To say a lot's happened since my last update is a bit of an understatement!
I've been called up twice for a possible lung transplant, suffered a hypoxic episode and shared my experiences of living with lung disease with Asthma and Lung UK to help them raise a bit of awareness of pulmonary fibrosis for Pulmonary Fibrosis Awareness Month.
Getting the calls to come in for a potential transplant were both surreal experiences - especially the first call having not gone through the process before. I had just finished dinner when the call came in and was just about to settle down for a couple of drinks with a few of my cousins that had come down for the weekend. I guess there's never a perfect time to get the call but it's safe to say that we really weren't banking on it when it came in and in truth I don't think we were quite as prepared as we'd have liked to have been. My overnight bag was packed but I wasn't really in the mindset to be getting in the car and racing up to the hospital to undergo a life or death transplant.
When we arrived at the hospital shortly after midnight, there wasn't anyone around and we were escorted up by the cover of darkness to a private room on a virtually deserted ward. Then a flurry of activity - MRSA swabs, COVID tests and lots of form filling. It was all systems go before I got a call from the transplant co-ordinator to say that the transplant might no longer be happening. Another call came through for her while she was on the phone to me and I was left in a bit of a state of limbo. Blood tests were put on hold and we were back to waiting for the transplant co-ordinator to ring back. Half an hour or so went by and then BOOM, another call, it was all systems go and the transplant co-ordinator was on her way in to talk me through everything. Bloods were taken, a cannula inserted and yet more paperwork.
I was relieved when the transplant co-ordinator arrived to talk me through the next steps and what to expect. By this point it was gone 2 am and her advice was that my wife and I try and get some sleep as the surgeons needed to run some tests on the donor's lungs and we wouldn't be looking to get prepared for surgery until 5 am at the earliest. I was shattered but on high alert at the same time so sleeping proved difficult. However, as the hours passed by and I didn't get a visit from the consultant or the anaesthetist it became clear that the transplant was going to happen. The transplant co-ordinator came in at just before 6 am to confirm that the transplant wasn't possible as the lungs were no longer in good enough shape to consider the operation. After a quick cup of tea and a biscuit (the first I was allowed to eat or drink since I got the call at 9pm), we were back on the road and back home in time for breakfast.
I was too tired at the time to completely understand my emotions when I got back but they were definitely conflicting. Part of me was obviously disappointed. This is something that I'd been building to for the best part of a year and a potential end to all the treading water and frustration of my condition was so nearly realised. I'd come within a couple of hours of having the operation. However, a part of me was also relieved. The nearer it got to the possible operation the less easy I felt. Doubts crept in a little and I didn't feel as ready or prepared as I thought I was.
Over the next few days as I got my head round everything, I started to be able to think a bit more clearly about it all. The relief I felt was understandable and only natural given you're bound to get scared once such significant surgery became ever more likely. However, it was only fear of the unknown not because I thought that the operation would be a mistake. I only needed to go back to the previous weekend for a reminder of why the transplant is a no-brainer.
I was at the beach with Lauren and some of her uni mates who had come down for the weekend when I suffered a hypoxic episode where I almost fainted on getting out of the sea after a quick dip to escape the heat. The water had been cool but not freezing and I was very careful to make sure that I never swam or exerted myself to put my lungs under any undue stress. However, my legs were heavy as soon as I got out and within a few seconds I was feeling wobbly and lightheaded. My vision went almost completely and I dropped to my knees before reaching our little beach tent. Thankfully, it really wasn't far to the tent at all so I got to the tent crawling on my hands and knees.
I spent the next couple of hours resting in the tent. Apparently my lips had gone blue and I was slurring slightly when I was talking to people. Unlike the previous incident in a lake in Austria where I'd also been swimming, my breathing wasn't affected at all. However, I was so weak and kept getting dizzy when trying to stand up to get back up the hill to the car and go home. I don't know what my sat levels would have been but I imagine my oxygen level would have been quite low and probably required hospital attention. However, I didn't want all the circus of an ambulance pulling up on the promenade and half the beach looking at me. My ego kicked in and through sheer bloody minded determination I got myself up that hill and into the car and home to recover.
A scary episode looking back and a timely reminder that the transplant couldn't come quick enough. Sure enough that first call came through the following week but sadly it wasn't meant to be. Nor was it second time round on Monday just gone. The first set of lungs were very good but sadly they had depreciated slightly too much by the time that the surgeons had completed all the checks. The second set of lungs were just too damaged to consider. Again, just not meant to be. However, I've only been on the list for two months and already been called up twice. I've also learnt so much from the two dry runs and I'll be ready and waiting again when the call comes in next time. Hopefully, it'll be a case of third time lucky.
In the meantime, I'm determined to keep my side of the bargain by staying fit and healthy, enjoying life without taking too many risks as best I can and doing my bit to help raise a little awareness of pulmonary fibrosis during IPF Awareness Month. Some of you may have seen my story on Asthma and Lung UK's Facebook page already but if not here's the link:
Thanks so much for your message and positive vibes Cloudancer - going to need all the support I can get. No call since the one at the beginning of September so just trying to get on with life as best I can in the meantime and keep my side of the bargain by staying as fit as possible. I hope you're well and having a good week whatever you're up to.
Thanks Carole and huge apologies for the delay in getting back to you! It's been really busy which is good in many ways as it means I've been distracted from thinking too much about the transplant though it's always in the back of my mind. No transplant call since the one at the beginning of September but it'll come in good time. Hope all's well with you and thanks as ever for all your support.
Hi sassy59 , glad all's ok with you and hope that that remains the case going forwards. Had to take some time off the transplant list actually as my Dad got Covid but I'm back on now and ready as I'll ever be for that call.
Yeah it's weird being on the list! Some days it's more in front of your mind than others but it's always there in the background. Absolutely hope it's third time lucky. Just got to do my best to stay fit and healthy in the meantime. Hope all's well with you and apologies for the delay in getting back to you!
Haha, I'm not sure about that but it's certainly been a bit of a rollercoaster. Fingers crossed it is third time lucky. Hope you're well Hidden and thanks so much for taking the time to read my post
Keep on trucking Dodgy. You now know what to expect so shouldn’t be too scary when you get the call. Go with the flow my friend. You’ve got this. Good luck 🤞🏼
I'm hanging in there Stratos20 but it's not always easy! As you say, I know what to expect now having had two dry runs. The rest will always be an unknown until you have the transplant. Just got to put my faith in the surgeons and amazing medical team that will look after me afterwards.
Oh Andy!!! What a story. Thank you soooo much for telling us. You have a brilliant way of describing it all. I am sure there will be a full length book coming out. You have a most engaging honesty which is vital to your readers.
Thanks for all your support as ever Kate! Sometimes it doesn't really feel real. It's funny you should mention a book - I've made slow progress but I have been writing about my experiences both with leukaemia and my lung transplant journey so far. Quite cathartic but easy to get distracted! Really hope all's well with you?
Wow! You must have been physically and emotionally exhausted after that nail-biting wait at the hospital, especially coming on the heels of the hypoxia episode. Thank you for sharing your experience with us. Take care and good luck x
Hi Firefly25 , it's certainly been draining but I've managed to keep going and even had a bit of time away with my wife recently which was really nice. I could have done without the hypoxia episode but I guess it goes with the territory and served as a timely reminder that I'm doing the right thing going for the transplant. Thanks so much for taking the time to leave a comment and for all your support. I hope you're well and wish you all the very best too.
Thank you for sharing your experiences. I can only begin to imagine what it must have felt like to get the first call. By now you must be starting to feel like an old hand!
I wish you and your family all the best as you go through this trying time, and hope that your third attempt is successful. xx Moy
Not at all MoyB ! Sharing my experiences is good for me, too, as it helps me to make sense of everything and if it helps anyone else at the same time then I see that as a bit of a bonus. I wouldn't say I'm an old hand just yet but I know what you mean - I certainly feel more ready now and will be ready to go again when I get that next call.
Grief what a roller coaster for you Andy. The only good thing to come out of this is you now know what to expect and I imagine have managed to get your head around things as you said you werent as prepared as you thought. Will be thinking of you x
It's certainly been eventful Izb1 - they like to keep me on my toes. Not had a call since but I'll be ready when it comes. Thanks so much for all your support as ever. I'll keep you posted on how everything goes
Well Andy you have certainly had a rollercoaster of a time. Your calls for transplant, whilst unsuccessful, will make you more aware of the process in action for next time. Hopefully next time everything will come together. My husband had IPF and got his double lung transplant on the first call in June 2021. The call came at about 4am in the morning and the scene in our house was like something from an episode of Fawlty Towers. As for me, the wife, the emotions that went with it I now find impossible to describe. I was aware of my heart thundering in my chest and being aware I had to stay calm whilst I drove him to the hospital. This was during COVID so I had to leave him in the ward and I sat in the car in the hospital car park for an hour before I was calm enough to drive home.. You will get your transplant and I wish you well Andy. Your wife ,who I know you worry for, will cope because she wants this as much as you do. She will be with you every step of the way in sickness and in health just as you would be for her.
Biofreak thank you so much for taking the time to write such a lovely reply and apologies for the delay in getting back to you - things have been hectic recently! Completely agree that the calls will mean I'm more prepared when the right set of lungs do come along. Thanks, too, for sharing your own experiences. Having to sit in the car park must have been awful! How many calls has your husband had? Has he subsequently had his transplant? If so, I hope he's doing well.
Thanks DLR. My husband received a double lung transplant on 29/6/21 on his first call which I mentioned in my previous comments. Unfortunately, he has been very unlucky in that he is now experiencing chronic rejection due to bronchiolitis obliterans. A series of events after transplant have led to this but I must emphasize to you that his case is very unusual to experience chronic rejection so soon. The after support group run by the transplant centre has members who are still doing very well 10 years post transplant so don't let my husbands experience worry you. You need to remain positive and I'm sure you will be fine. My husband was 65 when he had his transplant and was very ill and you are much younger and healthier. Good luck to you and your wife.
So sorry to hear about your husband's chronic rejection so soon after the transplant. That really is rotten luck for you all and I hope that the support group and hospital are providing the support that you need. Chronic rejection is my big worry, too, but like you say it's unusual to happen so soon and there are many that thrive for many years post transplant. Not sure I can help in any way really but I'm thinking of you and your husband. What treatment do the team at the hospital have to combat/slow down the rejection?
The chronic rejection, in my husband's case, is because of the development of bronchiolitis obliterans ( inflammation of the bronchioles) which cannot be cured. He was given treatment called TLI (total lymphoid irradiation) which was a course of targeted radiotherapy which basically kills off the cells attacking the lungs and thus slows down the rejection. This was done at Christie's over an 8 week period. It's quite harsh but worth it if you can endure it. It appears to have slowed down the rejection in as much as his breathing hasn't worsened. It's not improved either but we didn't expect it to. He's coping at the moment with ambulatory oxygen. So we just have to be careful that he doesn't pick up any infections to upset the status quo. Not easy but you can only hope for the best because living in fear isn't going to help. I hope you're keeping well and keep your chin up DLR xx
Absolutely teenieleek ! Fingers crossed it's third time lucky Not had a call up since but will look to write another update soon as it's been a while. Really hope you're well and wish you all the best going forwards.
my word Andy what a lot of emotion to cope with so thank you for sharing what it is like I hope number 3 call up is successful and I’m sending you and your family hugs. 🤗🤗🤗🤗
Thanks watergazer ! No call since the last post but I'll write another update as it's been a while! I hope all's well with you and that you're having a good week?
unfortunately I have done my back in after a weekend of being with grandchildren and trawling through soft play. Was just moving some toys and I felt it go. Feel like I’m 100 some times!!! 🤣. Worse things to endure in life though. Take care xx
I hope so, too, Shirleyj . The longer I've been waiting the harder it's become to be honest. Hanging in there though and I'll be ready when the next call comes. Thanks so much for all your support and rest assured I'll keep everyone updated.
Thanks Sutton5 ! Mrs J is made of pretty stern stuff and keeps me going that's for sure. No call since the post but I'm ready as I'll ever be when it comes.
Gosh! Thanks for the update, I was nervous reading your post so I can't imagine how you're feeling. You are so strong to keep getting back up. 💪 I think it's sheer bloody mindedness that keeps you, and the rest of us, going. That and inspirational stories like this from our lung buddies! Sending good wishes. Good luck. 🤞
Thankyou. We've tweaked them a bit cuz I was too sleepy during the day. 💤 How are you?
Great to hear your news, but what an emotional time you’ve been having. It’s encouraging you’ve already been considered for two lungs. Hopefully the next one will be in mint condition. It’s sad to know the donor will have died for this to happen, but they’ve made the altruistic decision to pass their healthy lungs onto someone else, and we all want a new, healthier life so much for you ❤️
I know exactly what you mean about the lungs - very sad to know that for me to have another shot at life someone else has lost theirs. A hard one to get your head round and something I've tried not to think too much about in the short term. Longer term, if I do get the lungs then it's certainly something that I will think more deeply about including contacting the donor family. Really appreciate you taking the time to read my post and wish you all the best going forwards.
wow Andy , you have been through an emotional whirlwind!!… a lot to deal with for yourself & loved ones. Been an inspiration reading your update ( sorry I’m late not been on as much)
Please keep us updated always great to hear how you are getting on .. and wishing it all goes to plan next phone call! 🌹
Hi Maggie_Mae no need to ever apologise for replying later. I'm even worse and often go weeks without logging on to HU which is silly because I always get something from it when I do. No further calls since the last post but it'll come in time. Just got to try and stay as fit and healthy as possible in the meantime. Really hope all's well with you?
I wish you well on your journey and I can relate to you in so many ways but your young and deserve to enjoy your life it's been a hard ride for you and hope things go well for you and your loved ones take care and I hope the big man is looking down on you with the help you need
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Not had a call up since but will look to write another update soon as it's been a while. Really hope you're well and wish you all the best going forwards.
Aspergillosis and Hyperinflated lungs. 
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Hospitalised AGAIN Over Oxygen Levels
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