My sister is on the transplant list in Birmingham, AL but every live donor who has came forward has been rejected and she hasn't received one call from the Transplant Center for a deceased donor. My 3 brothers and I all have received deceased donor kidney transplants but live in KY. My sister will not make it another year in her condition. She is in ESRD and has chosen not to do dialysis and has given up hope as the last live donor contracted COVID and since the donor has mild asthma problems the nephrologist has advised no kidney transplant for as least a year since long term effects of COVID are not known. My sister is only 58 years old, blood type O and suffering. She is taking phosphorus binders which make her sick, iron injections which make her even more sick, and so and so on. Should I encourage her to keep fighting or simply let her do what she wants to do and let nature take its course.
Bowling
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bowlingpkd
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Sorry to hear about your sister. Please keep encouraging your sister to get on dialysis. Many of us on this forum have needed dialysis, including myself, in order to make it to a kidney transplant. For example, I was on PD for just five weeks before I received a living donor kidney. What a gift!
I’m not sure if you’re aware but there are 90k people in the U.S. on the waitlist. While there are only 6-7k living donor transplants a year. I would tell your sister:
1. Dialysis is also a life saving medical technology. It can get you to the new kidney — living donor or deceased. Keep on trying!
2. There ups-and-downs to everyone’s journey from ESRD to a transplant. It can be an emotional/physical struggle. Keep on trying.
This!! Dialysis is life saving until she can get her transplant. My dad has been on Dialysis 5 years and then 4 after his first transplant failed. He would not be here without Dialysis!
Please encourage your sister to consider dialysis. Dialysis is there to improve life - and it certainly did so for my hubby. He was given the chance to pick and choose the type of dialysis he wanted, so he had the opportunity "buy in" to the features he wanted. Throughout, however, it was very easy to think the worst and become depressed. We assumed a kidney transplant would never happen, after all hubby was a 70 year old diabetic with a heart stent. We actually assumed we were being used as a money machine for the medical world. But much to our surprise, my hubby received his transplant exactly one year after starting dialysis. Think positively - if she's listed at the University of Alabama in Birmingham, the wait list for a deceased donor isn't overly long for those with Type 0 blood (see link below with info on all transplant centers). Moreover, perhaps your sister can enhance her situation by double listing at a center near you. (The records are often shared between centers.) I often reflect on what our nephrologist told us, "Dialysis is the bridge to a transplant." And that was so very true for us. Since your sister has probably accrued considerable time already, her chance for a transplant may be sooner than later. Being a candidate for a pre-emptive transplant may make a difference too . Sending encouragement to both of you that your sister finds her way to a wonderful transplant.
My doctor told me that I had a choice. I could sit in a recliner for 14 or 15 hours a week, or I could lie in a grave 168 hours a week. Dialysis is far from perfect , but it is life saving.. I was 76 years and 11 months old when I got my transplant and I am almost 80 now and feeling and doing great. If not for dialysis I would not experienced and enjoyed these last 9 years. I am like the other responders in saying you should encourage her to try dialysis.
You are a caring sister in a family that, sadly, has had far too much experience with kidney disease. Like others, I would encourage your sister to at least try dialysis. Some people who delayed starting dialysis regretted having waited so long because they felt better on dialysis. Feeling a bit better might help with your sister's depression and allow her to see that a transplant is possible in her future. If your sister is willing to accept a higher risk deceased kidney she should let her center know and she may receive offers even sooner. Best to you and your sister.
My sister received a call for a transplant but was to sick to get it. A living donor is the only way she is going to survive. She agreed to schedule dialysis only with the condition she could come back off of it once her body can survive a transplant. I feel she has given up all hope at this point and is suffering from severe back pain on top of everything else. Thank you for your response.
May I suggest that if possible, she sees a therapist for ongoing moral support? In her situation I feel an independent person whom she can trust is an important source of support. Family is great but she may need a professional to guide her way of making choices.
God bless your heart. I can't give you any advice, but if it were me, I'd try to concentrate on making myself as comfortable as possible and skip the treatments. The side effects of those medications sound awful. I've looked at what other people have written and I see that I'm in the minority, but that is what I would do if it were me.
Please encourage her to fight! Get on dialysis to stabilize her condition and get aggressive with donor search. Use ALL forms of social media to post and ask. Ask people to share your posts, etc. Find a willing donor and even if not a match for your sister pursue a kidney swap or pair share. Don’t let her give up!
Hang in there you never know when the call will come. Asthma is difficult to work around. A lot of surgery medication can stop the breathing process.
If you are her advocate, you could help her by calling people that need to be contacted to answer questions and concerns. She might want to go to talk therapy and see a meds doctor based on the conversation. She may be depressed. You can force her to stay on dialysis if you go to court on her behalf, however other issues will surface because she will be forced to stay on dialysis.
If she stops dialysis she will never receive a kidney because the nephrologist team will deem her as someone that will quit taking meds or direction. Plus, it is really painful to just stop dialysis.
Yes, please encourage her to get on dialysis, which will hold her over until she gets transplanted, I was on dialysis for 9 years before I received my transplant. I felt so good that my coworkers never knew I was on dialysis until the day I got called for the transplant. Tell her that dialysis is her friend!! Wishing her all the best!!
Praying for your sister and your family. Please encourage her to consider going on dialysis. I was 49 years old when I started on dialysis and had a job where I traveled by plane weekly. I did dialysis around the country while working and dealing with other health issues to get on transplant list. Eventually stopped working after three years. It took 8 years to get on list in April 2021 and received a kidney in September 2021. I am O positive. I looked at it as 4 great days gained ( with 3 days so so) versus 7 days not that good. With you and your siblings having gone through this journey she will have a strong support system. Best of luck to you all
Dialysis is a scary thing at the beginning but as soon as she feels better she will change her mind. I was diagnosed when I was 30 and I didn’t have any medical condition prior. It was the shock of my life. I couldn’t imagine myself on dialysis and I actually refused it, thinking what’s the point?? my life is over but with the support I got from my family and everyone around me helped me massively to start my dialysis and I’m so grateful that this technology have saved my life and so many others. Now 5.5 years later I got a kidney and life is much better. So be the support that she needs and don’t stop no matter what. God luck with everything and I wish you and your sister all the best.
I think it’s very important that your sister speaks to her doctors and a psychologist about her depression. I’m concerned depression and fatigue from ESKD are influencing her decision making.I personally found PD dialysis easier than Hemo dialysis, but everyone is different. Like others have said - Right now, she medically feels horrible. Dialysis WILL make her feel better. Better, not perfect. Thoughts for you and your sister.
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First Time Kindey Transplant 
A 2 timer kidney transplant both deceased donors
One year, one month post transplant 
I got a kidney!!
