Christmas blows

Happy Christmas to everyone! Another Christmas day is past and I'm sitting here in front of bad telly - some kind of creepy snowman based film - enjoying a surfeit of chocolate based snacks.

I eventually did get the results of the lost biopsy last Monday and it was negative, thank goodness. So the problems I've had with lung function must have been viral all along, which I guess is some kind of comfort.

This morning I did my blows for the first time in a while, as I was finding getting the lower results a bit depressing, and the numbers are up slightly. So I'm now about 10% under best rather than 15 or 20. Hopefully by my next clinic visit on the 5th I'll be ok again.

Off for a walk in the snow now. Have a great holiday and don't eat too much!


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Lost biopsies

My lung function has now been down for around 2 months so the docs finally decided to bronch and biopsy me on Wednesday this week. The deal is that you stay in overnight and get the biopsy results to see if there is any rejection around 5pm the next day. So I sat there reading and trying to forget the trials of my recent life all day yesterday, only for the consultant to turn up at 5 and announce they seemed to have lost my biopsies and so had no result for me. He said it shouldn't happen, there are systems etc etc. And off he went to the lab to give them hell and try and find my precious lung cells.

This left me and Vicky sitting there with dropped jaws and anger simmering away - he had just said that if they didn't find the biopsies he'd want to do the bronchi again next week which, if they gave a positive result of rejection, would lead to me being in hospital for treatment over Christmas. Argh!

Half an hour later a call came through to the ward to say they'd found the samples but wouldn't have results till the end of Friday (today). So I was sent home to sit it out and wait for the call, which is what I'm doing now. If it comes back positive I'll be back into hospital over the weekend and Monday for steroid treatment. If negative the doc is thinking of easing off my immunosuppression a little to give me a better chance of getting over these viruses that I've been rather prone to get. He is planning to drop back the mycophenalate from 1g twice a day to 750mg twice a day. He said visually the lungs looked fine, and the x-ray was fine, so here's hoping for a negative...


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Just a virus then

I've had a good series of indecisive wobbles over the last few days. Having been offered the FOB on Friday morning and turned it down, I woke up on Friday feeling not so hot and my blows were down so I rang again. They managed to squeeze me in and so I did get the FOB after all. Karthick (sp?), the doc doing the bronch said he'd take a look and use his judgement whether to take a biopsy to check for rejection. When I woke up on the ward he said he'd seen inflammation of the upper airway and that was consistent with a virus, and lower down looked ok so he didn't take the biopsy.

Today I went back to clinic and the tests from the bronchi didn't grow any bacteria (so no antibiotics) but did grow adenovirus, i.e. a cold.

So it seems I have a virus and will just have to wait to get better. As the doc said today 'unfortunately you are in the land of normal people for this one - nothing we can do'.

Reassuring I guess but I'd really like that lung function back, and whatever is said I know I'll be anxious until my blows are back to normal.


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Fobbing indecision

How can you tell a virus from a bacterial infection from rejection? Good question and it seems neither me or my doctor can work it out. It is more and more apparent to me as I go down the post-transplant time line that this whole thing is basically educated guesswork, and the doctors seem to agree and say as much.

I went to clinic last Tuesday, just over a week ago, and was given Jas' post-1 yr anniversary blessings, had a positive chat, and he said he didn't need to see me until January. My blows were a bit down, but hey, it's probably a little virus and nothing to worry about. 'Ring us if they continue to drop'.

So I rang on Friday when things, instead of being about 5% under my best dropped to 10% under my best. I was told to wait and monitor over the weekend and see how it goes. So I did. And it was up and down a bit but on Monday was still bad, and I was complaining of chest aching and tenderness, especially on my right side, preventing me sleeping on that side.

So today I went back to clinic and my blows were marginally lower than a week previously, but not a massive drop. I talked to the doc at length and he eventually decided to FOB me this afternoon, just to check for rejection. But then they said they'd have to cancel my bronch as there wasn't room (which I took as code for a bit of triage going on and me being a borderline case and dropping off the bottom of the list...)

So here I am writing this instead of having bits chopped out of my lungs. They offered me Friday am as an alternative but that would totally ruin fireworks night and the weekend, so I've gone for next Tuesday - clinic again and then, if required, a FOB. Doc seemed happy with that approach.

With a bit of luck it'll sort itself out over the weekend. Here's hoping.

Problem is that a normal person, if they get a respiratory virus, might feel a bit tight in the chest or have a bit of a cough, but wouldn't know if their lung function was affected. If you are a post-tx person then you are measuring those blows every day and so see every little variation and who's to say that a normal person wouldn't also see a 10% drop if they had a cold?

Just need to try harder to avoid getting the viruses in the first place...if it is a virus and not rejection...and won't know that till next Tues...

First year milestone passed

It is 6 mins into day 366 post op, which means I'm into year 2. Thank you to everyone for your support, kindness and friendship over the last year.

This time last year I was off the ventilator in the critical care unit and Vicky was just heading off along with my sister for some sleep having completed a nerve wracking 24 hours.

Tonight we celebrated with last minute tickets to Avenue Q in the west end - utterly hilarious and very rude...with muppets!


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Donor Day

October 22nd 2009. The day before my transplant in the early hours of 23rd October, and in fact the day I got my call at ten to midnight. On this day, somewhere, probably in the South or East of England, a tragedy happened and a family lost a son, daughter, wife, husband, mother, father, brother, sister, niece, nephew, cousin... Of course I still don't know to this day the identity of my donor, but every year on this day I will feel sorrow and sympathy for that family, mixed with incredible humility and gratitude. Tomorrow I shall celebrate the first anniversary of my new life; today I mourn my donor's death. Out of death came a gift. Out of a gift came life.

This experience has been the closest thing to a miracle that there is. Please join the donor register now and let others have the chance to live and love some more. http://www.organdonation.nhs.uk/

Another set of holes

I'm back home having been released from Vascular Ward L5, Bay 1, Bed A on Saturday at around midday. I was glad to get out of a very strange place populated by odd men, mostly from Bury St. Edmunds it seemed, talking in broad Suffolk accents about their diabetes and the amputations of legs and toes they'd just suffered. So I was busy dry retching in the corner while the old boy opposite, Frank from Bishop's Stortford, "Oi'm 82!!" strained loudly to have a shit into a potty while lying on his bed, weird John from Bury screamed as the nurse applied a vacuum dressing to his recently amputated toes and Trevor, a belligerent ex-shop steward (trade union official) with seemingly very limited intelligence made his best attempt at fairly cruel banter to all three of us when not explaining how 35 years of mis-managing his diabetes had led to his leg being taken off below the knee, and then how he fell on the stump and had to come back in to get it fixed.

I guess in a sense this was a fascinating insight into both the broad swath of humanity out there but also into an area of medicine I'd never really encountered before, but it would have been nicer to have been around other people who'd had Upper GI surgery so the nurses were more attuned to my needs.

As Vicky has said it was pretty horrible but is getting better fairly rapidly day on day and I'm feeling less pain, less sickness, and am managing to eat a little more each day. I think it'll be ok. And I'm no longer refluxing, which is quite pleasant and at least showed the surgery did it's job.

...and as well as the long armpit to armpit clamshell scar and the four drain holes from transplant I am now the proud owner of another 5 scars in my stomach.







You will note where the chest wig ends just below the scar from transplant (not even visible now through the hair!) thanks to them shaving the operation area. Luckily I am like Esau, an hairy man, (Genesis 27:11 - look it up), which means I won't inherit the kingdom of God (only smooth skinned men appear to do that) but it does mean it'll grow back and the scars will disappear in the forest.

P.S. Thanks for all your lovely comments and support over the last few posts. And Jess, thanks for your reply on the CF forum too - if you had this done with CF lungs then I'm in serious admiration. I had a bit of sputum the few days after this even with tx lungs and coughing it up hurt! I've no idea how I'd have managed before tx.


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