In 2012 I was feeling under the weather and was shocked when the results from blood work revealed that I was on the threshold of kidney failure. I proceeded to work with a nephrologist who tried to help me maintain my kidney function.
In March 2014 I successfully joined the kidney transplant list, choosing Scripps Green hospital in Torrey Pines as my hospital.
In June 2015 my kidneys had officially failed and I began peritoneal dialysis. I have been doing that ever since.
Why did this happen?
Both my son and I have been diagnosed with Alport Syndrome.
The U.S. National Library of Medicine defines Alport Syndrome:
Alport syndrome is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities.
People with Alport syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine (hematuria), which indicates abnormal functioning of the kidneys. Many people with Alport syndrome also develop high levels of protein in their urine (proteinuria). The kidneys become less able to function as this condition progresses, resulting in end-stage renal disease (ESRD).
People with Alport syndrome frequently develop sensorineural hearing loss, which is caused by abnormalities of the inner ear, during late childhood or early adolescence. Affected individuals may also have misshapen lenses in the eyes (anterior lenticonus) and abnormal coloration of the light-sensitive tissue at the back of the eye (retina). These eye abnormalities seldom lead to vision loss.
Significant hearing loss, eye abnormalities, and progressive kidney disease are more common in males with Alport syndrome than in affected females.
My husband and I have determined that when my son's kidneys fail, my husband will either donate directly to my son (if they are a match) or they will enter into a paired kidney exchange.
On the other hand, I do not have a donor, although two people have already attempted to donate and were rejected for health reasons.
Christine, I wish I could help you. You are such a kind-hearted and thoughtful person. How does one know if they are a match?
ReplyDeleteAww, thanks Danny! They have to have certain biochemical "markers" in their blood/system to donate directly to me (so the kidney won't get rejected), but if the donor couldn't donate directly to me there is a process to donate to a third person through what is called a paired kidney exchange (I should post about that process now that I think about it--even more people could benefit).
DeleteTo initiate the process, which is entirely paid for by my insurance, call 858-554-4310 (Scripps Center for Organ and Cell Transplantation) and say you are interested in donating to Christine Manczuk:
1) the potential donor will be instructed to go to a lab for a blood draw,
2) an appointment will be made for x-ray (lungs) and ultrasound (abdominal),
3) depending on medical history the potential donor may need to do a stress test (takes half the day) and/or colonscopy,
4) the potential donor will be brought in for a consultation, then a further test for compatibility.
The donor can elect to be anonymous, and can back out any time. My transplant people would only contact me if the prospective donor passed the lab work and evaluations and is ready to go. Otherwise it is completely out of my hands. I believe the whole operation is paid for by my insurance, including the hospital stay after. I also remember them saying that they would accept people from around the country and around the world, as long as the donor was a match to me or the paired kidney exchange I may potentially be part of.