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?

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@rosemarya I just recently discovered when I asked about an error on my record of whom was listed as my surgeon that he was the primary surgeon but two other transplant surgeons were in there too! No wonder it costs so much. I had met one of the other surgeons during the initial intro day and she visited me two times but I had no idea she was in there also.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@rosemarya I guess this is something I will be hearing about then. Another doctor visit, just what I want. Next week I have to see a pulmonary doctor to hear the results of an ECHO I had on Monday. When last done I was bordering on pulmonary hypertension. I also have to see my medical oncologist following the MRI I had yesterday; they are following that because of the malignant lesions I had. Malignant lesions sounds so much less frightening than cancer.
JK

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@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@2011panc Since I hate bugs I don’t enjoy the outdoors much, I love sitting out or napping on our screened in porch though. To me that’s heaven. I did it a lot last summer.
JK

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@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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Because we are likely to get skin cancer because of all the meds we take .?!

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@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@contentandwell and @lcamino I agree with the water shoes! I have Parkinson’s and I’m not always “sure-footed”. However, the water shoes are great and give me confidence and safety when I walk in a pool. During the summer I leave them in the car and they dry out quite quickly from the sun heating up the car (my car is always parked outside). Therefore they stay dry and don’t get musty. However, if your car is protected from the sun, letting the shoes dry on a porch or deck where the sun hits them will work nicely as well. Teresa

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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I recently picked up a brochure on sun protection while at Mayo. It suggested to use sports sunscreen to avoid it running into the eyes and burning. Has anybody found a sport sunscreen that is not greasy?
Rosemary

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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@rosemarya Hi Rosemary, I’ve read that Neutrogena Ultra Sheer Dry-Touch Sunscreen, SPF 100 is supposed to work well, but I’ve never tried it. The words, “Sheer Dry-Touch” sound good and it has a high SPF. Teresa

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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@hopeful33250, Thank you, Teresa, I will look into this one. I currently have several Neutrogena sun protection products, and I really like them. I will look into this particular one.
Once I asked one of our high school football coaches what product he used because he has a very fair complexion and red hair. It worked, but so gooey. My problem is that when I sweat it runs into my eyes and burns like crazy.
Rosemary

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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@rosemarya Up until now I have done a good job of avoiding sunscreens but I have in the past used some from neutrogena. I recently was in a Rite Aid and they had that brand in SPF 100 and the one meant for the fact in SPF 110! I would imagine if it is specifically for the face it would be less apt to cause eye-tearing.
JK

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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Hi Rosemary,I also use Neutrogena (Ultra Sheer Dry Touch Sunscreen SPF 55.  Also, my foundation has some light sunscreen.  The sunscreen is really fast absorbing and doesn’t run.  I live in Florida so the fast absorbing is very important. I do wear short sleeves and a light long sleeve blouses as a cover and Capri pants or slacks.  There are sun reflecting shirts/hats that you can buy at Sports Stores or I guess online.  Skin cancer is a problem for all transplants so it is an important battle.

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@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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@eileenheart Thanks for joining the conversation and giving us a first-hand review of the product! Teresa

REPLY
@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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A comment bout sunscreen. I have not had a transplant yet but I’m trying to learn what to expect before and following. I’ve been noting the sunscreen lessons, especially since I’m fair skinned, burn easily and freckled. Interestingly, I just received in the mail a catalog I have not received in years. I highly recommend you go to http://www.Solumbra.com to find clothing that is 100+ SPF. The clothing is very expensive but when we are talking about our avoiding skin cancer maybe some things should go on our birthday and Christmas lists. If anything I would take a peek at their hats, most which pack flat, and rash guards and leggings to swim in so you can enjoy the water in safety. I can’t emphasize enough that it is very expensive but I also think we are all worth the splurge, for our own safety.

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino, Thank you for sharing this information.
You are right, sun protective clothing can be very expensive. I look for the clearance sales and end of season items. I have a collection of long sleeved t-shirts that I like for casual and for hiking. Mine are breathable and moisture wicking, and actually comfortable.
After transplant, we have to take the antirejection medications to prevent organ rejection by reducing our immune system. That makes us susceptible to other things. You will learn that prevention and early detection, and perhaps treatment, are the best defense.
Rosemary

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@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

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@lcamino Thanks, the clothes there are a bit pricey as you said, for sure. I have bought rash guards for sun protection SPF 50. I got one at Lands End and one at Speedo. I really like some of the tops on the Solumbra site though, I looked at “casual”. The ones I have purchased are good for in the water too which is important to me.
JK

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