Sorry for lack of blogs but as usual I have excuses! I was re-admitted to the transplant unit last week in quite a bad way. I went to clinic last week, now I'm still learning about my new lungs I don't yet know what is normal and what isn't and I guess I just thought how I was was how it was supposed to be and it was normal. I'd received reassurance that it was ok and things would get better and with that I didn't make a fuss about how things were, half kidding myself in a way and pretending I was ok. It became clear at clinic it wasn't normal, the team were quite alarmed and I wheezed my way upto the ward.
The next morning I went for a CT scan and later an urgent bronchoscopy and that showed exactly what was wrong. The team struggled to get a 2mm scope into my right lung. Myself and the donor were not 100% the same size, that of course is not always possible, to find two complete strangers that are exactly the same size. And so where the donor lung is attatched to my airway there was a size mismatch and to repair this my body healed aggressively with scarred tissue and this lead to a very narrow airway, infact about the size of a pin hole when its supposed to be around 4cm. This meant there was alot of trapped mucus in the base of my lung and that was the cause of the grumbly, wheezy noises I'd been making with very little effort and the hacking night time cough. Thankfully I didn't remember anything about the bronchoscopy as apparently it was quite nasty and one of the surgeons was pulled away from theatre to look at the tiny airway they saw on screen. It was decided instantly it couldn't be left and the next day the same surgeon was called in (it was weekend) and handed me a consent form. I was nervous but knew something had to be done my breathing wasn't great at all, I was on oxygen, cpap and alot of IVs. In theatre I was put under GA and the narrowing was mannually widened and the trapped mucus was cleared. It all went straight forward and I was back to the ward within an hour. The wheezing had stopped and I could breathe a bit easier apart from a bit of bleeding. The day after I was seen by the on call consultant and another bronchoscopy was planned for the next day, he was concerned there was still alot of mucus in the lung that was to thick for me to clear. So I went for another bronchoscopy which I was told looked alot better partly because the camera did actually get into the lung this time but there was still alot of mucus. The operation will have to be repeated at some point and probably again in the future. Since then I've been recovering on alot of IVs and with lots of help from the physios and of course the transplant team. This blip has shaken my confidence, not in the transplant team, I can't fault any of them and can honestly say I've never trusted a whole team of people before but I trust them but it's taken me back a little to 'these lungs were not mine, they've come from someone else, they haven't always been there like my old one's were'. I'm taking it as just a reminder and plan to take things a bit easier when I next get home and not try and cram everything in like I did. The team still have a few things to straighten out and it looks like I'll be until about the end of next week but I'll keep you posted.

new beginnings

On Friday (May 28th) I made it home! I've been through alot in the last 79 days but I know it's all going to be worth it. I won't lie it is hard being home, things I didn't even have to think about in hospital have suddenly become an issue. The fact that not all steps and seats are the same height threw me a bit. When I got home mum helped me out of the car and due to my excitement I forgot there was a drive to tackle, hills are not something I've properly taken on yet and drive feels like a steep one! And attempted to 'dash' into the house forgetting there was a rather large step and nearly toppled over, thankfully mum was behind me. First night home was a bit uncomfortable, stretching, bending, twisting and lifting litterally anything is still a little painful and I didn't sleep to well. Don't get me wrong I feel good but recovery is still in it's early stages, the fact that I can do all those things and still breathe at the sametime is still a novelty to me. I love thinking about the things I have planned, the things I'm thinking about planning and the fact that there's going to be many more to plan in the future. Hell the fact I actually have a future to think about now is amazing in itself.
Organ donation is a miracle, I'm living proof of that!

Onwards and upwards!

Hey guys, Pete Again

Rach has been doing fairly well, she said to me that she feels a little stronger yesterday so thats good  !

She said to tell you she is having to use overnight cpap as her lung seems to be a bit grumpy right now, and this may be long term while she strengthens her new shiny lungs, but she doesnt mind, its better than 24/7 !

She also said her team are fantastic, really looking after her and helping her along :-) I know from what she has been saying that her surgeon, Mr Yonan is also a great guy, funny, sarcastic and knows his stuff, which obviously makes things alot better for her ! He gives as good as he gets with our Rach too, which is a brave thing to do !

Thats about it, Il leave you with a pic she sent me this week :

Quick update from Pete

Hey all Pete again


Rach asked me to update you all as she has been SUPER busy recently with Meds and getting herself as good as she can.

She has had a rough time to say the least. Infections are the latest in her battle to recover, and she is currently fighting them off with a whole wave of nebulisers and IV antibiotics. But they are doing the trick slowly which is positive !

She had another Bronchoscopy today so she is understandably very tired now and fairly sore (So dont be surised if she doesnt update facebook for a few days) but hopefully all will have gone well with that and she will be ok after some rest.


She is also doing alot of physio to strengthen her lungs, another reason she is so tired, but this is a good thing as it means she is working hard at it !

And thats about it for now, she could do with some mendy thoughts still, so send them her way please :-)

Pete

A quick hello from Rachy!

Hello bloggerland! It's me!
I thought I would write a quick entry to say thankyou for all your kind messages, cards, gifts, texts, emails, I have read every single one of them. You are too kind.

As Pete said I'm now out of the intensive care unit and settled nicely on the transplant unit. I know some of you have asked for the new address so here it is:

Jim Quick Ward (transplant unit)
Wythenshawe hospital
Southmoor Road
Manchester
M23 9LT

Things are going great right now and I feel so much better. I'm working hard with the physios and getting stronger every day. I feel so very lucky to have such a supportive team behind me and I owe them along with my kind donor family and donor my life. From what we have learned recently about my old lungs we know I really didn't have very long left and my call came just in time.

Before I sign off I have the press coming on Wednesday and the plans are I will be on both BBC and ITV news (regional) and also featured in the Manchester Evening News. Look out on facebook and twitter for times and for those outside the northwest sky channels. I'll leave you with a picture taken today.