Swelling post transplant

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anonymous

New member
Hi, Im deciding what to pack in my 'for when the call comes' bag at the mo. Someone said that you should pack pjs that are a size too big because you swell. How long do you 'blow up' for. Is it just a few days or is it a few weeks. Would you reccommend that I pack stuff too big?
Thanx in advance,

Shamrock, x
 
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anonymous

New member
Hi Jazzysmom, yeah I haven't posted in a while as I've been in hospital. Anyway hope all is going well for you too!

Shamrock, x
 
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IG

Guest
I wouldn't pack skin tight stuff. Honestly you wouldn't want to anyway. I'd pack something loose and comfortable, maybe something a little old that you don't mind getting dirty, possibly blood on. I don't know what you mean by 'blow up' for.. I didn't have all that much swelling, at least not as much as you would imagine. I suppose it's different for each person though. I wouldn't pack something too big just nice lose comfortable stuff. Old t-shirt, etc. I personally didn't take many p.j. bottoms with me, found them annoying when they got caught up in bed sheets, trying to move around and stuff.
 
A

anonymous

New member
Shamrock,

Pack loose clothing. You may swell ( this is from fluids you receive) (or it can be from prednisone), or you may not. But being comfy will help so much.

As far as packing, it is not easy to pack for this tx, and also, you will be in ICU after tx, and it is not secure, you cannot watch your stuff, and you are provided for entirely in ICU, so I feel don't take any belongings, or suitcase. Pack a bag of stuff you want, and then have your family bring it when you are ready to move to a room or are able to monitor your stuff.

I was in the ICU for 10 days, and I did not need any of my stuff. Once I got to a regular room, my family brought my stuff or bought what I requested. I did have fluid retention in the beginning and ended up wearing some of my boyfriends clothes. Then I lost that fluid and was about pounds. So my clothes were falling off of me. I survived with the falling off stuff and then shopped once they let me out of the hospital.

I think more important pre tx, is to create Signs with key words... like "hot" "cold" "water" "be quiet" "hold my hand" etc. Also a wipe board so you can communicate if you are not able to talk. That is the stuff you will want.

Good luck, hope the call comes soon.
Stop by my site if you want, lots of info there too.

<a target=new class=ftalternatingbarlinklarge href="http://groups.msn.com/TransplantSupportLungHeartLungHeart
">http://groups.msn.com/TransplantSupportLungHeartLungHeart
</a>Or email me anytime
luckylungsforjo@aol.com

Joanne Schum
 
A

anonymous

New member
Greg & I had read things by post txers about swelling up -- and I was kind of wondering what the heck they were talking about, too! The only time Greg experienced this was when he got put back on the vent (two or three days post tx) for a week, during which he was completed sedated, and he got puffy - hands were really puffy, he had a double chin, etc. They told me it could be from several things - the surgery, the meds, but basically they felt it was because he was lying in bed. As soon as he was extubated and began moving around he went back to normal. I was worried about his wedding ring, because that was the first thing he did after surgery was put his ring back on, then he was out again and I didn't think to take if off, and it was quite tight. The clothes didn't matter to him, because he was, of course, sporting the lovely hospital gown during his stay in CVCC.

Also, the best nurses were always moving him around, so he wasn't stationary. And when I was sitting with him I was always moving & massaging his limbs. I don't know if that actually helped him, but it made me feel better. Couldn't imagine what he was going to feel like after being motionless in bed for a week.

Glad to hear you are preparing for the big day! I've been super busy since Greg's tx, so I haven't been able to keep up with all the posts - where are you listed?

Take care,

Jan (Wife of Greg, 46 cf'er w/cepacia tx'd 10-31-05)
www.standinginthegap4greg.org
 
A

anonymous

New member
Wow Greg only had his 2 and a half months ago! How is he doing? How has his life improved since before the tx?

Shamrock, x
 
A

anonymous

New member
Greg's doing great. He spent 3 weeks in hospital at time of surgery (had a couple small 'bumps in the road.') Then he spent two trips (one week each) post tx in the hospital battling bowel obstructions -- he lost 35 pounds in two months. He has now gained back about 14. (You can read all the boring details at his website.) He has a bronch scheduled for tomorrow, and if all goes well, it will be his last for a while. He is back working (he's a pastor) basically full time. He dislikes all the pills, and the diabetes (probably from the stress of surgery & all the steroids - we're hoping this is temporary). But being able to breath -- priceless! Not lugging the oxygen around - whoopeee! Pre tx he couldn't even, you know, take out the garbage. He's gaining his strength back every day, and we are looking forward to doing all kinds of things we haven't done for years. We celebrate our 25th wedding anniversary in June. We are so blessed. We wish you well and look forward to your updates!
Take care, jan
(wife of Greg, 46 cf'er w/cepacia, tx'd 10-31-05)
www.standinginthegap4 greg.org
 
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