Problems afta lung transplant
Problems afta lung transplant - Lung Conditions C...
Problems afta lung transplant
Written by
skylas
To view profiles and participate in discussions please or .
Read more about...
63 Replies
•
I'm confused ! Have you had transplant already ??
No just my mind working over time n c ing what I'm guna b in for ha x hospital foned n said they just waiting on my wee sample n then I'm on the list they guna ring me fri so hopefully all good x hows u x
I've got a vascular test on 9th Dec to see if my groin artery is big enough for the bypass machine.
I hope it all goes well Tweetie13 . Good luck. xx 😀
Why u having that done x
When I had my angiogram done during 3 day assessment they couldn't initially find my artery in my groin. Apparently they thought it was too deep and small so proceeded via wrist. Now they need to check further.
Hi just to let u no I'm now on the waiting list for a lung transplant x r u on the list yet I cant remember xxx hope u r doing well xxx
Hi Skylas have you seen Caspiana’s recent post? She had a lung transplant 4 months ago and keeps us updated with her progress. I guess everyone will have different experiences post transplant, depending on all kinds of things such as your state of health and fitness beforehand, your reaction to the medications, your recovery from major surgery and many other factors.
Hopefully your samples come back ok and you get on the list soon 🤞
Aw yea I've bn reading it's much as I can x n like u say everyone's different x how r u doing x
Hi just to let u no I'm now on the lung transplant waiting list x how long did u wait n did u have any dry runs x n what do they do to u when u get to hospital xx hope u r doing well xxx
Hi skylas I'm not on the list for a transplant so I can't answer your questions but I see Caspiana has given you lots of helpful advice. It's really good to know you're on the list now. I hope you get your call soon 🤞 Thinking of you.
Aw thanks so much xxxx hope u r well xxx
Hello skylas . 👋
Honestly, there is very little point in stressing over what "may " happen. The important thing for you now is to stay as physically fit as possible. The stronger you go in , the better your recovery. The wait can be some time, so please know that just because you are listed, it doesn't mean you can just sit back and wait. Keep up your pulmonary rehab, move as much as possible and do things to keep your mind in a positive place. You've got this my friend! 😊xx
Aw thanks so much your always so positive x yea I still work one day a week but really struggling to do it n I've got n exercise bike at home x how r u doing x
Hi just to let u no I'm now on the lung transplant waiting list x how long did u wait n did u have any dry runs x n what do they do to u when u get to hospital xxx hope your doing well xxx
Many congratulations!! 😀 I waited 24 months. But everyone is different. I had zero dry runs. When you get to hospital they weigh you, take your sats, send you for x-rays, CT scans and Echocardiogram. Then you have a shower. The surgeon will update you on the status of the donated lungs and you will have to sign paperwork like a waiver. In Japan an independent party will come in to confirm that you really want to go through with the operation. Then you wait. When the lungs are confirmed to be viable you will be taken to surgery, you kiss your family, then they insert all sorts of lines. Then you sleep. And know nothing till you wake up. xx 😊
So r u still awake when theyvinsetvall the lines I was hoping n I'm guna ask can they do all that while I'm asleep x how u feeling n doing x
They want you awake for some of it. It's really not so bad considering what you will go through afterwards. Don't worry too much. xx
What stuff do they want u awake for x I love talking to u cause u no everything x n i want to no everything x not to worry just to no weather it will happen to me or not i just wud like to no x n u say considering what I will go through afterwards x like what please give me a list if u dont mind x aw thanks so much Caspian x love cheryl x
Cheryl, listen please.
I am telling you my experience, but I don't know everything. They need to put a line in your arm. That is not bad at all considering you are going to have a major operation that is far, far more painful and serious than a prick and the discomfort of a needle. You will also have tubes in your chest to drain liquid which you will have for a while even after you wake up and in your neck. So you must, just be a bit brave and more than that you must believe you are strong enough to do this because you are. Do not worry so much about this, it is important now to stay focused on getting through this waiting time and coming out the other end as strong as you can. The stronger your mind and body, the better your outcome. You can do this. xx 😊
By the way, there is a lung transplant group on Facebook. It is American based but loads of information. I can send you the link if you want. Only thing is it can be grim reading at times. But it is important to remember that everyone is different and what you read there is not necessarily going to happen to you or me.
Aw yea send me the link x n I no I fink I'm not brave but when it comes to it I always am just dint fancy the needle in my neck one n the epidural one b4 they put u to sleep even though I've ad both done b4 I no I will have all tubes n lines n needles coming out of me after it for some reason I'm ok with that cause they will already b there when I wake up n plus theres nowt I can do bout it just do as I'm told to get out of there n bck home I'm ready for the fight n I will give it my all I've been waiting for this chance for 7 years so I no I'm lucky to get the chance a lot dont aw thanks for been there for me xxx how u doing now n how u feeling do u get out n about a lot now x
Here's the link. It's a closed group so you must send a message to explain you are on the transplant list in the U.K. and then they will add you. Then please write a post about yourself and people will welcome you. ❤️Also, they don't allow abbreviated words. So no text speak. They are very strict about that. 😒😣
facebook.com/groups/LungTra...
I am doing okay but my kidney function is suffering. However, it went from 42% two weeks ago, to my last visit 48% so my doctor thinks things are looking up. I walk everyday. My aim is at least 5000 steps but in a good day I do 8000. It really helps me feel good. 😁😀
Aw thanks for link I'm really bad dislexic so will tell them aw hope your kidneys keep I'mproving what rather symptoms u get from it not doing well x n 5000 n 8000 wow that's great xxxx hope trying to do well which I no u do xxx take care xx cheryl xxx
I hope it helps . See you there. xx 😃
Hi how u doing now x any more problems x
Hi Skylas. I am doing a bit better and trying really hard to rectify my mineral deficiencies through my diet. I hope you are doing okay too. Have a good Christmas my friend. xx 🎀💕🎄🎀🎄💕🎀🎄💕
I hope u find a solution to your mineral deficiency let me no how u get on x n thanks u to have a great Christmas x
❤️❤️❤️❤️
How u doing now xxxx n thanks for telling me about that site x I got loads of good information n tips x
Hi skylas . I am doing pretty well thank you. 😁 And no about that site, I'm so glad it's helpful. I hope you've been well. xx 😘💕
No been really bad with breathing and infection n pnewmoania was in hospital all over new year just come bck into by ambulance feel worst than ever x
Hi how u doin n hows your kidneys doin now I ment to ask u were u bed ridden up till u getting your call x
Hello skylas , 😊👋
No, I wasn't bedridden before my transplant. I was doing normal activities (albeit slowly) right up to the day I got called. I think I was extremely lucky in that respect.
I have just written a post about how I am , so I will paste the link here.
healthunlocked.com/blf/post...
How are you doing? Are you home and reactivated on the list? xx 😘
Il have a look at that link x thanks x yea I'm bck home n bck on the list but still bed ridden can just about manage to get loo n bck nurse said it b bout 6 to 8 weeks to recover cause the pneumonia n infection was that bad aw I hope not I need to get bck in work I only work one day a week cleaning for a very clean house n I take my daughter to n from school so she been walking n it's a bit away she wont get bus or taxi the nurse said if I try to even drive I will b bck in hospital but I wont I no I cant physically do it at the moment just hope I'm not like this till I get my call time will tell x how r u getting on x thanks for texting back x love cheryl x
Went to c the last one of the assessment today u no that one who tells u bout the hallucinations your guna have long x didcu have any x
Hi Cheryl,
Yes, I had hallucinations. But just once. And it was sunflowers dancing in unison. 😊 Not everyone gets hallucinations. And if you remember that the drugs will cause you to hallucinate it's really less scary. Just remember, it's the drugs and not long term. I hope you are doing better now. xx 😊👋
I fink she was trying to scare me the things she was sayin that every one gets them n there really bad n last for days n people have been known to rip there tubes out to try run away I just said we will c if it happens to me x yea I feel miles better each day was bck driving yesterday still gasping but just taking it slow x how r u doin now have u got any more issues or problems x
What she says is true Skylas. Some people do become quite agitated on the drugs. And some people hallucinate all kinds of things. But not everyone has it as severe as all that. It depends on the person. The doctor must tell you the worse case scenario or they would be failing in their duty. It doesn't mean it will happen to you. When you are in ICU they will monitor you closely and if you become become upset they are trained to help you. I'm doing fine and I'm glad you are better. Just take it easy, you will get better. But you must not rush it. Take good care. xx 😊
Ment to ask u how long from u getting to hospital to u goin down to op room to b put to sleep x
Hi Cheryl. I got to the hospital at about 4pm. I think they took me to theatre between eight and nine pm. But the actual operation did not start till the early morning. xx
Ment to ask u how many Broncs did u have b4 u went home from hospital n how u doin about your eating habits now ha s it changed a lot x n how r doin doin n feeling in u self now x
Hi Cheryl, 😁
I never had any bronchs. My hospital think they are an unecessary risk and will only do them if they suspect a problem. My eating habits have not changed too much. I have always eaten a pretty healthy diet. But I try to eat sweets occasionally only and no dark soft drinks like Coca cola , it's bad for the kidneys. I'm doing well thanks for asking. How are you? xx 😊💕
P.S. A dietician will talk with you about diet and the physical therapist will explain about exercise.
Aw thanks for massaging. Ere in england it seems everyone as at lis 3 Broncs b4 they go home just as routine .what country n what part is your hospital. Every hospital is different int it . I've seen the dieatrision once but dint get much info off her n she must of weighed about 25 stone her self il ask about what to eat n what not I'm still really bad struggling to breath if I move nurse is comin again today she finks the pnewmoania hasn't gone n as come back even though when they let me go home afta hospital stay they said it ad gone I new it hadn't I've got x ray on 19th so c what that says x aw I'm so glad your doin well do u have check ups a lot like a few times a week n bloods done n things like that x love cheryl xxx
Hi Cheryl, 👋
I'm so sorry to hear you are still struggling. It's not good that you were discharged you when you are still so poorly. 😑 Are you managing? Are you getting help? So, so difficult when you feel unwell to do day to day tasks.
Yes, each hospital is different. I have read that In the U.S. some hospitals do many bronchs some do none. My hospital is smack bang in the middle of Tokyo. It was explained to me that bronchoscopies are always a risk for infection and pneumothorax. So they only perform one of there is a drop in lung function of some other symptoms which make them suspect there is an issue. I'm happy with that explanation.
I have never heard of a hospital that does not provide a booklet for post transplant patients. So your hospital will probably provide one too, explaining about diet, exercise , what to do in an emergency etc. You should ask about it at your next appointment.
I hope all goes well on the 19th Cheryl. Please do keep in touch. Thinking of you. xx 😘😁
Hi Caspian. Yes I got the booklets off my team. And I get a lot of good information off that website forum you gave me. I've been writing everything down in a folder . Folders cram packed full ha. How u doin .hows your kidneys doin. N r you having any other issues. Hope u r well. I'm gettin better very very slowly can do bout ten steps now b4 I gasping instead of a few n they put me back on high steriods again last week so that's probably why I'm feeling better x take care speak soon x love cheryl x
i ha d little choise have it live dont die simples no stress nt half
Aw thanks x so it was no choice live or die x same ere x was just asking what problems u have now I no I mite not get them x was just asking x if u dont mind saying xxx
Hi just to let u no I'm now on the waiting list for a lung transplant x how long did u wait n did u have any dry runs x n what do they do to u when u get to hospital xx hope u r well xxx
Don't worry what may happen as it may never happen. Focus on being fit for the op and then your recovery. x Anita
Aw I no thanks anita x was just asking what problems people r having x wud live to no not to put me off or anything x ha just wud like to no all the different things x I no loads already ha x
Hi just to let u no I'm now on the waiting list for a lung transplant xxx how long did u wait x n did u have any dry runs xx n what do they do when u get to the hospital to u xxx hope u r well xxx
i went on list in oct had tx in march i had 3 dry runs i was lucky with time . spent that time with case packed ready
W
Here did u have your transplant done I'm at wythenshawe they said cause of my small frame 5foot 1 they are hard to come by hope I'm not waiting to long not got my bag packed yet nurse said dont worry someone can bring it in later plus trying to sort n tidy n clean house ready for it but cause of my poor breathing am struggling doing it just doing bit every day got 14 year old who is soooo messy as well ha x
qe birmingham i was lucky with size im 6 foot 3 not many of us about
Not what you're looking for?
You may also like...
post lung transplant
I have recently been accepted on the lung transplant list (November).
I would value any...
lung transplant discussion
discuss what i consider to be a (need) for a lung transplant
I informed the doctor that id been...
double lungs transplant
nothing's helped my lungs get better left with the decision of lung transplant . Can anyone share...
Refusing Lung Transplant
neurologist put her forward for consideration for lung transplant surgery. After consideration, my...
Lung transplant clinic appointment
Tuesday that I wld be having 'some' tests. Some! A lung function test, ecg, chest xray, blood...
Lung transplant second opinion update.
Lung Transplantation 
Heart and double lung transplant 
