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.

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@lcamino Thanks on the photo. It was actually last week in the Boston Public Gardens. We had friends from CA in town so showed them around a bit to "old Boston" institutions, like the Public Garden with the Swan Boats, and the little "make way for ducklings" sculptures, and then went to the old institution, The Parker House for lunch - originators of Boston Cream Pie and Parker House Rolls. It was a great day, we had perfect weather for it too. I like that picture because I have sun glasses on! My eyes are getting droopy in my old age.
I agree with your comments about doctors but when my PCP last week was looking at records from over a year ago and saying I had cirrhosis and cholestasis and he of course knew I had a transplant in September, had even seen me two times since then, what was he thinking? That they gave me a cirrhotic liver and threw in a gall bladder (that goes out with your old liver and is not replaced)? How could he not have checked the date when he saw how illogical what he was reading was? The interesting thing is that I thought he was a great doctor initially a few years ago. I really think he's burned out now. My confidence is gone, gone, gone.
Had my transplant clinic appointment today. All is well. They are modifying my medications a bit to helpfully help my digestive problems and my horrible sweats, plus hopefully bring my creatinine a bit. It's not horrible but they would like it a tad better, along with my blood counts. I absolutely LOVE my surgeon. I trust him totally. As I said to someone, if I thought he was single and my daughter was not engaged I would be trying to play matchmaker! He is exactly her type.
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 am sure this will work out great, I am so excited about it.
Yes, I do have an absolutely great son. As I always say though, the jury was out for a long time when he was in school but we always felt that if we could push,pull, shove him through he would do well and he has. He's VP of a staffing company on the west coast.
It will be fun because he will have his girlfriend with him too, they will have been dating for a year. I have not met her yet but she is so sweet -- she sent me a Mother's Day card thanking me for giving birth to him!
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,, This technology is amazing. I want to compliment you on becoming a great resource for transplants and beyond! 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, It is so nice to meet you face to face. Your visit to the Boston Public Gardens sounds delightful. I did not know about the history of Boston Cream Pie or Parker Rolls. But I do love them, even way down here in Kentucky!
That is really strange about your PCP reviewing your records. I have a wonderful PCP, too. In fact he is the one who saw in my labs 16 years ago that there was something not quite right, and referred me to GI. However he is more than happy to let my transplant team answer any transplant related questions. He does, however, give me priority when needed.
I am thrilled for you that you had good appointment today. You were probably expecting it; but it sure feels good to get those words from the doctor, doesn't it? I hope that the medication tweaks will help to relieve some of your symptoms.
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 I'm so pleased that your appointment went so well! Congratulations - 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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@contentandwell - Well when you start to lose confidence in a doctor and it is not you being unrealistic (which is certainly doesn't sound like) it might be time to make a change. I have an amazing GP who is a 40 minute drive away. He was my GP when before I moved and he is so good, and knows me so well, I have not been able to bring myself to get a local GP. The downside is when I'm sick (too sick to drive 40 mins) I end up going to a walk-in clinic which is not ideal. I have known my GP for 23 years, he has treated my husband the same amount, and I like his approach plus he stays current so I'm going to keep making the drive. I don't think I can replace our history.

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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, Having both organs is not really complicated for me because I just follow the directions that I am given by my transplant teams. When I go to my annual review, I have scheduled appointments with both the liver dept. and with the kidney dept. Fortunately most of the required screenings are the same for both depts. There is excellent communication between the two depts., too.
I have annual follow-ups for liver/kidney. During 1st year, I had a 4 month checkup and then annual.

Yes, the meds can be a bother - but worth it for sure! I think that I mentioned that I get trembles couple hours after my meds. Well, at the gym, I have been using the stair step machine to strengthen for upcoming hiking vacation. My husband and I go in the mornings after 8:00 meds, and this crazy machine, in fact all 3 of them, have an annoying vibration at my selected training level. Grrrr
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 Wow, I'm really impressed with your training program, Rosemary! Good for you. The organization that you have in place for your follow-up appointments and meds must keep you on your toes as well. I had no idea that post-transplant was such an involved process. 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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@lcamino, good to hear about VRBO. I know my son and daughter both have used it and my daughter used to travel a lot for her job so she had her NYC apartment on airbnb for a while -- it helped to pay the rent. I was sort of nervous about that, if someone could copy the key, but she never had a problem.
VRBO really is a good way to go when traveling with others.
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 - Teresa, I do have to brag about my training program!! Since I am fortunate to have no physical restrictions, I am doing 4 days a week. 2 days are with machines for arms, chest, legs, abs,; and 2 days are devoted to treadmill and stair climber. I am learning to feel my body and my heart rate and to make some adjustments to my pace. My family have always been outdoor lovers. And a good hike is always our choice vacation activity. (I do choose a motel and a cooked meal - no more camping)
We are headed to the Great Smoky Mts in a couple weeks. And it is hot and humid there. My fear is that with my fairly new exercise induced asthma, that I'm going to need all the extra physical conditioning to get me up a mountain trail. I am being treated by pulmonologist and it is under control, except for the heat and humidity component.

The neat thing about the post transplant protocol for visits is the opportunity to see the very same people who took care of me when I was so very sick. It is happy for both of us!

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