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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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That’s awesome you raised monarchs! There’s a butterfly conservatory in Gainesville that I enjoy visiting…very peaceful. Indeed, I think often of how having a man’s liver in my body has transformed me, and not to mention saved my life! But you are truly transformed—like the butterfly with new DNA 🧬.
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2 ReactionsBeautiful! Crying!
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2 ReactionsI have seen the butterfly image on many Donate Life bulletins and merchandise. I have even seen announcements of Organ Donor Memorial Ceremonies where there is a butterfly release.
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1 Reaction@waveg Good morning, Gretchen! It’s been a while since we’ve chatted so I though I’d drop by to say hi. How’s everything going in your corner of the world? ☺️
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1 ReactionHi Lori! It’s so nice to hear from you. All is going very well in regards to my stem cell transplant. I’m finally tapering off of tacro.
Just when Covid is waning, my numbers are great, I’m ready to travel, I broke my ankle. I had surgery a week ago and must stay non weight bearing for 6 weeks. The first 3 weeks elevation.
I hope you’re doing well and able to get away some.
It was nice of you to get in touch.
Gretchen
Hey Gretchen! It’s great to hear from you too! I’m happy the news is all good on the SCT side of things!! Takes a while but it’s so worth the effort isn’t it?
Bummer about the ankle! How did that happen! I’m so sorry it’s the obstacle holding you back now. Darn it! I hope it all heals quickly for you and you’re back on your feet soon. You have a lot of lost time to make up for now! ☺️
I’m doing great, thanks. I honestly feel like nothing ever happened. I’m still cautious of course, because of Covid but I’m coming up on 3 years and my doctor is highly encouraged that there is no relapse of the AML. . He said it seldom returns after 22 months and I’m 33 months. Yippee skippee!! We’re actually down in Florida enjoying the warmth and sunshine, resuming life to the fullest. Every day is a gift, right?
If you get a chance, check out a new post I started for us transplant patients.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I thought it would be a cool idea to inspire others who might be facing a transplant down the road, to show them what life is like on the other side! Have you any photos that wouldn’t exist if not for your transplant?
My 76 year old wife was found with Stage 4 pancreatic cancer in mid December 2021. She died 3 weeks later at home under the care of Hospice. Rita had only a slight stomach ache for a month before being found with Stage 4 Pancreatic cancer of the stomach ...
When talking of pancreas transplant, how early does a patient have to be told they have PC and are a candidate for a transplant ? Stage 1, 2, etc ???
Hi @wakulla168, I'm sorry to hear about the loss of your wife. Pancreatic cancer can spread undetected throughout the body quickly. My aunt's journey with pancreatic cancer was equally short. Just like your wife, there was not indication of cancer and 3 weeks later she was gone.
When pancreatic cancer is detected early, which can be hard, there are various treatments available. However, pancreas transplant is not a treatment option. This article explains:
- Are Pancreas Transplants An Option For Pancreatic Cancer Patients? https://seenamagowitzfoundation.org/pancreas-transplants/
Wakulla, I sense you are asking yourself if you or your wife's medical team could've done more. I doubt that you could've. Pancreatic cancer is really hard to detect. Please don't add guilt to the rollercoaster of emotions you may be feeling.
Losing a life-time partner is hard. You may wish to connect with others who get it in the Loss & Grief group. You're not alone.
- Loss & Grief support group https://connect.mayoclinic.org/group/loss-grief/
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1 ReactionI too am a SLK transplant recipient (simultaneous liver and kidney, at Mayo Clinic, June 2014), and until recently had big issues with appetite, esculatory pleasure, and weight maintenance. Post transplant I had all of the possible complications: rejection, infections, astonishing pain, etc. and found most foods abhorrent, even ones I had previously enjoyed.
It got to the point that I was facing another NG tube.
But I hung in there, kept a calorie diary aiming for 2000 kcal/day, not always making it but always trying. I drank high calorie shakes and a kidney supplement.
Nowadays I maintain a good weight and even sometimes have to trim back my snacking. I think time, occasional cannabis (legal in my state) and proper pain control all helped. I’m also blessed with very supportive caregivers who ply me with nutritious goodies. I became a vegetarian post transplant as I found the taste and consistency of meat, even chicken, abhorrent. This has had the positive side effect of lower cholesterol values. As an additional plus, I quit consuming alcohol and tobacco pre transplant and never resumed.
Anyhow, my trip post transplant is still fraught, and I stick close to my local doc as well as the Mayo transplant team. Right now I’m dealing with spine and other bone issues, as well as a mystery lesion in my lung, already scarred from surgery to treat a fungal infection.
But as I’ve learned to say, my worst day post transplant still beats my best day with ESLD and kidney failure.
That’s all I can offer right now.
Best regards to all of you on your transplant journey.
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2 Reactions@emil, I want to welcome you to Mayo Connect. I see that you have recently joined in Dec. I am happy that you have posted in the transplant discussion, and especially happy to meet you, and learn that you, too, are a SLK transplant recipient! I haven't met many others. Have you?
I like what you said about your worst day post transplant still beats your best day with ESLD and kidney failure. I have, and still, say the same thing.
I needed a liver for PSC (Primary Sclerosing Cholangitis) and then developed acute kidney failure. I was on the waiting list for a liver in Kentucky, but had to be inactivated from the transplant list because attempts to get a biopsy and diagnosis for bile duct cancer were unsuccessful. I was scheduled for an appointment at Mayo to get a diagnosis and then return home. But my kidneys failed and ended up in ICU in critical condition with emergency dialysis. After 5 days I was flown from ICU to Mayo Rochester. I spent the entire spring of 2009 in Rochester at Gift of Life House with intervals in the Mayo Methodist Hospital. I was on dialysis until transplant on April 22. three weeks later I was able to return home. I (with my husband) do return to Mayo annually for follow-up evaluation. My local PCP takes good care of me during the rest of the year.
Here are some discussions that I want to suggest to you:
Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
Snapshots of hope: Life on the other side of transplant.https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I hope that you will get some answers about your lung lesions. Are you being monitored for that? Do you return to Mayo for an annual evaluation?
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