Dangerous Transplant or Dangerous HD. That is the Question.

[Carillon]

Hi everyone. I'm in a state of confusion. I am at GFR 15 but stable and functioning. No problems. I have a form of lymphoma for the last 20 years which never required treatment. It's a rare form. My nephrologist insists I go on HD. But i began to search for more information as i prefer a transplant. I had a consultation with a another, more senior hematologist at another hospital who said my current lymphoma wouldn't be impacted by immune suppression drugs but I would be susceptible to other infections and cancers related to post transplant immunosuppressant drugs. He said a transplant would be very dangerous but it was my choice. My current hemotologist says the odds are high that i would probably die in the first year post transplant. I think there's an even chance that in year 1 people on HD can die too. The transplant doctor said so long as i have a living donor he saw no problems with a transplant although he thought HD was 'safer' at my age (75). My current hospital hemotologist believes its risky but feels I am a strong individual. I just don't see myself living in a restricted lifestyle with HD and its inherent risks (infection, coronary disease, restricted intake of food and liquid, constant monitoring etc) and the thought of being imprisoned by this medieval contraction. Advice?

[ashok5085]

Hi Carillon, are you getting a living donor? Infection and risk of cancer is there even in normal transplant recipients. Just check how good a match is the donor. Better the match, lower will be the dose of transplant medicine and hence lower risk of cancer/infection.

[Carillon in reply to ashok5085]

Yes I know. I have two volunteers but as yet haven’t had them tested until I know for sure which direction to take.

[Carillon in reply to ashok5085]

Yes I have several people who have volunteered. We wont know if any one matches until i make a final decision and decide to go for a transplant or not.

[WYOAnne NKF Ambassador]

Maybe you should see if you could get an appt at a nearby transplant center? See what they could tell you about your options.

There are a lot of side effects to dialysis and to transplant. If asked, I would go for the transplant every time! I however, do not have your medical issues with lymphoma, etc. I am living well after nearly 20 years post transplant.

There is a risk of cancer and I had several infections, especially the first few years, from taking the immunosuppressants. I could tell you though, if you take care of yourself, take your meds on time, do your labs on time and report to your transplant team any problems or issues that crop up, life is good!

I would also talk more with your hematologist. Have you asked anyone - family, friends about becoming a living kidney donor? This is something you could be asking the transplant about too.

Keep us posted...

[Carillon in reply to WYOAnne]

Thanks. I have spoken to two nephrologist and two hematologists. I get some encouraging me to try a transplant and two suggesting HD. Very confusing. They negative ones say I most probably will die but there’s a small chance I won’t. HD is dangerous too with risk of death.

[Carillon in reply to WYOAnne]

Thank you. May I ask what kind of infections did you get?

[WYOAnne NKF Ambassador in reply to Carillon]

I actually got the CMV virus. Most people have had this by the time they are 20 years old. Is suppose to be a lot like MONO. You just feel tired all the time. I however, never had CMV, but my deceased donor had. The worry is CMV can affect your transplant. About 2 weeks post transplant I was back in the hospital on IV antibiotics. I was in-patient for 2 weeks and then went home feeling fine. The only effects were a temperature and feeling lethargic.

This is just coming from me, I am no medical expert....but LIFE is worth the risks, whether that is dialysis or a transplant for you. I am 69 years old and LOVE LIFE.

Melatonin over the counter works for me most of the time for sleep. But please check with your doctor before you take anything.

Prayers.

[Carillon in reply to WYOAnne]

Thank you

[Hidden]

My brother in law died after three years on that medieval contraption, and I'm watching my next door neighbor waste away on it. I'm guessing he won't last 3 years. I care even less about a transplant unless it is stem cell grown, then I might consider it. Just my opinion but when you do anything to destroy your immune system, you are asking for trouble . Please check all your options and multiple Dr opinions. In my area, the nephrologists own the dialysis clinics and make gobs of money from people who choose to die on dialysis. (I'm 83 and 4th stage ADPKD). Good Luck.

[KidneyCoach NKF Ambassador in reply to Hidden]

To Oldearkie - Yes dialysis is TOUGH. I've managed nearly 18 years on dialysis and have many friends who have lived 20 or 30+ years. It takes discipline and tenacity. I haven't chosen to "die on dialysis" rather live my life. I've had 3 different jobs. Worked at Walmart for almost 7 years, then H&R Block and another private job. I've also volunteered for advocacy organizations including NKF, AKF, AAKP, DPC, HDU, ESRD Networks, NCC, KCER and as a Subject Matter Expert for several organizations. I've also been to Washington D.C. to meet with and discuss funding and research and advocate for patients with kidney disease. I've seen 3 of our 5 children marry and watched as 10 grandchildren have come into the world and grow and thrive in their lives. I've gardened, babied furbabies, knitted hundreds of scarves for family, friends, fellow dialysis patients, traveled and more. Is that "dying on dialysis"? NO! Its living life and enjoying all that I can through my personal hobbies, things I love to do and people I enjoy doing them with. I ask that you please don't diminish the lives of those on dialysis by stating we "choose to die on dialysis". Choosing Dialysis is also a choice to LIVE LIFE!! It can be done and greatly so. I am living proof. My life has value and is not meaningless just because I "choose to LIVE while on dialysis." Many Blessings.

[brynat2 in reply to KidneyCoach]

Wow! What a blessing! Do you mind if I ask what type of dialysis you do? Do you go to a clinic or do dialysis at home?

[KidneyCoach NKF Ambassador in reply to brynat2]

I started out in-center for about 8 months then transitioned over to nocturnal home hemodialysis. I did a 3 month trial of PD but it didn't work for me. I was listed for almost 10 years. My antibodies are very high at 98-100% and I've been through multiple rounds of de-sensitization to no avail. I currently do extended dialysis (7 hours) in the evenings. I can change days and times according to my own personal schedule. I plan on being around for a very long time. Blessings

[brynat2 in reply to KidneyCoach]

Thanks for the info! Do you know of any thing over the counter that my husband could take to help him sleep? He doesn’t sleep well at all.

[KidneyCoach NKF Ambassador in reply to brynat2]

My best advice is consult his Dr. Not knowing the meds he takes or health issues it would be very irresponsible of me or anyone to suggest anything even OTC. Many Blessings

[AnneEG in reply to KidneyCoach]

Can I ask which kind of dialysis you have. You are so positive which we all need to hear and not negative comments.

[KidneyCoach NKF Ambassador in reply to AnneEG]

I did in center hemodialysis for about 7 months then went to home hemodialysis. Been doing nocturnal home hemodialysis for almost 18 years. Dialysis is tough. There are good and bad days. The one thing we can control is our response to what life throws at us. Thank you. Blessings

[Carillon in reply to Hidden]

I am 75 and hope for 10 years more. I am not risk adverse but not do I want to die in the OR. The immune suppression drugs are tough plus I might need to have chemo if lymphoma spikes. It’s all a bit confusing.