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To an individual experiencing frustration, the emotion is usually attributed to external factors that are beyond one’s control. And so it was with me. I seemed to be fixed in the medical possess of the Kidney Transplant listing, and no matter how hard I tried, I seem I could not get anywhere I the manor I planned for myself. In reality, things are as they are; so no amount of ranting and wishing is going to change how the medical field is going to run things. This caused me to become very despondent in the medical process.
Anyway, the first frustration in this progress of becoming a Transplant Candidate was my Nephrologist’s reluctance to recommend me for a Transplant until my kidney function hit 18%. Nationally, for some time, they have allowed you to start the process at 22% and actually list you at 20% function. That meant a two year delay for me just too to be recommended to the list.
The second disappointment was when I was told that I could not have peritoneal dialysis when it became needful, like I had planned. This process uses the patient’s own intestinal lining as a membrane across which contaminated substances are excreted, the process that usually takes place in your kidneys. The catheter or the permanent tube in the abdomen causes too much scar tissue for the double Nephrectomys I will need. I really wanted to do daily, at home dialysis which is better for the body, and wanted the greater flexibility and freedom in the treatment schedule.
Which brings me to the third disappointment, that of two life-threatening operations: One to take out both kidneys and one to put one back in four to six weeks later. The trauma two major operations will be needed because there is no room for a new kidney, and the shifting of other organs back to where they belong, could tear open the grafts of the new kidney. When I learned of this, and that it would put me on the list on as an inactive candidate or status 7 of the United Network for Organ Sharing (UNOS), it became my forth frustration. If you are not status one, or active, you are not offered a kidney, only allowed to gain points to be on the list.
At this point I became very depressed, and overwhelmed. In the ten weeks proceeding and following this point, I completed 35 tests, consultations, appointments, and the imagining required for listing. I averaged 3 to 4 appointments a week, with little time to rest between. Most were painful and many took a week or more to heal. I have yet to receive the results for most of these tests.
Out of all the pre-listing tests the female ones became the hardest to obtain. I took 30 days to get into the Gynecologist, another 30 days to see an urogynecologist for a problem that required a consultation, which became my fifth frustration. He never did write the letter he promised to the transplant team, I had to send a copy of my records instead. And boy did these evaluations hurt; one because the nurse was callous to my instructions to use a smaller catheter and was very brash in her administrations.
What’s more, two differing labs took 33 vials of blood in the sixth week of testing for 53 lab tests. Twice the Murray Lab made mistakes in my tissue typing labs, requiring extra trips to Salt Lake: this was my sixth disillusionment, so many lab processing errors. It seemed that things were not going well; two steps forward and one back became my mantra. My low mood and self esteem started to affect my everyday activities.
It was just after blood tests I was told that my Panel Reactive Antibody Test (PRA) was/is 87%. I am primed to react immunologically against a large proportion of the population. Only one thing in my past could explain it, a seldom seen reason of a sickly childhood. While my PRA is very high, it is not high enough to gain preferential treatment at my transplant center, am just a few points under. In other transplant centers preferential treatment starts at 80% PRA, but my insurance won’t cover any other place. This further limits my chances for a match, in spite of my transplant coordinator telling me “all hope is not lost.” Why would she even say that, unless there was reason to worry?
My eighth frustration was lost paper work and mandatory educations classes at I was never told about. In the conversation about my PRA, I was told that I had to attend a mandatory transplant education class required for those on Medicare and Medicaid, “this Tuesday,” in spite of the fact I am not using these programs at this time. I had little say in the matter, and was lucky that I had no other appointments. The center said they would send me the required forms and handouts in the mail. I did not receive them in time, and attended without them. And when they did arrive, they were missing a vital booklet and form. This held up my listing until it was acquired, signed and returned a couple weeks later.
My ninth Frustration was over my own body. A Fistula is the preferred Hemodialysis access, and is made by connecting an artery and a nearby vein in surgery, for a larger volume of blood. Of the four primary sites in the arms, only one had a chance of success for me, and it failed– a lot of pain for no progress. My veins are just too narrow, probably due to being a sickly, undernourished child.
Finally, I made the list; but my transplant center is not on the National Kidney Registry, further limiting my chances for a kidney match. The National Kidney Registry uses the power of an algorithm and large pools of donor/recipient pairs to find better matches through “paired exchange.” Their “Chip” program would be a God send for me, because I would receive preferential treatment as a sensitized adult, and the fact I have no confirmed donor would not hinder placement. But my insurance will not cover the University of Utah Transplant Program, whom is a member. I could even I could multiple list if my insurance would allow. If I could get on Medicaid I could, but we make $68 a month to much.
Hope is a fleeting thing, hope is the conviction that no matter the circumstances that our lives are going to come out for the good. I’m to the point I have little hope that I will have a better, healthier life. The hits just keep coming. All I see is pain and no progress, for things beyond my control. If I had better insurance, more or less income, more relative support or something!