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Posts (3589)

2 days ago · Low blood count after Kidney Transplant in Transplants

@parojulie, I have a liver and kidney transplant. My kidney failure was sudden and it as caused by my liver failure. This happened 11 years ago, so please excuse me if my memory of details is vague.

When I was in early stages of liver disease diagnosis, I took prednisone for a while, and then my GI added Azathioprine so he could reduce the prednisone. I don't recall the dosage or the length of time, however I do remember blood tests every 1-2 weeks, and at my 1st lab after beginning the Azathioprine, I bled heavily at the needle site and noticed that any bump or slight skin abrasion would bleed and bruise in a not-normal way. My GI had me stop the Azathioprine immediately. Currently Azathioprine remains on my list of 'do not administer' drugs.
I think I was mildly anemic with my liver failure, and for sure, with my kidney failure. While on dialysis, I received iron infusions and I remember a couple of times I was given a blood transfusion.
After my liver and kidney transplant, at my 4 month check-up, the kidney transplant doctor prescribed an iron supplements because I was anemic. I think I took the iron supplements for a couple of years. Today, I am advised to take a plain, no iron, daily vitamin.

I definitely urge you to keep in contact with your transplant team. You are still at the point where medicines will be adjusted as your body responds. Is your transplant team involved in your current care? Some of my favorite question(s) for my team: Why is this happening? What can be done about it? How worried should I be? And of course, the questions that you posted here are essential for you to ask them.


2 days ago · Writing to Your Donor's Family. in Transplants

Here is a link for information from UNOS – United Network for Organ Sharing:
UNOS Transplant Living – Contacting my donor family: https://transplantliving.org/community/contacting-my-donor-family/

3 days ago · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

Hi @tedwueste, and welcome to the Mayo Clinic Transplant group. I am happy that you have joined because this is the place where you can meet and interact with others who have questions and experiences to share about stem cell transplants.
I want to commend you on your desire to share and support others. To get started, would you tell us a little about yourself and the process that leads up a stem cell transplant?

3 days ago · Anyone had successful stem cell transplant for AML? in Blood Cancers & Disorders

@tedwueste, Since you are a new member on Connect, I would like to help you to get started some tips on how to be a contributing member of a community that works — a safe space where members support one another and together we help improve our health and well-being.
Tips for Participating in an Online Community


I am a liver and kidney transplant recipient, and I look forward to learning more about stem cell transplant from your viewpoint.

4 days ago · Transplant anti-rejection medications. What's your advice? in Transplants

Not too long ago, pomegranates were the rage. I don't see it so much now, but it does slip into menues now and then. I don't honestly know how much it would take to interact, so I choose to simply avoid anything questionable.
How does anybody else handle with these hidden ingredients?

4 days ago · Transplant anti-rejection medications. What's your advice? in Transplants

@jerrynord, Thanks for the reminder!

I find it helpful if I re-read the papers that I get with my immunosuppressant medications. Mayo Specialty Pharmacy always includes printed information about my meds in my delivery orders. I get my other medications locally – and if I have an afterhour medicationi from a chain pharmacy I never get the papers. When I asked "Why" I was told that nobody reads them anyway! Hmmm? My independent local pharmacy always includes the paperwork!

For more information:
– Immunosuppression: Watching For and Managing Side Effects
"Some medications and foods may change how immunosuppressant drugs work. Before you use any other medications, talk to your nurse transplant coordinator or transplant pharmacist so they can make sure the new medication is safe to use with your transplant medications. You should do this for both prescription and over-the-counter medications. Over-the-counter medications would include vitamins, supplements, and herbal products. Some common foods and beverages that may affect how your body uses your immunosuppressant drugs include grapefruit or grapefruit juice, sodas with grapefruit juice in them (ie. Squirt™, Fresca™, or Sundrop™), Pomegranate and pomegranate juice (ie. Pom™), Seville oranges, also called Spanish, sour or bitter oranges, and more than 6 clementines per day. These foods should be avoided if you are taking a tacrolimus or cyclosporine product , sirolimus, or everolimus." https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

-Transplant Medications 101: Q&A
Foods to avoid, drug interactions, best time of day to take medications and what to do if I forget a dose.


Does anybody else get notices with their meds? Do you read it? What have you learned or been reminded of by reviewing the information?

4 days ago · Start Your Day Right in Healthy Living

In the summer, I like whole wheat toast with some jam or peanut butter, and a piece of fruit. In the winter my favorite is oatmeal with a sprinkle of cinnamon and fruit or nuts. I also enjoy an egg with a sprinkle of cheese and a piece of whole wheat toast.
I do try to start the day right – except for my lab days which is a local bakery treat day.

5 days ago · Post Transplant Surgery and Early Recovery: What's normal? in Transplants

@gphetteplace, I want to check in and ask how you are doing since you posted about your left side pain and your endurance level.
Like you, I was very sick and sedentary prior to my transplant, and that was especially hard for me because had been a healthy and active person before my liver complications set in. After transplant, I gradually increased my walking time and distance. At 6 months after surgery, and with my teams approval, I was able to do some hiking in the Great Smokey Mts with my husband. I was slower and didn't go as far as before, but it was a victory for us. I cried tears of joy as I climbed/crawled the final portion of the rocky trail to an overlook. I was 60 when I got my transplant.

Have you had your 4 month follow-up yet? What changes are you experiencing with your energy level?