PKD & KTx

I've known for 17 yrs. I have incurable PKD. I was told I'd die of an MI or stroke first. Now, I'm 68 approaching ESRD and learning (privately) that the longer I'm on PD (esp. NOT HD), the shorter life of any cadaver KTx will be! With B+ blood, I am looking at age 72 min. before I'm likely to receive any KTx. I'm not looking to jump ahead in line; I'm just looking realistically at what quality of life might be, given a society likely to bail on Medicare (2026} and/or Social Security, my two primary sources of support. Insights welcome... BTW: I'm being pressured to start PD but lacking any serious symptoms of uremia. My worst symptoms are related to carrying #40-#50 of excess kidney weight whenever I'm prone!

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Email me when people reply –

Replies

  • I've never heard that the longer you are on PD, the shorter the life of a transplant. It makes no sense. Can you refer me to a study? I've know lots of people who spent many years on PD and had very successful transplants.

     

    I know that in the short term, hemo will destroy what's left of your kidney function much more quickly than PD. But that's the only real difference I know of. I also know that you can eat much better on PD and thereby be a lot healthier.

  • Greg, I too have dealt with PKD for many years,  and many of my family members as well.  Four members of my family presently have transplants,  one for as long as twenty five years and all doing well.  So there is hope.  I dont know if you have ever checked out any resources from the PKD foundation, but they do have some excellent info available.  They are having a very informative event called PKD CON happening this weekend.  It's a wonderful source of knowledge, and a super way to connect with other PKD people.  You can sign up on the PKD.COM website, but today is the last day to sign up, if you're interested.  It's all free again this year, and it's a fantastic value.  I highly recommend it, even if it's just to connect to others who know what you're going through. Best of luck in your future.

  • Pkd runs in my family I have had a transplant for 14 years and have done well.I have 2 cousins that have transplants and are doing well.over the last 30 years 6 other cousins have been on dialysis one currently.drs usually do want patients to start dialysis before they get in a hole that is hard to get out of. My advice is to do what your doctors say and try to do everything you can to maintain good health leading up to your transplant.

    • Hi Mike,

      Thx for your input. Sounds like you have family that are supportive of one another; that makes a difference.

      Today, a friend offered me a live donor kidney! I'm flabbergasted at his offer! There are bridges to cross but this could be a Godsend-lease on life!

      Neither of us are/wish to be covaxed. I'm C19 recovered with robust antibodies. He's afraid of MDs/hospitals which makes his offer 400% greater!

      I'll post as plans become clearer...

  • Hi Greg,

    You have asked questions that ultimately, only you can answer. Moving forward certainly means making changes to your life, as it is now, and will test your resolve to survive.

    I have many friends here that have done well on dialysis or a Tx, it's no cake-walk, either way. I can share my experience of years on clinic-based hemodialysis, receiving two cadaveric Txs, and life with them.

    I can attest that at any age, there is nothing like being alive, period! It is worth the effort, pain, and cost. I have lived two decades longer than my ailment (CKD from IgA) had intended to end. My first Tx lasted 13 years and my second is still going strong at 9+ years. None of us knows when our end will come or how, whether sick or not. Predictions on the longevity of a Tx are, for the most part, flat wrong!

    Your fears of Medicare or Social Security taking a hike is unfounded and not a factor in how to proceed. Politicians have an aversion to stepping on that "third rail."

    So, to answer your question, you must ask yourself, are you done with this life? No one is going to force you to accept anything! A physician once said to me, "Dying from CKD is the easiest and best way to go. You just sleep more and more every day until you just don't wake up!" (though with PKD, this will involve more discomfort.) So Greg, are you done?

     

     

    • "Done?" Only God can answer that ? The ride has been wild but He's provided the life preservers in the past. I'll have to wait/see if He throws me another...

      Either way: Life ahead looks grand if I can learn to swim with His currents...

      • I offer prayers that you do and return to better health soon!

This reply was deleted.

Facebook & instagram

TransplantBuddies & Friends Facebook Group

TransplantBuddies & Friends

Transplant Stories

Members Stories

Twitter

COTA

Lung Transplant Foundation

Cystic Fibrosis.com

        Organ Donation Surprising Facts

Latest Activity

More…

Planetary Biosciences for Cystic Fibrosis

Please Donate for CF Patients