Learn how to use Mayo Clinic Connect
Request an Appointment
Hi, I was wondering if anyone can give me more info on what to ask the transplant team when I go for my evaluation. I’m struggling with weather dialysis is better or a transplant. I know any surgey has risks.
Ok I was going to go with pd if I ever get to that point. I can’t see how I could go to a center I have a set work schedule don’t see how it would work without quitting my job. May I ask was your transplant through Mayo Clinic.
Jump to this post
@gaybinator, your two earlier postings in this discussion can be found at the following links: https://connect.mayoclinic.org/discussion/saliva-and-dry-mouth and at
Hope this helps. Martin
Thank you Colleen.
@gaybinator,, I do remember that post. I am not real good to remember names, though. Once again, thank you for sharing. Thank you for showing us that there are many paths to take when we are faced with unplanned circumstances. May God continue to bless you and your husband.
UPDATE: pet scan on October 12, 2017 was CLEAR!
Long story short … my husband had a kidney transplant in 2012, donated by our brother-in-law (no relation). As a result of the immuno suppression (prograf) after the transplant, he developed squamous cell carcinoma (spindle cell) on his scalp. Local dermatologist and Mohs surgeon arranged for us to go to Mayo Jacksonville. In July 2015, his scalp was removed and replaced with a flap taken from his back. This was followed by radiation. More cancer appeared below the flap. Several surgeries and more radiation followed. The tumor board determined that more surgery was chasing ghosts and that a systemic solution was necessary. In summer 2016, he was weaned from Prograf in order to restore more immune system to fight cancer. He started Erbitux.
We knew that it was only a matter of time before he lost the transplant. He said he would not go on dialysis.
Beginning in Jan, the creatinine began to soar. He has hospitalized Mar 1 as Mr. Electrical Engineer was so confused and hallucinating, he could not even pick out underwear. It took 5 hrs dialysis over 2 days to recover to some lucidity. He will not receive another transplant because of cancer.
We started 5 weeks training immediately after he got out of the hospital for home-HEMO dialysis. His prescription is for 2 hrs, four days a week. We can do dialysis any time of day and any day we want, as long as not more than 2 days in between sessions. The NxStage System weighs 75 pounds and can go traveling! It can also be used for nocturnal dialysis.
I will not tell you it was not intimidating at first, but each time we become more comfortable.
Please take a look: http://www.nxstage.com/patients/system-one/
You have more courage than I can muster at this time. I would consider my complaints selfish after hearing what you have gone through.
This does not make me feel any more comfortable in going through dialysis. You and your husband are very very strong. I have been very healthy most of my life. I had a gall bladder removed a year ago. I keep thinking maybe this was what started my issues. The doctors kept putting off my diagnosis while I was in the ER three nights in a row. One doctor actually told me to calm down, all I had was a good case of the flu. Well a week later I was nearly dead. My gut was not filled with poison. And now this. I wish I had your courage. I cannot make my decision to pass on the dialysis just yet. However, I am leaning toward passing on the dialysis. I will be praying about this. Thank you so much
@oregongirl I certainly didn’t expect this reply. Dialysis can help you live a mostly normal life for a long time. You may be surprised to know (I was) that diabetes is the number one cause of needing dialysis in the U.S.
You probably know people who are on dialysis right now – you just don’t know it.
Peritoneal is a method which can be done by yourself, and it does not require a machine or needles, although it requires several fluid exchanges per day. The fact that you are uncomfortable tells me you need to learn more before making a decision.
@oregongirl, Remember that we are not doctors. We do not know your own personal health history, nor should we. I am happy that @gaybinator has shared her husband’s story and experience with you. This will provide you with something to talk about and to think if needed. Most important to remember is that you do not need to make any decision, UNTIL AND IF, your doctor says so.
When I was critically ill, and hospitalized at Mayo Methodist in Rochester, I was facing major decisions, and major issues. The transplant chaplain, Fr Joe, shared something with me that I want to share with you. He told me that Courage happens – when fear is combined with prayer. I believe that courage will also happen for you, when and if you need it. You are on the right path already.
Well having this site is an outlet right now. My kids are in denial. They just do not believe anything is wrong with me. I have RA and I was told many organs can be harmed. I lost a baby when she was 3 months old. If I can get through that, I can do anything. Thank you. You all have so much more than I to deal with. Right now my job is prayer for all of you and me.
Hi @oregongirl i can’t say i know what its like to have bad kidneys and maybe need dialysis as i needed a heart transplant but I just wanted to let you know rhat i to understand how you are feeling as both my son and daughter and other family members other then my mom were in denial about me needing a new heart to this day my son is still unable to talk about it and my baby brother and his wife still tell me its all in my head your kids will eventually come around out of denial my advice is stay stronge and have faith and always never give up hope work is good and keeps you busy I can’t work my team won’t clear me and all I know how to be is a caregiver I just thought you might like to hear from someone who has gone thrue with their lids what you are going thru I know its not easy but I believe and have faith and prayer that you are going to be okay no matter what is your decision is trust yourself and your doctors have hope and faith soory if I’m tepeating myself can never write what I’m thinking exactly right on paper or this phone
@teabird..you said it just right. I went next door to my daughter in law and my son’s home and my DIL asked me whats wrong? I don’t know what expression I had on my face or what made her ask the question. I answered, just feeling a little weak tonight. FROM WHAT? she said. I understand. I cared for my husband until he passed away. I remember wanting to say.. GET UP, you can’t well just lying there. And then he was gone. So, I don’t hold it against them. This is how they survive loosing a parent. After-all, when they loose a parent, they realize their own lives are not forever. I really can’t say much right now as I will see the doctor and have more information. A heart transplant sounds a lot more frightening than the kidneys. However, both are needed for this body to work. My issues is getting tired so easily. I feel like I could sleep all the time. I grew up in Minnesota, so I am familiar with Mayo. My mother went there and I was always with her. Here it is New Years Eve and at 9:00, I am ready to fall asleep. I will force myself to look into Youtube on my laptop just to stay awake. Thank you Teabird. You are the BEST!
Please call me glinda and your welcome
Do not fight your body, it knows what is best. If it needs sleep there is a reason. Check with your doctor as soon as you can to find out what is happening. May your New Year be enjoyable and fruitful.mlmcg
Rosemary..they have done so many tests on me. No one ever tell me the results. Last visit the cancer Dr said it takes awhile to get tests back. I figure he is gone for Christmas. I am tired of waiting. I am calling his office tomorrow.
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In