Thursday, January 15, 2009

Transplant Check-up!

So I completely forgot to mention that I had a Shands (my transplant center) check up coming up. It was yesterday and I have to say it went pretty well.

They are THRILLED that I have started my pulmonary rehab and say thats the best thing I could do for myself for after transplant~~which I already knew! :)

One thing that I was really worried about was doing my PFT's. I thought for sure they would have gone down. It's been awhile since I have had to do one and I have been in the hospital A LOT lately so I was a little concerned about what the results would say. To my surprise my FEV1 was actually the same as it was a year ago which I am SO thankful for.

They did tell me that when I am moving around I should be wearing my oxygen more...which I kind of knew already it just sucks them actually saying it. When I am sitting my oxygen stays ok but as soon as I move it drops which isn't good. I am hoping with me being more active now with the exercising and stuff that will improve a little but who knows.

Also, I know a few CFers who read my blog are/were on oxygen all the time and I was wondering what you did/do for when you went out. Did you use big "E" tanks or did you have something smaller to lug around??

At home I have a big concentrator which I use when I sleep and then I have a little concentrator that I bought a year or so ago to take with me to NY (its like 10pounds and it is portable and acceptable on airplanes and I needed to be able to have something with me to sleep at night) that I use when I am around the house but the battery life on that thing isn't that great so its plugged in a lot of the time.

Anyway...any feed back on this is appreciated. IF I have to start wearing oxygen when I am out the least noticeable kind is the better! Thanks in advance~Jen


OceanDesert said...

Hi Jen! That is AWESOME that your PFT's are staying stable!!! Yaahooo!

As for the O2, I used the big concentrator all the time when I was at home and to sleep... I just got the reeeeeallly loooong tubing, which could be a pain, but may be better than lugging the portable concentrator around? Our house is all on one floor and only about 1200 sq. feet, so it worked out.. I would even pull the concentrator out to the patio so the tubing could reach to the pool so I could swim and float on my raft!

As for being out and about, I used the small M6 size tanks, which I would just put in a pack that would go over my shoulder like a purse... but I know that you can get back packs for them too.

Hope this helps!! That's great that you have your own portable concentrator for air travel, etc!! I had to "rent" one from my o2 supplier and they were pricey!

OceanDesert said...

Yes, you'll definitely want a regulator... amazing how these peeps get jobs and know so little about what they're supplying to people!

I used about 2-3L and the M6's would last me about 1 1/2 to 2 hrs, WITH a regulator... Towards the end, before my tx, I was on 4L and they seemed to last about an hour. I liked the M6's... sometimes they were a pain to carry around... but we got me a Winnie Walker (a 3 wheeled walker) if I was going to be doing a lot of walking, like at the mall... and it was nice to have it to hold my purse or any purchases that I didn't have the energy to carry. Of course, that is even more noticeable than just the O2 itself, but it helped me get around and do things by myself easily.. so it was 100% worth it!

I TOTALLY agree on the BIG concentrator.. We would have to bring that with us on trips for the hotel and it would get SO hot in the room!

OceanDesert said...

Oh man, this is my third comment!.. Just meant to add that I don't take Lantus.. .I did right after the tx for about a month, until they started lowering the prednisone... Now I just do the Novolog with lunch and dinner usually... my sugars are always perfect in the morning.. I wonder if a/shot/day of Lantus would cover me for all meals? .. I'll hafta see what the doc thinks! .. Do your sugars ever drop too low at night... since you do it right b/f bedtime?

Christy said...

I used the big concentrator at home and the helios liquid O2 tank when I was out.

That's great that you are in rehab. I think one of the most important things to do before transplant is get your legs strong. They lose muscle mass before anything else when you are in bed post-transplant, and if they are already strong, you will do better when starting rehab post-tx.

I'm on Novolog and Lantus. I am doing really good with both of these.

Good luck with everything.

Christy said...

I just linked your blog to mine.. I hope that's ok. Let me know if it isn't. :)

Christy said...

I have a blog award for you on my blog. :)

Somer Love said...

Hey Jen hope you are enjoying your weekend...

I have followed your blog fro a while I found ya through our Cysta Sara. I am updating my blog roll and was wondering if I could link ya let me know.

My friends taht where O2 continuous love the liquid O2. Its a about twice the size of your concentrator that you use in your home and they feel it up with Liquid O2 once week this would take place of your concentrator and it is more pure. Then you have a lil portable machine smaller then the small tanks and lighter. and you just connect it to the large machine and fill it up. that way you don't have to have them keep delivering tanks to you they just come once to fill up your large machine.

I am use a concentrator at night and when I work out. But I have the tanks for when I need to use them outside of the house. When the day comes that I am on it continuous I will switch to the liquid 02. I hope this helps.