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.

@gaylea1

@ contentandwell I haven't been instructed yet as to the hazards of eating out post-op. What do I need to know? I have been trying to follow the threads on susnscreen and vacationing. I am hoping it will be explained to me by my doctors and coordinator.

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I don't know what kind of post surgery education that your center will provide. However, I feel sure that you will get information about post operative care, and post hospital care when you are ready to need it.
During my recovery in hospital, the nurses had a notebook for me and my husband and every day we went thru a section of it, together, to prepare us for my transition to a healthy life. The period immediately following surgery is a bit hectic, and there are medicine changes being made, but the nurses take care of all of that.
Your coordinator will become your best buddy and resource as you move forward. She/he usually knows the question before you even ask! It will be an exciting time for you!

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@jeanne5009

My meld has been 7 or8 for 2 years. I guess thats good for Stage 4 cirrhosis. Problem is Im 68 and if it continues like this I will run out of time. I'll be 73 and THEN it will go up! Counting my blessings though.
Salt is an issue for me too. Never big user but one little bit is extremely noticeable.
My challange this summer is red tide/ cyanobacteria and microcystins. It is so bad here in FL. Can't swim, boat or even sit on the beach! I have asthma too and this environmental disaster has me on my second round of antibiotics and steroids on top of my regular meds. Needless to say... Im in the house in the air. If I go out to swim in my pool it fires it all up. Not worth it! Ugh!!
Things could be worse...but without air to breathe we are all in trouble....

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@jeanne5009, I admire your attitude!
I found that praying for, looking for, and counting blessings, became a diversion from looking at the clock that seemed to stand still.
Hugs.

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@gaylea1

@jeanne5009 I am not sure if the symptoms vary between a high MELD and a lower score. If they are the same severity that is a long journey ahead. Adding to your other ailments i empathize with you. Remember you are not alone and many of us are are still playing the waiting game. My thoughts and prayers are with you.

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We are each unique, as is our journey toward any kind of organ transplant. Yet, the shared fears, doubts, symptoms, and the wait are what all have in common.
Group Hug

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@contentandwell yes the MELD score is I international. At least I am in range for transplant here in London. I am 5ft 1in so we are about the same size.
I also am restrictive with my salt intake. I don't use salt on anything but it took some getting used to. I can taste it right away now. When eating out I always look for an item that I can control the salt with. I love soup but find it too salty in restaurants. I make my own at home with salt free broth like Campbell's. Even a .ittle salt has my feet, ankles and fingers swelling.

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@jeanne5009 I am not sure if the symptoms vary between a high MELD and a lower score. If they are the same severity that is a long journey ahead. Adding to your other ailments i empathize with you. Remember you are not alone and many of us are are still playing the waiting game. My thoughts and prayers are with you.

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My meld has been 7 or8 for 2 years. I guess thats good for Stage 4 cirrhosis. Problem is Im 68 and if it continues like this I will run out of time. I'll be 73 and THEN it will go up! Counting my blessings though.
Salt is an issue for me too. Never big user but one little bit is extremely noticeable.
My challange this summer is red tide/ cyanobacteria and microcystins. It is so bad here in FL. Can't swim, boat or even sit on the beach! I have asthma too and this environmental disaster has me on my second round of antibiotics and steroids on top of my regular meds. Needless to say... Im in the house in the air. If I go out to swim in my pool it fires it all up. Not worth it! Ugh!!
Things could be worse...but without air to breathe we are all in trouble....

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@gaylea1

@contentandwell I am not in a region. I live in London Ontario Canada. My doctors and transplant coordinator told me I am in the right range. For some reason my size and blood type are holding me back. I am petite and apparently most livers are too large for me. I'm not sure what truth lies in that but that's what I was told. I've been 29 since June and my MELD is remaining the same. It took me 12 months to move from 25 to 29.

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@gaylea1 Now that you say that, that you live in Canada, I think I do remember asking you that before so if I did, excuse me for asking again.
I do know that they say size is a criterion. After writing to my donor family I received a letter back with quite a bit of information about my donor. She was a young woman and just about the same height that I am, 5'3" (or 5.2.5" now).

So MELD is international I presume? That's a long time to move only 4 points, but at least it's better than going in the opposite direction which I hear some people do. I really do not understand how that can happen. I was eating very healthily but mine continued to increase.

Regarding restaurants, my main restriction is sodium. I try to maintain a generally healthy diet, I don't eat fried food but there is a lot of fat in other things too. Restaurants tend to use a huge amount of salt, particularly in soups, sauces, and marinades. I had been limiting my sodium for years so when I go to a restaurant where there is a lot of salt in the food I can really taste it. I never put salt in things I cook myself and my husband is fine with that. The only things we both feel really need a little salt is eggs and beef. When out, If I can choose some type of meat that is not seasoned ahead of time I always tell them no salt on it. The restriction for most people seems to be 2000 mg but I find that if I have more than 1500 I really feel it, I develop sausage fingers.

JK

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@contentandwell

@jodeej, sounds great. Are you a fan of the some of the artists that perform there? If so that will be a lot of fun, seeing some on stage. Relax and enjoy. I will be interested in hearing how you handle eating out, I find it to be such a problem. One night, like when we go out to eat around here, is OK but on vacation it gets more difficult.
JK

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@ contentandwell I haven't been instructed yet as to the hazards of eating out post-op. What do I need to know? I have been trying to follow the threads on susnscreen and vacationing. I am hoping it will be explained to me by my doctors and coordinator.

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@contentandwell

@gaylea1 I was originally listed lower than that, and it took about 15 or 16 months before I had my transplant at 28. At that point I was due for an increase in another week. Isn't there an automatic increase every 3 months?
Which region are you in? Do you know what the is average is for transplant in your region?
JK

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@contentandwell I am not in a region. I live in London Ontario Canada. My doctors and transplant coordinator told me I am in the right range. For some reason my size and blood type are holding me back. I am petite and apparently most livers are too large for me. I'm not sure what truth lies in that but that's what I was told. I've been 29 since June and my MELD is remaining the same. It took me 12 months to move from 25 to 29.

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@gaylea1

@jerrydrennan ...Jerry were you at 33 MELD when listed or did your score go up? How long did it take to reach 33? I'm interested at knowing as mine has been sitting at 29 3 months now. I've been on the wait list for 15 months now. I was originally listed at 25. I am seriously getting more and more anxious waiting as I haven't been well during this entire time and am getting worse.

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@gaylea1 I was originally listed lower than that, and it took about 15 or 16 months before I had my transplant at 28. At that point I was due for an increase in another week. Isn't there an automatic increase every 3 months?
Which region are you in? Do you know what the is average is for transplant in your region?
JK

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