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Sevkira (@sevkira)

Kidney transplant

Transplants | Last Active: May 15, 2018 | Replies (172)

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@sevkira

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.

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Replies to "Ok I was going to go with pd if I ever get to that point. I..."

There is a home hemo-dialysis option, if you have a willing and able caregiver. It is a team effort. My husband lost his transplanted kidney to immunotherapy earlier this year. We have been doing home hemo since March. http://www.nxstage.com/hcp/care-settings/home/

@gaybinator, Thank you for your perfectly timed response! I want to introduce you to @oregongirl who recently asked about dialysis.

Rosemary

@gaybinator, I am so sorry to hear about your husband’s transplanted kidney. I am also happy to hear that there is a way to do home dialysis. I honestly think that this is a concern that all of us recipients have hidden deep inside our minds. And hearing from people like you is encouraging.
If you are comfortable with sharing, is your husband eligible to get another transplant?
I wish him, and you a promising 2018.
Rosemary (liver/kidney)

If I could find my first post, I could tell the whole story. The reason SCC will take my husband eventually is because of the immuno suppressants given in the two years after the kidney transplant. People should be made aware that this is a significant problem in the kidney transplant world. They should get a top-notch dermatologist to follow them. My husband was a surfer as a teenager, and therefore more prone to little cancers here and there. They were burned or frozen and were gone.

The one that appeared in summer of 2014 didn’t go away. By the time the dermatologist realized it was out of control, it was established and flourishing as the result of immunosuppression for keeping the kidney. Will you help me find the story so I don’t have to type it again?

Hi Gaybinator,
Is this the post you were looking for https://connect.mayoclinic.org/discussion/husband-refusing-dialysis/?pg=1#comment-60628

To find a message that you’ve written simply go to your profile page to see your entire history of posts. To get to your profile, click on your profile picture or @username.

@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
https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer
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.
Rosemary

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.

Hugs,
Rosemary

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.

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