One thing I had been told by a few people but that is crossing my mind is to really be mindful of what I eat. Not just from a nutritional standpoint (that is a given) but also from a food safety aspect.
I know these may seem like common sense rules, but they take on ever increasing importance after transplant because of the potential for foodborne illnesses to wreak havoc on my entire system because of my body being immune suppressed.
Now I know I’ll have to be a bit more mindful of food preparation & handling everywhere like I’m mindful of food labels. Also being vigilant when I choose to eat at other places.
The FDA had a nice booklet for downloading that I’ll have to take a closer look at later. It’s called Food Safety For Transplant Patients. (It might also be worth passing along to friends & caregivers who may entertain as well.)
Additionally, the Lung Transplant Foundation had a few other worthy (yet subtle) pointers in their section on Food Safety that is worth a read through.
The University of Michigan had a helpful basic primer as far as nutritional guidelines to follow post transplant & some helpful information that is available for download.
Speaking of nutrition, there were a few changes I had to make to my diet well before transplant talk entered the picture.
Once I started taking Rapamune in 2009, I had to mindful of asking if certain drinks contained grapefruit juice because the enzymes in that can cause problems with my blood levels. This is especially important because since there are other medications I take with this same issue that could compound the effect. Leading to double or triple the levels of normal (which could be toxic) if I’m not careful & ingest these enzymes unknowingly.
In my past post (from September 6, 2015) titled “Looking for Needles in Haystacks” I speak to this particular issue more in depth, including articles that point to “hidden” sources of these enzymes.
For the years before that in the early years when I was diagnosed with LAM, I had religiously read labels & avoided certain foods (mainly those with active soy) because of what I learned from The National Institutes of Health when I was part of their natural history protocol. Some of these foods contained high amounts of phytoestrogens (the plant form of estrogen).
Though not proven, in some women LAM progression has worsened with high amounts of estrogen. (I think more details can be found in the LAM Handbook regarding this controversy.)
Therefore, I’m not going to raise a fit if some tofu occasionally shows up cooked in a dish unbeknownst to me, but there are certain foods I can and do avoid consuming consciously because of personal choice & because I know they contain active phytoestrogens.
I have my own reasons for that based on past experiences that I will share on a one-to-one basis if people ask me why. I don’t feel comfortable vocalizing it otherwise.
(Mainly, because I don’t want others to somehow debate my experience, which has happened on occasion in the past. This eventually lead to a few tense arguments over what I was told by the NIH. Nor do I want people to think I’m offering medical advice or passing judgement on others. We all make our own choices in our own best interest with the knowledge we have.)
I also know that once my lung disease advanced to a certain point, around moderate disease level, there were certain foods I had more difficulty eating or had to eat in smaller amounts like pasta. I’d get short of breath if I ate too much or too fast.
Also compound this with the weight gain and ravenous appetite that comes with prednisone bursts. I tended to also have periodic weight fluctuations during those times because I couldn’t stay full.
Then I’d have to force myself to eat at other times, especially post surgery due to nausea or anesthesia or other meds that actually suppressed my appetite.
It was quite the yo-yo for awhile. I’ll also have to possibly be on guard for all of that post transplant as well (at least in the beginning).