I was diagnosed with beginning kidney failure in 1994. My GP saw an unusual amount of protein in my urine in a routine urinalysis and sent me to a nephrologist. He did a biopsy and diagnosed me with FSG (focal glomerulitis sclerosis). At that point, I was at 35% kidney function. I was 32.
At that point, there was nothing they could do to stop it so they just tried to slow it down. In early 2003 I was sent to the UCSF kidney transplant department. I was at 15-20% function. I was told I would need a transplant and encouraged to ask any family members if they would be willing to donate. Luckily I have a wonderful and supportive family, many of whom got tested. In the end, my older brother was a match. However, I was in CA and he lives in TX. It took a few months to get things in order so the docs put a port in my right shoulder to start dialysis until he could get approval, time off work, etc. The port was put in in 11/03. I had dialysis for 3 months. My brother flew out to CA in 2/04 and I had the transplant.
Everything went very well. A couple of days later, my brother was released. He and his wife stayed at my parents home while he was recovering. As time went on, the lab results were not turning out as the doctors hoped but they couldn’t figure out what was wrong. They decided to do an ultrasound; that was the most pain I had experienced throughout the whole procedure. I just couldn’t get through it so the doctor decided to do an internal ultrasound. 5 days after the transplant, I was back in surgery. It turns out I had an embolism in the artery. 1/2 the kidney was already necrotic, so it had to be removed. I remember waking up during the procedure. There were doctors and nurses running around and raising their voices. I then heard someone say “she’s awake!!” They put me back under.
Next thing I know I’m waking up in recovery not knowing what’s going on. All I was told is that the kidney was taken out. My family gathered later that day in my room, including my brother and sister in law (my parents lived about 1 1/2 hours away). The Dr. came in and explained what happened. Of course, everyone was very upset and crying. I just remember him saying the chances of something like that happening is very rare. My brother blamed himself but the Dr. was very good about convincing him there was nothing anyone could do. The other thing I remember is my sister saying “we still have her.” I found out later the surgery to remove the kidney didn’t go well, which was why there was a lot of running around.
So after 10 days in the hospital back home I went and I was back on dialysis. I was put back on the transplant list and the waiting began. The team decided to take the lines out of my shoulder, give me a fistula and put me on blood thinners. I had it put in my upper left arm. I was in and of the hospital with that surgery due to clogging of the fistula and then excessive bleeding. I had to have it cleaned out and replaced several times.
On Saturday, 10/30, I was getting dialysis when my cell phone rang. Normally I didn’t have it with me or if I did I never answered it; that day I did. It was the transplant coordinator. All she said was “we have one.” My answer to her? I have to work Monday. ( I was a dental hygienist then and was working part-time; more on this later). She told me there wasn’t a choice but IF I had to think about it I had 20 minutes. I hung up and the techs could tell there was something wrong. They all came over and talked to me. I was getting upset so the head nurse asked everyone to leave. She stayed there with me and talked to me. She told me to call someone, anyone. So I called my sister. She asked me “look around you right now. Do you really want to go back?” Of course, the answer was no. I called the coordinator back and said: “let’s do it!” I was taken off the machine, got home, told my family and up to UCSF we went. I called my employer and told him what was going on. He said ok, but I could tell there was a disappointment in his voice. I had already taken 3 months off for the first surgery and he was reluctant when I had to take more time off. I ended up losing my job.
Anyway, we got to the hospital and got set up. A couple of hours later the Dr. came into my room, head down. Uh oh, “what’s going on?” He said, “the kidney is coming from St. Louis and it missed the flight!” I could picture someone standing on the tarmac, holding a beer cooler with my kidney in it just watching the plane take off! I just started laughing. He looked surprised but what could we do? With everything that’s happened already, it just seemed fitting. He said it would be on the first plane in the morning, they would check it out, make sure it’s ok and proceed with the surgery. So on Halloween 2004, I had my second transplant. It was successful.
I still have it 12 years later but not without complications. I’ve had several surgeries since then, including dissecting the ureter and reattaching it, more than once (it kept getting tangled); that was in 2005. In 2006 a pharmacy gave me the wrong dosage of coumadin and I OD’d on it. I was bleeding non stop eternally and internally and had severe bruising all over my body. The docs were doing everything they could to stop it. It was finally under control and on the last day in the hospital they gave me one more dosage of FPP. My release was delayed because I ended up with hives and a fever; seems I was allergic to what they gave me. I was told this was another “close call.” In 2011 I formed stones in the transplant. I had blood in my urine and after several tests, that’s what it was. I had several procedures to fix it so I was out of work all of 2011. Last July I ended up in the hospital again. This time I was diagnosed as a diabetic. Ironic since that had never been a problem. It appears under control now.
As a result of all the surgeries, I have severe nerve damage in both legs, mostly the left. I have excruciating pain, have had to use a cane on occasion and it’s difficult to stand or walk for any length of time.
In 2006 I had moved to the east of SF and got a job as a hygienist nearby. Another dentist took over that practice and it was while I was working for him that I had the stones. He too decided to replace me while I was out on my disability.
So with my dental hygiene career over I got a job in retail. I have worked 2 jobs, sometimes double shifts, up to 14 hours a day (which I know contributed to my leg pain) just to try and make up the income I’ve lost changing careers. It hasn’t worked. I lost my house and am giving up my car.
When I started as a hygienist back in 1989 it was suggested I open a disability insurance policy. I’m so glad I did. I’ve used it several times and it has saved me. I am now applying for permanent disability because of the problem with my leg. I have a dr. that’s in full support of that decision.
I gave notice to my jobs and my last day is this Saturday, 4/8. I have a 60 day waiting period on my policy so the next 2 months are going to be very stressful without a steady income. I don’t know how I’m going to get through, especially having to pay for my medications, but I’m trying to stay positive and keeping everything crossed that my application will be approved. If so, it will double my income and things won’t be so difficult anymore.
I have been told more than once by the UCSF doctors that my case from beginning to end is very unusual; one even said he could write a paper on me. It seems the problems I’ve had had “odds” to them. For instance, the embolism, 1 in 10,000 and so on.
Through all this, the kidney is still working great! All I was told was the donor was male, 20 and in good health. So I maybe 55 but it’s only 32! I think about him and his family all the time.