My Double Lung Transplant

Friday, April 17, 2009


I sit here in an utter state of shock. I am reeling and going through a withdrawal of such explosive proportions that I feel the need to share it with everyone now - before i forget.
As i was sitting with Carol today – doing nothing but feeling like i looked busy – she informed me, that she had been informed last week, that post transplant, (or the first year or so) you must firstly have no alcohol (gasp), no herbal tea (shriek) and worst of all, NO POP!

*falls on floor and promptly convulses*

WHAT THE FUCK?! Up until now i have not been informed of any dietary restrictions. Has anyone else had to deal with this? I know it differs from center to center and blah blah, but seriously? Lindsey told me her center told her she couldn’t dye her hair post-tx, or submerge her head in water when she swam. The no swimming dealio is fine by me, since i’m afraid of being eaten by a whale or a shark, but really?

When i got listed i asked if i would have any dietary restrictions. I was told NO. I asked if i ran the risk of developing diabetes. I was told NO. I did not ask if i could resume the lifestyle of a weekend alcoholic and party animal (ha!) nor did i admit to my addiction to coke and pepsi.

It kind of sucks. I don’t think i can function without pop. I’m serious. No alcohol, no herbal tea, that’s fine (wait does earl grey count b/c then we have a problem if it does). I know about the no grapefruit and no runny eggs dealio, but i’m a little irked at the pop.

We shall see. I'll run an inquiry at clinic on Monday. Yup, i go back. We’ll see how it goes. I’m feeling a bit better...i’m getting more heart pains but what else is new. I think Tobi is loosening its grip on me a bit and i can breathe a little easier.

This morning i actually woke up and my lungs were plastered to my chest wall...and not at the bottom like they usually are, they were stuck right at the front under my collar bone. I just lay there, with my hand over my chest, feeling the crackling, the pulling of lung tissue away from my chest went all the way down my sternum to the point that i didn’t know where it began and where it ended. It was everywhere.

In other news, it’s warm! It’s gonna be something like 19*C today, and i plan on sitting on the deck again today like a pig and reading in the sun. I’ve started my new Mary Queen of Scotland and the Isles book and so far it is tres good.

Hope everyone has a good Friday. After all, it is Friday!


BreathinSteven said...

Who is Carol?!?! I don't know all of the people in your life -- but I'm definitely not aware of the restrictions she's touting in the level in which she's touting...

First of all -- I've heard nothing about no pop!!! (I probably do 2-3-4 cans of diet daily...) (I'm diabetic post transplant, in years past I swore I'd cut my throat if I went diabetic because of my major sweet tooth and love of Pepsi and other sugared pops... I've re-thought the whole throat cutting thing and switched to diet...) Some clinics are strongly advising no alcohol -- there might be interactions with some of the meds -- best to talk to the clinic and/or a pharmacist or pharm-D about that... I drink from time to time. 6-7 weeks out I told my doc I had a taste for Guinness -- he said anything in moderation... I tend to like pink & fruity drinks now, but that's OK because I've got girlie lungs...

Some younger CFers and younger patients are being advised no drinking... I've known too many who have gotten their beautiful lungs and had the energy to party for the first time in their lives -- got blitzed, puked, aspirated, major infection, and didn't get as much time as they should have -- but I don't know whether part of the advice revolves around that...

I don't think earl grey is an herbal -- I think that's a real tea tea... We have to treat herbals as if they were drugs -- very often they truly are... Some of them tend to be blood thinners / interfere with clotting -- you don't want to be in that situation when they're taking a biopsy of your new lungs... Some of them interfere with our drugs... You can drink herbal teas -- you just have to know which ones you should stay away from...

Green tea is another story... We were at a transplant learning session and they kinda told us to stay away from it -- there seemed to be anicdotal evidence that patients frequently using green tea found themselves in rejection at higher rates... Don't go there. Tastes like crap anyhoo. (Or at least freshly mown lawn...)

I've heard about issues with dying your hair... and about avoiding those nail lamanants or them fake fingernail thingies that you paste over your real nail. (I don't do that, even though I have girlie lungs -- pink drinks are enough...) There are potential issues with infection and fungal infection that they can cover up...

As for the herbals -- I think camilmile and stuff like that is OK -- I think you're supposed to be careful with the ginko and other odd concoctions that are supposed to make you think better or boost your immunity (which would seem contrary because we're trying to reduce our immune system...)

Let us know what your clinic says about pop, and if not, why...

Love, Steve

It's Her said...


Alcohol: drinking is fine- def! I think the risks that Breathin Steven refers to (puking up your meds) is the danger, but if you don't puke when you drink then you should be ok. You can even drink too much at times too, but just don't do that TOO often - i think that's called alcoholism :P

Pop: Never heard that. THe only reason I can think of is that it may cause reflux??? But sure I was drinking that IN hospital after tx with my meals and the nurses had to get it for me so for a 'banned' substance, it was very readily given to me :P

The others:
Ice in restuarants- may be made from dirty water. i used to be very strict about that for a few months, now I don't bother but if I was in Europe I'd request no ice (just because they can't drink from their taps) .

Shellfish/Sushi- increased samonella. I eat prawns and stuff though.

I drink mint tea, dunno if there's a big difference between that and herbal but I drink it.

If you guys have Actimel (with added L.Casei Immuntias) don't drink that, basically avoid anythin that says 'good for your immune system' :P

mail me if you're worried about anything!!


Piper said...

Bree, my center advises you not to drink and I know many others that say the same thing, or just to drink only in very small amounts (glass of wine on special occasions). It has nothing to do with vomiting, or at least that's not the reason they GIVE - they say it's b/c alcohol makes you generally more susceptible to infection and weakens your body. I also know some of the meds (specifically prednisone) are really tough on the liver, so alcohol isn't a great idea.

I have no idea why they told you that you don't run a risk of post tx diabetes. Not everyone gets it, sure, but I'm told it's pretty common. Even the CFers have to drink diet pop post tx most of the time, and most of the other diet restrictions (like low sodium) don't really apply to us. So I would ask about that - you don't want to be horribly disappointed if you end up diabetic from the tx meds, and prednisone (again) has a pretty high rate of causing that.

Good luck!