My name is Andy. I had a heart and double lung transplant 22 years ago. Still going strong. I’ve just joined this forum today. If you have any questions please feel free to contact me through this forum and I’ll be happy to answer questions about my experience
Heart and double lung transplant - Lung Conditions C...
Heart and double lung transplant
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NinjaAndy
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Brilliant, 22 years and still going strong. I`ll lift a glass to your next 44 years,,,,, 🍺
Welcome Andy, what an inspiration you are. Good to meet you. Xxx
Great to meet you too. PMA ( positive mental attitude). 😎
Hi and welcome NinjaAndy, PMA is something some of us have been discussing over the past few days it is so vitally important isn’t it . I believe my husband would have gone years ago were it not for his positive attitude and my friend , diagnosed with MS almost 20 years ago has had very little deterioration in her condition due , we believe, to pretty much ignoring the condition and getting on with enjoying life 😊 x
Damon1864Volunteer
Hello Andy and well done on your 22year, hope you keep posting have a great day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Wow thats amazing, no wonder you're a Ninja! Welcome to the forum
Ninja as in the motorcycles I used to ride. Transplant has given me many opportunities to do the things I couldn’t do before. 😎
Ah that kind of Ninja, I know them well. I used to ride a Bandit although.I'm still amazed at you 22 years 😀
My parents said it was my “ never give up “ attitude that keeps me going. I’ve also had Bandits. A 1200 and a 600. Had so much enjoyment and a refuge to get away from all the problems of the day. Missing it badly. Had to sell my last bike last year because of my osteoporosis getting worse. 40% of my life with a ladies heart and lungs. 😎
Welcome to the forum. Your story should reassure anyone waiting for heart and lung surgery.
Firstly, congratulations on overcoming a very serious operation many years ago which would have been life changing for you. It seems that you enjoy a happy, healthy life now so feel you are in a position to share your experience with others while offering them advice and support. This is an extremely kind gesture and I'm sure will be welcomed by others on the forum. Its always good to hear good news and I sincerely hope you continue to enjoy life to the full.Best wishes
RR
Many thanks. Anybody can contact me on here or on the phone if you need advice and inspiration
Hi! Welcome to the forum. It's a very friendly, funny and informative group. It's very coincidental that you've joined now as my consultant has said we need to discuss a lung transplant. Obviously I am terrified! At the moment my biggest question is does it improve quality of life, not just extend it?
Hi Karenanne. Yes my life improved dramatically. Went from 12% lung function to 100% overnight. I’ve been able to do so much since my transplant. Make plans for your future as it will only get better. I went through the terrified stage too. Actually took myself of the waiting list for 3 months because I was scared,anxious and worried. But I didn’t need to be. It all worked out thanks to all the doctors nurses and surgeons at papworth hospital. Don’t get me wrong there are times when it’s difficult but mostly it’s discovering how much new stuff you can do and just getting up and doing it. Nothing to hold you back anymore.
Thankyou so much for replying, and so quickly. When I try to research it only gives statistics.
You need to speak to as many post lung transplant patients as possible. See both sides. But in the end if you love life then there’s only one choice. Live and live it to the full. Time for bucket list stuff. Don’t know if it’s allowed to give phone numbers but I am here to answer any questions you have😎
Thankyou. At the moment I am trying to force my self to wait and see what arises after next consultation in September. I know time is against me as I'm 62 (but don't tell anyone!🤣) and transplants are rarely given to over 65s.
Good luck with your next consult. I’m here if you need to talk.
Hi, jumping in on the chat, as I too am worried about the age thing. I’ve been on the transplant list for a year, but operations were suspended for 6 months because of Covid. I’m 65 in 3 months. So far Harefield have said this is not a problem. But I need to stay as fit as possible. Not easy when oxygen levels plummet to 61% with even a short walk to the bathroom, even though I am on 24 hour oxygen. Good luck with your journey
Hi Mary. It's all very worrying isn't it? I'm no where near the list yet. I was told ,pre covid, not to be shocked when a transplant was mentioned but I was. Then in her letter the consultant said it was to be discussed this year! I'm sure the age limit is a guide depending on how well you are and whether you'd survive surgery.
I know. I had been successfully treated with immunosuppressants and steroids for 8 years. I was Still very breathless but I could still work etc. Then I found I was suddenly more breathless. I told my Consultant, who said “It looks as if the disease has caught up with you, we had best get the lung transplant referral started because of your age”. I was so shocked, that was the next “treatment”. It does take months though, so it’s good to get it started. Good Luck.
Thank you 🙏
Hi Andy,
I am a single lung transplant patient , University of Tokyo , 2019. Where did you have your transplant? It's great to have another transplant patient on the forum. To date there are a handful of us. I know someone who had their transplant nineteen years ago and you now at twenty two. This is very heartening. Nice to meet you. 😊👋
Hi Caspiana. Changed my life. Not without its problems but so worth it. Had my transplant at papworth hospital in the uk. June 1999. Home after 13 days and I haven’t looked back. No rejection problems. Plain sailing. Hope your keeping safe and well.
That's wonderful. What medication regiment are you on? I'd imagine after twenty two years your load is somewhat lighter. If you have suffered no rejection in twenty two years , you are unique. 😊
Ciclosporin and mycophenalate mofetil plus steroids, blood pressure meds. I take 11 pills a day now.
Hi Andy. That transplant really has paid dividends and must give hope to those on the transplant list. Very kind of you to offer your support and experience to them. Welcome to the forum.
Wow, just reading 22 years is inspiring. I’m currently on the lung transplant list, so it’s great to read such a positive post. There isn’t a huge amount of information on people’s actual experiences.
Wow 22 years and going strong! That's wonderful and gives hope to all those on here who have been through lung transplants. I will drink to the next 22 years.
Hello and welcome 😊
That's wonderful, 22years. Welcome and keep going from strength to strength.
Welcome Andy 😀 John
Excellent, welcome!
Hi.
Hi Andy,From 12% to 100% lung capacity overnight must have felt like all your Christmas’s had come at once! That’s incredible!
I’ve just had all the tests & am at the discussion stage for lung transplant. Although it’s a “no brainer” decision to make, it’s still terrifying. So to hear you 22 years later sharing your positive life experience, is bl**dy marvellous! Thank you!
Stay safe
Lynne xx
Welcome to the site
Hi Andy it's good to hear you are so well. I had my right lung removed 23 years ago. Until the last 4 years everything was fine. Then out of the blue I started to have terrible nerve pain where I had the operation. Its stops me in my tracks. All I have been given is opioids. Not much good. Do you get any nerve pain.?
Pleased to meet you, Andy. What an inspiring story! Looking forward to hearing more from you.
My mum was one of the first people at the national heart hospital under care of professor English to have extensive heart surgury using a heart lung bypass machine.The amazing medical advances during these intervening years are just wonderful.
It was as late as in the 1970's as a student nurse we were taught if you needed a liver or heart /lung transplant there was no chance.
So delighted to hear your story.
Hi. I was extremely lucky to get my transplant. I was a domino patient. I had heart and double lung transplant and my heart went to a lady from Bristol. So I was a living heart donor as well.
Hi and welcome. 22 years is a positive amount of time for others to look forward to
That’s an amazing story Andy, it’s cheered me up no end, even though lung function is not a issue for me.How did your lungs deteriorate so badly at a very young age?
How is the lady you gave your heart to doing?
What exercise can you do?
Do you cycle?
No need to phone here on HU as there is a Private Message (PM) option.
All the best !
Alps
NinjaAndy• in reply to
Hi. I had a very rare disease called obliterative bronchiolitis. Scarred my lungs permanently. I was well for the first 11 years of my life. Wrongly diagnosed for 21 years. Doctors thought I had asthma. 16 months before my transplant I caught pneumonia and ended up on a life support machine in a coma for 13 days Lost over 60 pounds. That’s when they saw my lungs were almost useless. But I’m still going. Haven’t kept in touch with the lady I gave my heart to. Often think about her and hope she’s still going as well
Welcome Andy. Your share will inspire many and educate others. Thankyou for being so kind and generous with your help. x 🤗
Great of you to share and offer insight. I had my Double Lung Transplant in late Nov. of 2020.I was 66 1/2 at the time. Amazing that I was also at12% before the surgery and largely restricted to my bedroom and home office which were 20 feet apart.
The first few months were difficult for me. I had a small stroke a week after the surgery and
ended up being on a feeding tube for 44 days and in the hospital and rehab for 49 days.
I have not gotten up to 100% (with my oxygen),but I was off of oxygen after 1 day. The last 3
months have been GREAT. I'm feeling better than I have in years, and I'm walking 2 miles a day !! Plus I'm exercising as well!
My question(s) involve infection and rejection? I am concerned about both. Covid certainly raises infection to a high level of concern. So far I have had neither of these issues ,However I would think in 22 years you've had some infections (colds etc). Can you address that issue? Also no rejection is amazing. As I previously stated so far I'm good but any suggestions you may have would be appreciated. I take my meds. religiously and follow all my medical teams instructions that way as well.
I would add --I was in this condition because I'm a Alpha (Alpha1 Antitrypsin Deficiency ). Also my medical institution is now doing transplants up to age 70 (this is in the USA) and maybe slightly beyond.
Even with my issues getting the transplant was the best decision I could have made. Without it I'd either be dead or close to it. My quality of life is so much better now! Thanks for offering to help!!
JCL
Hi. I’ve had numerous infections over the years. I.V TAZERCIN is my go to antibiotic. It has saved my life many times. Unfortunately I carry the pseudomonas bug which flares up from time to time but with the meds it’s ok. Had pneumonia at the end of last year and still made a full recovery. The COVID thing is more difficult thing to deal with. Just have to keep yourself safe and hope. Unfortunately since being double jabbed with the vaccine I still have no resistance to COVID. A study in the USA found 17% of people on immunotherapy don’t get the antibody reaction and after an antibody test I found I was negative for COVID antibodies. Generally I’ve been well but you have to accept that you will get infections but it’s never held me back getting on with life. Hope this helps you in the future 😎
Thanks NinjaAndy. That insight is helpful. I see you are Stage 4 with your kidneys --which can be caused by the meds. Are you on the kidney transplant list?
All the Best,
JCL
No not at the moment. But I’m lucky as my brother has offered me one of his when the time comes. Consultant has said there is a med I can take soon but wants to put it of until it’s necessary. The ciclosporin is what’s damaged my kidneys.
Hello Andy and welcome. What a story you have to tell, giving hope to others on the transplant list.
Hi Andy glad to have you on here My 25yr old daughter has PPFE caused by chemo, radiotherapy and bone marrow transplant from when she had ALL(Leukaemia) twice.
She was put on the double lung transplant list just over a month ago.
She still lives at home and since Covid has worked at home and have to say apart from keeping her away from any germs which could prove fatal , being at home has made her deteriorate mentally and physically.
We have shielded and been very careful, most people have walked away from us, some admitting they dont know what to say. Not helpful as have no support or anyone to blurt out how we are feeling.
We have been told because she is so small 5'1" and her lungs have shrunk by a third she needs teenage/small adult lungs and the uk legislation is that under16s get priority for those , so it is unlikely that she'll get any.
She has gone into a sort of denial and says that's ok I'll just carry on living as I am, 24% lung capacity and uses oxygen to do anything including going upstairs at home.
That she didnt take what the consultant said as bad news🙁.
I am struggling massively with anxiety with the thought of my daughter deteriorating and dying. Last week we had a massive row as she accused me of being in denial that I didnt accept it didnt matter what she did she wouldn't get any better. I try to encourage her to do any type of exercise to keep the rest of her body strong, as papworth have told her to do, but she won't. Anything I suggest she openly rejects as its come from me!
I asked papworth if there was a support group, but they said no😞.
How long did you wait to get your lungs and how did you keep yourself mentally and physically strong?
Hi. Sorry to hear your daughter is very poorly. I waited 53 weeks for my transplant and in that time I had 2 false alarms. Third time lucky 😃. Everything went like clockwork. No real problems after that. As for keeping myself happy and healthy it was difficult at times. So long ago now. I seem to have an inbuilt ability to cope and never give up. If your daughter wants someone to talk to I’m here if you need support
Thank you.She says as she's had major health issues for 17yrs of her life she doesn't know any different. Any 'official' that talks to her is concerned at her calm acceptance and she has been asked on several occasions if she'd like to talk to someone. She rejects everytime saying she's fine.
Is this a good thing or not?
She says everyone needs to get on with their lives. She lives with me and her older sister, who normally doesn't live here, but works on cruise ships and has turned down contracts ,as she wouldnt be her if/when the call comes .
Her sister and myself are finding it very hard to get on with life. I lost my job last year after shielding with my daughter and my boss didn't like it!
Yesterday my daughter got an unexpected call from papworth, re blood results, and it really shook her up and she needed to lie down afterwards .
Difficult question. Without talking to her and letting her talk about her experiences I can’t really help. I too was very ill for 23 years. If you like you can tell her about me and see if she wants to talk to me then she’ll know she’s not alone dealing with lots of health problems. I can only offer that if it helps
Hello Kcn3 , 😊👋
I am so terribly sorry to read about your daughter's plight (and yours). I waited 28 months for my lung transplant. During that time I was lucky it was just before the pandemic. A year later, they stopped all transplants for quite a while due to Covid.
I'm afraid your daughter may be feeling like a burden to you. When she says everyone should get on with life, and her seemingly offhanded attitude to her own possible demise it seems to me she doesn't want her sickness to be the main focal point of your household. May I ask who looked after her when you were still working? Did she stay at home alone? I have found during lockdown people are suddenly clumped together at home for long periods of time and tensions rise. Even for healthy people it is stressful. I can't imagine what it's like for a poorly young woman. Does she have friends her own age? I'm sorry to ask but is her mother in contact with her? I am pretty old myself, and often I still need my mum. 🙂 Sorry if that's an inappropriate question.
Not to be morbid, but when one has been sick long enough, at times the thought of just not having to go through another day can actually feel very welcoming. I don't think your daughter is being willfully petulant. Trying to find a reason to get through day to day is important. I think I was resigned to the fact that I may not have been able to survive the wait. I'm just speculating, but it could be your daughter may feel a bit thus way. It really is not unusual.
Lastly, my wait was very long. I got myself a hobby, miniature villages and I made scenes from my imagination. Very intricate details and very time consuming and it gave me something to focus on. I walked my dog with my oxygen bag strapped to my back everyday. I climbed a few stairs just to keep my muscles working . Small things It is very important to keep moving. She will need core strength for recovery after her transplant, and she needs to try and maintain that 23,% lung function and she won't do that if she's not moving. The stronger she goes in the better. My youngest daughter is twenty four, I so feel your anxiety and worry. Please reach out whether it be in this community or another for support. I am a member of an online forum for transplant patients (pre and post) on Facebook. It is a big community. You or your daughter or both of you may like to join. Also your other daughter as it seems like she is going to be actively involved with her care. Many, many people of all ages there and many young people. Also other parents like you. You will have to request to join but that is easy enough. At times the posts are difficult to read but it is best to go into this with your eyes open, as a carer there is so much to learn. And of course there are many wonderful posts that give us all hope 🌈. I think she may find other young adults there in a similar position to herself. If you would like the link I will send it to you. Do not despair.
Sending you very best wishes,
Cas xx 🌿🌼
Hi Caspiana
Thank you for your reply.
My daughter is still working from home full time, though she does get tired and does have naps when needed , but still completes her work, she's an accountant. before covid she worked in an office , but everyone works from home and the firm has decided to sell the office and link into coworking spaces around the town, but that home working will now be the norm, but that coworking wont happen til the office sold. Which isnt good for her mentally feeling cutoff. She wants to be back in an office , back with people .
She hasn't got any friends that she sees, the 1s she had were all colleagues, they used to get together every lunchtime and the company used to have quite a few evening fun events she used to go to. They dont live near each so not seen each other at all.
Her best friend , also a colleague, refuses to see her in case he gives her a cold or similar and in his words 'kills her'. It has upset her greatly that he wont see her .
Confused on your words, 'does she see her mum,? I am her mum and she lives with me.
She only sees me, her sister and now lockdown eased, her dad and his girlfriend, 1 evening a week.
I know she was listening to podcasts for others pre/post transplant, before she got on the list. Dont know if she still is , as she now doesn't want to talk about it.
I'd be interested in joining the Facebook group and I will pass it on to my daughter. What is the name of the group, ? Apologies only recently joined Facebook so still learning.
healthunlocked.com/blf/post...
Will write you tomorrow. It's almost my bed time. Do join up. It will help. xx 👋😃
Hello again, 😊
I must apologise, for some reason I thought you were dad. As I can't really tell if you are male or female. So my apologies.
The situation is better than I thought. If she is able to work from home, that will give her a focus and a daily routine. As for her friend, I am sure he can face time with her. Although it seems cruel, I think he has her best interests at heart. If she did catch something, and got worse, she may be too sick to go through the transplant. But now she's got her foot in the door , on the waiting list, she has to be very cautious. All of you need to be cautious really.
Hopefully, she can start to focus on getting her operation with hopes to returning to work in an office. Many people do. She has youth on her side too.
Anyway, I hope you and both your girls can join the support group. If she puts up a post about herself and her situation, she will see she is not alone and I think it will really help. If you need anything just let me know.
Cas xx 🙋🐕
Hi Thank you. I have joined the facebook group that you mentioned and have already found it very interesting. It's a big shame its usa based as they seem far more advanced with medicines and procedures than the uk. I think each country has different criteria and how they do things so it's hard, but very interesting reading Individuals input as patients or carers as those views will be the same world wide.
Very true, but the core medical issues we face pre and post transplant are fundamentally the same and there are many. I wouldn't focus on the medical system , they have it tough really. Many people fighting to get their medications acknowledged and covered by insurance etc. There is also a search engine at the top. You can search for specific things . When you feel comfortable maybe write a post to introduce yourself. And if your daughter could, she will find there are young people like her.
This is a post posted earlier today by a lady who is just starting the process.
Post about transplant carer.
Hi wow that give me hope. I’m at the very beginning of the heart transplant Journey. My main thing to focus on at the moment is to lose some weight
Have you had your transplant yet?
No
How can I help?
How long did you wait to get a heart
From being on the waiting list I waited 53 weeks to get my heart and lungs. I had 2 false alarms in that time. But we’ll worth the wait. I even took myself of the waiting list for 3 months because of anxiety and being a little scared. Got over it and haven’t looked back.
I’v have really bad anxiety as well as depression and PTSD.
Hard times. Been through those feelings too. Luckily I get to talk to my shrink at papworth hospital regularly. Things will get better after your transplant. It puts a new slant on life. Keep looking forward. If you need to talk I’m here ok
Thank you. I’v had a lot help from a counsellor. I was born with a congenital heart condition called tricuspid atresia. So have had a hell of a lot to cope with. Now we are on the transplant Journey and I know that’s not going to easy. Thank you
Sorry to butt in, I had a double lung TX 2 years ago, would like to just say that anxiety seems to be a normal problem that go's with serious health problems. Most people I have spoke to at clinic all suffered quite badly with depression and anxiety. However as Andy says, that all changes post transplant. Also just add that my call came only 8 days once I was put on the list, so make sure your bag is packed, best of luck for the future.
Just wanted to say how amazing that you had such surgery 22 years ago!!! The most incredible thing ofcourse is you survived it!! Amazing! 😀😀😀😀
OMG what an inspiration you are! May I ask how old you were when you had the transplants?
Hi Chris. I had my heart and double lung transplant when I had just turned 33 at papworth hospital.
Such a lot to go through . I suppose being younger helped a lot with your recovery. So glad you got through it and are well now.
Hi congratulations on the opp well done, please let me know how to go about it as my husband desperately needs this but we have just been left hanging no information or help has been offered to us it's been over 10 years and still no help at the moment he's giving up hope of ever having a life again just getting nowhere ? Cheers Helen
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