MANY Questions About Transplants

[Lilith]

Alright, I know this has probably been talked about a lot, but at this point I just have to ask. Seeing the post about Transplant Preparation and seeing those photos has put the fear of God in me, so to speak.

I expected pain involved, but I never expected...well, I guess I was stupid to expect anything less, but now my viewpoint has changed. I'm glad Emily posted the photos. I think I needed to see them, but I also wish I hadn't. I'm scared to death. I hate having to get IV's, let alone. I can't imagine the pain of all those tubes and the scars and the IV's in the neck and the vent... Death is actually looking less painful, to tell the truth. I think death actually scares me less than having to go through that kind of hell.

Am I overdramatizing? Maybe. But as I said, I'm scared and probably not thinking rationally. My doctor has twice mentioned the fact that I should start thinking about what I want to do as far as signing up for a transplant. My FEV1 is hovering around the low fifties, I'm not even on a vent yet, and I don't feel that ill, but the fact that it's been mentioned is making me worry that perhaps I'm not as healthy as I think, and closer to this choice than I'd like to believe. So do I let myself die and probably make my family wonder why I didn't do it, or do I go through the agony and risk death anyway? I'm even starting to think about how I would say goodbye to my family before I enter the operating room, in case I don't make it... How do you do something like that?!

So, after all that, here's my questions for those of you who survived your transplants; Was it worth it to you? Was all that pain and stress worth the second chance? How much pain were you actually in? I don't tolerate pain well at all (ironic for a CFer, huh? You'd think I'd be used to it...) Did they have you on enough morphine that it didn't matter? How hard was it to communicate with those around you because of the vent (i.e. asking to bump up the morphine!)? How long were you hospitalized and how long was your total recovery time? What kind of complications, if any, did you face?

I'm at the point where I think if I continue to think about this I'm going to put myself back in the hospital just because of stress. I don't want anything sugar-coated, either, please. I want the honest truth. Because the way I feel right now, I don't know what the hell I'm going to do...

Also, for anyone who's read this rant and hasn't had a transplant but is just as shaken up, please respond as well. It would be nice to know that I'm not alone with this.

Thanks everyone.

 

[Emily65Roses]

You're not alone. When I was keeping up with Steph's transplant and saw those pictures, I damn near lost my mind. I was like AHHHHHHHHH there's no way I'm doing that. The incision thing I think I can handle, I've had a few, I know they suck, but I know what to expect. So I can deal. The thing that really to no end creeps me out are the frickin chest tubes. THEY WERE HUGE!!!!!!!!! And for a while after I saw those I was like hah no way in hell am I getting a transplant. But again, after shock wore off, and common sense came back, it was like "oh yeah well I know I'm going to want one once I need it and I know I'm going to try for it." You've just got to make sure that once you get there you've got a REAL good support system around for you.

 

[IG]

Quite honestly when you say 'for those of you who survived your transplants' it makes me think that you've heard a lot of the propoganda about tx and not living through the operation etc. That has to be the first thing to go. Very rarely do patients die mid-operation. You'd have to talk to your own system to find out their specific stats. Let me tell you this <b> there is relatively <i>no</i> pain involved</b>. I have a very low pain tolerance.. but this was bearable. You do not have to feel anything, they give you drugs for that. For me the worst pain I felt was like a dull throb, that I sometimes get when I have a headache, easy enough to take care of ask for more pain meds. It probably would have been better if you had not seen that picture, I was completely ignorant about the chest tubes until I woke up with them. For me they never hurt, the scar was not huge, and it was the more bearable part of the whole ordeal. As for 'should I risk it or not?' That's something that everybody has to decide for themselves. But honestly why waste what might be a wonderful opportunity for a second chance at life because you're afraid of a little pain. Communicating after tx, that's probably something that you should work out with whoever is with you... hand signals, writing, something... It was a little frustrating to try to get my point across to the nurse that I wanted my penguin stuffed animal. I was not a happy camper when I got it across and they said no. Luckily my grandmother was there soon after that and I could get my point across to her. That was while I was vented, I don't remember much, I was in and out of it, needless to say the drugs work well. I was hospitalized longer than necessary due to an allergy to a rejection drug [very rare apparently] and that caused me to seize a few times post op. I was put out for a week and then allowed to wake up. Total recovery time... they had me out of the hospital within a week of waking up. I was back to full strength about 2 weeks after that. [considering I had lost most of my muscle mass previously that was pretty good] Complications? Some rejection within the first few months... normal though, switched my meds and it went away. Everybody I think when at first considering transplant blows it out of proportion.. just calm down and think about it. If you have any more questions feel free to ask. Also if you want to see pictures of 2 years post op scar then check these out.

<a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/deviation/22711174/
">http://www.deviantart.com/deviation/22711174/
</a><a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/deviation/22711106/
">http://www.deviantart.com/deviation/22711106/
</a><a target=new class=ftalternatingbarlinklarge href="http://www.deviantart.com/deviation/22710898/
">http://www.deviantart.com/deviation/22710898/
</a>
if you have anymore questions please feel free to ask.

 

[anonymous]

Lilith and anyone else who is scared~
Transplant is a completely personal decision that can only be made by you. But knowing what to expect during the surgery and afterwards helps you make those decisions much better. I remember right before my transplant i privately e-mailed Candice and asked her probably every question i could think of regarding transplant (thanks again for that Candice).
With that said, was it worth it....ABSOLUTELY. If you are worried about pain it seriously is not bad at all. I was expecting to be in massive amounts of pain...there was relatively no pain. Like i tried to explain before, where the incision is feels like a belt was tightened around your chest. The chest tubes only hurt if you aggravate them. And remember you can not see half of that stuff that is in you that you see in the picture. I never remember being able to see the chest tube. They don't even hurt coming out (my sister did pass out while watching it which was so funny). I did look at the chest tube wounds once i was able to get out of bed and spongebathe myself. Its just a really deep cut...looks almost like a stab wound. I was really good at managing my pain. Since I had nothing else to do i literally watched the clock all day and about a half an hour before my meds were do I would call the nurse and make her have them ready. That way as soon as the four hour mark it i popped those two percocets and didn't know the difference. I was only on the vent for a couple of hours after the surgery had ended and was pretty heavily sedated at that point. I was able to communicate and tell the nurse that I wanted the vent out...(she told me that that was a nice story but no). You are lightly restrained so that you can't pull the vent out. All of those ivs that you saw in the picture are put in when you are asleep. You have no idea that they are going in and you feel no pain. The catheter, about 5 ivs, a central line, and the vent were all in when I woke up.
Recovery: everyone is different, I woke up thursday afternoon with the vent out, i was sitting up and eating by friday, i had two chest tubes removed saturday, i went to the transplant floor monday where one more chest tube was removed, by wednesday the last chest tube was removed, i was climbing a flight of stairs and walking around the floor with ease. I went home started going to rehab three days a week and gained all of my strength back. I was in New Orleans for four months post transplant to recover completely. I had two bouts with bronchitis, slight rejection, and an airway narrowing. All were resolved easily.
Today: I'm a normal 22 year old aside for all the meds i take. I look normal, I work hard at school, play hard, and am at the gym everyday. My life the last year has been amazing and I wouldn't trade it for anything. I would do it again in a second if I had to. It is so nice to be able to walk around my college campus with my friends and to not have to think "if i go out tonight is there going to be somewhere for me to sit" "am i going to have a coughing attack" "Are there going to be hills"...it is wonderful to have my freedom back.

If you have questions and want to e-mail me privately feel free...lapsansm@lafayette.edu

Margaret
Double lung tx 11.11.04

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Lilith</b></i><br>has put the fear of God in me, so to speak.<hr></blockquote>

No kidding, Lilith. I'm pretty brave about pain, but I think I'm going to have bad dreams tonight.

I'd like to add a question or two to yours. First, I see people here who are nine or ten years post-transplant. To me, those are truly amazing stories. I wonder if anyone knows about the longest-lived transplant survivors (with CF, of course). I've read about a guy 14 years out, but mostly I see rather depressing one, two, and five year percentages. Still, what the hell -- why not think about the best-case scenario, eh?

Second, after transplant, how "normal" a life do people feel they lead -- or, to put it another way, how restricted do they feel by their maintenance and the potential for complications? I realize these things must always be weighed against a person's pre-transplant condition and outlook, and that they are completely subjective. I've read various accounts about this, including a few on this forum, but any new thoughts here would be much appreciated.

Just FYI, I've had a steady 33 percent baseline for almost five years now. Though living this way is not entirely pleasant (as you all know), the odds tell me not to try to get listed until there is some decline. But the thought of it does keep me up nights. A part of me, of course, is scared without feces about it. But another part says that even one long bike ride through the hills of Marin County would make it all worth it.

Q

 

[andrusjc]

When I saw the photos (which helped me a bunch), I yelled for my wife Martha so that we could look at them together. We both agreed that it did not look as bad as we thought.

Martha is very familiar with the chest tubes, she had to have them due to a collapsed lung that occurred during the installation of a new port. Because this was an emergency situation they installed the chest tubes on the spot no anesthetic! She has a very low tolerance for pain?she nearly passed out while getting a very small tattoo on he shoulder?she survived the chest tubes OK although I was told she had some very unpleasant words for the surgeons (I was not there at the time)! I was with her while she had the chest tubes in, she did not complain of them bothering her at all (and believe me, I get all the complaints). The removal of the chest tubes must have been a piece of cake because she does not remember much about it.

That is probably not much help to you, but in our case if Martha chooses not to get the transplant she is going to die in the not so distant future. Martha used to be unsure about the transplant, but as she has gotten sicker her quality of life has become really shity, she is uncomfortable all the time and suffering very much. It was easy for her to say she did not want a transplant when things were going well. Now days she can not wait for the chance to do the simple things like walk up a few stairs, change her cloths, etc. without turning blue! Even if it?s for a short time.

I have always supported Martha?s decision to do what she wants to do, being a little selfish though, I am glad she going ahead with the transplant, but if she chooses not to do it how could I be upset with her?

Jesse

 

[anonymous]

hi..? for those who had transplants, how much prednisone were you on? i was on 60mg for a month for another reason and gained like 20lbs. i was miserable. anyone have the same? i am on the list now and i don't know if my docs are being honest with me because they know how much i hate it. thanks

 

[JennifersHope]

I am on 30 mgs of steroids a day for another reason as well. Yup I have gained weight in my belly and face and lost weight in my butt, legs and arms...plus when I am on higher doses it makes me moody.. and I won't even get into it again what it has done and is doing to my body but it keeps me alive.. .so I will happily take it....

I know someone right now that would take a zillion mgs of steroids a day if he could get a transplant, so I don't think it should be something to stop someone one from being transplanted....but that is a personal choice...


Jennifer

 

[anonymous]

The highest dose that I was on post transplant was 40 mgs. I had the moon face and i gained weight, but it definitely wasn't water weight. I'm very proportioned. My swelling in my face has gone down, I have my slender face back. My stomach carries a little extra weight but nothing that isn't easily hidden with the right type of clothes.

To answer another question, I do not feel limited by life after transplant. I feel the complete opposite, completely liberated. I am able to do things now that I haven't been able to do in years. I'm looking forward to even playing flag football in the spring for intramural sports and going skiing in colorado. The things i can do now are boundless. I am even planning on getting a full time career and living in the city when i graduate. I am determined to do everything that I have always wanted to do and having a full time job and supporting myself while living with my friends in the city has always been a top priority.

Margaret
Double Lung Tx 11.11.04

 

[Lilith]

Thanks, everyone for your responses...

I don't know. Even with all the positive feedback, I'm still afraid. I suppose the thing that gets me the most is that I swore up and down ever since I was able to understand this disease that I would NEVER die in a hospital bed hooked up to ten different machines. I even signed my living will stating that I would never want to be kept alive through artificial means. Seeing those photos put all kinds of horrors into my head. I don't want to end my life on an operating table. I don't know, I just see a lot of irony in that if I was to die in the surgery or post-op from complications, with all those tubes...

And maybe I'm vain, but the thought of all those scars doesn't make me happy, either. Even if I were to survive the operation and be able to breathe again, I'd be self-conscious for the rest of my life. I know my boyfriend wouldn't see me any differently, but I'd be afraid to even wear a bathing suit around him. Plus there's the knowledge that you've got someone else's body parts inside you that makes me squirm. I'd probably feel like Frankenstein's monster for a while (no offence to anyone, of course, it's just one of the things I've thought about). I'd never even considered the steroids and what they do to your body, or the rehab...

I'll probably feel differently when it comes down to the wire and it's either that or death. But right now I'm just so scared of the entire situation... Like Q, I'll probably be having my fair share of nightmares for a while...

~BTW, Candice:
Thanks for sharing your photos, too. Nice DA gallery, by the way.

 

[IG]

I know this complete <i>nut</i> that's been 9 1/2 years post double lung transplant. He might post later <img src="i/expressions/face-icon-small-wink.gif" border="0">

What's my take on the restrictions? I don't feel restricted at all I live a normal life. I'm in college, in a sorority, plan on going to law school one day. I can't eat grapefruit, I won't voluntarily swim in public pools, etc. Do they limit me? No, because I don't come up against that very often. I don't feel limited, of course I try to avoid sick people like the plague [sorry for that -_- bad pun] but limited... no.

I was on 40 mg of prednisone, hated the weight but the longer you have it the easier it is to deal with it. Plus it looks good after they take your levels down... don't feel like you could eat a whole horse I mean..

 

[bdchevy]

Hello,
First off, I'm the "nut" that Candice is refering to. Yes I'm 9 1/2 years post tx from UPMC in Pittsburgh , PA.
Ok, back to the questions, the pain as far as my tx went was ALOT less then I expected. As someone posted.. the chest incision did feel like a belt tightning around chest.. was restricting to deep breathe. The chest tubes were more uncomfortable then painful. I was not use to sleeping on my back till then.. can't roll around with those things. The worst pain I had.. was back pain.. man that hurt... but those percocets sure do the job.

Ok now the good part of transplant and post tx living. As i posted i'm 9+ years out and in the most part... been real healthy.. illness free. I don't work(long story) and that leaves time to travel and do the things I couldn't do pre tx. As far as restrictions.... course stay away from sick, coughing people. I'm not afraid to be in groups, nor swim. Bums me out no grapefruit eating(interfears with anti rejections).

On the issue with pred. for some reason.. that was a worry for me.. Me being so skinny pre tx.. I was worried bout "moon face". I guess i did swell up some right after tx. But it went dn fairly fast. I was happy .. real happy over the weight gain soon after tx.

On Pfts, pre tx.. mine was 18% and 40's%. My last pft were high 80's, low 90's.

ok so is the transplant worth it?... the scar, chest tubes, back pain, long hours staring at ceilings, all the meds?. YES it was worth it all.

Barry 44cf, 9+ years post tx , UPMC

 

[anonymous]

i havent actually looked at the photo's yet, and now i dont really know if i want to, but justwanted to say lilith i have always been more scared of getting a transplant than of death. i know it seems werid but its the truth. last year a friend of mine had a transplant and died a bit later due to complications- this just scared me even more. its such a personal decision though, and i've also been spoken to about going on the list but i guess i wont know how i feels until its a real possibility.

Shauna 21 w cf (new to the site, will get a login soon i promise!)

 

[anonymous]

So, after all that, here's my questions for those of you who survived your transplants; Was it worth it to you? Was all that pain and stress worth the second chance? How much pain were you actually in? I don't tolerate pain well at all (ironic for a CFer, huh? You'd think I'd be used to it...) Did they have you on enough morphine that it didn't matter? How hard was it to communicate with those around you because of the vent (i.e. asking to bump up the morphine!)? How long were you hospitalized and how long was your total recovery time? What kind of complications, if any, did you face?

Lilith,

In your email you said "how do you do that?". Well I guess the same can be said about dying from CF lungs... how do we do that... .some do, some don't.

Was it worth the pain and stress? Yes for me.. As far as pain, there is some pain but the centers know that if they do not take care of the pain, you will not recover so fast and you will stay in bed. Pain management is excellent in most centers.

Pain tolerance, I have pretty good tolerance, but I was still frightened of the pain I might have.

As far as talking to your family... there are many ways to "talk" other than using your mouth. A wipe board is great, paper and pencil, hand signals, feet signals... after all you will not be the first to undergo this surgery, and not the last and we who have had it and still enjoying life, are walking, talking and survived it.

I also wrote a book : Taking Flight - Inspirational Stories of Lung Transplantation. It is 265 stories of people who have lung tx's around the world. I am guessing about 70 of them were CF people. It tells about what the surgery has done to improve their life, how much of a success it was and thankful to the donor family they are.

If anyone is interested in the book, let me know... the price through the publisher has just gone up, but I still have some available at the old price.

How long was the recovery and how long of a hospital stay? Well it all depends on complications, lack of complication and how you progress. They say the better shape you are in pre tx, the quicker the recovery, so that is why working out pre tx is so important. I was in patient for 72 days, due to complications. The average stay is 7-14 days. Recovery was slow sometimes, then it would pick up.

Now post tx 8 years, I am able to do whatever I like, barring a few "risky" activities (germ reasons).

If you have any questions, or want to know more about Taking Flight, email me
luckylungsfojo@aol.com

Joanne Schum

 

[anonymous]

Q,

The now longest survivor of lung tx is a man in Texas who is 18 years post lung tx.

As far as the longest living CF patient, I am going to guess is it about 16 years. Not definite of that, but seems that is right.

Many of my post lung tx friends with CF are about 10-12 years post tx, so we are doing well. I am now 8 years post tx.


Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I had surgery 10 years ago when I was 12, that was a lobectomy, so it involved chest tubes, a huge scar, etc. I must say that I feel lucky to have already experienced all that, so that part of the transplant doesn't scare me nearly as much as some of the other things. (i have cepacia, so that part scares me) I have two chest tube scars on my left side and really they weren't bad. I had to have chest tubes for over three weeks because there were some drainage problems, and at first thoguh i was stuck to a hospital bed, they let me walk around the hospital garden one day, with my mom just carrying the chest tube boxes! the painkillers HELP. i was wide awake when they took the chest tubes out....you just breathe all the way out and then they pull them out really fast. hurt but kind of like the quick pain of pulling a bandaid off...

i have not had a transplant but just wanted to put my two cents in about the chest tubes, incisions, etc. i think the actual pain post any surgery is not so bad simply because of all the meds.

caitlin

 

[mustangmousa]

Hi, I'm Martha, Jesse's wife, and I'm getting a transplant in the next couple of months at UPMC. The pics helped alot! I saw them and thought - that's not so bad, I can deal with that! But it took me a LONG time to get here. I was terrified of getting a transplant and my worst fear was pain, because I am such a wuss! Now, I'm not worried much about that anymore, but I am scared of rejection and complications - basically of dying. But if I have even a short amount of time where I am healthy and can enjoy life, it will be worth it to me. I wasn't able to accept transplant until I got pretty sick and was unable to do even the most simple things. And what helped me the most was talking to people who have gone through it and let me know what to expect. I'm still scared, but excited too.

Martha CF, 30

 

[Lilith]

Well, after talking with my mother (who works at the VA hospital in Tampa, so she sees this kind of thing every day) and my boyfriend (who will support me no matter what), I've come to the conclusion that I'm probably overreacting, seeing as how the reward for all that mess is life. It's nice to hear some encouraging stories from all of you instead of just the bad ones, as Candice said. I really appreciate being able to come to this forum. So thanks a lot, everyone <img src="i/expressions/face-icon-small-happy.gif" border="0">

I'm still terrified, and I'm a pessimist so I'm sure that doesn't help, but if I'm at the point where I'm going to die anyway without it, I suppose I'd rather take the gamble and try it. But I'll make damn sure that they give me painkillers 24/7, and knock my butt out when they pull out all that crap! I think I'd literally faint if they don't.

I'm not even going to start discussing tx's with my doc until January, and if I start exercising more maybe I can put it off for at least a few years. But I will tell you one thing...this has really made me want to do my therapy every chance I possibly get!!

Oh, and congrats to all of you who've had successful transplants and those of you who've made it on the list! I know that's an accomplishment just in itself!

 

[anonymous]

Candice,

May I post your web site of your tx at my site so that others may check them out? They are excellent.

You can email me

Joanne Schum
luckylungsforjo@aol.com

 

[supermanfan]

Everyone... I think you are all freaking out over nothing... you never feel anything. Once you wake up you are on IV morphine... The only issue I had was one morning I woke up and one of the dranage tubes happen to get shifted and was hitting a nerve... they gave me vicotin, and when I wouldn't go away they gave me a syringe with morphine in it so I could take it when needed... then next day the dranage tube came out... no big deal... Really, you are freaking out over nothing. What you have to ask yourself is if you'd rather die from a horrid disease, or live with new lungs. Plus, just remember that CF patients actually have a higher tollerance for pain.

Don't freak out, and let the pictures change your mind of going on the transplant list.