My husband (age 56) just turned down ‘ the call’ and I am , we are absolutely shaken by the decision even though we spoke about it before I did not think he would really carry it through. He lived through 2 very complicated & traumatic transplants that didn’t necessarily give him the ‘ quality of life ‘ we often read about. He said he was not emotionally ready and chooses to remain on dialysis where he feels stability for the first time . I feel like an accomplice but I also know that I am supporting someone who has suffered tremendously over the last 17 years. He was told a year ago he had 98% antibodies and a 2% chance of being transplanted, was placed on a special list here in Spain (PATHI) for sensitized patients. Just wondering if anyone has turned down that call with an ‘ I ll pass this time ‘ how did you move on from that decision? Hoping to hear from some constructive and yet empathetic listeners.
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I haven’t turned down the call but can understand why some do. I just wanted to send positive thoughts your way.
I have friends on dialysis who are experiencing good outcomes. They aren’t choosing to pursue transplant evaluations. Some in this forum have made that decision as well.
These are difficult decisions and must be made individually. No matter the decision, the person (such as myself) still has chronic kidney disease. It’s about quality of life. That isn’t s guarantee with any treatment option. CKD is a tough medical condition.
Again, sending you both positive thoughts a and a sense of peace with the decision made.
I seriously thought about it. I did very well on diaylsis. I was scared but thankful at this moment that I choose transplant. If my odds were his I might have done the same.
Hi, I also have high antibodies after my first transplant failed. I got many calls but cross match was always positive. I am being desensitized currently with Rituximab infusion. Hopefully it will lower the antibodies and allow me to be transplanted. You may also discuss desensitization with your nephrologist.
Given his history with transplants I would argue that he has perhaps made the right decision for him. He is, after all, the one who has to deal with the pain at the surgery site afterwards, the side effects of the meds, and most of all the grief that comes with finding out this transplant doesnt work either if that were to be the case. I think it might help to remember that he has full autonomy in this decision & that needs to be respected.
I was active on the list for about a year but when I had health problems I called and asked to be made inactive. I’ve since been in the hospital twice and and on hemodialysis. I feel good but still working on my strength and regaining weight.
I have four blood transfusions so who knows what my anybody’s are. I’m not sure if or when I’ll get reactivated. I fully understand your decision and wish you the best.
Transplant is not for everyone...He has gained experience of being Transplanted and Dialysis and should stay with what makes him feel has the best quality. What type of Dialysis is he doing ?
Hello. I had a liver transplant 7 years ago, hoping for a new shot at life. At the time they chose to use tacrolimus as my anti rejection med. It is now slowly killing me. I developed terrible digestive issues, and couldn't leave the house for months. Nothing they gave me helped. My gastro doc finally had me try medical marijuana. Huge help. But not cost effective. I now have high blood pressure, IBSD, glaucoma, and CKD stage 4. I am constantly in pain, have no energy, and a diet that is nearly impossible to follow. Oh, I also am taking 26 pills a day just to sort of live. I decided not take dialysis or a transplant for my kidney 2 years ago when my gfr numbers dropped to 15. I was able to change a few things and get back to 25. I'd say I've only enjoyed about a year of what was supposed to be an improvement to life. I am thankful for the extra years, but I'm just too tired to do it all again. I am at peace with my decision. I hope you can find peace with whatever you decide long term.
Thank you @Herewegoagain12 all sounds too familiar and tacrolimus was one of our enemies too along with a high dose of Pedrisone for 13 years. I think my husband is at peace with his decision for now and I will find peace too. Wishing you well, one day at a time …
I’m sure sometimes it hard to know what to do . But we have to listen to our on body and your husband thought it not right time for him right now. I can understand about the high antibodies I am a hard match cause of it and I have been turn down kidneys because of those high antibodies. And if he is happy on dialysis then that is for him right now . I have learn through reading so much on this board that transplant comes with problems too. Sending prayers to you and your husband on this journey .I know my transplant center has told me it is ok to turn down a kidney and nothing is held against you for it you still stay the same place in the list .
It is his body and he has every right to decide what he feels is best. I personally would love to speak to him about his transplant experiences. I have no idea what to expect except the "rosie" picture everyone paints about the wonderful freedom and extraordinary life after transplant. I would love to hear the truth so that I can decide if it is right for me.
I'm also a spouse and caregiver to a man who currently has a transplant. He has had a hard time with it - he wound up with swollen testicles, a ureter leak, then a foot drop that made him trip and go through brain surgery - not to mention blood sugar issues and utis that have also landed him in the hospital. He, too, has said "never again". My problem is that I was "driven" on getting this transplant for him so I put in a lot of energy and effort - after all I love him, we are a close couple, and I want the "best" for "us" for years to come. And, interestingly, everything is pretty good now. So I often catch myself telling myself that surely lightening wouldn't strike the same way again. But then I remember what he suffered through earlier and I've made peace with it. Sometimes we have to let our loved ones go to choose the path that is right for themselves, not so much for "us". It's the hardest thing in the world to do - giving our loved ones their agency. Sending grace and peace to and hugs your way.
Thanks Darlenia . Sounds a lot like how our 2nd transplant went too. My husband spent 5 months in hospital fighting to keep that 2nd kidney…I think our way of thinking and especially loving someone changes in chronic illness .. we learn to comprehend far beyond what we think we are capable and mostly empathy rules the day !
I’m sure it was a difficult decision. I have been on dialysis for seven months and I guess I am on the list, but it could take a couple years. Right now, I’d be all over that, but who knows when the time comes… I’m 76 and may not be eligible by the time my turn comes.
If he is comfortable where he is, that’s probably the best thing considering his history. Follow the medical advice is the important thing. Things in Canada are different than in Spain, no doubt.
After seven months, I am finally getting a bit more confident with the machine and all that. If he is happy with his situation and life on general, that’s a good thing. Kudos to your support as well. It’s tough on partners and family in general. I am so happy to have my daughters in my corner and that support is so important to me. I live alone, but they are in contact often and help out with things when they can and it is so appreciated.
I had a transplant for 16 years, that's year 1989, so I had to take prednisone plus two other anti-rejections. I didn't feel good with prednisone, it made my face and my body ballooned up, and it did something to my brain also. After I took the prednisone my "light" dimmed down, I lost the light in my eyes, felt like a black shroul came over me. Those 16 years I had my husband and kids being my support.........until later he left me. Later my episode of depression became schezephrenia, not to mention I had to deal with three episode of rejections (hundreds mg of prednisone, gradually tapered down.) while still suffering the black clouded mood disorder and worsened acid reflux and warts. During one episode of rejection, I finally asked the kidney surgeon to take this transplant kidney out. I want a normal brain, i don't want a shrouled brain. I'm on hemodialysis for the 14 years now with a normal brain, not puffed up face and body, I'm 73 now. We have a fellow been dialysised 40 years now here, It gives me hope. I'm glad to hear right now, people receiving transplant not given prednisone now, and also, transplant is not for the weak brained or mentally impaired. Jesus sustaining my life, he provides my daily sustenance, thank You Jesus.
Wow. I imagine that is a tough decision for you both. Especially hard after going thru 2 rough unsuccessful ones before. I was doing PD for 13hrs a night and it was rough. I had insomnia and very little energy.
I am about the same age now as your hubbie. I also had 98% antibodies when I started dialysis, with 16% function left. And within a year and a half or so, I had 0% left. Mostly due to stress and lack of support. I was told that they would do their best to keep me comfortable. Then 5 years ago, I got my call and took it. I was told 9+ yrs wait but was lucky that I got my call after about 5 yrs on PD. Fortunately, it's going strong. I found out right after my transplant that I was 100% sensitized by then. Crazy! My kidney was only a 3 out 6 match but apparently, it is enough.
It has given me my life back. I have a young child and I am doing SO much more than when I was on dialysis. Grateful that I can be the mom my child needs. I never thought I would be here, to be able to watch my child grow. I still deal with chronic fatigue, fibromyalgia and sciatica but I do what I can to manage that. I either sleep a lot or very little. I continue to have insomnia due to the side effects of the meds and when my fibromyalgia fatigue sets in...I can sleep for days. But my life is mostly considered back to normal. A new normal. I don't know if I could survive 13 hrs a night of dialysis anymore. And definitely don't think I could do HD.
Your husband is doing what he needs to do and making the right choice for him (and hopefully it is also what is right for you as well.) My transplant went well and is doing great even tho I am highly sensitized and will be on high amounts of immunosuppressants for the life of this kidney. I can not imagine what your husband had to go thru, twice. I think it's great, he knows his own limitations and boundaries.
Many people find their rhythm with dialysis and it sounds like he has found his. I hope things continue to go well and that you both enjoy your lives together. You sound like a very supportive and loving partner. He is fortunate. Not everyone has that.
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