Another couple of months have flown by since my last post! Sadly no transplant calls in that time but I did have to go a short time off the list in order to kick a chest infection into touch. Over that now and back on the list which is great news.
Doing my best to soldier on with the exercise but been struggling a fair bit with crippling bouts of fatigue and/or energy levels which I'd be lying if I said I wasn't a little worried about. I've also been struggling to sleep through the night and often had to get up to go the toilet. Diabetes immediately crossed my mind as something to be aware of so I have visited the doctor to ask the question. He said he'd be surprised given my diet and weight but hasn't ruled it out as apparently long term usage of prednisolone can impact the hormone levels including insulin production. Has anyone else been told this?
Anyway, I've already done the urine test and will be doing a blood test in a couple of weeks as it's better to be safe than sorry and ideally I would like to get a good night's sleep where I'm not waking up two or three times to go to the bathroom. Frustrating that I have to wait so long for the blood test - they're currently only able to offer non-urgent blood tests with 4 or 5 weeks delay. Not really good enough but a sign of the times I guess.
The other update to alert you all of is that my blood tissue type is now positive rather than negative. This can happen apparently and may well be due to the infection that I had. Nothing to be overly worried about but it does have a slight knock on effect as it reduces the pool of lungs that I am eligible for. I am redoing the blood tissue test next week and I'm hoping that the second sample will be back to negative again so that I can expand the amount of lungs available to me.
I'm doing my best to stay positive and patient but the longer the wait goes on the more frustrated that I'm getting. No question. I think the frustration is heightened by the fact that our little one's due date is getting closer and closer and the fear that my window may be shrinking. My wife, Lauren, is obviously getting more apprehensive about the birth the closer it gets and the thought that I might not be there to support her through it all is particularly tough. We have an appointment at the transplant centre at the beginning of September where they'll put me through my paces and assess whether I'm still fit to stay on the list - if I haven't already had the call of course! If the window still appears a large one then I might still contemplate coming off the list until after our little one is born - no more than a couple of months or so in total - but I'm certainly not decided on that!
Baby is progressing well so far which is fantastic. We have another midwife appointment tomorrow and hopefully that will remain the case! We've also started NCT classes which I've found useful. So much to think about from birth plan all the way through to what car seat and how many newborn baby grows we'll need for the first few weeks. Someone was even telling us that we need to start thinking about nursery places which is mad! All very welcome distractions though and in many ways are keeping me going when I start feeling a little anxious or frustrated about all things transplant.
The other big drama in our lives has been an AirBnB damages claim that was made against us during our little stay at the end of June in Kent. To cut a long story short we were initially charged £5,000 by the host for spilling a small glass of water on their couch. AirBnB 'mediated' to reduce the amount to £1,400 but refused to cover the damage which the host says was caused by chemicals/cleaning products used by us to try and fix the spill. Of course, we didn't use any cleaning products on the spill but have no way of proving that we didn't and we also didn't take a photo to show that the damage wasn't as bad as what it became as we didn't think there was an issue at all. I notified the host before we left that the spill had yet to dry out and had left a watermark but didn't dream for a second that any more would come from the situation. Sadly because we gave the host a heads up we accepted responsibility in the eyes of AirBnB even though the stain was clearly made worse by chemical/cleaning treatment which we can only assume the host or her cleaners used to try and treat the original spill and watermark.
We have failed in our appeal attempts and AirBnB forcibly took some of the money. I paid the remainder this morning as they were threatening to get in debt collectors for the remainder! Safe to say that it ruined our Babymoon which is also the only holiday we are having this year as I can't fly (pneumothorax risk) and have to be within 2 hours of the hospital in case I get that call!
Certainly it's a lesson learned not to trust holiday hosts ever again and to make sure that we take photos of everything in the property to safeguard ourselves against claims like this. Hope it's not happened to anyone else but would be interested to hear from anyone that it has happened to as I'm thinking about going to MoneyBox about it all to see if I can get some money back!
I'd like to end on a more positive note by sharing a photo of my friend's puppy, Betty, who we puppy sat for last week. She was an absolute delight to look after and makes us want to get another doggy as a friend for our cockerpoo.
Andy
Written by
dodgylungrunner
British Lung Foundation
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Wow Andy! That’s some catch up. A lot’s been happening it seems but not in the way you want. Hoping for no more chest infections and keeping everything crossed for that transplant call very soon. You will be around for baby so don’t worry about that. It’s all very frustrating though. Fingers crossed you’re not diabetic and hope you get results soon.
I think Rip Off Britain would like to hear from you as that’s a disgrace! What horrible people. It’s put me right off staying at any Airbnb property that’s for sure.
Loving the photo of Betty, she’s very cute. Think about getting another dog 🐩 of course but baby’s are very time consuming😘
I’m starting RT treatment on the 31st at QA hospital in Portsmouth. It’s for five weeks, five days a week, followed by two internal treatments a week or so later.
You take care and wishing you well for the future.
We need to call/write/email air b n b and say how appalled we are that people can rip of customers for multiple thousands over a simple water spill with such ease! Remind them about the power of reputation and social media. Next Andy needs to leave a scathing review on trip advisor and other "review" sites so as to for warn people about this particular air BnB. I'm sick of being ripped off and we must fight back
Late effects of your Bone Marrow Transplant could also cause Diabetes.
Since being given oxygen to use are you under a local community respiratory team?
Nathalie was assessed by our local team for her supplementary oxygen and was her 'go to' if she had any problems. A sort of piggy in the middle between a GP and the hospitals.
If you are, contact them to see if they can get you a blood test quicker.
A new dog would be cute, but a heads up - babies to are very hard work especially for 1st time parents. Your life changes completely, forever, and you are already suffering from broken sleep and trust me , this is every night with babies!! And if you get 'the call' your wife , would possibly be left looking any current pets, settling in a new dog to your home, a new born and worrying massively about you, as you will need a lot of care and because your immune system will be so suppressed there will be an awful lot of things that you will not be able to do or even touch. Even more so than post bone marrow transplant.
Keep your chin up but keep your lives simple, things are going to get busy xxx
What an expensive bill for a spill of water. Really is greed, sign of the times we live in.
You are right, always take a photo on entering any property you are staying. A while ago my son when he left home to live in a flat, found that out.
When he gave his months notice they refused to give him his deposit back £400 saying he had cracked something in the bathroom. I was endlessly on the phone, trying every which was to change their minds. No joy.
But Jason said I wonder if Sally had the same problem, she had lived their and gave Jason the nod when she was going to leave.
So in hope phoned niece and asked - had she done any or noticed and damage in the flats bathroom. BINGO-When she moved in she did take photo's and she had a photo of the damage. Jason got his deposit back and did we gloat.
I know exactly what you mean over the trips to the loo every night my conditions are different to yours but, I go a lot in the night - it's energy draining and frustrating.
Good luck with your transplant and when baby arrives, more sleepless nights.
Last year I was given IV steroids for 3 days followed by a real blast of prednisolone, slowly reducing down to 15 mg a day. It triggered pre-diabetes which was alarming. I reduced the dose to 5mg. Saw my consultant who ordered a cortisol test which showed a below normal level. He wasn’t too worried about diabetes but then I am 68 not your age.He wrote to my GP with the details and I have a face to face with him next week which will be part of my questionnaire! My daughter gave me a pill crusher which works really well on halving 5mg pred tablets if you are trying to taper down. I know you can get tablets in 1mg and 2mg formats, my sister had them. I am under the Royal Brompton these days but even they only seem to prescribe in 5mg blocks.
It is a conundrum for you on top of everything else.
Try and avoid taking on another puppy, my daughter did that, but finding dog sitters for one dog is easier than two! Never mind the expense of insurance and dog food.
I wish you and your wife all the very best and really hope you get a call soon from the transplant team.
Sorry to hijack dodgy lungrunners post …..but my GP is monitoring my slowly reducing steroid use , after 20 years of 5mg use ….10 years intermittent use before that , so 30 odd years altogether
I have been prescribed 1 mg pills ….first 4 for a few months , now 3 .
That’s interesting. I’d love to get off them but both my local respiratory consultant and the Brompton have said it’s important for me - I have hypersensitivity pneumonitis, an ILD similar to Pulmonary Fibrosis. Apparently the pred reduces the inflammation in the lungs which helps slow the fibrosis process. My local consultant has set out a target cortisol level, I was on 5mg, now on 10mg. I’m going to ask if I can get another test done to see if this is sufficient. I think I’ll be on them now permanently. I tried something called mycophenolate which is a bit stronger than pred but had to stop it once I got up to the higher levels due to brain fog!
I'm very much in your boat Tryphena134 . They believe that my immune system may be playing a part in my ILD (PPFE) and is a contributory factor to the inflammation and/or scarring that is happening. By dampening the immune system they are hoping to slow that process. Until my GP suggested that long-term prednisolone use could cause diabetes I had no idea that this was something to look out for. I may not have early on-set diabetes (hopefully not) but the fact that it is a possible side effect which the consultant and team didn't let me know to look out for I think is concerning. They should really be monitoring for it periodically too but as ever they're not proactive and probably don't have the resources to be able to do any more than react to things as they occur.
Crikey,what alot going on!hope u dont have diabetes,hope any lung calls fit in with baby.ohh the pup is beautiful!gd to hear yr infections cleared. Hope midwife appointment goes well. Hope u can reclaim some money from air b n b.all the best xxxxx
It's never dull Patk1 that's for sure! Hoping I don't have diabetes, too, but something is going on which I need to get sorted as getting up so often for the loo in the night and huge energy slumps are no fun! Puppy was some very welcome light relief from everything going on with AirBnB. Don't think it's a fight worth pursuing but they have to let me take my card off their systems now that I've paid in full. Hope all is well with you and thanks as ever for taking time to read my posts and leave nice messages of support. Means a lot!
Lots going on for you Andy. Fingers crossed you get your bloods and everything back to normal and hope you dont have diabetes. The photo of your friends dog is beautiful but dont go getting another dog just yet you have enough going on. I really hope you can get some help against the greedy rascals on air b n b its a disgrace how people can get away with this. In the meantime look after yourself and try to keep positive x
Thanks as ever for all your support Izb1 ! Don't worry we've got no plans to take another doggy on full time just yet but it was nice to see Bertie get on so well with the puppy and it'll be nice for him to have a buddy long term. The AirBnB saga is beyond words. I've paid the damages in full through gritted teeth but they still won't release my card and close the case. Every time I ring up I get a different person who can't help and escalates to the team that can but they never reply! Stunned just how little regard for customers they have and how little means of redress you have or protection from fraudulent claims against you.
There sold b an ombudsman u can contact to investigate ths 4u.what about contacting tv " its a rip off" or Martin Lewis " money show".ease the pressure on you.gd luck xx
Absolutely watergazer that whole saga would take all day to explain and we could certainly do without it. I've paid up but it's still not resolved for a whole multitude of reasons none of which have anything to do with me! All very frustrating!
I don't think that blood groups can change either - it's my blood tissue type that's changed. I didn't know that could happen either!
Sorry to hear that you're also knocking on the door of diabetes (hopefully I haven't got it). Were you told that this was something that might happen and to look out for it? I was never told that this was a possibility and I think it's very poor that my treatment team didn't make me aware.
Chest infection is certainly on the wain but not cough hasn't fully gone away even though I've finished the course of antibiotics. Doing my best to rest up though and not over exert myself.
Wishing you all the best Betty and hope you stave off the diabetes.
Absolutely Nula2 . The AirBnB saga has been beyond belief it really has. A post on it wouldn't begin to explain all the ins and outs of it all. I can't let all that sideline Lauren and I from the more important business of the baby and being ready for transplant if/when it arrives. Hope you're well and wish you all the best going forwards.
Hi Andy thanks for the update. I didn’t know blood types can change. Pity about the Air B&B claim on you. Just on the of chances did you check to see if you bank account (travel insurance) or home insurance policy can cover that type of damage? Looking forward to hearing the baby arrival news. Wishing you good health and a successful lung transplant journey for the near future.
Hi BreatheasyBe . I'm not sure that blood type can change either - it's my blood tissue type that's changed from negative to positive but then I didn't know that that could change either. I'll take a look into my travel insurance deal with Nationwide actually as you never know they may cover at least some of the costs for this. Didn't even think of that so thank you! Baby arrival isn't too far away now - October - so she'll be with us before we know it. We're both super excited and I will of course let you know as and when she arrives
Fingers crossed that the transplant and the baby both come soon, but not at the same time. Sorry to hear about air bnb's racket. Phew- I had a narrow escape this weekend- I nearly booked with them. Only deterred because they wanted too much security information. Very best wishes to both of you/ all three of you?xxx
Thanks Alberta56 , hoping that the call comes soon as that will give me enough time to get through the very worst of it before our little ones arrives. Any much longer and it'll be touch and go but we can't control these things! AirBnB are fine if you don't have any mishaps, dodgy hosts or issues. As soon as you have to contact them for anything it all appears to go to pot and it's genuinely appalling how we've been treated. I will never use them again out of principle. Hope all's well with you and wishing you all the best too!
I'm sorry to hear about the terrible holiday trouble. As if life isn't hard enough being so ill. I just want to say keep putting one leg in front of the other. As long as you keep moving no matter how slowly you will get there in the end. Keep your chin up. This is the final push to the finish line. The goal is in sight now. As always I send my very best wishes to you. xx 🍀
Thanks for the pep talk Caspiana . Means a lot! I will keep doing my best to push on and certainly won't give up. Can get hard at times as you know and that's when you have to double down on pushing on. I really hope that this is the final push before transplant when I'll then have a whole new Everest to climb. Really hope you're well and looking forward to the weekend.
Just look at that little face! how gorgeous. Sorry to hear about your holiday Andy, that's a lesson for everyone staying in those places to take photos of any damage.
Take care and have everything crossed for you re the transplant list. You do have a lot going on (don't get another dog haha) 🐶🐶
Such a cute puppy Debs_ALUK - we didn't want to give her back! Very harsh lesson to learn RE AirBnB but couldn't agree more that you need to take photos even for something as innocuous as a water spill!
It's been mad as ever with so much going on as you say. Rest assured we won't be getting another dog just yet. Life is hectic enough right now
Biddy! Great to hear from you! Hope you're well and that everything is going well with Carol and the team
It's always a bit of a dramatic rollercoaster with my life. Not sure why but it's something I'm used to now. A year of no drama would be amazing though - I'm craving boring!
The transplant wait has got harder and harder but I'm hanging in there and will never give up!
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