Passed The Year & A Half Mark

It’s been awhile since my last update.  In April, I had a procedure that kept me overnight & was my first surgery after transplant.  I have one more procedure after Labor Day, hoping this is the last of it for a good stretch.  This is the flare up of my TSC which usually acts up after the LAM settles down.

After so many different tests & workups, I found out that I can no longer eat chicken or beef.  I’ve developed an intolerance to them.

While I’m still struggling some with morning nausea, a good amount of my stomach issues have abated since figuring out this intolerance which is a relief.

I still have my occasional attacks, but they are fewer & farther between.

Before I figured this out, there were at least 3 days a week that I was eating nothing but mashed potatoes or rice because my stomach couldn’t tolerate much of anything else.  I’d get significant pain, bloating, & illness after eating.  I literally could feel the distention come on.

I had a full workup & no abnormalities were detected.

I have to give credit to my friends for helping me fix this, as they were the ones that suggested I try going vegetarian for a month.

I started around my birthday in May.  I was feeling significantly better a month later.

If I really crave meat, then I have fish so I guess I’m technically pescatarian now.  Beyond Meat is a good substitute for me & I found that Fridays makes a good burger from them.  This is no small feat as I still avoid soy because of LAM. So many meat substitutes are soy based.

I tolerated bacon for awhile too but now I can’t.  I had two strips about a week ago & spent a few days feeling very off & ill.

Kind of bummed about that, but I have faith I can find some sort of substitute for that in time.

I’m curious if this happened to others after their transplant, where they couldn’t eat or tolerate certain foods anymore?

I know Gastroparesis (a disease that impacts stomach emptying & digestion) is a big issue in the transplant community because quite often especially during lung transplants the vagus nerve is cut or damaged.

I’m just wondering for those of us who don’t have it, if anyone else has gone through this experience of being fine eating certain foods prior to transplant & then not being able to tolerate them at all after?

If so, feel free to share in the comments.

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4 thoughts on “Passed The Year & A Half Mark

  1. I remember seeing something about reaction to beef and pork on ATS but didn’t pay close attention. Will try and find it again.

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  2. I’ve been thinking about you recently, so I am elated that you posted today.

    I tend to think that we in the transplant community are all the same, but different. So many of us have reactions to various food, meds and drinks …. but not all exactly the same.

    Most of my issues are gastro-intestinal and they, I believe, are all cause by my anti-rejection med cocktail. Over the years, my symptoms have stayed the pretty much the same, and I stopped eating various food, or combinations of foods to see what would help. In reality, nothing I tried really helped, so I’ve learned to manage my symptoms the best I can. I try to eat a little something within the hour after my 8am med intake to keep my nausea in check. Lunch, which is usually my first meal of the day is most problematic ….. very frequently, within an hour of that first meal I’ll feel fine, but have an intense diarrhea episode ……. then I’m fine the balance of the day. I tracked my food intake for a long time …….. the Dr’s, coordinators and nutritionists gave me ideas …… in the end, I simply learned to manage/prepare for these issues.

    Be well, D

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    • Hi DAP, thanks. I felt it was time for an update since I’d been away awhile and it took some time to figure this out. The nausea is a bear to deal with but luckily I just get the bombardment in the morning but not at night. I tried a newer treatment that seems to have worked better for me to help me deal with it, but as you state some days are just better than others. I know the immunosuppressants have a bit to do with it too, but from February to May it was really bad & I tried everything. At first I thought maybe it was just residual issues from getting off TPN in January after failing my first cocktail but then it didn’t seem to resolve much. So I really just tried this as a last ditch since I felt it couldn’t hurt. Once a few days into it I messed up and ordered a burger that I thought was a veggie burger but wasn’t. I blew up and felt awful 10 minutes after. After that, I maybe get two attacks a month but so much better than the 3 a week I was averaging. Constantly a process. 🙂

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