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.

@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.

Jump to this post

@rosemarya II'm sure you must make your transplant team very happy. They must be proud of the remarkable progress you have made.
The Great Smoky Mts will be a great place to hike! So lovely. While exercise-induced asthma can be a distraction if you hike at your own pace and use your inhaler and meds you should do fine. I will thinking and praying for you! 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.

Jump to this post

@contentandwell, The machine that you are describing sounds like one that I used once in a PT setting. That might work for you. If you try it, take it easy. The one in the gym is like a monstrous reversed escalator, and the steps are 8 or 10 inches high. The trainer directed me to it as a way to strengthen my legs for uphill hiking. It is the machine that most people avoid!
Rosemary

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.

Jump to this post

@rosemarya, the machine I am referring to is like steps that you "climb" up but the steps move. Now that I think of it I guess you do have to lift your feet but I suspect the impact is not as hard as in running or walking. They are extremely large/tall. The downstairs gym in my facility has them next to the windows that look out on the hallway. When I go to the club later today I will try to get a picture of one. I generally go to the upstairs gym -- a lot more older people like myself are up there. People who lift and do really serious machines use the downstairs one -- where my son goes when he is on visiting.
JK

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.

Jump to this post

@contentandwell - I recently learned at my local lab that the labs I get to monitor our kidney function are high cost labs and keep this tiny lab with one phlebotomist in business. It's hard to believe a few vials of blood and urine sample bring in that much money. I guess it's more complex than a CBC. I'm so thankful that I have good insurance and am not aware of the cost of the labs. I too have become friendly with my phlebotomist. I'm not sure if I mentioned that at my last lab she offered to get tested to be a living donor for me. What a great visit that was!

Oh, that reminds me that I should update you on my Mayo trip. My recent local nephrologist labs had me at a GFR of 20 and my ER visit had me at a GFR of 19 but in May my GFR with Mayo labs and their calculations was 22 so no transplant team visit yet.

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.

Jump to this post

@ contentandwell - Can I be so bold as to ask when and why you stopped seeing your transplant team? I'm going to be getting my transplant at Mayo and I don't live close by the hospital so I'm just curious how and when the transition happens.

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.

Jump to this post

@contentandwell - I agree, changing doctors is daunting, especially when you have major health issues but sometimes it is needed. Do your best to ask around for some referrals and find out why people like their doctor not just who they go to. Would your transplant team be able to refer you to anyone?

Love the picture. How do you post a picture?

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.

Jump to this post

@lcamino Lynn, my lab is a bit busier than yours. I often have to wait because there will be one or two people ahead of me. I can only imagine what the cost is though to transport just my blood to MA -- just mine generally because MGH has the order in as "stat". They want it sent to the lab's testing facility in the morning, generally it is before 9:00.
My phlebotomist is really nice too and she recently gave me the card for her church and thought I might enjoy going there! She said afterwards we could get coffee or something. I doubt I will take her up on it because if I went once and didn't like it, it would be hard to explain why I wasn't going again.
Regarding your GFR, I was unfamiliar with it so I googled. Your range, according to the info I got, suggests "Severe loss of kidney function". What GFR do they generally transplant at? As I mentioned before somewhere, my niece's husband is on very frequent dialysis and waiting for a transplant. They just moved from Wisconsin to the St. Louis area, I hope something happens for him soon, he is such a truly great guy.
JK

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.

Jump to this post

@lcamino Lynn, at MGH you are a patient in the Hepatology department prior to transplant and then after transplant you are a patient of the Transplant area. I had an appointment coming up with my hepatologist when I received my transplant, when she came to visit me my husband kidded that I would have to cancel my next appointment and she said I would no longer be seeing her! It was then that I discovered that my association with that department was over. I really liked my hepatologist a lot too, but I was not upset at not having to see her NP anymore. Every time I saw her I came away feeling a bit depressed. I am sure each transplant center has their own way of doing things, I have seen variations in talking about the different ones on this message board.

I positively love all of my transplant team though. They are all great, caring, very helpful and reassuring. What more is there
JK

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.

Jump to this post

@lcamino Lynn, my transplant team is in Boston at MGH, I live in NH, just outside of Manchester -- about an hour north of Boston when there is no traffic. I doubt they would bw familiar with any of the doctors up here unfortunately.
JK

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.

Jump to this post

@contentandwell, This is a beautiful tribute to your medical team. I can only hope that others have similar feelings about their care teams. I admire and respect everyone who is involved in any way with the transplant process.
Rosemary

REPLY
Please sign in or register to post a reply.