Immediately after a transplant

[ladybug]

Hi!

I just thought of some questions I've had about transplants and thought it a good time to bring them up with all the attention to "Deal or No Deal". If you'd had a transplant, I'm interested in knowing how everything goes immediately after you are coming out of anesthesia?

For example:
Do you feel pain or are you too drugged up?
Are you alert enough to know who is around you and maybe communicate with them in some way?
Do you get violently ill from the high doses of anesthsia and pain meds?
Do you remember any of it?
When are you less "foggy"? How long does it take to become more alert and do things such as laugh and smile and talk?
How long until you can eat? Do you feel hungry or anything when coming out of anesthesia?

Just some questions I have always kinda wondered. I'm not near tx, but know some people who have been. Just curious what everyone's perspective on it may be.

Thanks! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Claire17]

My transplant was 7 years ago...

Do you feel pain or are you too drugged up?
--Yes, I felt pain. It hurt a lot! When I first woke up I remember pushing a button to get pain meds, but it wasn't relieving me, because it would only give a dose every half hour, despite how often I pushed it. They adjusted the meds, a day passed, and I felt tons better. Coughing hurt, but they made me do it ASAP, by holding a pillow in front of me to support the chest and sternum.

Do you get violently ill from the high doses of anesthsia and pain meds?
--Not violently ill, but the drugs did have an effect, mostly on my mind. For example, at one point I hallucinated voices--I thought there were people talking over the hospital paging system constantly. Also, one of the side effects was anxiety. I just didn't feel quite right in they head, and wasn't prepared for that aspect.

Are you alert enough to know who is around you and maybe communicate with them in some way? Do you remember any of it? When are you less "foggy"? How long does it take to become more alert and do things such as laugh and smile and talk?
--I had the transplant on a Saturday. Things looked good, but the next day they opened me up again for bleeding. I don't remember anything until Monday, a day after the 2nd operation. Starting on Monday, it was a progression. Before I really woke up, I remember people talking to me, but I couldn't open my eyes. Next, I was able to write things like 'thirsty' or 'hot', but I wasn't really with it. Then, I remember them pulling out the vent, and I was finally awake, talking, etc. That whole process took about a day or day and a half. Right away they made me walk.

How long until you can eat? Do you feel hungry or anything when coming out of anesthesia?
--I don't remember much about the food. I don't remember being particularly hungry.

I think that covers your questions, but here are some other details: The chest tubes were crazy. I had 4 large tubes that drained fluid directly from the space around my lungs, connected to 4 briefcase-sized fluid containers. They were always tangled and big and annoying. Going to the bathroom was a huge chore. I hated them, especially because they were in so for so many days, and I was awake enough to be really cranky. I remember feeling so free when I only had one left! I won't lie--the first week was rough. I felt like I had been run over by a truck. But after one week, I was out of the ICU and off oxygen. I remember feeling disbelief when my doctor told me to stop the oxygen at night. I was scared, but I slept through the night and woke up feeling good. After two weeks I went home.

I hope the details don't make anyone anxious; everyone's experience will be different. Plus, I doubt that sucky week would be enough to intimidate someone with CF from getting a transplant, if that's what they want. Before I had mine, I didn't want to know how hard/easy other people's transplants were. I didn't want to compare myself. But for more normal people, it's good to have an idea what you're about to face. So that's my two cents.

 

[IG]

Do you feel pain or are you too drugged up?
Too drugged up. After I was out of anesthesia (long story made short, I had an allergic reaction to a med and they put me out for a week after the tx) there was pain but the best way to describe it, for me, is a dull throbbing ache. It wasn't like somebody cutting you, it's like somebody hit you and you have a bruise under the skin that you can feel.. but not really feel.

Are you alert enough to know who is around you and maybe communicate with them in some way?
I got out of anesthetics pretty quick before I had the allergic reaction (enough to have blood gasses done and then give the tech the finger when she said 'now that didn't hurt now did it') so yeah I was pretty awake and coherent, and communicating. I don't think the tech appreciated the method of communication though.

Do you get violently ill from the high doses of anesthsia and pain meds?
Nope.

Do you remember any of it?
Nope. Well the tx? Still no. Post-tx drug phase? I remember very little most is just a blur that lasts for about 5 minutes if I really think about it.. probably covers 1 1/2 days of coming off of high powered anesthetics.. Which was very very interesting. The drugs they give you can make you see some really interesting things.

When are you less "foggy"?
About a day or so afterwards, for me though.

How long does it take to become more alert and do things such as laugh and smile and talk?
About the same.

How long until you can eat?
This was a bone of contention between me and my doc. The day I woke up I wanted pizza, and my grandmother actually went out and got me one. Then the doc said I couldn't eat it. They wanted to wait 12 hours to make sure the anesthetics were completely worn off (might just have been my circumstances though).

Do you feel hungry or anything when coming out of anesthesia?
A bit disoriented? Other than that no.

 

[anonymous]

Do you feel pain or are you too drugged up?
I honestly found the transplant to be not very painful at all. It felt like someone took a rubberband and strecthed it across my chest and it was a very tight feeling. I was also very good on keeping up with my pain meds. 2 Percocets every four hours did the trick for me. The chest tubes were more painful than the incision. Make sure that once you are alert, awake, and can watch the clock that you request the pain meds about a half hour before them doing something like a bed bath.

Are you alert enough to know who is around you and maybe communicate with them in some way?
I remember coming in and out of consciousness after the transplant. I had my transplant Wednesday night into Thursday morning. My parents came in to see me around 5 AM and my blood pressure and heart rate reacted to their voices, but I don't really remember anything. Then as the day went on I came in and out, told my nurse I wanted the vent out, tried to throw the vent up, and remember my doctor giving me easy commands.

Do you get violently ill from the high doses of anesthsia and pain meds?
No. I came out feeling quite well.

Do you remember any of it?
Yes, I remember my doctor saying he was going to surprise me and take my sinus catheters out before I woke up. I HATED those things. I remember asking for my father.

When are you less "foggy"?
They removed the breathing tube at around 1 on Thursday afternoon. The night nurse said I had a full coherent conversation with her that night but I don't remember any of it. I also talked to a few people on the phone on friday but I don't remember that either. I think Saturday is when it all started to clear up for me.

How long does it take to become more alert and do things such as laugh and smile and talk?
I was talking and laughing on Thursday night but don't remember it. I was the most alert by Saturday.

How long until you can eat? Do you feel hungry or anything when coming out of anesthesia?
I was definitely hungry coming out of anesthesia. I ate some chicken broth not too long after the vent was removed and I had my first solid meal sitting up on Friday.

Some other milestones....I was sitting up in a chair by Friday. I was out of ICU by Monday. I was walking around the hallways by Tuesday. I walked up a flight of stairs by Thursday. I was released from the hospital on Saturday. I was only in the hospital for ten days and I was more than strong enough to come home. If you keep yourself in shape before the transplant that will help you a lot.


Margaret
Double lung tx 11.11.04

 

[fr3ak]

<i>do you feel pain or are you too drugged up?</i>





I was in incredible pain after my tx, the epidural needed to be replaced 3 times in the first night due the pain I was in....
The pain felt like someone had drove a semi trailer and parked it on my chest...



<i>Are you alert enough to know who is around you and maybe communicate with them in some way? </i>




I was taken off the vent after only 4 hours, I remember ppl being there, and I remember looking down at my chest to make sure I had been done LOL... I needed to see the scar so I knew everything was in place...
I apparently asked my tx drs how things went LOL obviously well considering I was alive, haha (I dont remember that though)




<i>Do you get violently ill from the high doses of anesthsia and pain meds?
Do you remember any of it? </i>





I didnt get ill from the pain meds or anesthisa but I did get voilently ill from the anti rejection meds...
I kept forgetting to breathe because of being taken off the vent so quick, I had hold of my mums hand and my sisters as reassurance that they would wake me up....if they let go I would be frantically trying to grab for it again





<i>When are you less "foggy"? How long does it take to become more alert and do things such as laugh and smile and talk? </i>




I seem to handle anesthisa really well, and wake up pretty much straight away, so because of this I was very alert by the afternoon...
I was up walking the next day, did a full lap around ICU and was moved up to the ward by that afternoon (just 24hrs after my tx) There was major bed problems and I dont believe I should have been moved so soon, but it all worked out in the end....




<i>How long until you can eat? Do you feel hungry or anything when coming out of anesthesia</i>




The plan for me was to have a nasal gastric tube inserted while I was still asleep, because I was soo underweight the plan was to start NG feeds asap, but because I was off the vent so quick the tube never got placed...
I was sitting up eating lamingtons and small tub of custard and a bottle of coke about 6 hours after I was taken off the vent LOL I never finished my coke but i still attempted it. I wasnt really hungry, but I needed to get something in my stomach before I went to long without food (I seem to have a mechanism that when I dont eat I lose my appetite completely, the risk was too high for that to happen)





anyway that about sums it up for me...



ps. sorry about there not being any spaces, I have edited it 4 times and the spaces are in my edit screen but dont want to show up on the msg board, oh well.....

 

[Joanne]

Sonia,

Great questions.... those are the way to start the process. Ask, get answers, then move onto the next question.... they will not end.

Of course everyone is different, and every center is different on how they do the surgery, how they treat pain, and the meds you get. If you have certain concerns, or fears, tell your center. I told my center that I hated pain, but more I hated to throw up.

My concerns were identical to yours. I wanted to know if one of my family members could hold my hand until I was rolled into OR. If one of my family could sit with me when I woke up. When would I talk? How will I talk? What will you do with my hands? ( some centers will put a loose tie on your hands, so you don't pull out tubes. I would ask for this to be put on, as I feared I would do that). I had 116 questions for the surgeon at my evaluation, and he answered them all, silly as they now seem, but they were darn important to me.

My center does not want you in pain, because if you are in pain, you will not get out of bed and walk or exercise. They could not place an epidural on me, I was just too thin, so they just kept pumping the drugs into me, and I had the button to push also. I do remember one night I woke up in the morning and told my boyfriend who spent the night with me, that I was so proud, I did not use the button all night. He laughed and said "you got the pain meds every 10 minutes, I was hitting the button all night". Oh well. I also got a bolus shot of Morphine before night time, so I could fall asleep. It was painful if I did not have the meds.
I was on the vent for 8 days, and had my chest tubes for 2 months. I was a complicated case. So I had pain meds a lot. I also had to be opened up again after a month to try to get a leak to stop.


Alert to know who is around you... sure... I knew.... LOL. I can still tell people things that went on after tx for the first week and they will shake their heads in agreement and then they turn and laugh. Well now my family is coming out with the facts. I thought no one visited me ever... I mean it. They were there all the time and I have plenty of family that was there. I don't remember them very much. I can remember bits and pieces and I have been told I don't remember them corrrectly. Oh well again.

As I mentioned I was scared of throwing up. I am just not good at it. They had it in my file and I never threw up. I can't recall if I have heard others saying they were throwing up, I don't think so.

Less foggy varying times for people. Smiling and laughing were hard for me... being in the hospital for 2 months, and all sorts of tests done. I was not happy.

Eating ,I don't even remember. I was not hungry and could care less.

I think the meds they give you really make you "carefree" to all that normally is a concern. They take care of you, you tell them when you are in pain, and things progress.

The good thing is that we all get through it, and recommend it for others, so it must not be that bad.

Good luck
Joanne Schum
luckylungsforjo@aol.com

 

[ladybug]

THANK YOU EVERYONE SOOOO MUCH FOR THE AMAZING STORIES AND ANSWERS TO MY QUESTIONS! You have been through so much, and are truly inspirations!

JoAnne, its funny you should mention being terrified of throwing up... I'm exactly the same! I have a severe phobia to it since doing it every Christmas when I was little. I don't know... odd. Anyway, it makes me feel better that people didn't come out of surgery throwing up, and that they were able to hold down food (another concern of mine with regard to loosing too much weight).

Anyway, thanks again everyone for all the wonderful information. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Isn't the transplant really expensive and insurance doesn't cover it?

What % of companies pay for the transplant?

 

[IG]

mine was around $250,000 but I have medicaid (thx god) so didn't have to pay anything.

Dunno that one.

 

[Joanne]

Lung tx is expensive.
But most health insurances cover it as it is a proven benefit.

If you do not have insurance, Medicare pays for the tx as well. Not every lung tx center has the Medicare coverage, but many do now.

I am not sure the % of any of this.

Lung tx I believe is now about $250,000 on the average. Depending on complicatinos and time in ICU, and on the vent it can go up. I was on the vent for 8 days, in ICU for 10, and then spent a total of 72 days in the hospital. The bill was just a tad under a million. I did not pay for any of it out of my pocket. I have great health insurance coverage thank goodness.

Joanne Schum
luckylungsforjo@aol.com

 

[anonymous]

I thought the transplant was going to be much more expensive than it was. I believe the bill was around $150,000. All of this was covered by insurance except the relocation. We had to pay for our apartment for the nine months that we lived in New Orleans. I was also only in the hospital for nine days and in the ICU for 4.

Margaret
Double Lung tx 11.11.04

 

[ladybug]

My maximum liftime cap for benefits through BCBS is 1 million... with everything so far, I'm probably 1/4 or 1/3 of the way there, so lung transplants taking up that much of my benefit is a scary thought. Just something to keep in mind for those with private insurance. There are caps.