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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@lcamino That is interesting. I didn’t know about hidden milk and lactose in medications. Thanks for that info. Teresa

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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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Teresa, I had to smile when I read your reply because I don’t ever really ‘want’ to exercise! But I do enjoy seeing the benefits and I feel good afterwards. And, yes, it is nice to be able to go anytime, if I chose to do so. 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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@rosemarya I understand completely! Teresa

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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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@hopeful33250 Thank you, Teresa. That’s what friends are for! 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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@contentandwell – Well I’m just “glad” I’m in kidney failure and not liver failure but this whole conversation just makes me pause and be in awe with what our doctors know. There is so much that is unknown (probably always will be) but there is so much that is known. My grandfather died of PKD (kidney disease I have) at 51 because they did not know dye contrast imaging damages kidneys. My Dad lived to be 72, and hopefully I’ll live longer although I’m needing a transplant 15 years earlier than my Dad so I’ll just have to leave it in God’s hands.

Off to Mayo tomorrow…

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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, Lynn, you are in good hands. 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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@rosemarya – Believe me I know. I just wish I had gotten connected years ago, gotten in the study earlier and most likely I would not be needing a transplant for another 5-10 years. But, that is not the case and I’m so grateful that my husband is supportive and willing accepts the expense to travel monthly to the Mayo, have them do the transplant etc. It is more complicated (local hospital 10 minutes away has a transplant center but their results are not great and a nurse even told me to stay away) so I’m blessed that I’m able to be seen by Dr. Torres and the transplant team soon. Just a little emotional and nerve racking.

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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, It does get overwhelming with so many uncertainties ahead. Remember that you are not alone. You are blessed to have your family, medical team, and your faith. These are your strength.
Your current thinking, and questioning, and fears, and emotions are where mine were, too.
I sincerely hope that your visit goes well for you. We can talk more when you get home.
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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@rosemarya That’s surprising that you were constantly monitored for ammonia. My PCP had started doing that but MGH said it is not a reliable indicator, some people have high counts and do not get HE and some people with low ones do. I have read that on websites also. I would have liked to have been monitored because the bad episodes I had were definitely when my ammonia count was high, and if monitored I could have taken more of the dreaded lactulose to prevent an episode.
You really were fortunate. When they took your liver out and dissected how bad was it? Despite the tests not indicating mine being horrible it was, it was almost totally gone.
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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@rosemarya it really is amazing. Right up until the last six weeks I was functioning almost normally, just taking naps daily, but I went to my club almost every day, made dinner, shopped, the whole kaboodle. I was never sick except from the lactulose and that would pass within a couple of hours, and as I said eating eggs made it much worse.
Where were you being treated prior to Mayo?
I think I mentioned at one point that the only time food did not appeal to me was for a few weeks after transplant and then it was not nausea, just no hunger. I would make dinner, take a few bites and not be able to eat more but a couple of hours later I would re-warm dinner and eat it.
I have NEVER had to gain weight. A few people think I have lost too much but that’s just because they are used to seeing me heavier. I know losing weight has taken a toll on my face though.
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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@rosemarya, having both would definitely complicate matters. I too have to be careful of sodium, they say no more than 2000 mg a day but I try to keep it under 1500. If I don’t I can feel the fluid retention. My bp has also increased. I know the meds are responsible for a lot, thankfully they will hopefully keep us rejection-free but their side-effects can be a real nuisance.
I am still seeing my transplant team every three months, it’s only been a little over 9 months. I have an appointment on Wednesday.
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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@hopeful33250 There is a club on the main road basically within walking distance from our home that is 24/7 but I need the pool and they do not have one. Plus I think I would be sort of creeped-out being alone there.
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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@hopeful33250 I think these medigap plans are generally the same but I do not think mine covers that. I may check on that. Mine is run by Bankers Life, I don’t know if that is national or regional.
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 Lynn, you are so right, the doctors know a lot but certainly not everything. I became so conscious of this when I went for so long without a diagnosis. At the same time my nephew was having brain problems. It was very scary. He’s in his 40s with two little girls. My sister was so distraught. It took a long time to find out what the problem but finally after numerous doctors someone figured it out and he had brain surgery and has been great ever since, thank God.
Between his experience and mine I figure that is why they call medicine a “practice”.
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 We can only be so thankful that we have such supportive families. It must have been difficult to make the choice to travel, but it is your life. With me the choice was difficult because I had a wonderful hospital and of course preferred to be there, but it looked like I could get transplanted sooner at Mayo.
I hope all goes well with your appointment. Please let us know how it went.
JK

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