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?

@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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@contentandwell What sort of “water clothes” are you referring to? I’m sure you are referring to something other than a swim suit. Teresa

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@hopeful33250 Teresa, the site that was recommended by lcamino, Solumbra (http://www.sunprecautions.com/) has clothing like tops that can be worn when out in the sun for regular usage, like some nice, cool looking tops. I have some “rash guards” (not sure why they call them that) that are generally worn over your bathing suit for sun protection. As I mentioned those are available at Lands End, Speedo, Talbots and various other merchandisers. In my water class, inside of course this being New England, some of the women wear them because they find the pool to be a bit chilly. I figure once they are wet they can’t help much but I may be wrong. I had one rash guard before that I occasionally wore but this year I will need to be even more careful so I bought two more.
JK

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@contentandwell thanks, I’ll look into those websites. While I’ve never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@hopeful33250

@contentandwell thanks, I’ll look into those websites. While I’ve never had a transplant, I have very fair-skin and look for good ways to protect it from sun. I also get rashes from the chlorine in the pool, I go to a very nice 24/7 health club that always looks very clean, so it must be the chlorinated water that gets to me. Have you found any help for that? Thanks, Teresa

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@hopeful33250 Teresa, it sounds like your health club may be similar to mine, The Executive Health and Sports Club in Manchester — they are constantly cleaning and checking the water in the hot tubs and the pools. The main thing I do now, because I have never gotten a rash but I did itch, is to go right into the showers and soap up in there. It helps. One day I waited until I got home and showered here and my hands still smelled of chlorine after it!

Regarding the websites, I have not bought a rash guard at Talbot’s but most or my wardrobe comes from there. Get on their email list to be notified when they have sales because I NEVER buy when things are not on sale. I don’t often buy from Speedo, but Lands End has good bathing suits and they too run sales a lot. I think both of those sites are running sales right now.
JK

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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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@contentandwell – Leggings (one with a skirt) and rash guards. I personally am intrigued by the leggings because they would avoid sunscreen on the legs. The drawback I see is that they are black and I know from past experience with a black rash guard that they are very hot. After typing that It should not be a problem if you are in the shade or under an umbrella most of the time but you could swim in an outdoor pool, lake, or ocean without worries (100 SPF). I have gotten the worst burns while swimming even when using sunscreen.

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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 I think I will avoid and wear the dreaded sunscreen. YUCK Leggings do sound very hot in the warm months, and of course black would be particularly hot. I suppose they do make them in lighter colors but they still sound hot. Of course dark colors like black absorb the sun whereas light colors sort of reflect it, if I recall that correctly.
The lake we spend time at has shade in the afternoon on our side so it works well for me, always has since I have always burned very easily. I only go out on the boat when our son is around and waterskiing. I love to watch him.
I really do hate sunscreen though, I hate the way it feels on my skin.
JK

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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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I just received my gift of life. Had my kidney transplant via live donor, on April 17th of this year. So, I am home for a week now. Everything is going as well as you could hope for, but I am still trying to shed the fluid that was loaded into me for the transplant. Who knew they could put THAT much fluid into you so quickly.
Hard to tell about the weight gain, as I am still shedding fluid weight. I do know that my appetite is back in force, so limiting calories is crucial right now.

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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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@doogie02, This is wonderful news to hear! Thank you, Thank you, Thank you, so very much for sharing this joyful event with us.
I welcome you to Connect. It is always an honor and a privilege for me to meet a new. transplant recipient

I will send you a more complete reply, later today, after I get back from errands. Hubby is waiting in the car for me – but this acknowledgement just could not wait.

Blessings to you and your donor.
Rosemary

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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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@doogie02, I want to welcome you to Connect. We are here to share from our experiences, and to ask questions, and to find answers. We also are able to provide support and encouragement for others who are experiencing similar health related issues. I want to personally invite you to look at some of out other transplant discussions and to consider entering some of the forums. By sharing from your own experiences you will be able to offer hope to others who are waiting for their own gift of life organ donation.

Right now, though, your first and primary job is to take care of you, and be sure that you do not over-do-it too quickly.

Yes, It is amazing how much fluid the body can hold! Were you holding fluids with edema prior to transplant? I was. And I remember that at 3 weeks, I still had some swelling, especially legs. Eventually as you get more mobile and walking this will dissipate.
Hungry- and I bet everything tastes so good, too! My docs told me to enjoy, but not to overdo it. However, I needed to actually gain weight after my transplant. That has never happened any other time in my 68 year life!

Congratulations on your successful kidney transplant! And blessings to your donor.
.

When you feel up to it, Please consider posting in the “Celebrate Your Transplant” forum.
https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/

I look forward to hearing more from you
Rosemary
Liver/Kidney – 2009

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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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@doogie02 Congratulations on your transplant! Sometimes “life is good” and I have found that to be true after liver transplant. The inconveniences are a small price to pay.
I was not loaded with water artificially but had terrible fluid retention (I gained about 35 pounds in a few weeks) and it took a while for that to finally go down, but go down it did thankfully.
I agree, resisting yummy things is difficult, I am something of a foodie and love to cook so it’s been a struggle but I have managed to lose weight, before my transplant and more after. I have mentioned in other posts that I used myfitnesspal.com and found it tremendously helpful. That along a fitness monitor kept me going. You are only fooling yourself if you are not honest with your food on myfitnesspal and I find if I do not exercise I gain weight. Myfitnesspal connects up with my fitness monitor and gives me extra calories depending on how active I have been.
Off to the pool at my health club now.
JK

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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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@rosemarya Gee Rosemary, I wish someone would tell me to gain weight! I am actually at the lowest I have been at since getting pregnant 37 years ago. I just say it took awhile to shed the “baby fat”. 😉
JK

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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, It only happened that one time!
Before transplant, the nausea, lack of sense of taste, plus compounded mess of two failing organs turned me into ski and bones inside a water balloon body. After surgery, with the ascites bone, I had to sit on a pillow. A hard chair actually hurt because there was nothing padding my bones – that is definitely not the situation now!
BTW after reading all of the previous posts about exercising and weight issues, I got motivated. Hubby and I started going to gym for exercise – and I purchased capris and shorts in a smaller size last night! To be fair, I was in that ‘in between’ stage, and I got to the lower end, finally:-)
I say thanks to you and all of my friends here on Connect for the support and encouragement! And I have been more carefully adhering to the food serving and nutrition guidelines as recommended by Mayo Clinic Diet.
Have a happy day
Rosemary

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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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@rosemarya that’s great! Nothing like being able to go down a size! Now that I have a whole new wardrobe a couple of sizes smaller there is no way I can gain weight back! I was having trouble getting motivated and cheating a bit and then got a lower digestive problem which caused a drop of two pounds so that was incentive. For me, losing weight is an incentive to keep it going.
I never lost my appetite except for a few weeks after transplant, after cooking dinner I didn’t feel like eating it. I would put it aside and after an hour I could eat it.
I have a bone problem too in my back. I broke my back (sounds more serious than it was really) and I have a vertabra protruding somewhat which hurts more now since there is less padding. I hate sitting in a hard back chair.
JK

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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, I want to check in with you. First, How are you feeling? I hope all is going on a normal course for you.
I since you have inspired me to start exercising and to get-moving, I thought of you, How are you doing with the plantar fasciitis?
Rosemary

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc, How are you doing?
I have been dying of curiosity! Are you getting near your shopping spree?
I am inspired by all of the healthful discussion here, and have recently become more serious about exercise and eating. Thanks for the inspiration:-)
Hugs,
Rosemary

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