TX

[ClashPunk82]

Today I started my evaluation for the TX and man was it a looooong day. I had bloodwork, a CT scan a Sinus can, and X-Ray, an EKG, an esophogram, had to see a nutritionist and had a V/Q scan but canceled because by the time the nutrition appt came around I hadn't eaten all day and I was exhausted. I did so much walking I thought I was gonna pass out. The for the CT and Sinus scan they were backed up so I had to wait 2 hours before being seen. And my veins are so crummy and since I was so dehydrated from being NPO they couldn't get the blood. It was such a hard day!

 

[anonymous]

hey congrats! you made it through the hard part <img src="i/expressions/face-icon-small-wink.gif" border="0">. i just got finished all that and now i am on the list but not activated. what are your pfts? mind me asking?

 

[ClashPunk82]

Congrats to you too! <img src="i/expressions/face-icon-small-happy.gif" border="0"> And no I don't mind you asking they are about 25% right now. What are your PFT's?

 

[anonymous]

mine are low 30s, i am 25 and am just taking precautions i guess.. its a lot to consider. some days i think i can't take anymore of wheezing and coughing but then others i keep thinking of the 5yr post tx survival rate and i think i should wait as long as i can. who knows. i go to the best hospital in the world so i gues i will let them decide for me. catherine

 

[ClashPunk82]

Same with me. I want to be on the list because it's a good idea yet I guess I am still upset it has come to this so early on. I was really healthy like 3 years ago and then all of the sudden I took a turn for the worse. It's hard to digest so I try not to think about it too much or I will get overwhelmed!And try not to think about the survival rate, it really is variable with everyone. There are quite a few here that are 8 years or more post TX. It's scary but you gotta look at it positively too or we will go insane! LOL:! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[anonymous]

congrats and good luck!!!!! i'm getting mine in st. louis where are u getting yours at

Crzy_Dimon

3200 St. Louis

 

[ClashPunk82]

I'm in Bosotn so I will be getting it done at Brigham and Women's. And congrats to you too!

 

[anonymous]

Nicole,
I feel for you<img src="i/expressions/face-icon-small-confused.gif" border="0"> You HAVE had a rough day!
As far as survival rate goes, it's different w/ everyone & I was talking to a gal a year or two after she had a tx and was asking her questions and I asked her that one (about survival rates) and she said that most of the people she had met on the list at her tx center were older people and she said that that survival rate was for everyone lumped together, young and old, so she wasn't putting much credence into it.
Did you get a survival rate specifically for CF tx? As has been mentioned on this board on other threads, they are constantly making improvements in post tx care, so that should be somewhat encouraging to you.
Hopefully when/if you need the new lungs you will be glad you went through all of this and will feel so much better! Good Luck!

 

[anonymous]

Nicole,

Sounds like a looong day. Congrats as well as sorry (I think I read your notes on another thread that you expressed it was no reason for you to celebrate). I too went through all that testing (spread out over many days though) and just when I thought it was over, I learned I have to do a "left heart cath." I tell you this not to worry you but just so you are informed if your testing is actually over for now. You may wish to ask your doctors about that test (or not) as it is one of the factors in determining your lung allocation score (where you stand on the "wait list"). Again, I tell you this only b/c I hate it when doctors don't tell me everything upfront . . . You may or may not need to do it at this point - they may wait until they think you are closer or they may never need it! Good luck!

Jason 30 w/cf (FEV1 30% +/- 5%)

 

[anonymous]

Jason, I may be mistaken, but I think the tx center in St. Louis does not always do the heart cath. Some of that depends on your age, I guess they assume the younger you are, the less risk of heart probs.
Also, if you're young & you haven't experienced any heart issues that may play into it.
I think I would want this procedure done anyway just for peace of mind, but I am not sure if ALL centers do it.

 

[anonymous]

My test took almost 3 days at two centers (UNC and Duke) and I had the heart cath.. In addition I have been tested for gastric reflux three times with the 24 hour pH test. The test were exhausting and I had to fly accross the US on oxygen to get to the hospitals. Have you had a meeting with the surgeon, pulmonologist, and shrinks?

I do not concur that the test are the hard part.

Catherine, where is the "best hospital in the world"?

CF 55 TX cepacia (5 years out)

 

[anonymous]

May be a stupid question, but for CF 55 TX---do you still have cepacia?

 

[ClashPunk82]

Thanks guys for all your posts! Jason ya they kind of don't tell you everything when I went for the bloodwork they said oh we need a stool sample 2 urines and a sputum and we are taking 16 tubes of blood. I said woah no one informed me of any of that! <img src="i/expressions/face-icon-small-happy.gif" border="0"> But thankfully they let me take the sample cups home so I could do it in the privacy of my home! lol! And yes I do have to have a cardiac cath. The stinky part is just a few months ago I was told oh you don't need that but now they have changed it and everyone who goes through the evaluation has to have one. I was like oh crap! loll! Everything else I can tolerate but I am definitely nervous of that one! I just can't wait for it all to be over and done with so I can have a somewhat of a relaxing summer! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[tessa55454]

A hard day Nicole. Loooonnngg and boring in fact. I always think of crazy test days as marathon days. Although your specific situation is not like any regular clinic day.

I actually live in Jamaica Plain and work per diem over at the Brigham. Here is my email if ever interested in meeting up: tessamus@yahoo.com

oh..I hate being NPO. I think people sometimes don't understand how hard that is, especially being hypoglycemic. Do they want me to pass out? Sometimes I think they want me to, and then I have to argue with them because I don't want to fall over. Quite annoying....

After that long day I hope you treated yourself with something. I always do after a clinic visit. I pat myself on my back for living another 3 months, in fact i have an appt this week.

take care,
Tessa 27 w/cf

 

[anonymous]

regarding heart caths (taken from the Organ Procurement and Transplant Network website):

<i>Q: Must a heart catheterization be performed at least once every six months to obtain PA systolic pressure and pulmonary capillary wedge pressure for transplant candidates?</i>

A: No. Heart catheterization must only be performed once to obtain PA systolic, PA mean, and PCW pressure when candidates are first registered on the waitlist. Because heart catheterization is an invasive procedure, it is left to the discretion of the transplant team whether to perform this test again after the initial listing. If more frequent heart catheterizations are performed at the option of the transplant center, the transplant center may choose to update a candidate's PA systolic and PCW pressure on UNet, but there is no requirement to update these two variables every six months.

Candidates who are currently on the waitlist, and who will continue to be transplant candidates under the new lung allocation system do not need to have a new heart catheterization. Their transplant center may use the heart catheterization data that was acquired when the candidate was first put on the waitlist.

Not sure if all centers follow the above but I interpret it as everyone that gets listed needs to do a heart cath at least once.

Jason 30 w/cf

 

[ClashPunk82]

Tess that's awesome you work over at Brigham. I like it a lot over there. And ya I hate being NPO also since I have diabetes it's usually not a good idea to go 12 hours without food or drink! <img src="i/expressions/face-icon-small-tongue.gif" border="0"> And the thing is when you are NPO it seems like a bad idea since you will be dehydrated the next day. And that would be fun if we met up sometime! <img src="i/expressions/face-icon-small-happy.gif" border="0"> When I got home I took a nap and then the next day went to my boyfriend's house. It was our 4 anniverary so he took me out to eat and catered to me all day! It was fun and relaxing!! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

 

[anonymous]

catherine here..i go to johns hopkins in baltimore. i think, along with many people that this is the best hospital..i guess because it is all i know that i don't have much to compare it to but i sure like it. i have never had any complaints! i have a great cf doctor and the tx team is pretty cool too!

 

[anonymous]

I do not think Johns Hopkins was or is doing cepacias so the "best" is subjective if they think your high risk and refuse to consider you for a TX. Perhaps I'll try Hopkins next time.

Yes, I reinfected post TX because I had pneumonia in my "new lungs" shortly after TX and the cepacia from the sinus and existing trachia likely reinfected. Currently, on the last bronc., cepacia was not found (5 years out at that time) in my lungs. The sinus may be another issue, yet are not cultured. Some lose cepacia post TX.

The blood work will go on for the rest of your life with at least 3 tubes per month and on clinic visits the 8- a bunch taken.

Your considering a double lung TX and worried about a heart cath.?? This may come as a shock, the heart cath. is nothing compared to a TX and the call to "come on down" will be more of a concern and head trip then a scheduled cath. Heart cath is not something that you will want to do weekly but is not that tough other than some minor pain and discomfort for a few days. Ask for meds if your concerned.

Nicole you have youth on your side, will recover very fast and not being a senile old guy is an advantage.

CF 55 TX cepacia

 

[anonymous]

Ypu have to start somehwere. I don't livd in Boston but that is where my support is. What Tx place there would you begin with, and why?