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 group.

Jackie@jackiez….
Thanks for reply always good to get my feedback to know I am not writing something out of the Galaxy
Haha….have a great day.jackie

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@jackie421blfdgurl

Parrot53.
I walked around with cirrochis for quite some time..years ..blood test were not normal when it came to all liver tests
Dr. Kept saying. Oh well we will repeat in a few months..I did .same results..same response.
Symptoms got worse:itchy rashes: purple marks like bruises.dr. said that's from old age!! Swollen belly ..swollen feet.dr.said wear compression stockings! My gastro dr.put it all together after looking at my blood tests and sent me MRI. It came back cirrhosis and a tumor in liver.Now at Mt.Sinai Jan 4 2020.test.test.then Feb. My first ablation
Called Y90. It worked but then another…2nd micro blast but by now on transplant list.call came that October.i still want to ……..that doctor.

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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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@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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