Hi, my name is Valerie, or as some may know me as Mrs. Claw. I’m 46 years old and am running out of kidney function quickly. I have Polycystic Kidney Disease and need a human donor of a kidney transplant. I am listed at Mayo Clinic in Scottsdale, AZ and are on the deceased donors list as of 12/13/22. This list unfortunately takes 3-5 years to get a transplant for my blood type. I chose Mayo as they are world renowned and have a non-steroidal transplant procedure- after 7 days of transplantation the steroids are no longer required. My dad and 3 uncles all died of complications relating to sepsis or heart issues, all had PKD but the transplanted kidney did not fail them, the steroids did.
My dad was on the transplant list over 2.5 years when he found out my mom could give him a living donor kidney transplant. My mom is O positive blood and can donate to anyone. My dad was a rare B negative which was going to be a much longer wait on dialysis for a transplant. The living donors average kidney lasts 10 years and the average kidney from a deceased donor is 4-9 years. My dad had my mom’s kidney for 19 years and was still working, except for the broken toe that could not heal due to the steroids turning his leg veins into concrete. I know the living donor option for me is the best option as I can plan ahead and possibly avoid dialysis. I now have 20% of my kidney function left and my creatinine is 2.81. If I get my function to 10%, I will most likely be on dialysis and disability, which means losing 40% of my pay.
As most of you may know, my husband was diagnosed with kidney cancer in 2020 and was operated on and they removed some of his kidney. When I found out about my PKD diagnosis, he promised his kidney to me as he is willing to save my life with one of his kidneys. He was devastated when he found out about the cancer. He even said, I wished it had been any other type of cancer, just not kidney. He never breaks a promise, but in this case, he held out hope to be able to give me a kidney as the doctor said he did not take much, if any of his existing kidney. He filled out the paperwork once I was admitted to the list and Mayo clinic called him and told him even though it has been 2 years since the removal of the cancer, since it was cancer of the kidney, they cannot approve him to be a donor. He was devastated and vowed to find me a donor.
Some people may not realize that kidney cancer has a 5 year survival rate of 57%, but kidney dialysis patients have a 5 years survival rate of 40%. It is a lower survival rate for kidney dialysis patients than cancer of the kidneys. The dialysis, if I have to go on it, will cost us 40% of my salary as long term disability will take over my pay, but it is capped at 60%. That will severely alter our ability to buy a house together and get his mom and brother and us under one roof.
My hope is to have a living kidney donor in the next 6 months so I can avoid going on dialysis altogether. Being able to continue working is key to my psyche and the ability to fight this disease. I have researched different types of donations and even if you are not an O positive blood type, which is my type, you can donate your kidney and Mayo will find a match for me. It is called paired donation, so even though you may not qualify to give me a kidney, they will find a pair that matches your kidney nationwide and I will get someone else’s paired donation. This paired donation option is given when you sign up at Mayo’s link below. This option will give me a better way of getting a living donor fast.
I have lived in Arizona for almost 5 years and I can tell you since moving here my GFR, which is a filtration rate of my kidneys from Oct 18 was at 33% and now December 2022 it is at 20%. I can tell a difference. A couple months ago I was aching so bad in my joints as Covid has done a number on me as well. Getting it in December 2021 and March 2022 really damaged my kidneys bad and caused some serious wheezing in my lungs. In April of this year, still recovering from Covid-Omicron variant in March, I thought I was going to die. I seriously was scared when I woke up one morning and felt so bad I did not want to get out of bed.
My body ached all over and I could barely breathe, some because my kidneys were pressing on my lungs and other because of omicron. I saw my dad go through this disease before and during dialysis, but nothing prepared me for what I felt firsthand. I seriously went through a list of what I would do for my funeral and researched burial ground in Scottsdale. I started telling my husband about where I wanted to be buried and gave him some instructions on my preparation.
I have never felt so scared in my life. I went through a major surgery with my parents when I was 18 years old. I am an only child and my dad’s transplant happened two months before my high school graduation. Before the procedure, I had to be a part of estate planning and a trust set up in case both of them died. That was half as scary as waking up one morning and feeling so bad you thought in the next couple of months you might die. I am not even on dialysis yet and that I know of, my dad never had that feeling until he got an infection while on dialysis.
My energy level has waned so much that now I am happy just to go out to get to a movie. If it is dinner, the movie does not happen on the same night. I cannot do both and walk that much. I can no longer drink any alcohol as that hurts my kidney levels so bad even one drink can damage them. I feel like my system is wearing down daily and I find it hard to get out of bed every morning. I have aches that I believe have to do with long covid as well that has harmed my ability to function normally. I work from home and have so since the pandemic started in March 2020. I would not be able to work full time if I had to drive the 7 miles to work and come back every day. My work has allowed me to keep this up since it is an ADA accommodation every 90 days my nephrologist has to fill out. I would have already had to go on dialysis if I had not had the work from home option full time. I get tired just going to the grocery store now.
I saw how hard it was for my husband when he was diagnosed with kidney cancer. I saw how much he slept and now I am feeling the same way. I have had so many tests this year that I am pretty sure I don’t have ovarian cancer, but that is a test we are going to repeat in February to make sure, so I am blaming kidney failure on my lack of energy. Hopefully that is the case.
My kidneys are measured yearly and April 2021 my length of kidney was 8.89 inches by 4.52 inches wide. This year they are slightly smaller at 7.9 inches tall and 4 inches wide. For reference, most peoples ‘kidneys are the size of your fist. My fist is about 3 inch x 3 inches. The larger kidneys are not taken out when they transplant as they are still filtering some even after transplantation. The size does shrink once the transplant happens, but it is such a major surgery to remove them, they don’t. As a woman, that larger amount of kidneys with my height of 5’ 5” individual makes you look pregnant.
There is nothing I can do about that, they continue to grow and will until I get a transplant. This also has complications where my sides underneath my ribcage have been really sore as my kidneys go up underneath my ribcage and causes the muscles to be really tight. I had a hysterectomy in Dec 2019 and my OBGYN said she has never seen kidneys so large. Unfortunately she did not request the ovary I was born with to be removed, so that is still on watch for ovarian cancer. Later this year, that might need to be removed, if the doctor sees growth in the cysts on my ovary.
My blood test that shows I could have ovarian cancer 10-50% chance was not covered by insurance. That test is now being appealed, but costs $250.00. It is so upsetting to have an insurance company tell Mayo clinic, who is known for treating cancers, that they should not have ordered a test for ovarian cancer screening. I hope it is overturned, but I have my doubts. It is a new year and new deductibles total $2500 for me.
This diary is meant to let you know who I am and what Mrs. Claw has to deal with. This is also a request, if not for you to donate a kidney, but to forward this on social media, friends, family and anyone you know about giving a kidney to save a life. The list is currently 3-5 years for any cadaver donation, which is longer than pre-Covid mainly due to Covid infections contributing to failing kidneys. The 5 year average life expectancy on kidney dialysis is 40%, lower than kidney cancer. I am asking for a chance to survive and not have to go on dialysis with a transplant.
Please consider filling out the kidney donation questionnaire and see if you are a match. and if you are not a match, the paired donation option also helps me out greatly to get a donation much faster. All kidney transplant testing is covered by my insurance, so there is no out of pocket cost for you. The transplant is scheduled in advance, so you can plan ahead for your time off work.
If you want to help please go to https://Mayoclinic.org/livingdonor and give them my name, Valerie Robbins and click paired donation!
Thanks So Much,