I hope everyone's well and enjoying their starts to the week?
Feels like a while (again) since my last update and a fair bit's happened once again!
First and foremost, I had an oxygen assessment with the thoracic team here in Bournemouth after a referral from my consultant at my transplant assessment back in February. It was my first dealings with the local respiratory team and I was very impressed. After a long discussion in which they went to great lengths to understand me and my needs, it was agreed that I should give ambulatory oxygen a try when I do exercise.
When I was first diagnosed, I always knew that this day would come and it was something that really worried me as it would be indicative of the extent of my decline. However, now that the day has finally arrived I actually feel really good about it. The physio said that the oxygen could improve my exercise tolerance by as much as 40% which would be amazing! In theory, I'll be able to train harder for longer and recover quicker too. That'll help me stay strong and be in the best possible shape ahead of transplant.
Trying to stay fit and healthy is one of the few things that I have any element of control with so I cannot wait for the canisters to arrive. It's perfect timing really as I've been finding the going tougher really and struggled for motivation just a little bit as a result.
I've also been back on the transplant list for a couple of weeks now. That comes with the usual set of conflicting emotions but it's definitely getting harder to deal with the longer that it all drags on. My lungs aren't getting any better as the increased difficulty with exercise is demonstrating. I'd be ok with that if I knew the transplant was definitely going to happen but I'm mindful that there are no guarantees. With each passing day I'm also aware that the transplant itself is going to become more complicated for the surgical team. That's been playing on my mind a bit recently and I'm getting a bit nervous now that my window of opportunity might come and go without a suitable set of lungs coming available.
The growing sense of anxiety and desperation to get going has definitely been heightened by the fact that I now potentially have even more to lose as my wife is now officially more than 3 months pregnant!!!! Obviously there's still a long way to go but after 4.5 years of trying and 3 failed IVF cycles it's fantastic that we've got this far! All going well we'll be welcoming a little one into the world in the middle of October so the sooner I get that transplant call the better!
So it's been another busy few weeks which have unquestionably been broadly positive but the frustration and worry about the transplant not potentially happening is definitely growing. It's up to me to stay calm, keep focussed and remain as patient as I can.
Thanks as ever to all of you for all your support on this topsy turvy journey so far. It's been crazy at times and you've really helped me keep going at times!
Andy
Written by
dodgylungrunner
British Lung Foundation
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I have everything crossed for you Andy and I feel sure that the transplant call will come but I’m pleased you have the ambulatory oxygen to help in the meantime.
It must be hard at times to remain focused and positive but you have so much to look forward to. Thinking of you and your wife and sending lots of love for the future.
Thanks as ever for all your support Carole. It is hard to stay positive sometimes but as you say I've got a lot to look forward to and to live for. I've also plenty of reasons to remain optimistic at this stage. Just got to keep going, right?! Hope all's well with you?
Good to hear from you, Andy. Glad your wife's pregnancy is going well. I hope the oxygen will help you get back to being much more active. My fingers are crossed that your new lungs will turn up soon and the worrying will be over. Meanwhile take care. Love and best wishes to the 3 of you. xxx
Thanks Alberta56 . I certainly hope that the oxygen gives me a boost when I'm on that exercise bike. The diminishing returns on performance are tough as they're a reminder of the disease progression but the oxygen should offset that a bit and keep my enthusiasm levels up when it comes to the exercise. Super, super excited about the pregnancy which is reason alone to keep fighting! Really hope you're well and thanks again for all your support.
I'm fine thank you. it is a b****r when you can't do what you used to do, even if it's something as simple as getting the lid off a jar. (Grrr!) Keep on biking. They had lovely bikes at the gym I went to pre covid, where you could take a virtual tour of Patagonia or other places as you cycled. Places I could never have managed even in my heyday.🥵🥵🥵
It’s good to hear from you, Andy. It must be a very difficult time for you, waiting for suitable lungs in a relatively small window, and the arrival in the lives as you and your wife. There must be a lot going on in your head. However I think the the oxygen is a positive move.
helenlw7 it's certainly getting tougher the longer I've been on the list. The initial wave of enthusiasm/excitement has dulled somewhat and while I'm still doing the exercise the disease is definitely progressing which is adding to the tension a little as I know the window is closing ever so slowly. What will be, will be and I just have to remain patient and positive in the meantime. Hope all is well with you and thanks for your support.
Hi Andy…. I’m so glad you now have your oxygen, it will keep you in good shape for your transplant. I’ve recently joined Facebook IPF support group and been so happy to see a guy (UK) go onto the transplant list, within 3 weeks get his transplant and post a photo of himself sitting in a chair looking so well a couple of days later…. I hope this makes you smile… keep positive you have so much happiness ahead of you when your little one arrives ❤️
That's definitely the plan Injecter1 . If I can go for further and recover more quickly that will be amazing as I'll rediscover a bit more of my enthusiasm and love of exercise again. I'm so pleased to hear about a person in your FB group getting the transplant call up so soon after going on to the list. It's also super encouraging that he's already posting pictures of himself up and about and looking well. Hopefully that'll be me, too, sooner rather than later!
Oh dodgy what a lot of positive news. I'm thrilled for you and your wife on that marvellous piece of information. My IVF grandson did his first tennis course during Easter holidays in France so I truly hope all goes well for the future & you'll be supporting your child through lots of exciting activities & reading bedtime stories ×××××××💜 💛 💚 🧡
Absolutely peege ! The IVF journey has also been one hell of a rollercoaster but we're hopefully closing in now on a positive outcome. It's certainly put the transplant into sharper focus and I'm desperate to get it done as soon as possible as I don't want to miss out when the baby arrives. Fantastic to hear that your grandson is giving tennis a go. I hope he enjoyed it and had a lovely time in France over the Easter holidays.
Charlie is a French IVF boy, over there they can have as any attempts as the need. Perfect birth delivered by his midwife Aunt ten days in the maternity home for both parents! They do things differently , thank goodness for them but not so good for Brits.
Will definitely be thinking of you all and good luck with the O2 & exersise.
Mixed news Andy and I can imagine your very mixed feelings. If you get ambulatory oxygen I know that you will feel the benefit, I did when first prescribed it. I do hope that you hear about a transplant opportunity in the not too distant future. In the meantime, many congratulations to you and your wife on the expected baby in October. Best wishes to you both.
Hi CDPO16 ! Great to hear that you noticed a benefit from the ambulatory oxygen when you were first prescribed it. I'm certainly hoping for the same when it comes to my time on the bike. How are you doing oxygen wise now? Are you still on the ambulatory oxygen or do you need it a bit more frequently now? Wishing you all the very best and thanks as ever for all your support.
Hi Andy, I'm now on oxygen 24/7 via a concentrator. It's taking some getting used to but the ambulatory and short burst were no longer enough as my lungs worsen. I hope that you feel the benefit of your oxygen prescription as much as I did. Carole x
Fantastic re ivf and pregnancy.1 of my grandsons was an ivf baby so i can understand what youve been thro.congratulations to u both.Lovely to hear yr positive outlook on 02& exercise .
Thanks Patk1 ! The IVF news is super exciting and has been a welcome distraction from all the lung stuff. If the oxygen can give me a boost to do that bit more then I'm all for it! Sure, it's not all that aesthetically appealing and a bit cumbersome but if all goes well I'm hoping it's not for ever and will help me to keep my fitness up.
Yes v exciting.ivf is marvellous.we were fortunate my dil got pregnant 1st time.i hope the 02 helps.do pop in to get support if motivation wanes( understandably)& keep us updated - did u see (?) Mr bogangles post cpl days ago - post transplant + feeling good xxxx
Kcn3 thank you! It's definitely getting slightly tougher the longer that I'm on the list but I'm doing my best to stay positive and just have to hope that the right set of lungs are just around the corner. How are you doing? Always here if you want to chat...
Good luck to you and your wife Andy. You are so young and I pray it all works out for you. Fantastic news your wife is pregnant and really something to look forward to. Be Positive and hopefully all you wish for will happen.
Thank you Sheila! The pregnancy news is fantastic and definitely something to look forward to and re-channel my energy into. Firm believer in staying positive even if it doesn't work out the way I want. Easier said than done at times of course but I don't think I do too bad most of the time. Hope all's well with you?
I'm fine thank you. Always grateful for every day of my life. I concentrate on things I can do not what I cant. I used to go to the Gym in my younger days. My excercise these days is walking around shopping precincts. Supposed to be window shopping but if I see a bargain it's hard to resist lol
My motto is "Its not what you spend but what you save " lol
congratulations on the baby news, nothing like it to cheer everyone and make you more focused on getting well, I wish you all the very best and hope everything moves on quickly for you xxx
Thanks angie26 ! It's safe to say my wife and I are both over the moon and it's certainly made me more determined than ever to succeed. I just want to get on with it!
Wow what a lot going on for you ,firstly congratulations on your upcoming new addition to your family and things are looking more positive with the exercise regime with oxygen to help ,its certainly understandable why you are nervous about getting a transplant as it's a big issue to deal with, I am twitchy enough about having a knee replacement let alone major surgery with a lung condition. I hope that you will not have to wait long so you can have a better chance.
Thanks B0xermad ! Things are definitely on the up at the moment and it feels like we're gathering a bit of momentum even if the transplant seems as far way as ever! I'm getting impatient for the transplant more than anything at the moment but I know if/when the times come the nerves and doubts will also creep in. No point worrying too much about that at this point though as I don't know exactly how I'll feel and once I've gone under the anaesthetic I won't know any more about it anyway! Wishing you all the best with your knee replacement. How long have you been on the waiting list?
Currently 2yrs and it was due in May but my bloods and peak flow were not up to the pre assessment nurse liking so she took me off the list for now but gps got involved.
WoW! Well you keep saying you lose motivation but you still keep going in the right direction, hopefully the ambulatory oxygen will kick start a new exercise program for you that will give you more energy & motivation. Well done with everything you’ve accomplished so far, keep reminding yourself of this, & as you say the end goal of a family life will certainly be the prize at the end of your lung transplant, I so wish you & your wife( & bump) the best of luck , you so deserve to have it all, fingers crossed 🤞🏻 you’re not waiting too long, good luck 🍀😊 xx
Thanks Loopylorre . The oxygen I'm hoping will do all those things in terms of giving me a lift, extra energy and greater drive and motivation again. You're 100% right that it's important to take stock of how much I've already achieved already and focus on the exciting times ahead with the baby rather than the unknown of the transplant.
Thanks Tykelady . I really appreciate you taking the time to read my post and leave a message. The support on here is fantastic and always provides a boost!
Congratulations on the news of the baby come October. Ambulatory oxygen will help with the exercise but please build up slowly to prevent yourself from injuries. I did damage to my Achilles tendon as I walked for to long every day at a slow pace and some of the antibiotics didn’t help as one of the side effects damaged the tendons. It took 3 months of rest to recover. I’m still not walking as much as I used to, partly because of fear of the tendons rupturing and the other excuse weather.
Thanks Bernie! The baby news is fantastic and certainly gives me something to look forward to. In an ideal world I'll get the transplant soon and I then have a target to get myself home and at least partially recovered in time for. Sorry to hear about your achilles tendon which sounds a very sore one indeed! Definitely keen not to overdo it on the exercise front - the last thing I want to do is further expected damage when trying to keep myself fit and healthy in preparation for transplant.
Fabulous news Andy and congratulations to you both. Good news that you are on oxygen now and hope this helps with the exercise program. Patience must be hard to come by when you are waiting for such a big operation that will truly change your life but be positive and ready for when it does come x
Thanks Izb1 We're both over the moon about the pregnancy though obviously still some way to go. I'm hoping the oxygen will give me a boost too to keep me motivated with the exercise which is definitely getting tougher the longer the wait gets. I'm a pretty patient person generally but I'd be lying if I said that it wasn't tricky at times!
Such great news your going to welcome a baby into your lives. You have a good positive attitude, hopefully you keep in good health and you will get your transplant. You've got so much to live for.
Awww thanks Shirleyj I try my best but I'd be lying if I said it wasn't difficult from time to time. The baby news has certainly given me an extra reason to keep pushing. As you say I've got so much to live for! Thanks as ever for all your support. I hope you're well?
Thanks for the update Andy. Your life is certainly full of ups and downs. Fingers crossed you won’t have too long to wait for your transplant and you have a baby to look forward to I’m pleased you have the ambulatory oxygen now Take care 🤗🤗
Great news about the baby Andy.& also that you are now on oxygen , you are always so positive, & now that you have the baby to focus on, will give you a new interest, & fingers crossed you will not have too long to wait on the transplant, you must remind yourself that you have achieved so much to date Andy & hopefully all will turn out well for you too.. Many congratulations to you & your wife on your happy forthcoming, event.. Take care ,& much love 💘 to you both.. xxxx Primrose 123...
Hello Andy. The only things I can tell you is keep your eye fixed on the goal, keep your routine going it helps so much. Everyday pre transplant is just as precious as post as we really don't know how things will go. Try and find the joy in every single day even though it can be so trying. Life is two dates and a dash. We make the most of the dash as much as possible. Keep focused. xx 🙋♀️🐕
Oh Dodgy I’m so pleased to learn you’re going to be parents finally. So many of my son’s friends have been down that route and I am pleased to say all have positive outcomes.
Your exercise routine will be so much better with the oxygen. Keep going. Sending love and positive thoughts to you. Diane 😊
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We're both over the moon about the pregnancy though obviously still some way to go. I'm hoping the oxygen will give me a boost too to keep me motivated with the exercise which is definitely getting tougher the longer the wait gets. I'm a pretty patient person generally but I'd be lying if I said that it wasn't tricky at times!
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