My head is struggling knowing my gifted kidney may not have 5 yrs !
Question: How to make to the most of time before it's back on Dialysis ?
Because of Covid 19, we High Risk/Vulnerable people have been self isolating, & now, what we all feared , spikes of this Pandemic are raising its head again !
So getting away is not possible until the Globe is considered 'safe'.... who know when ? The idea of Dialysis again is somewhere I really don't want to be !
This shock feels like Damocles Sword is hovering., please help.
Written by
daxielovinglady
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Did your nephrologist tell you that your new kidney is failing? How are your labs? What is your creatinine? Didn't you just receive your new kidney?
I also have FSGS, but my transplant is doing great 20+ years later. My creatinine continues to be stable at 0.8-1.0.
I was told that my transplant could get FSGS too. I was also told that my transplant could have a life of 10 - 15 years since it was from a deceased donor. On October 15th it will be 21 years since my transplant.
What is depressing ..? (1)..FSGS chomping its way through my GIFT, given a likely timescale ...best 5 yrs. ! (2) Covid-19 ... unable to make the most of probable time left , too frightened ! (3) the thought of Dreaded Dialysis, again !,!!!!! (4) at 71, no time to hang about ! (5 ) Night terrors / panic attacks...the list goes on ! Yes! , jumping out of the window has crossed my mind, but I'm desperate to start living again, my 'Miracle', I hoped ,would help move on from just existing, I need more than this to say I am alive !
You didn't tell me? Did a doctor tell you your transplant HAS FSGS or did he say that he thought you could have it in your transplant in 5 years?
And just because a doctor tells you that you could have it in your transplant in 5 years, doesn't mean you will. Be positive and think positive!
Take your meds, keep all of your lab and doctor appts., drink plenty of water daily, exercise (walking) at least a couple times a week and report any issue or problem to your transplant team no matter how minor it may seem.
My native kidneys with FSGS are hardly visible on an ultra-sound, but my transplant is going strong 20+ years later.
I have been aware that my FSGS was likely to move into a GIFT well before the OP', & before dialysis. After TX a Biopsy eventually found 'it' had moved in !
I can understand your concerns about the future and your kidney; especially during these unusual times.
WYOAnne is a wise woman, hear her words. Precaution!
Every person's health needs and conditions are different. Until the doctor spells out a timeline, or tells you, dialysis- don't go there!
In the meantime, concentrate on following your health action plan, see your doctor as scheduled, wear masks, avoid crowds. sanitize..and please stay positive!
We are all here to support; feel free to reach out at anytime as we will always reach back.
Oh my, Daxielovinglady. I hear you. Although I'm a caregiver to my husband (also age 71 ) who is on dialysis, I react to serious information just as you do. I also get the heebie jeebies, the insomnia, the whirling thoughts, the panic...it was overwhelming. I finally couldn't stand it any longer and asked my personal physician to help and he prescribed a nonaddictive medication for me. Oddly, the moment I had it in hand, my anxieties disappeared. When those disappeared I could think more clearly. Maybe taking this approach would be helpful to you. That said, I'd like to reassure you that there is a future! My husband was formally placed on the transplant list this week, even at his age. And, recently, a dialysis nurse informed my husband that someone had just received a new kidney after his earlier transplant failed. She knew about this since during the transition, he was put on dialysis for a few weeks. So chat with your transplant team and see what the team has to say. Your current age should not throw you off a transplant list if you're in otherwise good health. And remember, too, that a lot can happen in 5 years as science continues to move forward on pharmaceuticals as well as on mechanical replacements such the implantable artificial kidney project in California (see link) and more. So, rest your mind and body, and then look to the future; it holds promise! And please let us know how your journey unfolds. We care and are here for you.
Thank you Darlenia for your thoughtful words. Diagnosed in 2006 (after car crash) with Minimal Change, became ....Nephrotic Syndrome then FSGS, Dialysis June 2019, Transplant Feb 2020. Fluid retention still is causing problems, with several complications to add the the list.. My husband's the best, I do love him-but treat him badly, he "never gets it right"! . It's just so sad, to come such a long way (2006) & have THE PANDEMIC cock everything up ! Life is for living not simply existing, been there' got the T Shirt !
I underwent a Transplant last year, so I understand your concern. The important thing is precaution, we as transplant recipients are especially vulnerable due to our weakened immune system.
I personally follow the CDC guidelines for the Covid-19, that in my opinion is the prudent thing to do, and take your medication. Exercise, drinking plenty of water will help maintain your kidney and keep you healthy! Good luck friend
Hello Taisha2121, I do all that is asked & more to keep healthy & safe, 'people' scare me . I view this whole Pandemic in a similar way to my shellfish allergy. However delicious the crab, lobster, mussels etc., might look.....don't touch, the risk is too great. Thank you.
I would hope that you take good care of yourself and be thankful for the time off dialysis and make the most of it , as some of us are not as fortunate to get a kidney and remain in the daily grind of it all. Live each moment of every day and do not take it for granted ! You have been given such a precious gift that so many can only hope for. God Bless you !
Thank you Frankie24, Apologies for the blurting out my sadness & frustration , it was selfish of me, sorry. I wish you a Happy Heart., keep strong & safe. Blessings.
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Newbie. 41 CKD stage 4
Being a supportive wife? 
Has anyone waited for dialysis with a gfr if 6
Praying for a miracle 
