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.

@bjintn

I'm finding more similarities with more people...how are any of you dealing with eating issues? I'm hungry but eating my food is unpleasant as with no salt, its basically tasteless. My husband works so hard to rectify this but I'm just going through the motion of eating and not enjoying any of it. I've become so picky that I've told him that I'll be satisfied with just our smoothie as they are rich in good foods and I can taste them. I do have issue with a metal taste in my mouth and suck on cough drops to endure it. And what is ablation? Thanks y'all.

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Hello ..Jackie here.Ablation is a procedure where Dr. Puts a tiny tube with camera in your arm vein and he put in radioactive beads in tumor which made it die.other procedure was a microwave ablation where same procedure but it fried the tumor I was knocked out for that.go home frew hrs later. After my transplant for 8 mos.all food tasted horrible.yes
Metallic taste.but my good old taste buds came back slowly esp since Dr did away with most meds now take tactrolimus.it will get better.hang in there

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@bjintn

I'm finding more similarities with more people...how are any of you dealing with eating issues? I'm hungry but eating my food is unpleasant as with no salt, its basically tasteless. My husband works so hard to rectify this but I'm just going through the motion of eating and not enjoying any of it. I've become so picky that I've told him that I'll be satisfied with just our smoothie as they are rich in good foods and I can taste them. I do have issue with a metal taste in my mouth and suck on cough drops to endure it. And what is ablation? Thanks y'all.

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Hi Bette, when I had no sense of taste before my transplant, I found that cinnamon added a bit of taste to apples or breakfast toast or oatmeal. I also enjoyed adding a bit of lemon juice to pasta or to stir fry or roasted veggies. Warm (not hot) broth was good. I did not do smoothies, but ensure with a scoop of ice cream was suggested by my GI. I also had nausea. I don’t remember whether I was given anything for that. Room temperature ginger ale was another thing I could enjoy. There are some no salt seasonings on the market. I was happy using the original Mrs Dash.

Your husband is a real darling for making nutritious smoothies for you.
Have you talked to your doctor about your lack of taste? Has he offered any tips?

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@bjintn

I'm finding more similarities with more people...how are any of you dealing with eating issues? I'm hungry but eating my food is unpleasant as with no salt, its basically tasteless. My husband works so hard to rectify this but I'm just going through the motion of eating and not enjoying any of it. I've become so picky that I've told him that I'll be satisfied with just our smoothie as they are rich in good foods and I can taste them. I do have issue with a metal taste in my mouth and suck on cough drops to endure it. And what is ablation? Thanks y'all.

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Bette, have you tried sucking on a mint? I used to keep mint life savers on hand.

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Running out of clothes to wear!

I experienced a great deal of swelling/edema at the end of 2021. My doctor added diuretics to alleviate the problem and I lost not only the water weight but an additional 20 pounds very quickly. Since that time, I am continuing to lose (at a safer pace) while increasing my exercise and eating better in preparation for my liver transplant. I really need to update my wardrobe to clothes that aren’t too big for me, but hesitate to invest much right now since I don’t know where I will be post surgery. Is there anyone out there that can provide some advice on your experience with weight gain or weight loss post transplant?

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@tream01

Running out of clothes to wear!

I experienced a great deal of swelling/edema at the end of 2021. My doctor added diuretics to alleviate the problem and I lost not only the water weight but an additional 20 pounds very quickly. Since that time, I am continuing to lose (at a safer pace) while increasing my exercise and eating better in preparation for my liver transplant. I really need to update my wardrobe to clothes that aren’t too big for me, but hesitate to invest much right now since I don’t know where I will be post surgery. Is there anyone out there that can provide some advice on your experience with weight gain or weight loss post transplant?

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Hi tream01, I myself had a Heart Transplant and experienced similar weight loss but regain some back. I no longer need the diuretics and I leveled n out at 190ish. Pre Transplant I was about 205 and dropped to 179 during my post Transplant days but now 4 years later as they wean you off the Transplant meds I regained. So I'm try to get back down to the 179 range, walking about 3-4 miles a day and a few days a week strength training at the gym but I seem stuck at 189-190 so I guess the trick is to still not think the Transplant will be the permanent solution. Still I feel good at 190 with a bit n of a belly I wish was gone .

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Hi @Rosemayra
Jackie here...wondering if u ever tried to get in touch with Athelea..how can I send her a message..I can't find any posts from her even though there are a lot!!!! Thanks

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@jackie421blfdgurl

Hi @Rosemayra
Jackie here...wondering if u ever tried to get in touch with Athelea..how can I send her a message..I can't find any posts from her even though there are a lot!!!! Thanks

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@jackie421blfdgurl - Do you remember when you became a member on Connect? You were asked for an email which is kept private/for internet connection only. And you created a name to identify yourself. This is to assure privacy of all members. I am a member who is a volunteer mentor, I follow the same rules and privacy as you do. I do not know addresses, and no one knows mine. I only know personal information that is occasionally shared in a Private Message.

A member's @name is a helpful tool.

-When you click on the Blue @name to will be taken to the member's profile page. You can read the short member introduction. You can see under the profile picture when the member was last active on Connect.

You will also see the following items:
Discussions (started my member)
Comments (member's public posts)
Reactions (like, helpful, hugs)

If you scroll backwards in this particular discussion to May 5, you will see a post by the member you are referring to.
You can click the blue @name and find discussions where member has participated. You (or I) can send a PM, but member will only get it if they are active (signed in).
Jackie, I'm sorry that I did not respond to your earlier PM.

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Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15 when I went on the list. I have a hard time dealing with not knowing if or when the phone will ring with an available liver. In that short space of time I have to make mental adjustments no matter how ready I think I am. I deal with some anxiety over this, I'm almost 60 now and have been through a lot in life already. I passed all the tests I had to take to get on the list and now it's either my liver gets better or gets transplanted. I've lived with liver disease for about 20 years and hepatitis c was cured in 2015, Anybody have experience dealing with anxiety before getting a transplant?

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@rosemarya

@jackie421blfdgurl - Do you remember when you became a member on Connect? You were asked for an email which is kept private/for internet connection only. And you created a name to identify yourself. This is to assure privacy of all members. I am a member who is a volunteer mentor, I follow the same rules and privacy as you do. I do not know addresses, and no one knows mine. I only know personal information that is occasionally shared in a Private Message.

A member's @name is a helpful tool.

-When you click on the Blue @name to will be taken to the member's profile page. You can read the short member introduction. You can see under the profile picture when the member was last active on Connect.

You will also see the following items:
Discussions (started my member)
Comments (member's public posts)
Reactions (like, helpful, hugs)

If you scroll backwards in this particular discussion to May 5, you will see a post by the member you are referring to.
You can click the blue @name and find discussions where member has participated. You (or I) can send a PM, but member will only get it if they are active (signed in).
Jackie, I'm sorry that I did not respond to your earlier PM.

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Good morning 🌄
After playing around with site I found how to send a private message to her...I now keep my fingers crossed.thsnks for helping

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@txpal

Hi, I'm pre-transplant for a liver and have a Meld score of 14. It was 15 when I went on the list. I have a hard time dealing with not knowing if or when the phone will ring with an available liver. In that short space of time I have to make mental adjustments no matter how ready I think I am. I deal with some anxiety over this, I'm almost 60 now and have been through a lot in life already. I passed all the tests I had to take to get on the list and now it's either my liver gets better or gets transplanted. I've lived with liver disease for about 20 years and hepatitis c was cured in 2015, Anybody have experience dealing with anxiety before getting a transplant?

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Hi txpal!

I have had similar feelings since being added to the list a few months ago. Although I have a potential living donor, the anxiety remains. I had hoped to have my donor approved already, but now have oto wait another 4 weeks for him to have one last test run…. The anxiety is very difficult to cope with at times. The only thing I have found for relief if to try and live for today. We have no control over what happens in the future and there is no way of knowing how long we have to wait for “the call”. As long as I have a go bag ready, and keep my phone handy, I have been looking at this as my time to get exercise and eat right so I will be stronger when the time comes. I hope that helps a little, and wish you all the best!

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