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This and That and Talk - My Transplant

Transplants | Last Active: Jun 7 8:31am | Replies (1672)

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@rosemarya

If you are new on Connect or if you have been hesitant to jump into a discussion, I look forward to meeting you here. The title of this discussion is - "This and That and Talk" - So if you have something on your mind and don't know where to post it - This is it 😀

2019 is soon to become 2020. And the discussions here have been full of so many interesting transplant related happenings and ideas. It has been a while since I have heard from some of you. - @wildcat, @rodney9999,, @jolinda, @luckonetj, @ca426, @cmael, @gaylea1, @jodeej, @charicen, @jeanne5009, @gingerw, @2011panc, @contentandwell, @glinda, @danab, @threerrr3, @almula, @mnemeth318, @des46893, (Let me know if I skipped you, I apologize) )
How are you doing since you last posted here? What is going on in your transplant journey now? What do you look forward to in 2020?

I'll go first to get things started.
For those who don't know me, I received a simultaneous liver and kidney transplant in April 2009 due to Primary Sclerosing Cholangitis. This year I was blessed to celebrate my 10th year since my transplant. I am doing a happy dance because I had my final routine protocol kidney biopsy. I will have, hopefully some extra time during my next annual evaluation to do little sightseeing or shopping!!

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Replies to "If you are new on Connect or if you have been hesitant to jump into a..."

Hi Rosemary,
I am doing good I just graduated from physical therapy on Wednesday of this week and am working on getting rid of the cane that I use slow process but getting better and stronger every day next month I go to Rochester MN for my 9 year post transplant check-up and right heart cath and angiogram which I only have those every 2 years now and I am hoping to be able to do some traveling this coming summer to visit family I have been pretty well other then one time this year when I had to have antibiotics for a little over a month it took me having to go to Rochester MN in October to get me the right antibiotics to help me get better I had a severe UTI so when the other 2 antibiotics didn't work my team told me to come see them and the infectious disease doctor so glad I did as they diagnosed it and gave me the antibiotic to get rid of it I work out at the YMCA twice a week and walk as much as possible to keep going strength from the accident but it is and will still be a slow process of getting stronger again I would like to wish you a merry Christmas and happy New year
@glinda

@rosemarya , I have had a moderately tough year. Next month will be the 9th anniversary of my pancreas transplant. This year I have been blacking out and falling, very weak and shaky, hospitalized for a workup on syncope, many UTI's, and many medication changes. So life is slow in my house and I am grateful for my good caregiver husband. My mother will be 96 next month and her age is wearing on her, so it is taxing on me to provide the amount of time and comfort for her that I would like. Fortunately she is well taken care of in her nursing home. As always, I do what I can and stop when I can't. Happy Holidays to everyone, and Best Wishes for a Good New Year.

Hi Rosemary

Christmas Greetings from Scotland! It was kind of you to think of me. As I begin my sixth year post transplant I can honestly say that I have never felt better. Apart from leg cramps sometimes, i have no side effects whatsoever and I live a full and happy life Thanks to all the help and advice I received from fellow Connect members, I have no concerns about the impending changes to my meds as Scotland moves all its transplant patients from Prograf to the generic Adaport. Even more importantly, it will save our Nationalsalth Service hundreds of thousands of pounds which have been ring fenced to go straight back to transplant services.

Wishing you all a very Happy Christmas and health and happiness in the New Year. I add a very special thanks to all those families who have allowed transplants to go ahead after the death of a loved one; we owe you our lives and you have our eternal gratitude.

@rosemarya Merry Christmas and Happy Holidays to all! Tim is doing well post transplant. His one year checkup in July showed his liver is doing great. Unfortunately, in October he was diagnosed with early onset Alzheimers. He is in the early stages so he is able to be home alone and can still drive.
2020 will bring many changes with this new journey we are on. I am very thankful for our family and friends.
Many blessings to all of you,
JoDee

@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