermittent contractions. It was too early for the baby to be born. The night of the 5th day is when my kidneys began to fail. I had only put out 1 oz of urine over 6 hours and my blood pressure began to skyrocket again. I was miserable. They whisked me away for an emergency C-section. People started swarming into the operating room and besides being extremely sick, I was petrified. My baby girl would be a preemie at 29 weeks gestation. She only weighted 2 lbs. 14oz. 3 days after my C-section my kidneys returned to normal. Our daughter came home 7 weeks later at 5 lbs.

Over the next 8 years I still battled with migraines and I developed debilitating back pain. It took several years for them to finally diagnose retroperitoneal fibrosis - those are fancy words for "scar tissue pulling on the ureters and the kidneys." After being on numerous pain medications a local doctor gave me an implanted pump that fed very low doses of pain medication to my spinal nerves and deadened the pain. Since the medicine did not enter my blood stream it did not make me drowsy or nauseated. I could participate in my life and my daughter's life again. It was great. The bad news was that the disease had been caused by the medicine I took during pregnancy for migraines - the one they claimed was safe. I was very angry.

Fast track to 2 years ago: My test results at an endocrinologist appt. showed that I was leaking alot of protein in my urine. My creatnine clearance and GFR were also abnormal. The doctor sent me to a nephrologist. He said I had chronic kidney disease (CKD) caused by a combination of the long term diabetes and that other weird disease. I was in stage III. For 2 years I went back and forth between stage III and stage IV. At my routine checkup in July, the nephrologist told me that my lab work was much worse. He wanted to rerun the tests and add some also. Those results were not good either. Two days after my birthday they put a graft in my right thigh. I had so many problems with horrible veins in my upper body that they had been unable to create a fistula and felt a graft in the leg would be much better.

So here I am. I began dialysis on Aug 21 '08 and it has also been a hardship. It seems nothing ever comes easy. When I started I was on 2 blood pressure medications and on blood thinners. The first couple of treatments my blood pressure bottomed out and they had to put me upside down to bring it back up. My graft would bleed for 20-30 minutes after the needles were taken out. Also there were several times when I left dialysis and was out running errands when I looked down and my leg was bleeding profusely. Sometimes as many as 5 hours later. It was ridiculous and just a little scary. So after 2 months of dialysis I have been taken off of all blood pressure meds and all blood thinners except for a baby aspirin. I have also been having trouble with my right leg since they put the graft in. Because some of the circulation was rerouted to the graft, my lower leg has some pretty dramatic color changes. The doctors are calling it "Steal Syndrome." It was working on one of my worst fears of having to get an amputation. My foot and ankle turn red, then maroon, and finally a very dark purple. A venogram last Friday showed that the graft is working extremely well and there are no obstructions or clots. They say that is good news, but the bad news is that they can't do much about the color changes. My right knee and leg have also been swelling tremendously - sometimes growing by 6 inches.

I would love to talk to anyone else who has a graft. I have alot of questions. I'm sorry this has been so long and I don't blame anyone who sped thru the bulk of it. My life is complicated and I don't know too many people who can relate. I'm sure everyone here can and does. I can't wait to meet all of you. Kudos to the creator of this site and to those who keep it running. I hope to be here for a long while. Was this supposed to be a short intro?


	Logged

graftgurl
CKD in fall '03
leg graft July 9 '08 (2 days after my birthday)
began hemodialysis August 21 '08
petrified to apply for transplant b/c of other health issues
Type 1 diabetic for 37 years
single mother of teenage daughter
who was a 29 week preemie due to Mom's short-term
kidney failure and resulting in emergency c-section

G-Ma

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