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?

@gingerw

@dcwilkie Harmful rays can still penetrate long sleeved shirts. My husband is a kidney recipient, and I am always reminding him about sunscreen. I have had malignant myeloma so sunscreen is part of my daily regimen.
Ginger

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Some clothing is specifically made to block UV rays. Look for clothing that has a UPF rating of 50 or more.

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@estrada53

At my last posttx check up, one of my appointments was with a dermatologist. I was informed that transplant recipients have 60 to 240% higher chance of cancer. While I sometimes don't trust statistics!, this is about my health and future, so every precaution helps.

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@estrada53 6 months post transplant I developed a small growth on my arm. I waited and waited but it grew and grew. I was finally referred to a dermatologist who confirmed a cancerous growth. I had never had anything like this before. I was sent to a plastic surgeon and the tumor was surgically removed successfully. They got it all and it hadn't spread. Now I will see the dermatologist every 6 months. I stay out of the sun but I still developed that tumor. Hopefully it was a one time thing.

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@dcwilkie

I'm with you…much rather wear long sleeves than sunscreen! I often wear a seasonally appropriate tank or t-shirt with a loose long sleeved shirt open over it. Arms and neck are protected well without sunscreen.

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@dcwilkie, Welcome to Connect. I am happy that you have joined the conversation. In addition to the clothing for protection, I also use a wide brimmed hat and sunscreen or sunscreen moisturizer on my face and neck.

Dcwilkie, What brought you to this conversation related to sun protection in mid winter?

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@rosemarya

@dcwilkie, Welcome to Connect. I am happy that you have joined the conversation. In addition to the clothing for protection, I also use a wide brimmed hat and sunscreen or sunscreen moisturizer on my face and neck.

Dcwilkie, What brought you to this conversation related to sun protection in mid winter?

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I also wear a Tilly hat and moisturizer with SPF on my face. Usually have garden gloves protecting my hands.

As the new year approaches, I'm dreaming of my Michigan garden and all the beautiful blooms!

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@dcwilkie

I also wear a Tilly hat and moisturizer with SPF on my face. Usually have garden gloves protecting my hands.

As the new year approaches, I'm dreaming of my Michigan garden and all the beautiful blooms!

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@dcwilkie, Do you have tulips? In central Kentucky there are a lot of springtime tours to Michigan for the tulips! I've not had the opportunity to enjoy one of those tours yet.
I like to wear the UV protection fabrics that are quick dry moisture wicking when hiking and when I am in the yard. With or without a transplant, I commend you for the skin safety awareness.

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@rosemarya

I am on the road again today, and headed for my granddaughter's 7th birthday party! She is our only grandchild and is the extra special blessings that I have received since my transplant in '09.

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Now that's good medicine!

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@rosemarya

@dcwilkie, Do you have tulips? In central Kentucky there are a lot of springtime tours to Michigan for the tulips! I've not had the opportunity to enjoy one of those tours yet.
I like to wear the UV protection fabrics that are quick dry moisture wicking when hiking and when I am in the yard. With or without a transplant, I commend you for the skin safety awareness.

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I do have tulips, but not the grand meadows like they have in the Holland, Michigan area. We go to their tulip festival most springs. The flowers are incredible, and it's only about a two hour drive for us.

I do have some shirts with the UV protecting fabric, but I find my husband's old dress shirts to be more comfortable in the garden!

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@dcwilkie

I do have tulips, but not the grand meadows like they have in the Holland, Michigan area. We go to their tulip festival most springs. The flowers are incredible, and it's only about a two hour drive for us.

I do have some shirts with the UV protecting fabric, but I find my husband's old dress shirts to be more comfortable in the garden!

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@dcwilkie, I want you to enjoy the sun and the gardening. Here is some me information from thr American Cancer Association-
How Do I Protect Myself from UV Rays –
https://www.cancer.org/cancer/skin-cancer/prevention-and-early-detection/uv-protection.html
@tsreever, @des46893, @gaylea1, @estrada53 -I want to share this article with you, too.

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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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@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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my country is Kuwait and they started doing transplants in 2018. Hope I can find a doctor for following up.

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@livertrex, I want to check in with you. How are you getting along with recovery from surgery? When will you know if this has solved the heptic artery stenosis?

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Rosemary,
I am in a lot of pain compared to the original transplant. They were able to cut through the scar tissue and find the artery. They cut through the artery, removed the kinked section and attached back to straighten it out. I have had two ultrasounds and both show the artery is completely open. I think I will stay around a few more days in Phoenix before heading back to Colorado to be on the safe side.

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@livertrex

Rosemary,
I am in a lot of pain compared to the original transplant. They were able to cut through the scar tissue and find the artery. They cut through the artery, removed the kinked section and attached back to straighten it out. I have had two ultrasounds and both show the artery is completely open. I think I will stay around a few more days in Phoenix before heading back to Colorado to be on the safe side.

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@livertrex did they staple you back up over the original incision? I found this the most uncomfortable part and the pain at times terrible but it subsides. If they re-stapled you when do you get those removed? That's when things start to get better. (I found anyway).

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@gaylea1

@livertrex did they staple you back up over the original incision? I found this the most uncomfortable part and the pain at times terrible but it subsides. If they re-stapled you when do you get those removed? That's when things start to get better. (I found anyway).

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Yes they stapled back over the original incision. They said they would take staples out 3 weeks after surgery.

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@livertrex

Yes they stapled back over the original incision. They said they would take staples out 3 weeks after surgery.

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@livertrex I thought they might have done this. Go slow the next three weeks. Be easy on yourself…you'll most likely find it difficult to move around. Contact me if you have any questions regarding my experience.

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