Pkd stage4-5 waiting on transplant introducing myself

[Beachgirl32]

Hello all I have polycystic kidney kisses I keep going back and forth from stage four to five . I am not on dialysis yet and I was hoping to have a kidney transplant before that. Pkd run in my family I lost my mom to it many uncles and an aunt. My brother has it and he has had a kidney transplant since 2012 he been doing well.

I have face some health challenges from this disease . I had two brain surgeries cause pkd paients can get brain aneurysm I was luck first brain surgery I did well clipped the aneurysm. Three month later one of the little aneurysm burst rush to hospital didn’t to as well but I learn to walk and talk again . Had seizures from the second surgery. I still have done cognitive problems but that was 22 years ago and I’m thankful for each day.

My best bet would be to find a living donor but I found out I have very high antibodies so it going to be hard for me to match I was told. My family not able to donate because of age or health problems and a lot have pkd. My transplant center has an age limit and that is 71 and I’m 65 so I really hope to be able to get a transplant before then .

Any advice is welcoming right now my gfr is 11 percent . Any advice or tips I should be doing to keep my function upon sometimes I get to 14 percent . I do have a mircosite site which is suppose to help me ask for a donor . Any advice of how I can get my story out I have friends and family putting it on Facebook and Instagram.

Thank you for taking time to read this if I have lots of grammar issue I’m sorry but as I said I do have done cognitive problems so I hope my post make sense .

[Cap21_NKF Partner]

Thank you for your story. Drink lots of water throughout the day, avoid caffeine and try to keep your blood pressure controlled as much as possible.

[Beachgirl32 in reply to Cap21_NKF]

Thank you for replying 👍

[larrymontague826]

I can't understand why the age limit is so low. I received my transplant when I was 76yrs. and 11 months old. I was also on dialysis before my GFR got to 10. I think it was 15. I would check other hospitals in the area.

[Beachgirl32]

Thanks for replying yeah that just the age limit here I have read other places that are higher I didn’t even know there was an age limit but yes for me here 71 and here donor can’t be older than 65 doesn’t seem fair

[Hidden]

Howdy...

A. Sorry to hear about your PKD. It's a slow moving disease yet unpredictable in nature. I'm one of 11 in my family who have PKD. One uncle was transplanted at 60, my dad at 67, and another uncle at 68. I say the disease in unpredictable since I followed none of my families paths and was transplanted at age 50 in Sept of 2020. This is ten to fifteen years earlier than I had expected or hoped. BTW, three of us had living donors while my father had a deceased donor kidney.

Something to consider: Whether it's dialysis, transplant or both, they are both live saving medical, technologies. While dialysis can be hard on the body, I felt significantly better only two weeks after starting peritoneal dialysis. Albeit, you do have a rather permanent tube coming out your belly

B. For me, I started feeling poorly at around a GFR of around 10-11. Actually, I felt like crap! In the summer of 2020, a few months prior to transplant, my BUN shot up into the 90s. My neph. told me that BUN in one of the major markers for "how you're going to feel." With the combination of high BUN and low hemoglobin I went on PD — surgery for cath. in July and training in August. I started nightly PD in late August for five weeks before a 8.5 hour robotic transplant. Since when of my cyst-filled kidneys was hemorrhaging they also decided to do a double nephrectomy. Thus, the top robotic surgeon in the world, Pier Cristoforo Giulianotti removed my diseased kidneys and Enrico Benedetti removed my PD cath. and performed the actually transplant. This was all done robotically.

Something to consider: Don't wait until you feel poorly to start dialysis. Based on my experience, it's not worth it.

C. It's good that you're doing your own site and looking for a potential donor. My uncle made a plea on Facebook and a long lost friend turned out to be my uncle's living donor. Cool! I attempted a Facebook plea as well. I had two serious offers — one who had was turned down immediately to pre-diabetes/diabetes. Another person, who contacted me the very day my wife was excepted as a living donor by our transplant clinic at the University of Illinois Hospitals.

Something to consider: Plan one particular day you're going to HIT social media (e.g Facebook, Instagram, and Twitter) with your story and need for a new kidney. You have family who have PKD as well. Have them help share your story and you families' story/history of PKD. On Facebook, for example, one's able to "share" another's post. This way you're reaching potentially thousands of people rather that a few hundred. Make sure people know the dynamics of living kidney donation. Based on my experience, I don't think most people are aware you are able to live on a single kidney. Provide information that is simple to understand, yet honest.

D. I only have my wife's kidney in spirit as we were part of a paired kidney exchange with a mother/daughter. I believe the paired exchanges are the most wonderful of gifts as you are receiving life as well as saving another. I was surprisingly approved by BCBS and my clinic to directly receive my wife's kidney even though she wasn't a correct blood/tissue match. It was surprising since very few people are approved for this expensive drug regimen. Back in 2020, you would have nine infusions of a particular drug that would allow me to receive my wife's kidney. The drug was $50K a shot. Doing the math that comes out to $450K for the infusions alone + a $450K transplant. Surprisingly it was all approved. My wife and I chose the pair-kidney-exchange route and we're all the better for it. We have lifelong friends!

Something to consider: Expect the unexpected during dialysis and transplant process. Based on our experience, there are a significant number of "ups-and-down" during the process. One day transplant was likely follow by another upsetting day of uncertainty. Despite your age or any other things that may worry you, be an advocate for yourself. Don't give up. For example, all four of us (two donors, two recipients) had high BMIs. Yet, we all found UIC Transplant which uses robotics to minimize complications in transplanting obese patients. Surprisingly, my main incision in only 4 inches long. My father's incision, from a traditional, open surgery, was 12 inches long.

Also, expect your future transplant may be a) a living donor you would never have expected or b) a diseased donor that happens within months on getting on the waitlist For example, my dad was on waitlist in Chicagoland — a five to six year wait. He went to the University of Wisconsin and was transplanted within six months.

Beachgirl I'll send positive vibes your way 😀

[Beachgirl32]

Wintersolidrer thank you so much for your post . My brother had his transplant at 57 year old and he did the pd before as my mom did pd also my brother had to do pd manually he couldn’t use machine but my mom did the machine . I have one cousin who did hemo in her home everyone else I know did pd and that the way I will go . Right now I still have plenty of energy I’m walking a mile plus a day trying to keep that up but I have a feeling this year my nephrologist will want to put the port in he did say he wanted to go hat before I went on dialysis . I didn’t know about looking at the Bun is a factor so thank for your output on that I know my is high but I will look at that closer . I am only on the one waitlist I need to find more how that works I know you have to be evaluated at each place but once you are evaluated do you have to go back to that place to for yearly check up I’m still learning and reaching out and getting response like yours is quite helpful.

[Gardner-NY]

Hello, my spouse of over 40 yrs has PKD from his mom and his older brother did too. The older brother got his live kidney over 20 yrs ago from his wife and it worked well for 17 yrs then another health issue made the kidney not f unction and he had to go on dialysis for the first time. My spouse never was on dialysis and went into transplant surgery with a match donor found 18 months after being on the wait list for a matched donor. This was 3 yrs ago and its been a difficult journey the first 14 mos with a rejection, blood chemistry major problems, CMV virus and now chronic fatigue. I sincerely wish you the best to keep advocating for yourself. If you are a member of a church or any clubs, advertise your need to them on finding a living organ donor. I'll add you to my prayer list.

[Beachgirl32]

Gardner thanks for reply yep I have it on my church Facebook and thanks for prayers

[DexterLab]

I have PKD and got my transplant Feb 2019. I had been doing ok with the PKD, just blood pressure meds and swollen ankles, until July 2018. Then the GFR started falling at a scary rate and my nephrologist said off to the transplant center. Whirlwind of stuff through them, and I was approved for transplant in October. The scariest part was having to ask for a living donor. It is not like borrowing a cup of sugar. But the transplant center has a convincing list of reasons to prefer a living donor, and my median wait for deceased donor kidney was projected at 3 years. So, I started by asking at my church, because the people who go there are the kind that would do that for another person. The pastor ended up being my donor and a match. So I got the transplant before I needed dialysis, which was going to be soon. It was a crazy 7 months from being told I was going into kidney failure to being transplanted. My grandmother, mother and brother all have PKD, but I am the only that progressed to kidney failure. I was 64 at transplant time and have done well since. I have become sort of a church project since I have the pastor's kidney and they have been a lot of help. Good luck to you and I hope it goes as well for you as it did for me.

[Beachgirl32]

Dexterlab thanks so much for replying that is awesome that your pastor gave you a kidney . You are so right about how hard it is asking for a living donor it the hardest thing to do to ask people to give you such a gift . I know I can’t donate a kidney but I make sure I check the box for organ donor I lost a friend last year and I was surprised how many gifts she gave people benign an organ donor I don’t know some of the things cause I was thinking like I wouldn’t have anything they could use but so many thing I was surprised with intestines. I just always felt if I am asking someone to give me an organ if there anything I can do for a person I will .