Mindful that it has been a fair while since my last post - much longer than intended. However, in many ways it's a good thing as it means I've got more to update you all on.
First and foremost, I'm still on the lung transplant list and have yet to get another call since being re-added back in April. Frustrating, especially with the baby on the way, but ultimately nothing that I can do about it. The only thing to consider, potentially, is wherever I should come off the list for while to make sure that I'm around for the baby when she arrives in October and the first few months which will obviously be tough.
On the surface, it's a no brainer to take the time off the list however it's not quite as easy as that given the complexity of my particular case. The surgery is already complicated as it is and there is a risk that delaying the transplant - albeit for a few months - might see the transplant become too complicated to carry out. I've still got a bit of time before I need to start thinking about coming off the list as should the call come sooner rather than later I'll still be out of hospital and through the worst of the recovery by October. I think if it hasn't happened by the beginning of September then I'll have to give it some serious thought...
In the meantime, I have to focus on the things that I can control like staying as fit as possible. In this regard, I've done really, really well in recent weeks thanks in no small part to the home oxygen that I'm now using when I work out. It has been an absolute game changer not only in helping me to exercise for longer but also recover quicker. I feel the best I've felt in ages and now really look forward to getting on the exercise bike and pushing my boundaries. I even tried a run on the treadmill a couple of weeks back which I'd NEVER have considered before the oxygen showed up. Given the impact that it can have it does make you wonder why I, and others, aren't offered oxygen earlier. However, I know that you have to meet certain criteria (like oxygen sats dropping during the 6 minute walk test) to be eligible. For me that didn't happen until February but I think that my sats were probably dropping on exercise well before that.
My recommendation to you all would be to get a little oximeter as a starting point. If that indicates that your sats are dropping on exertion then you can then go to your consultant/GP and kick-start the assessment process which will include the 6 minute walk test.
I've also been busy getting the nursery ready. This has been a welcome distraction from all the waiting around for the transplant and means that we will have one less thing to worry about prior to transplant. Yes, it's earlier than normal but if I got the call tomorrow then there's no way we'd be able to get the nursery ready in time. Even if we could, we'd be putting ourselves under completely unnecessary additional pressure when we've already got more than enough on our plates!
Nothing much else to report other than Covid not seeming to have left any long-term side-effects bar a bit of a chest infection immediately afterwards which was quickly nipped in the bud with antibiotics. Since then I've had my latest booster and done lung function which indicates a slow down in the rate of the disease progression. This is obviously great news and could indicate that the Nintedanib is having some kind of beneficial impact.
Last and by no means least, today marks 19 years since my Mum passed away. While the pain has eased over the years I do still think about her a lot and often wonder what life would be like if she was still around. Mum taught me to fight for what I believe in and to never give up. I'm doing my best to do both those things and hope she's proud of me!
Thanks as ever for all your amazing support and comments. This community is amazing!
Andy
Written by
dodgylungrunner
British Lung Foundation
To view profiles and participate in discussions please or .
Hi Andy, so lovely to hear from you and thank you for the update. Such exciting times for you on all fronts and I hope you get the call for a transplant very soon. I’ll be keeping you in my thoughts. So pleased you’re doing well at the moment.
I have endometrial cancer unfortunately so have a battle to fight and win. Awaiting PET-CT scan results but hope to hear by the weekend.
Love the photos and your mum looks like she was a wonderful lady. Take care.
Oh Carole so sorry to hear about your diagnosis. As you say another battle for you to fight. Got everything crossed for you that the PET-CT scan reveals that the cancer isn't too advanced and that you can crack on with any treatment as soon as possible. Keep your head up and thanks as ever for all your amazing support.
Thanks Bernardine! As you say all positive news at the moment bar the lack of action on the transplant front. Just got to stay patient and be ready when it comes
I’m very pleased to read that the O2 has proved so helpful. It’s always good to hear of treatments that help, I store up these valuable pieces of information in case they’ll come in handy in the future. It’s tough on you both being on a list with no firm date to plan for, so I wish you strength to put up with that. But such happy news about your new baby to come - now that is something good for the near future. And well done on sorting the nursery, one very big project that’s been achieved. Good luck! 🤞🤞🤞
The ambulatory has been a game changer beech , it really has! Definitely worth bearing in mind going forwards as an option to consider further down the line. We're all entitled to the oxygen but it only becomes available once you meet the criteria.
As you say, it is tough not having any idea of when the transplant will be. Nothing has changed in that regard but now that I have the little one on the way I'm obviously growing a little more anxious to get on with it.
Hope all's well with you and thanks so much for taking the time to read my post and leave such a lovely message.
Good to hear from you, you sound very upbeat and so pleased the oxygen is helping you to do everything you need to, good luck going forward and congratulations on your new baby due in October
Thanks B0xermad ! Definitely in a good place in the moment but in a hurry to get on with things now that the baby is on the way. Obviously can't control when the transplant comes but I've definitely had a new burst of energy with the oxygen. Hope all's well with you and thanks as ever for all your support.
Thanks for the update dodge. So pleased you are doing alright. I’m keeping my fingers crossed you stay positive and have more good news as time goes on. All best wishes, Diane 😊
Thanks Diane! It's all positive at the moment but I'm well aware things can go the other way with the blink of an eye. Just want the lung transplant to come to be honest so that I can get it out of the way and hopefully get back to living life to the full and enjoying my daughter when she arrives
Pleased to hear your doing so well with your exercises and further happy event in October. Hope you get the call for your lung transplant soon. And hope everything goes well. Brian
Hi Andy 🙋♀️. You must be so excited about the baby, so pleased for you both, busy times ahead! 🙂. Be lovely if you heard very soon about a transplant give you time before your little girl arrives. 🤞 Thank you for updating us , think we're all amazed at how brave you are. (Lovely photo BTW) xxxx
So, so excited about the baby Nula2 which like the transplant has also been a long journey with all our IVF attempts. Nothing in life worth having is easy is it?! I do my best to be strong but I'd be lying if I said that I didn't have doubts at times especially now that I've got a little one to think about. Really hope you're well and thanks as ever for all your support.
Hi Andy. You are so young to have such problems. That’s one thing in your favour for a lung transplant. My Husband had IPF and was on a home oxygen unit. He didn’t have anything to help him then. Perfenidone had just come out but he wasn’t allowed it because of his age and the fact it cost a lot of money. So only the really needy younger ones got it. I met a lady Consultant from Bristol and she apologised to me. Things are different now and the drugs are more available.
Anyway good luck about the baby. You must be over the moon. You will put pictures up when the baby is born won’t you? So all us ladies can coo over another beautiful baby. In the meantime I hope all goes well for you.
Hi Mavary . Thanks so much for your message. Not considered myself as young for a while (I'll be 39 this year) but I guess in terms of the IPF I am. Really sorry that your husband didn't have the options that are available now. Still too early for the docs to say whether the Nintedanib has made a definitive difference but early indicators from the lung function results are that disease progression has slowed. Age shouldn't be a factor when it comes to access to medication and more needs to be done not only to increase access but also awareness of possible additional medications for people.
Going to need all the luck in the world with the baby as there's still a long way to go and plenty of hurdles to negotiate. Baby pics sound like they are a must so all going well I will oblige come October
Hope all's well with you and thanks so much for all your support as ever.
Anybody with IPF will always have my support. I know what it’s all about. I hope your lung transplant won’t be too long. And please don’t postpone it. You could get a lot worse then it will be harder to do the transplant.
My Husband couldn’t have the drug because it was just out and so expensive. Whenever any new drug comes out they cost thousands for one person. I had a drug for my bones for two years as that’s all you can take it for. But I was told once I had it I had to keep using it as it was so expensive. I think it was £13,000 per year to give me that drug. I had another one for urine infections and that was £50 per tablet. The drug companies are just ripping the Drs off.
Thanks as ever for all your support Karenanne61 ! Don't worry there'll be photos of the baby when she comes and hopefully me on the way to recovery as/when the transplant happens
Good to hear from you Andy. Glad that the oxygen is working its magic. I hope your transplant call comes soon, so you are all ready for the new baby. The photos are really cheering. xxx
The oxygen has been a game changer! Really given me a boost at a time when I was beginning to get a bit frustrated. Thanks as ever for all your support - hopefully that transplant call will come sooner rather than later!
What a positive update Andy. I’m pleased things seem to be better since the oxygen arrived. Hope the nursery is ready soon and that’s one less thing to think about. It would be great to get the transplant soon so fingers crossed x
Good to hear you are doing well with the oxygen Andy. I don't like to stick my beak in but I feel compelled to say, please try not to come off the list because finding a match is not always straight forward or guaranteed and it is impossible to know when the next match will come along. I wish you well as always. xx 😊👋
Lovely to hear from you Andy, & totally delighted that you are doing so well with the oxygen, & hopefully you will get word of the transplant sooner rather than later, meantime do keep up the good 👍 work with your excercise regime, it will stand you in good stead for the transplant... Many congratulations to you both on your wonderful forthcoming event in October Andy.. With much Love 💘 & may God bless you always.. Primrose123... xxxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is oxygen ineviatble?
PIP ....Oxygen
Oxygen Therapy
Quick question on oxygen.
