I was 28 when the reality of my world was changed irreversibly and forever. With the mentality of many of my generation and my medical infirmities, I thought I could go on fooling myself indefinitely. That definitely was NOT the case.

After having dealt with the disease of diabetes mellitus since the age of 11, it was finally my time to pay the piper. Neglect in the care of the disease, by both myself and of doctors, along with unhealthy denial and lifestyle, had brought me to the point of ESRD diagnosis in 1989. That wasn't the whole of it by any means. I had suffered with the undetected high blood pressure for years; calling it "low blood sugar" and not bothering to see a doctor about it. My vision had been changing in its acuity for several years but diabetic retinopathy, glaucoma or lasers had not been done or diagnosed as yet. How could they have been without seeing a doctor regularly? I had been extremely thin for several years and the edema had only been apparent for about a year. Again, the total denial was in full swing.

All that came to a screeching halt when I was forced to admit that I could not work at the same level any longer and went to see a doctor on duty at the emergency satellite center. I did not even have a regular physician. 220/200 blood pressure got some attention from the medical personnel there and before I knew what happened next, my ignorant, neuropathy anesthsitized world took a very different turn at that moment.

Within a few short hours I was in the hospital not feeling particularly bad or unusual (I had built up a tolerance for high blood sugars, high blood pressure and low kidney function; and wondering what in the heck had happened since that morning. Specialists of every kind had been in to see me. Including a nephrologist. OK what is a nephrologist again? I honestly did not know. Talking to me about kidney function and how the blood pressure had damaged my kidneys. It didn't occur to me then since I was so uneducated that the real killer was the diabetes. I let them talk. Dialysis . Ok then what? We do this "dialysis thing" then what's next? How long does it take to do this? I am ashamed to say I did not get it at all.

I had not been warned or informed by any doctor , EVER! of the possibility of the diabetes causing me to lose my kidneys, my vision or to make my feet numb.

I worked for about 3 months after being released with hypertension drugs and appointments made with vascular surgeons for the gortex graft implant to be placed in my arm for hemodialysis. I began laser treatments. I began trying to check my blood sugars regularly again for the first time in ten years. I began to notice what I ate. You would think I was a newly diagnosed diabetic instead of one finally dealing with the fact. I even convinced myself to give more than two shots a day of insulin. A lifetime of refusal and denial was trying to be made up for because I had finally gotten caught.

I was virtually alone with my mistakes. I was married, legally, but he was not around much except to abuse both me and my checkbook. My family was 1200 miles away in Texas and I had set myself up to be the person who could do anything. Even at the cost of killing herself.

So, I did my best to handle it all by myself. I went through two surgeries for the hemograft. I endured all the basic lasers I could and drove myself. I worked 4 days a week, 14 hours a day on my feet and under the influence of huge doses of blood pressure meds. I did it all for 6 months into the dialysis.

Finally at 4 months into the dialysis my nephrologist began talking to me about a transplant. Going to UCSF for the initial workup was closest; I was in Reno, NV. I went. Alone. That was the first time, from the tx surgeon there, I ever heard about a pancreas transplant. The simple question, "Why aren't you getting a pancreas too?" and I was hooked. No big research deal. No discussion. It was extremely clear-cut in my mind. *The problem is the diabetes. Get rid of the problem with the pancreas/kidney transplant. Great. Next issue.*

I spoke with a very kind and patient surgeon who told me basic risks and procedures. Wrote them all down on yellow paper that I could still read at that point. In my mind, it was just information for my family to read about what I would be doing; not for me to peruse and make a decision. I made it that day, that hour.

After I got back to Reno, the real ride began. My nephrologist gave me 3 hospitals to choose from for the dual. Salt Lake, UCSF or Galveston, By this time the husband had decided that I was indeed a liability being that I was actually ill and therefore not useful so a divorce was decided upon. I never did get the chance to thank him. -)

I chose Galveston because it was the only hospital in Texas doing the duals and that was still closer to my family in North Texas. So, back I went to be with my family. They became my primary caregivers. The last 6 months of my life had been difficult - even more so than my life previous to ESRD - and reality, the stress of so many things changing in my life, took it's toll. I did not dialyze well, I had to stop driving in March of 1990 due to the ever escalating damage to my vision and the real danger to myself and others with blood sugars totally out of control. Not working or being in the "perceived" control of my life for the first time since i was 16 and living again with family really progressed the diabetes, the ESRD...everything.

I had begun some pre transplant testing in Reno, done some at my initial evaluation at Galveston and was continuing to do the tests required in Dallas. Nine months worth of testing, lining up all the insurance with special letters and provisions from physicians and a final meeting with tx team got me listed in July of 1990. I got my first and only call 3 months later to come to Galveston for the transplant.

During that waiting time I do not remember being anxious about the surgery. I do not remember being worried that it would not happen before I got too ill. I lived my life as it was at that moment. Literally a new life but then I had always been dealing with something. This was just another thing . Another blip. Another rough spot on the track. I took care of my nephew, 3, as best I could while my mother and sister tried to take care of me. We all just did it. I know now it was far worse on them than it was on me. They could see how sick I was and were worried about the surgery. Remember I had all those yellow papers and more for them to read! I did not concern myself with any of the risks. I did not talk to social workers. I did not talk to patients No on line support.

Of course, not a whole lot of that was available then. Pretty new ideas and technology still and definitely considered "experimental". Anti-establishment. That figured into exactly how I had lived my life up to that point. Winging it.

What I really thought was this: Anything, even death, is better than going on the way I had been going. I had absolutely nothing to lose. No children to mourn me or me them. Well, the nephew yes, I love him dearly. But no life I had been living was better than the chance I had for a better life with the risk of this surgery.

My life began again when i was diagnosed with ESRD. I truly think that my higher power said, "Alright! That is enough! I have been to the mat for you countless times and you still taunt me and the odds, so I have no other way to get your attention so...wham! Here's a real life test for you girlie! Now! Let's see what you are really made of; if you can bear this test. I love you but I have to slow you down or you will crash and burn for good "

I believe it to this day. I made it. I came out on the other side. Not without some battle scars to be sure, but I damn well did it. I had help. Some I balked at, considerably, but will forever be grateful for; selective and alternating caregiving and smothering. That was worked through.

I preach for patient's to educate themselves out of the experience of not being educated myself -- by anyone, not by doctors nor by myself. At the time, that may have been a blessing. I was using all my energy to get through those awful neurostatic hypertension and hypoglycemic episodes. Those even became the norm for just getting through the day and night and getting to the end result: The freedom of the kidney/pancreas transplant.

I was lucky. That goes without saying. My relatively young age helped the odds for good candidacy for transplant, but the detriment of my disease evened it up. I never had a serious rejection. I battled the blood pressure post-transplant still but it was in the extreme other direction now; too low. Eventually a level was reached with the meds and I maintain control today. The neuropathy in my feet and hands went away and the nerves rejuvenated themselves. My kidney function was restored and is still working well as is evidenced by the 1.2 creatinine. I haven't had an insulin injection since the day of the tx. My blood sugars run in the 80's. I got back some needed body weight, muscle mass in legs, energy and the most important...a seriously new attitude about life in general.

My vision unfortunately did not improve, it worsened with the forward progression of the disease, but as it went gradually so did the immense feeling of loss for that sense. Ongoing treatments and surgeries in the last ten years have left me with 20/200 in the left eye and none in the right. a small tradeoff in my justification. As with everything else, we/I learn to adjust or get left behind. I am told I see more than some with 20/20. -)

The point of all this? That there is always an alternative . Good or bad is in the judgment. Trying to figure why some get nailed with some of the effect of the disease and some do not may be interesting but it is a waste of time that could be spent focusing on What's Next? It makes no difference that I was a total non compliant and others were "perfect". The bottom line is we are all at this point NOW. The roller coaster rides may have been higher or lower, younger or older, faster or slower in some cases! but they all end up in the same park. Dealing with life. that's it.

Return to the home page.