Transplant assessment delay - thanks for nothing PCR test!

[dodgylungrunner]

Today I was expecting to be starting the process of thinking over whether I want to go ahead with a future lung transplant or not. Instead, I'm having to put everything on hold after falling at the final hurdle ahead of my lung transplant assessment which I was due to undergo today and yesterday. In short, I got Covid. Or at least I got a positive PCR test result and I'm now self-isolating.

To say I was surprised with the result is an understatement. I've been nowhere at all in the last 14 days bar a blood test in an empty hospital at 8 am in the morning where I was in and out in 20 minutes. I've also not returned one positive lateral flow either before or after the test last Friday. Nor have any of my family. Nor have I displayed any symptoms at all. Bizarre in the extreme to the point where as unlikely as it seemed, I thought that the test might even have returned a false positive. I decided to do another PCR test with my Dad on the Saturday morning and both of these came back negative for Covid less than 24 hours after the positive result.

I informed the hospital immediately and understandably they opted to err on the side of caution as a false positive is so unlikely statistically. Fortunately, I don't have to wait long for the rearranged assessment as they've managed to find a space for me on 14th February. In the meantime, I'm having to treat it as if I have Covid so I'm sticking to the isolation rules. Today is day 5 post the test and I'm still lateral flowing negative so if I'm negative again tomorrow I will technically be allowed to out as per the government guidance. However, I'm going to leave it another day or so just to be on the safe side.

Initially, I was gutted that the transplant assessment would have to be delayed as I'd built myself up for it mentally and had all the questions clear in my head that I wanted to ask. I was worried that they wouldn't be able to fit me in again for a few months, which would drag out the whole process and fuel my uncertainty. However, I've got my head round it all now and I'm ready to go again. In reality, this is just a little bump in the road - another few weeks of waiting isn't a great deal in the grand scheme of things.

My initial focus on the impact of the positive result of the transplant assessment means that I hadn't stopped to appreciate the potential significance of having Covid. If I have it - and it's a big if - then touch wood my body and the vaccine have responded to it really well. What's frustrating, though, is that ultimately I can't be sure that I have got it given I haven't got any other evidence to back up the initial PCR test.

Not sure if anyone else has felt the same but there have been times where I've thought that I just want to get Covid and get it out of the way. Don't get me wrong, I've never thought I want to go out there to actively get Covid. However, if I did get it and found that I didn't suffer too badly from it, it would be a big weight off my shoulders as I'd feel a lot more comfortable about doing low risk activities that others just take for granted. Does that make any sense?

Anyway I'm waffling! In short, there's a delay on the transplant assessment for now but hoping that I'll be in a position where it can go ahead on the 14th. I can than get the information I need to make a decision before moving on to focus on what I need to do next to be ready for whatever comes next.

Thanks to everyone that's followed my blogs and sent me messages of support and advice. So lucky to have such a supportive community on here where I can share my feelings openly without judgement.

Cheers,

Andy

[sassy59]

Bless you Andy, what a blow! It all sounds a bit iffy to me but you’re doing the right thing by isolating. It could only happen to you. Never mind I’m sure St. Valentine will be keeping a close eye on you.😘Wishing you well as always. Good luck to you.👍🤗💕xxx

[dodgylungrunner British Lung Foundation in reply to sassy59]

It was bizarre as I haven't posted one positive lateral flow at any stage. Totally understood where the hospital were coming from as they can't take any chances. Not too long to wait either so no harm done! Will keep you posted on how everything goes. Thanks as ever for all your support.

[sassy59 in reply to dodgylungrunner]

👍❤️🤗💕

[HollyBoyd]

Hi Andy. I think they call it 'sods law'. A blow, but one you have overcome and ready for St Valentine to be your lucky day! Wishing you all the very best for the 14th xxx❤️😊

[dodgylungrunner British Lung Foundation in reply to HollyBoyd]

Haha absolutely! Clearly wasn't meant to be. Pleased that the new assessment date isn't too far away but date wise my wife isn't too happy

[CDPO16]

Very frustrating for you as well as puzzling. As for your thoughts about getting it and getting it over with, it's best that you haven't. A friend of my stepdaughter has caught it for the second time and is quite ill. She is double vaccinated and boosted.Best wishes for the 14th xx

[dodgylungrunner British Lung Foundation in reply to CDPO16]

Puzzling indeed but no real harm done as the rearranged assessment isn't too far off. Completely agree RE having COVID. I'd much rather not take my chances especially as I'm vulnerable but there is a part of me that would be relieved to have had it and know that I've been able to get through it as that's obviously the niggling doubt/fear that we all have. Really sorry to hear about your stepdaughter. I hope she's over the worst of it now and on the road to recovery?

[CDPO16 in reply to dodgylungrunner]

Stepdaughter's friend Andy and she's over the worst of it now, thanks.

[Mrbojangles]

That’s a bugger but fingers crossed a valentines day assessment will still be on.I had Covid in July with IPF and apart from a stinker of a headache it passed me by without too much hassle.

Stay strong and drink Guinness.

👍

[dodgylungrunner British Lung Foundation in reply to Mrbojangles]

Thanks Mrbojangles ! Full steam ahead for 14th February as it stands though Mrs J isn't too happy about the date! Encouraging to hear that you got through Covid ok back in July. You wouldn't want to get it again but I guess it makes you feel a little bit more confident? Guinness is a great shout! 1 or 2 might need to be consumed with the rugby tomorrow.

[Damon1864 Volunteer]

Good luck for the 14th Andy hope all goes well. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[dodgylungrunner British Lung Foundation in reply to Damon1864]

Thanks Bernadette! I'll keep you posted on how I get on. Really hope you're well and looking forward to the weekend?

[Patk1]

So disapppointing4u! But not long to wait!! Well,it certainly looks like a false +Hope u can relax b4 gearing up to go again n x

[dodgylungrunner British Lung Foundation in reply to Patk1]

Absolutely Patk1 not too long to wait in the grand scheme of things though my wife isn't too chuffed with the date The whole situation was bizarre with the PCR test. Just one of those things at the end of the day - clearly the original date wasn't meant to be!

[Patk1 in reply to dodgylungrunner]

Not long now.do keep us informed.oh,I bet haha.u can spoil her b4or after..or both! Yes.just shows tests can b inaccurate.

Hope yr able to relax and enjoy weekend xxxx

[MELNEL]

Wow 🥺 what for a rollercoaster! I had the same problem with testing positive and negative. I had been tested positive and I know I had all the symptoms with loss of smell and taste. After a while I tested negative and done my isolation. I went out for a walk and tested positive again later in the evening before done another and was negative. I called the helpline they sent me another PCR Test and that was negative as well. Do I totally understand that you are frustrated. I was too.But now all goes as planned for you do best wishes that all will go well for you.

🤗👍✨✨✨

[dodgylungrunner British Lung Foundation in reply to MELNEL]

Gosh MELNEL it sounds like you've been through it more than I have with the COVID tests. Don't know about you but it all feels a bit weird that the government are now trying to push on as if COVID no longer exists. Totally get that we can't stay in hiding forever but feels wrong to be abandoning all measures.

[MELNEL in reply to dodgylungrunner]

I still will do the testing but they should be more accurate I don't have a problem to do them, it's for my own and for others to be negative. Safe better than sorry 😃 best wishes 🌺🌺🌺

[Katinka46]

Oh Andy! What a bummer! So very sorry. Miserable business, must be stressful enough to have to gear yourself up for the assessment and then to have it all collapse like a soggy balloon. Lots if love and virtual hugs

Kate xxx

[dodgylungrunner British Lung Foundation in reply to Katinka46]

Thanks Katinka46 ! It was hard to take at the time only because the result was such a shock and I'd been so careful in the build up to the PCR test. Clearly wasn't meant to be though and I'm fine with it all. Onwards and upwards! Really hope you're well and thanks as ever for all your support!

[Greenthorn]

Andy, that was a good read. You certainly spell it out - perhaps you should put it in a manual in red capital letters! Seriously, who needs a set of red traffic lights on your journey to the assessment? But you are still at the wheel and the lights will turn green. I wish you a smooth journey to the 14th.

[dodgylungrunner British Lung Foundation in reply to Greenthorn]

LOL! Maybe I should

I was really frustrated/surprised when I first got the result which I'm almost certain was a fake positive. Clearly the assessment wasn't meant to be last month! At peace with it all now though and ready to roll on the 14th February.

[Greenthorn in reply to dodgylungrunner]

Good man Andy, keep your thoughts on the far horizon. I can see you writing a manual on your recovery!

[B0xermad]

Oh bugger just what you didn't need right now but at least valentine's day will give you a chance to get the assessment done without waiting to long .Good luck let's hope it was a false result on lateral flow 🙏

[dodgylungrunner British Lung Foundation in reply to B0xermad]

Absolutely! A few weeks really isn't all that long to wait in the grand scheme of things. Pretty sure it was a false result as I returned no positive lateral flows and experienced no symptoms. Just one of those things I guess...

[watergazer]

I like your positivity Andy. February next week so not long till your assessment x Anita .

[dodgylungrunner British Lung Foundation in reply to watergazer]

Thanks Anita! Got to stay positive otherwise we'd all go bananas! Really hope you're well and thanks so much for all your support!

[BreatheasyBe]

Oh Andrew that’s rubbish about the positive test. At least you’ve not to got any symptoms with a suspected false positive. You don’t have long to wait for your assessment. Good luck

[dodgylungrunner British Lung Foundation in reply to BreatheasyBe]

It was a bit of a bolt out of the blue to be honest! Pretty sure I didn't actually have COVID but if I did then I was symptom free which is a potential silver lining I guess?

[rachelmi]

Aww that’s rotten for you… BUT as you say it’s a blip and sometime down the road you will probably hardly remember the delay. ( Although obviously right now it seems huge)Your assessment and decision will still be made at some point, albeit a bit delayed. Totally relating to your views on catching Covid, feeling exactly as you. You are doing a great job, hold your position and go again. Thinking of you and sending best wishes Andy 🤗 . Positive vibes and strength 💪. Another frustrating hurdle. You will get there xx

[dodgylungrunner British Lung Foundation in reply to rachelmi]

Completely agree that the delay means very little in the grand scheme of things. I think I just got myself so wound up to go and been so careful on the COVID front. Still not convinced that I actually had it but if I did then I had no symptoms which would be a definite silver lining. Thanks so much for all your support as ever. I'm hanging in there fine at the moment and I'm ready and raring to go for the transplant assessment take 2!

[rachelmi in reply to dodgylungrunner]

Go Andy! 💪 bring on the assessment! Full steam ahead 🤗

[Izb1]

What a rollercoaster for you Andy. I must admit to not trusting these covid tests and haven't for some time, I just dont think they are reliable but whichever way it went if you did have covid I am pleased that you didnt suffer any effects. I think the fact that you have bounced back and now ready for the transplant appointment is good news. Wish you all the best for the 14th x

[dodgylungrunner British Lung Foundation in reply to Izb1]

All very bizarre on the test front. Almost certain I didn't actually have it but I guess we'll just have to wait and see. Ready and raring to go for the 14th as you say. I'll keep you posted!

[Karenanne61]

That's rubbish but good luck for the 14th.

[dodgylungrunner British Lung Foundation in reply to Karenanne61]

Thanks Karenanne61 . Hope you're well and hanging in there ok, too?

[Dedalus]

Great you're staying positive and at least the delay isn't too bad. Good luck on 14th February 👍

[dodgylungrunner British Lung Foundation in reply to Dedalus]

Absolutely! Got to stay positive and calm otherwise you'd go insane right?! Delay really isn't all that bad in the grand scheme of things tough Mrs J isn't happy with the revised date being Valentine's Day!

[teenieleek]

Bummer indeed and also a bit strange. I also have thought it would be great to have had the bug, with few symptoms and so feel more confident going out and about BUT (notice big but!) what if we were unlucky, got it badly and ended up in hospital. Some people who, statistically, should be very ill with it get off lightly and others who shouldn’t get it badly end up in a bad way. Better not to catch it I think.

[dodgylungrunner British Lung Foundation in reply to teenieleek]

I'm glad I'm not alone in thinking that about COVID. As you say, I don't really want to take the chance even with all my vaccinations but it would be a weight off my shoulders to some extent if I did have it and came through without any real issues. Hope you're well and having a good week? Thanks so much for all your support.

[Dubba61]

Oh dear! And you had gotten your head around it, too and are doing all the right things. Good luck for Valentine's Day.

[dodgylungrunner British Lung Foundation in reply to Dubba61]

I guess it wasn't meant to be! Shocked at first but got my head round it all now and ready to go again later this month. I'll keep you posted on how I get on.

[DeeBee60 in reply to dodgylungrunner]

Yes, it wasn't meant to be is a good attitude. Best of Luck with it. 👍

[Biofreak]

Just what you don't need right now. I can't believe you are positive considering how careful you and your family have been. But pleased your assessment has been rearranged quickly. Keep your chin up and good luck for the 14th Feb.

[dodgylungrunner British Lung Foundation in reply to Biofreak]

Not ideal by any stretch - especially when we'd been so careful as you know. I really don't think I had it to be honest as the follow up PCR less than 24 hours later was negative, all my lateral flows have been negative and I've had no symptoms. Just got to put it down to one of those things and the new appointment isn't all that far away so no real harm done.

[Firefly25]

So frustrating for you but thank goodness you haven’t got to wait long for the next appointment. I know exactly what you mean about sometimes wishing I could just get covid and then relax a bit-it’s the uncertainty about how bad it would be that’s so scary! Anyway wishing you lots of good luck for the 14th. Take care 😊💪

[dodgylungrunner British Lung Foundation in reply to Firefly25]

Absolutely! Not too long to wait in the grand scheme of things and I've got my head round it all ok. Glad I'm not the only one to think that about COVID. Don't get me wrong I'd rather not get it but I would like to know that I'd be ok. Would be a huge weight off my shoulders and yours, too, by the sound of things.

[Debs_ALUK Partner British Lung Foundation]

Gutted to hear of your set back Andy, hopefully everything else will be on track from now on. Will be thinking of you on Valentines Day

Debs

[dodgylungrunner British Lung Foundation in reply to Debs_ALUK]

Awww thanks Debs_ALUK ! Frustrating at the time but not a huge issue in the grand scheme of things. The 14th will be here before I know it and in the meantime I've had the opportunity to read up a little more, crack on with pedalling on my static bike and sort out some lifemin tasks that were long overdue. Pass on my best to Carol and the rest of the team!

[Alberta56]

Sorry for the set back. Best wishes for the 14th. Don't bother to get covid. I felt pretty bad for 3 days and I still get tired very easily. xxxx

[dodgylungrunner British Lung Foundation in reply to Alberta56]

Really sorry to hear that you struggled with COVID. I hope you're feeling better now? My Dad got it really badly in the initial wave and is still struggling with the after effects. Definitely not something to be taken lightly and I certainly don't want to actively seek it out. Just wish I could know that I would be ok if I got it as that would be a big weight off my mind

[Alberta56 in reply to dodgylungrunner]

Fingers crossed your youth and fitness will help you if you do get it. I'm retired, so it doesn't matter too much if I fall asleep at funny times.

[BreatheasyBe]

How are you doing now? Hopefully all symptom free and ready for the next stage in your journey towards transplant. I’ve my app on the 21 feb. I’m currently in the house with mum and dad both positive but I’ve taken to hibernating upstairs. Good luck and let us know how you get on.

[dodgylungrunner British Lung Foundation in reply to BreatheasyBe]

Great to hear from you as always BreatheasyBe . I'm good thanks! Remained symptom free throughout my 'COVID' isolation and I'm gearing myself up for the assessment on the 14th. Really sorry to hear that your mum and dad are both currently positive. I hope they're both ok and that you're managing to stay clear? My Dad got COVID in the first wave while I was living with him and we had to steer clear. Very tense but we got through it in the end. Best of luck ahead of your own appointment. Are you also going in for a transplant assessment?

[BreatheasyBe in reply to dodgylungrunner]

Yes double lung transplant I don’t think I’m quite there yet (feel I’m too good) but will leave it up to the professionals to decide.