Transplant Preparation

[andrusjc]

My wife is preparing for a double lung transplant at University of Pittsburgh Medical Center, we are in the Chattanooga, TN area so she will have to relocate in late December. I have to stay home to work, I plan on flying to Pittsburgh as soon as I get the call that she is going into surgery. Does anyone who was or is in a similar situation have any advice how to prepare for the call? About how long does this surgery take on average (how much time do I have to get there)? Do any airlines offer a discount fare for me to travel to Pittsburgh for this medical emergency? Can I buy a ticket now and just hold it until I need it (first flight available)? Any help would be greatly appreciated?Jesse

<b>Question for anyone who has gone through the transplant procedure:</b>

What should I expect when I am able to see her for the first time after the surgery?

 

[Emily65Roses]

If you want to know what to expect to see.... check out these photos of a girl I know who got a tx in June. She posted pics within days so we could all see. It was great, she was very open with us all. But I warn you, they are graphic.

These were taken right when she got out of the OR:
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These are of her chest tubes and the incision:
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These are of her taking her first breaths with her new lungs, no ventilator:
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[JennifersHope]

Holy Moly... Those are great pictures..they were so good.. I fely like I could feel the pain from the chest tubes myself.....Amazing....How long ago was her transplant? Is she doing good now?

Thanks for posting them Em...

Jennifer

 

[supermanfan]

WOW Emily... I can't see the pictures so I'll have to check them out on my home computer. I never thought of taking pictures. My one friend had his transplant video tapes for teaching... I never got to see it unfortunaltely.

Anyways, back to some of the questions... as far as airlines you might be able to buy an open ended ticket which allows you to use it at any time (definitely need to check out black out dates though).

As far a length of surgery, mine took nine hours... they said they had to realy clean out my chest cavity... with some scaring the tissue was stuck to the cavity walls, but it varies on the person. Just go along with your normal day to day activities.. it will drive you nuts if you think about it constantly. I myself got the call when I was already in the hospital, so when the nurse came and woke me up to talk to the transplant center I then had to call my husband who then called my parents... My doctor called an ambulance for me for transport, and I had my transplant on Mother's day.

I was up walking on my third day, and out of the hospital after 10 days... That was almost 9 years ago, and I've never had any problems or health issues.

Good luck with everything <img src="i/expressions/rose.gif" border="0">

 

[Emily65Roses]

It was this past June and she had a rough start... she was on chest tubes for more than two months, but she's been out for a while now and is doing well, last I heard. Enjoying life, all that.

 

[Lilith]

Oh, man...just looking at those pics...I thought I was in pain when I had my PORT placed!! Definately reconsidering my transplant desicion now...

 

[IG]

Yup glad I didn't have [and still don't have] boobs when they did mine.

Time of surgery eh bout 6-7 hours for me, like previously said it varies from person to person.

About the open ended ticket thing, nice idea.. I'd call the airlines and explain your situation see if they can't be a little more helpful in anyway. Or orbitz or something, get a little recognition from those travel companies.

As for the first time after surgery and seeing her, I'd expect her to be vented and groggy. Probably won't look the best, and have a bunch of tubes sticking out of her [like the pictures show] but breathing and alive.

 

[EB24]

I wonder what it feels like to take a huge breath and not have to cough or anything. I used to know when I was younger but now I have forgotten.

 

[anonymous]

Jesse-
You can't really prepare for the call. Alls I can say is distract yourself. My mom and I relocated to New Orleans when I was waiting for my transplant and my dad was stranded in new jersey to continue to work. We waited five months for the call and my dad basically called the airport as soon as he got word that we got the call. The thing is we waited in the hospital for close to nine hours before i actually went back for the surgery. If the donor is potentially donating a heart as well there are more tests that need to be done with the recipient and donor so it puts the harvesting of the organs back a little. My dad actually did not book his flight to come out until they made the incision since there is always a chance of it being a dry run.
I think the pictures do a great job of saying how a person looks after transplant. My doctor told my mom that as bad as she thought i was going to look it wasn't half as bad as what she was imagining. My eyes were very glossed over from the stuff that they put on them during the surgery, I was restrained to the bed so i wouldn't pull the vent out, my tongue was hanging out of my mouth becuase of the vent, and the first couple hours after the surgury i would randomly have a spasm (that is from your body waking up from all the sedation drugs).

Lilith~
Don't let those pictures discourage you. I've said it plenty of times, everyone's pain tolerance is different. I was actually not in any pain aside from feeling like a belt had been tightened around my chest. The chest tubes dont' hurt coming out and most of the time they don't even stitch them up. The only time the chest tubes bothered me is when i had to roll over on them (for bed baths). With a great nursing staff and a keen ability to watch the clock and take percocet every four hours on the dot, you can control the pain.

Margaret
Double lung tx. 11.11.04

 

[anonymous]

Monday November 28, 2005 3:00 PM


My wife is preparing for a double lung transplant at University of Pittsburgh Medical Center, we are in the Chattanooga, TN area so she will have to relocate in late December. I have to stay home to work, I plan on flying to Pittsburgh as soon as I get the call that she is going into surgery. Does anyone who was or is in a similar situation have any advice how to prepare for the call? About how long does this surgery take on average (how much time do I have to get there)? Do any airlines offer a discount fare for me to travel to Pittsburgh for this medical emergency? Can I buy a ticket now and just hold it until I need it (first flight available)? Any help would be greatly appreciated?Jesse

Question for anyone who has gone through the transplant procedure:

What should I expect when I am able to see her for the first time after the surgery?

-------------------------
Jesse


Jesse,

I also had to relocate 700 miles to get my transplant. It is so hard to plan, and the best laid plans change, because the transplant never arrives like you plan.

Most times when a patient gets the call for lungs, it takes some hours for the surgey to begin, so flying there should work out okay and most time you have hours to spare and end up sitting around. When donor recovery is made there are many teams there to recover organs and the heart and lungs are the last to be taken so they can circulate blood and oxygen to the organs to keep them viable.

Call some airlines and question their policies and choices. When I had my tx, they did have a discount for airline, not sure that exists anymore.

Surgery can take 4-13 hours.... just all depends on what they find, and how things progress. My surgery was 12 hours.

You probably will be allowed to see her quite soon after the surgery ends. They put them in a recovery area for a short time, then moved to ICU. I saw my sister after her transplant about 1 hour after the surgery ended. When I had my transplant, my brother and boyfriend saw me about 1/2 hour after the surgery ended. Remember you are seeing them, be prepared for the tubes and machines, and also be prepared that they may not be awake yet or know what is going on completely.

Who is staying with your wife while you are back home working? She must have a caretaker right?

JOanne Schum
luckylungsforjo@aol.com

 

[andrusjc]

Everyone,

Thanks for your thoughts and advice, the photos were very helpful! Not as bad as I thought, I know we will make it through this!

JoAnne.

Thankfully Martha's Mother will be with her before and after the transplant. I am going to try to fly up during weekends while she is waiting (they say she will not be waiting long). I plan on spending several weeks with her during recovery, but I will have to return to work when she stabilizes.

Jesse

 

[anonymous]

Emily,

May I post the web pages of your friend at my site for pre folks to look at?
They are great.

You can email me
Joanne Schum
luckylungsforjo@aol.com

 

[supermanfan]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Lilith</b></i><br>Oh, man...just looking at those pics...I thought I was in pain when I had my PORT placed!! Definately reconsidering my transplant desicion now...<hr></blockquote>


I don't mean to be rude about it, but think about what you are saying... you are saying you'd rather give up life than have a little pain, and that's if you have pain... you would be on a Morphine drip IV after the transplant so I highly doubt you will feel pain unless you have some resistance towards pain killers, but morphine is very powerful!

 

[supermanfan]

<blockquote>Quote<br><hr><i>Originally posted by: <b>EB24</b></i><br>I wonder what it feels like to take a huge breath and not have to cough or anything. I used to know when I was younger but now I have forgotten.<hr></blockquote>


It's the most amazing thing that any normal person without lung issues could never understand since it comes naturally to them... It's amazing!

 

[anonymous]

Anyone ever had any other type of drip other than morphine? I had morphine for a hernia surgery & it made me throw up big time & I don't think that's something you would want to happen post transplant.

 

[Lilith]

Supermanfan, I understand what you're saying, but considering the fact that I've never seen anything like this or had to deal with something of this magnitude, you have to understand that I'm more than a little shaken up.

Also, pre-op, is there anything you can do to help you chances of surviving/recovering/having no complications?

 

[anonymous]

There is never a 100% chance that you will have no complications. The only advice that I can give you Lilith is to keep your weight up at a healthy level, and work out. Keep on excercising no matter how hard it is. Keep yourself in shape. I was walking (slowly) on a treadmill up until the day before I got the call. My doctor said I was very toned and in shape for a CF person. This made the recovery a lot easier.

Margaret
Double Lung tx 11.11.04

 

[supermanfan]

Lilith... I don't think most people have seen such things, nor would they be ready, but I've always thought that people with CF are more rezilliant and stronger people. Those pictures are nothing... just think of people who are in horrible car accidents, or injured in wars... the things they go through is far worse, especially when you are talking loosing a limb...

You mustn't put it in your head that you'd rather die then go through a life changing ordeal... it really isn't a big deal. You are in no pain, and you don't have to take pictures, or flash yourself to people so they can see. I urge you to just rethink it. I'm sure your loved ones would want you to life. <img src="i/expressions/rose.gif" border="0">