Mayo Clinic Connect
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.
Liked by IWantToBelieve, fauneconner, @tbirdmunchkin
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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@oregongirl My husband’s transplant took place on October 23, 2012. We had to stay near Mayo for 30 days for daily labs to tweak the immuno-suppressant drugs. You may not know that if your natural kidneys are not causing pain, they are left alone. The transplant is installed in the groin area right above the fold of your leg (when sitting). There was not a great deal of pain, other than what would be expected from a surgery in that area. He was walking with assistance the next day. We came back home (6 hours away) on the 23rd of November, and he went back to work on November 26.
Liked by Rosemary, Volunteer Mentor
Thank you. I am such a wimp when it comes to surgery. I had my gall bladder take out a year ago and before I went in, I told surgeon I did not even know that I was on my way to surgery. He complied. I am wondering if the Gall Bladder surgery caused my issue with the Kidney.
I will more than likely have the surgery (if I need it) either at the University of Texas or Mayo Clinic in Arizona or Minnesota. Does Mayo have family housing if we are coming from another state?
@oregongirl Once again, seems you don’t have enough information to be concerned about dialysis or transplants or anything else until you find out you need them.
@oregongirl, I wish you well on your appointment this week. I hope you find answers from your nephrologist. Holidays are good, but they have really caused you a lot of worry while you have had to wait for your results, haven’t they!
Keep in touch. We will be waiting to hear from you:-)
Hugs and prayers,
Best of Luck, Oregon Girl. Rosemary — just got blood test results. Most everything was good and Red Blood Cell count was very good at 11.1.
One situation, though, is FE. ferritin. On 12/4/17, the. Fe was 248. On today, 1/13/18 it has gone up to 386. I have had a cold and took an an antibiotic. Would this explain it ? My sodium level was also highest ever at 147. Will be starting blood pressure mediciine tomorrow.
Also given a steroid pack. Don’t know if this may impact Ferritin or Sodium levels
@oregongirl, I’m not sure about family housing. We have the transplant house. @rosemarya– Who can all stay at the transplant house in Rochester?
@rickgc, I am happy to hear from you. I am sorry that you have more confusion about your test results, and also the new medications. I think that the questions that you have asked me, should be directed to your nephrologist. He/she will be able to put this all into perspective for you. – and that should include how this all fits in with your CKD.
Here is information about ferritin testing.
Did you have your appointment with your nephrologist? Or are you still waiting for it?
Hi @rosemarya Thanks for the welcome! Congratulations on your 8.75 year anniversary! 🙂 I can’t believe it’s already been 8 years for me and my brother, who selflessly gave me one of his kidneys.
I was diagnosed with Berger’s Disease when I was 20. (I got food poisoning and my primary care doctor wanted me to go into the hospital for tests. All he told me was I had some questionable blood work he wanted to check further.) I was lucky in that I was able to keep my own kidneys until I was 50. I was told by my nephrologist at the time (we had moved to a different city for my husband’s job) that it is extremely rare for someone to have working kidneys for 30 years after diagnosis.
Lodging for the transplant patient and 1 caregiver. You have to be a transplant patient to stay there.
ok. Good to know. 🙂 Thank you!!
Hi @oregongirl – There is housing available for transplant patients and their families at each of our campuses. Below I’m pasting links to check out the Gift of Life Transplant House (located in Rochester), and The Village at Mayo Clinic (located in Phoenix). I hope they help!
Yes you are right. My entire life I have been a planner. I see oncologist next week. I don’t like making snap decisions. If you think I am bad, my son is in truly a planner. He had brain surgery about a year ago. We had family staying with us researching the best doctors in the USA. He is a genius. He planned every step of the way. He even spent hours with his sister planning his companies future. Neither of us like disruptions like this, but we are ready when decisions need to be made.
@kidney09, Thank you for sharing your experience. I send along with this reply, a sincere thank you and appreciation to your brother who gave you one of his kidneys.
You were very fortunate to have a good PCP. I also remember when my PCP said the very same words about “some questionable blood work”. I was diagnosed with a liver disease, and monitored for around 8 years before I needed a liver transplant, then the acute renal failure happened. So my only experience with kidney issues is a very short one until I got my transplant of both liver/kidney from an anonymous deceased donor.
Was the Berger’s Disease related to the food poisoning incident, or, was it because of that incident that your kidney disease was discovered? When did you learn of the need for a transplant?
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