March 10, 2012
I was able to successfully complete the MRA yesterday! With this MRA, the anticipation was much worse than the test! I tried to mentally prepare, brought along a washcloth to cover my eyes and arranged to have Valium prior to the test. When it was time for the test, we walked back to the tube, arranged myself and had a blanket. As she was putting me in, she said the test was only going to be 10 minutes long! Hallelujah! I didn't even have time to get nervous and before I knew it, the test was over. No results yet, but I expect that the very tiny brain aneurysm I have will continue to stay the same size.
One more test before I can get on Charlotte's transplant list - CAT scan on my belly to ensure there is enough room to add an additional kidney. My kidneys are large because of the PKD. If there is not enough room, the nephrologist at CMC told me one of my kidneys will be removed, I will be put on dialysis for several months to heal before I can be considered again for the transplant. I'm not really liking the distended belly of PKD, but I really, really don't want to go on dialysis so I think I can deal with the distended belly. The CAT scan is scheduled for April 23rd. I was truly hoping to get all of the kidney issues in my life over with before my 50th birthday (April 12th), but I guess my plans don't coincide with God's plans...
I'm feeling great today - I got about13 hours of sleep last night and don't have to work this weekend :) It's a sunny day and it feels great to be alive! Shari
March 6, 2012
We got my blood tests back from Dr. K - creatinine is about the same - around 20% function. Phosphorus high, sodium and
potassium still in normal range. This Friday I have an MRA (MRI with IV dye) to check on the very small brain aneurysm I have.
I'm already pretty stressed about this test, just because I have to go into that small space and try to not hyperventilate. Dr. K has
already approved the use of drugs, so I'm good with that. (This will be my 3rd MRI/A...)
We've had limited response from our pleas for living donors. Not too surprising since it's asking so much, but still frustrating. The
MRA and the CAT scan being done in April are at the request of the transplant people from Carolina's Medical in Charlotte. We are still
working on getting on their transplant list - the last part of their requests is April 23rd when we visit them again for an appt. with a
transplant surgeon and the CAT scan to make sure my abdomen has enough room in it for another kidney. After that, we should hear
within a month or so about whether they will accept me as a transplant patient. In July, I celebrate 3 years on the transplant list.
Dr. K started me on some new cholesterol meds - so far, so good. My BP meds remain the same - pretty static with my bp for the last
few years. Some positive things that happened the last few days - today, at work, I spoke with a man who saw one of my interviews on TV.
We spoke organ donation and he volunteered the fact that on his next trip to DMV, he will be adding "the heart" to his driver's license. I told
him it was a great thing to do and he would be saving many lives :) Last night, also at work, I met a woman who flew up north a few months ago
to become a living donor to a friends friend. Another hero in the world and I was honored to be able to discuss it with her. It turns out she lives
in the same neighborhood as my parents - what a small world. I'm feeling good today about my chances of a cadaver kidney at CMC down the line.
I also heard today from one more person that they called Duke Transplant Svcs. and never received a call back. Unbelievable that this continues
to happen. It's very frustrating when you find someone that actually wants to donate a kidney, they make the important phone call and can't
even speak with a coordinator nor get a phone call back. The bureaucracy is amazing!!! Not many good thoughts for them today.
More after the test on Friday.
Feb. 26, 2012
It's a beautiful Sunday morning with the bright sunshine and chilly wind. This past week was kind of a whirlwind for us. We visited the nephrologist, Dr. K, on Wednesday. He said everything looked great - we are waiting for the blood test results to see where my creatinine level is and any other abnormalities. Friday we got a call from a good family friend, Martha, who was able to get us an interview with Justin Quesinberry on NBC 17 out of Raleigh. The interview was aired Friday night - we were really pleased with it and felt like we had conveyed the information we wanted. We continue to spread the word about the need for organ donations and try to imagine what we did with our "free" time before our search began :) The search continues to find the perfect "match".
Feb. 20, 2012
Well, I've been asked to start a blog about my experiences with PKD and needing a kidney transplant. I was diagnosed with PKD at 22 years old after a high fever and excruciating pain in my abdomen ended me up in the hospital. It was determined by the end of the week, that one of my cysts became infected. Over the years, I've regularly seen a nephrologist twice a year and managed my blood pressure with meds. I've had the occasional urinary tract infection (guesstimate of approx. 15-20 over the years), but no other symptoms or problems with the disease.
Now I am 49 years old and my kidney function has declined to 20%. I have a huge aversion to going on dialysis - I watched my dad struggle with dialysis in 2008-2009. It was the most miserable part of his life and he seriously was close to stopping. My mom made him promise to stay on dialysis until their 50th wedding anniversary - and then he received a cadaver kidney transplant 2 months later in Feb 2009. His recovery from a kidney transplant was difficult - he was almost 72 years old when transplanted. Now, 3 years later, he is the picture of health - golfing and walking everyday. Unfortunately, he developed a CMV (cytomegalovirus It is a type of herpes virus) infection in one of his eyes and has lost vision in that eye. He is a voracious reader so that was a tough loss for him.
My brother, David, also has PKD and is currently on peritoneal dialysis.
Together with my family, we started a facebook page called "Sharing a Life" to help us search for a living kidney donor. The Facebook page was opened up in May 2011 and we have had several people call Duke Transplant Services, but as of today, there have been no people testing for a match. I am currently on the cadaver transplant list at Duke where the expected wait time is 5-7+ years for an O kidney. In July, is my 3 year anniversary on the transplant list. I am also working with Carolina Medical Center(CMC) in Charlotte to get on their transplant list (diff't region). The wait time at CMC is around 3 - 3 1/2 years and I can transfer my transplant list time there once I get on their list. I still need an MRA (to check on my tiny aneurysm), CAT scan to make sure there in enough room for another kidney and meet with the surgeon.
More updates in a few days,