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Mentor

This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

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?

Interested in more discussions like this? Go to the Transplants Support Group.

gaylea1 | @gaylea1 | Jan 3, 2020
In reply to @rosemarya "@livertrex, I am happy that this procedure is becoming part of your past history. You are..." + (show)
@rosemarya

@livertrex, I am happy that this procedure is becoming part of your past history. You are fortunate that this problem was discovered during your check up. It is a reminder of why our transplant teams order all of those tests for us. I, as well as others, have talked about the 'marathon' visits that we experience.
I once needed a surgical procedure at my liver transplant site that did not require staples, just surgical tape. Sounds like I was lucky for that, however it most likely had to do with the seriousness of the procedure. I found that hugging a pillow helped me to move and sit up when I was in post surgery pain .
I assume that you will be returning to Phoenix for a follow-up and to get staples removed?
@gaylea1, I understand that we are all different, but were you at home or hospitalized during your recovery?
@livertrex, Other than the post surgery pain, How are you doing? Are you eating and able get move around? I want to echo @gaylea's wise advise - Go slowly and allow your body to heal itself.

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@rosemarya I was in hospital 4 days after the artery operation. I came home on the 4th day. Not very long and I had a pile of stairs to navigate. Just trying to get comfortable (meaning cope with the pain and akwardness) while sitting or lying down was next to impossible. I cried a lot the next 3 weeks 😔

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2011panc | @2011panc | Jan 3, 2020
In reply to @contentandwell "@rosemarya Things are going fine for me, post-transplant. The biggest downside so far is that I..." + (show)
@contentandwell

@rosemarya Things are going fine for me, post-transplant. The biggest downside so far is that I have developed osteoporosis. The endocrinologist I went to, head of the Bone Density Department at MGH, feels that my bones went downhill when I was on a higher dose of prednisone post-transplant. I am still on prednisone but a lower dose. They are not ready to take me off of it entirely yet, I asked about it in October at my yearly post-transplant appointment.
Other than that, and recovering still from my femur fracture in July which was actually high on my femur so really a hip fracture. The fracture exacerbated my recurring bursitis and now I am having a tough time with it in both hips. I am planning to see a physiatrist to see if she can give me some help. I hate getting cortisone shots, I am sure they can't be good for you to get repeatedly.

@glinda Congratulations on being about to get rid of a cane. I am sure you will enjoy having independence from it. I hope things work out well when you go to Rochester.

@2011panc It sounds as if you have had a tough year and yet you are able to maintain your good humor. That's admirable. How did things work out on the workup for syncope?

@almula I hope you continue to fare well back in your own country. You don't mention where that is, is it a country where they do transplants so they will be able to do well post-transplant?

@wildcat It sounds as if things are great for you. When I get leg cramps it is almost invariably from not having had enough water that day. Have you considered that?

@jodeej I hope Tim continues to do well. I think of you very often and pray for you and Tim. I know this will be a difficult new journey for both of you.

@danab It sounds as if your troubles are behind you, I hope they stay that way in 2020.

@livertrex I hope all goes well with your upcoming artery surgery. I had not heard of that before but apparently @gaylea1 has. Please let us know how it went when you are up to it.
JK

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@contentandwell I don't know how to answer your question about the workup for syncope. It was determined to be not neurological. My tacrolimus levels needed readjusting. They had given me massive doses of steroids that I then needed to wean off. I had an extended UTI that needed to be treated first with IV antibiotics and then followed with oral tablets. My needed to lower my: blood pressure medicine, calcium, and thyroid medication. I needed to add magnesium. I needed to stop my prophylactic antibiotic.
Since then I have been having severe heartburn and have replaced omeprazole with two other medications. I have developed a "frozen shoulder" and am in rehab for that. I am often quite wobbly and lightheaded.
So I am still struggling and making the best of each day. Thankfully my husband is willing to cook for my dietary needs.
Soups on . . . gotta go!

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jeanne5009 | @jeanne5009 | Jan 4, 2020
In reply to @gaylea1 "@rosemarya I was in hospital 4 days after the artery operation. I came home on the..." + (show)
@gaylea1

@rosemarya I was in hospital 4 days after the artery operation. I came home on the 4th day. Not very long and I had a pile of stairs to navigate. Just trying to get comfortable (meaning cope with the pain and akwardness) while sitting or lying down was next to impossible. I cried a lot the next 3 weeks 😔

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Gaylea1.....seeing all you have been thru... I am sooo proud of you!

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terease | @terease | Jan 16, 2020
In reply to @contentandwell "@rosemarya Hi Rosemary. As I mentioned, I believe in a different thread, I too positively abhor..." + (show)
@contentandwell

@rosemarya Hi Rosemary. As I mentioned, I believe in a different thread, I too positively abhor the way sunscreen feels on my skin. As much as possible I just stay in the shade. We have been in the Caribbean a couple of times and both times I chose resorts where the accommodations were strung out along the beach, and there were palm trees. I only used sunscreen when I went in the water. I am fortunate because we have a very rustic cabin on a lake in Maine but we are on the west shore so from noon on the dock is in shade from all the tall pines. I never have to wear sunscreen up there.
JK

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I finally found Obagi for my face, which is very sensitive to chemicals. It is a physical, not chemical, sunscreen without that chalky look. Colored like makeup, it comes in warm and cool tones and Is used as you would make-up. Not gooey or oily at all. It is expensive, but lasts a long time. Plus I watch for sales. For my body, I prefer the powder aerosols. Again, not sticky. I try to stay out of the hot-sun hours, so don’t know how effective my choices would be in that situation.

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JK | @contentandwell | Jan 16, 2020

Thanks @terease We are thinking about heading somewhere warm and sunny in the next couple of months and if we do I will definitely look into this.
JK

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 16, 2020

A new member spotlight features one of our fellow Connect members - @mauraacro. You can read her interview to learn more about Maura and what inspired her to donate a kidney to a stranger.
– From the Kidney Donor's Perspective: Meet @mauraacro https://connect.mayoclinic.org/page/about-connect/newsfeed-post/from-the-kidney-donors-perspective-meet-mauraacro/

I encourage you to read her interview, and to give a shout out - by sending a like or a comment - so that the world will know that we believe in organ transplant! I look forward to joining you there.
and-
Did you know that last year there was a record number living donor transplants? According to UNOS there were almost 7400!

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gaylea1 | @gaylea1 | Feb 20, 2020

@rosemarya @contentandwell so...slammed again! So I had the skin cancer removed (They got it all). Now I have shingles and it hurts!! My ERCP to remove my metal stent is booked for March 16th (I'll have to phone to see if I can undergo this) but the past ERCPs ended up with me having pancreatitis. Now that's REALLY painfully. Being immunosuppressed is quite a battle. I hope I get a break soon. 😌

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joanaiken | @joanaiken | Feb 20, 2020

Sending positive thoughts and prayers......

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Feb 20, 2020
In reply to @gaylea1 "@rosemarya @contentandwell so...slammed again! So I had the skin cancer removed (They got it all). Now..." + (show)
@gaylea1

@rosemarya @contentandwell so...slammed again! So I had the skin cancer removed (They got it all). Now I have shingles and it hurts!! My ERCP to remove my metal stent is booked for March 16th (I'll have to phone to see if I can undergo this) but the past ERCPs ended up with me having pancreatitis. Now that's REALLY painfully. Being immunosuppressed is quite a battle. I hope I get a break soon. 😌

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@gaylea1, I honestly believe that you are the strongest person that I know! You have overcome every challenge that has been placed in front of you. And now this to deal with😪 It is sort of ironic that recently there have been a couple of other members who have mentioned having shingles post transplant.
As for the stent, do you know if you will need another one?
I am still here and will continue to pray with you - Remember that you are so far ahead of where you were a year ago.

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gaylea1 | @gaylea1 | Feb 20, 2020

@rosemarya your unrelenting support is so appreciated 💚 I don't know if it has to be replaced or if the bile duct is now open for business. I won't find out until the procedure. In the meantime, you know me, onwards and upwards. I'll get through this rough patch.

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