Lung Transplant Testing

[Joblazer86]

Was wondering how many test you need to do before you are put on the list? I am going to have to do this soon once the insurance part is taken care of and just wondering what to expect. Is some of the tests difficult?Exhausting on the body?

 

[dresapp]

My assesment took 4 days. Most of the tests were xrays and scans so they dont hurt or anything. I also had to do Pulmondary Function Testing , that was a little exhausting. I also had to do a test where I had to lay down and peddle, bike pedals for like 10 min as fast i could to test my heart and edurance. That one I found the hardest. I cannot remember the name. Than ofcourse you have bloodwork, cardiograms, echograms, bone density test and several others. Most of the test I have had done before for My annual CF testing. Different centers sometimes have different tests they run. I also had to do a 6 minute walk to see how far i can walk and what my oxygen saturation was. While I was being assesed I also had to meet with doctors, coordinators(nurses) and social workers. Its usually a tiring week more because I had to run from appt to appt and i talked with so many ppl. Its alot of information to process in a couple of days. Some centers may keep you as an inpatient if you have alot of testing crammed together and your from out of town.
Hope this helps. I go to Toronto, Canada so it may be different than the US centers or UK ones. Good luck

Kris
22 pre transplant for lungs and liver

 

[anonymous]

One other test they do in the US is a heart catheter. This is similiar to when you have a PICC line inserted, I think, except they go in near the groin area w/ the catheter and I think they check pressure levels in your heart and maybe scope your heart?? In case you can't tell, I have not done this--this is just information I've "picked up" along the way & it may be inaccurate. Hopefully someone that's been there, done that, in the US (if that's where you are from) will give you some insight. I'm guessing it is a tiring time for anyone to go through, but if/when you get the transplant, it's all worth it.

 

[anonymous]

My assessment took 3 days. I did it as an outpatient. The worst test was the heart catheterization. I didn't like that one and it wasn't as bad as I thought it was going to be. It is a tiring three days but you will be okay and get through it. It is a lot of bone scans and blood work. It is just exhausting talking to everyone and you have to be upbeat. They write everything down on you and they want a patient who wants a transplant. So you always have to be upbeat and ready to go and smile and be a good little patient. I suggest staying near the hospital if you are not close to it and if they don't keep you as an outpatient. Its not a fun three days but you will get through it.
Margaret
double lung 11/11/04

 

[anonymous]

When you get a heart cath., ask them to go through the groin. It is a lot less painful.

 

[Joblazer86]

Thanks for the information everyone. I just did not want to go into it not knowing what to expect b/c if you know what is coming it's a little easier. That's just my view about it! Thanks again!!!!!

 

[Emily65Roses]

You know, maybe I'm just a big baby... But the idea of the heart catheter deal going into the groin and up from there sounds painful and skeevy. I imagine when I get there, I'll just do it, but the whole thing creeps me out.

 

[RoxyChick2381]

Yeah i feel the same way as emily does about the heart catheter. Can't they put you to sleep or something when they do that or give you something so you don't feel the pain? I guess i won't worry about that untill i need a lung transplant.

 

[gstvixen]

My brother is finishing up his tests...so far he's gotten alot of x-rays, CT scans, bone density (which is just another x-ray), alot blood work, a 6 minute walk where he just had to wear his O2, have someone take his pulse ox every 60 seconds and make sure that he walked over 600 ft. in that amount of time (he did 848 ft.), and a full pulmonary function test. He doesnt have to get the heart cath, or a colonoscopy beacuse he is too young (21) and has never had any problems with anything else but his lungs and pancreas. The last test he has to do is his PFT, but our doctor is waiting till he feels better to do it. He has been in the hospital now since October 4 and doenst look like he will coming home soon, sadly.

 

[anonymous]

The heart cath. is not a major issue (I did this at my local hospital). I traveled accross the US on oxygen and spent 4 days at two centers running around for test at Duke and UNC. The poor schedules and running around strange centers was very tiring.


I am 54, 4 years out on TX with cepacia. If an old guy can do this, you young kids should have a cake walk with the testing.

 

[ClashPunk82]

You have to do a heart cath?? Oh man I didn't know this. Does it hurt.? Does everyone have to do this? Now i am creeped out. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Nicole 22 CF

 

[anonymous]

A heart cath. is put through the groin with some pain. They numb the area but the pushing in of the line can be felt and is not fun but the pain is controlled at the site and some meds on board. They do the heart cath. to see if in addition to the lungs you have heart damage and need a heart along with the lungs. I was 49 at the TX and they wanted to know all the organs I would need. The original lung TX's include the heart (easier to do a double lung heart TX). If you need oxygen and do not use it religiously, you can damage the heart.

I can assure you if your considering a lung TX that the heart cath. is a walk in the park compared to having your lungs ripped out and replaced. Post TX you will wake up with more tubes than orafaces (4 chest tubes, stomach tubes (GJ)(my case), NG tube, cath., and with no luck a trach. (my case) plus a really nice scar from under you arm pits accross the chest just under the breast). In the quest to breathe and live, a heart cath. is not a big deal nor should you reject a TX because of this minor proceedure. I would rather have a heart cath. than the repeated broncs.! Good news, some centers also will demand that you have sinus surgery pre TX (Stanford and Duke) and Duke will perform a stomach wrap if you have acid reflux. Duke test per and post TX for gastric reflux (I hate that test, I have had it 3 times).

CF 54 4.5 years post TX.

 

[JennaB]

What happens after the transplant?? Is it a long recovery? What all do you go through - is it a lot of pain? How long is one out of commission? Curiosity...

 

[anonymous]

My TX did not cause alot of pain. The center controlled pain very well. The recovery depends from a few months to 6-9 months dependent on complications. It has risk and some do not survive the hospital stay. You do not wake up with a warrenty card sticking out of your chest.

CF 54 TX

 

[anonymous]

to the 54yr old w/cepica...... you said post transplant??? i know someone on another list that cant find a hospital that will do transplant on him cause he has several stands of cepica...(if im remembering it all correctly) where did you have your transplant done????


thanks, melissa

 

[anonymous]

54wcf/transplant.. you said you had cepica where were you transplanted?

 

[anonymous]

Melissa.

I have a very good life post TX and downhill ski, whitewater raft, ride motorcycles, hike, going for an XC ski soon as I finish this post (my daily PT). I am very pro TX and have had luck past measure.

From my past and current knowledge the centers to call are Duke (my center) and UNC. Both listed me with cepacia. Pittsburg and Stanford will drop you just prior to TX if the bugs are multi drug resistent. If his genovar is other than 3, Duke would likely talk to your friend. As of last month, UNC (Chapel Hill) would take all cepacias. Call Duke / UNC and ask for the lung transplant department, than ask for a transplant coordinator. They will answer the question with current policy.

I live in the west in the mountains at 3,200 feet and the idea of going to North Carolina was just below having a bronc. Moved with three german shepards and my wife 2,700 miles on oxygen to take a roll of the dice. One of the best adventures I've had.

CF 54 TX cepacia (4.5 years out)

 

[anonymous]

<blockquote>Quote<br><hr>What happens after the transplant?? Is it a long recovery? What all do you go through - is it a lot of pain? How long is one out of commission? Curiosity... <hr></blockquote>

To answer this question, after transplant is different for everyone. I was off the vent in less than 24 hours, was sitting up and eating shortly after, and had very minimal pain. It feels like there is a tight band around your chest where the incision was and the chest tubes are kind of irritating. As long as the nurse stays on top of the percocet you should be fine. I was out of the hospital in nine days. I wasn't out of commission long at all. To be honest i felt great right away. I had bronchitis after the transplant and i didn't even notice it because i felt so much better than i did before! I'm about 8 weeks out of transplant now and am still doing wonderfully (Thank God). Now I'm doing things that I never imagined I could do before. I already started jogging and i exercise for about an hour everyday. I can laugh, walk, talk and shop all without coughing. So much fun! It is the best decision I've ever made and I'll even be able to return to school in the fall. Transplant is a serious thing, but it can be one of the best decisions of your life. Let me know if you have anymore questions that I can answer!

Margaret
double lung transplant 11/11/04

 

[RadChevy]

As far as cepacia and lung transplant. There are now about 5 centers in the U.S. that will do those with Cepacia.

As the man who is 54 with Cepacia and post lung tx, Duke and UNC are two of them.

UNC now is the only one who will do type 3 cepacia.

The problem with cepacia is that it can settle in the new lungs, or worse, go into the blood stream. So care has to be taken in cleaning the chest cavity.

Dr. Thomas Egan at UNC I think has done the most Cepacia patients in the world...if not the world, then the U.S. I am guessing he has done close to 50 patients and his success is very high.

If I can be of any help, please ask
luckylungsforjo@aol.com

Joanne Schum

 

[anonymous]

Joanne

I am uncertain if Dr. Egan (very nice sharp doctor) does have the record of cepacias. Toronto has a huge population of cepacias due to some infection control issues and likely has done more than UNC. Almost chose Dr. Egan for my TX.

The last genomovar 3 that Duke rejected after she moved to the area, was TX'ed at UNC. My understanding is that she did not live very long. Any truth to this "story"?

What centers will really consider cepacia other than UNC and Duke? Pittsburg told me they reject for TX is the bacteria become more resistent (guaranteed). Stanford has repeatedly droped cepacias after along time on the list, because of resistence. My CF doctor told me to not bother, he had several dropped at the last minute.