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.

@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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@lcamino Well, I changed doctors. I really wanted a second opinion so I headed in the opposite direction to Concord, to a podiatrist that was recommended by a couple of people and who also does the laser treatment. He confirmed that it was fungal and thought it could possibly be starting on the nail on my big toe on my right foot also. Their deal is $499 for four treatments! A saving of $300. For that price they will do one to four toes so they are doing the other big toe too, to be on the safe side. I liked the doctor professionally but he and the office personnel were as cold as ice. I suppose they never really get to know patients because they come in for something like this and are gone.
Also, the place in Nashua has spray for your shoes and a cream to bring home and treat it with in between treatments. In Concord I asked them about that and they told me to spray my shoes with lysol and to use lamosil cream, around the nail, not on it. I just checked lamosil online and it says too to not put it on the nail. I wonder why.
They had an opening for the laser treatment when I was there so I just had to wait a little while and they did my first treatment.
JK

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@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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Hi @davidgenebarnes. It's a pleasure to have a new person in our conversation! Although I'm sorry that your health is not optimal I'm confident you will find compassion and support in this group. I will be getting a kidney transplant in the next year so I do not have the answers or insight into your particular situation but I am confident you will get plenty of assistance at the Mayo Clinic. If you have not had your appointment yet, and no one on this chat has responded to your questions Yet (I'm behind in with my emails and reading all the new posts), the Mayo Clinic website is where I often turn for basic medical answers. You can look up your condition by name and/or symptoms and the explanations are clear and concise with bold words with links to further information if you need it. I have found this source of information a way to help me create a list of questions for my doctor, eliminate unnecessary worry, and sometimes take questions off my list. Hang in there, you will be in good hands at the Mayo Clinic!

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@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 - I'm sure as you look to the future it might seem bleak but try to take each day, even each hour, at a time. I know that is easier said than done and I am not feeling sick like you, but I do know others who have had similar experiences and are doing well now. It is hard to carry on when you can't see the light at the end of the tunnel but it sounds like you are doing the right things to take care of yourself. I do know that it is humbling to have to accept help but that is part of life. I have had plenty of times in my life where all I could do was "take" from others. I needed physical and emotional support but eventually I have been able to give back as my life has settled down. I'm preparing for a time of taking again as I get a kidney transplant in the next year but I am confident that there will be a time for me to give back in the future. Please keep plugging along knowing that what you are able to do is just fine because it is the best that you can do at the moment.

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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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@ contentandwell - So wise! Thanks for reminding us all to keep our transplant team in the loop with life's medical mishaps.

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@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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@lcamino Lynn, I too go often to the Mayo as a reliable site for info. When I was checking some Medicare coverages the Mayo popped up and even had info about what I was looking for! I was wondering about the difference between Wellness visits and physical exams. Mayo seemed to support wellness visits saying that if additional tests were necessary they could be billed separately and paid at 80%. My PCP will only do physicals. He has some excuse for that but it would seem to me that the biggest reason is that since Medicare does not pay the full amount when he does physicals the patient has to pay all of it. 🙁
JK

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@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 - Thanks for sharing at such a difficult time in your life. So many men do not have the courage to reach out as you have so give yourself a pat on the back! I'm glad you found this source for an outlet and information. I'm sure you were feeling at the end of your rope when you offered your wife a divorce but she is there to be your support. I'm sure she wants to take away your pain and the best way she can do that is for you to allow her to help you. Accepting help is humbling but your journey will be harder if you push people away. I encourage you to be each others sounding boards because good and honest communication is what gets couples through the worst of stressors (and I think your health situation ranks quite high on the list of life's stressors).

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Thank you Lynn. I am finding comfort in sharing my thoughts and fears on this site (blog ?). I am picking my Wife up from the airport in a few hours, then we spend a week at Mayo going through our classes. My health seems to change by the hour, and I try not to always tell her about the mental mess it makes in my mind. Somehow, my God blessed me with her. I have always been a loner, going to through several surgeries by myself. However, this one is different and my Wife has been very patient with me.
I wish you the best this holiday weekend.
Dave

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@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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@contentandwell - I'm afraid I can't give you any suggestions on that.

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@davebarnes - I'm glad the chat is giving you some comfort. As much as I tell you to communicate with your wife I don't want to sound like I'm perfect. I had a recent ER visit for heart palpitations (all is well) and my husband was out of town running an important business meeting. I decided not to inform him of being in the ER until I had some answers and he was not thrilled when he looked for me on Find Friends app to learn that I was at the hospital. I think if I thought I had had a heart attack I would have informed him but I am aware that my health weighs heavily on his heart so I was trying not to unnecessarily stress him out. Your week at the Mayo Clinic should ensure that you are both fully aware of all aspects of your upcoming journey TOGETHER which it sounds like she is ready and willing to do with you. I'm so pleased to hear you will have the support you need and deserve at this time. Taking care of yourself, and keeping her in the loop, is probably the best thing you can do to let your wife know you love and appreciate her.

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@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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@contentandwell - Thanks for encouraging me to get back to exercising more regularly. I have been lax lately, only exercising once or twice a week. I need to make it more of a priority again so thanks for giving me reason to get back on track.

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