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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 27, 2017
In reply to @davidgenebarnes "Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in..." + (show)
@davidgenebarnes

Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in for my evaluation at Phoenix Mayo. This condition plays with both my body and mind. I am extremely week, lost 50 pounds and am frequently depressed. I'm told I have a MELD of 24. Is that a good number for a quicker transplant? Is it a bad number for a successful transplant? Looking for someone to talk too

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@davidgenebarnes Let me add my welcome to Mayo Connect! I can certainly understand how you must feel ready for this transplant experience, losing 50 pounds must have made quite a change in your life. I know that you will receive lots of responses from our other transplant Members including @contentandwell. If you can share more of your story, I would be interested to know how long you have had the liver problem. Did it come on suddenly from a viral infection or was it a long-standing chronic problem? Teresa

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 27, 2017
In reply to @davidgenebarnes "Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in..." + (show)
@davidgenebarnes

Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in for my evaluation at Phoenix Mayo. This condition plays with both my body and mind. I am extremely week, lost 50 pounds and am frequently depressed. I'm told I have a MELD of 24. Is that a good number for a quicker transplant? Is it a bad number for a successful transplant? Looking for someone to talk too

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@davebarnes, Your wife sounds like a lovely person. Rosemary

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davidgenebarnes | @davidgenebarnes | Jun 27, 2017
In reply to @davidgenebarnes "Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in..." + (show)
@davidgenebarnes

Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in for my evaluation at Phoenix Mayo. This condition plays with both my body and mind. I am extremely week, lost 50 pounds and am frequently depressed. I'm told I have a MELD of 24. Is that a good number for a quicker transplant? Is it a bad number for a successful transplant? Looking for someone to talk too

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Rosemary, thanks again. I am going to save my questions for next week. 🙂

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davidgenebarnes | @davidgenebarnes | Jun 27, 2017

Yes, she is. My God really blessed me with her.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 27, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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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@davebarnes, liver disease does mess with the weight. I lost weight, and like you, could not walk very far, then I developed ascites and needed a XL instead of a 10Petite. Rosemary

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Rosemary, Volunteer Mentor | @rosemarya | Jun 27, 2017

@davebarnes, In addition to being blessed, you are indeed a wise man! I think that by saving your questions for next week that you will get the answers that apply to specifically to you and your condition. Mayo is awesome for recognizing our unique situations and working to 'tailor' our needs and treatment.
Rosemary
PS I could not have endured this without my wonderful husband at my side.

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 27, 2017
In reply to @hopeful33250 "@contentandwell thanks, I'll look into those websites. While I've never had a transplant, I have very..." + (show)
@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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@contentandwell I'm glad to hear that! Teresa

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JK | @contentandwell | Jun 27, 2017
In reply to @davidgenebarnes "Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in..." + (show)
@davidgenebarnes

Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in for my evaluation at Phoenix Mayo. This condition plays with both my body and mind. I am extremely week, lost 50 pounds and am frequently depressed. I'm told I have a MELD of 24. Is that a good number for a quicker transplant? Is it a bad number for a successful transplant? Looking for someone to talk too

Jump to this post

@davebarnes Dave, you are probably type O if it is common. You are smart to stay in AZ, in CA transplants take place at a higher MELD. I believe all of the Mayo centers are top rate too.
Things will get better when you have the support of your wife, it sounds like she is very understanding about all of this. That can be really important. My husband was very good through all of this, sometimes too good not wanting me to do anything and I am the type of person who really likes to have her independence. It took awhile after transplant for him to back off but better that than not being helpful at all.
Once your wife arrives do try to get exercise. Really, the more you able to do the better off you will be. I am sure that is why my recovery went so well, despite the fact that in the last six weeks I was miserable and did almost nothing except eat and nap. If you can get exercise you will be so happy that you did after the transplant because it will make recovery much easier.
JK

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JK | @contentandwell | Jun 27, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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

Jump to this post

@rosemarya I did not lose weight because of my condition but due to hard work to lose it! Then when the ascites and edema started I really ballooned up.
We went to Italy in the spring of 2014 and my feet got HUGE. I couldn't wear any of the shoes I had brought with me, especially after a number of days and had to purchase cheap beach sandals to wear around. Fortunately at that point we were at a resort town in Sicily so those worked out OK and we only did walking when we went to town. My doctor knew of that problem but was perplexed by it even though my feet and lower legs continued to be obviously retaining fluid. At that point I had not been diagnosed as having cirrhosis so I guess it would be a tough thing to know though.
JK

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davidgenebarnes | @davidgenebarnes | Jun 28, 2017
In reply to @davidgenebarnes "Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in..." + (show)
@davidgenebarnes

Hello, I am a 52 year old male, liver transplant hopeful. Next week I go in for my evaluation at Phoenix Mayo. This condition plays with both my body and mind. I am extremely week, lost 50 pounds and am frequently depressed. I'm told I have a MELD of 24. Is that a good number for a quicker transplant? Is it a bad number for a successful transplant? Looking for someone to talk too

Jump to this post

Thank you for your kind words. I am headed to Mayo ER for what I am sure will be a paracentesis. Have a great day

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