Back in

Well I've been feeling a bit crappy for a couple of weeks. I started to notice a gradual dip in my exercise tollerance, an increase in breathlessness and lack of appetitte plus my cheeks were constantly glowing! Related or not I don't know!
I had a CT scan last week and I'm quite glad it came along on a day I was feeling really quite bad as it reflected how I was feeling in the following clinic appointment when I got the results. It showed I had a small pneumothorax (collapsed lung) in my pesky right lung, it seems to be the mischievous one! And 'scraggy' white patches which looked like inflammation over both lungs. My consultant said he'd seen alot of this before and although there was more than he'd have liked to seen he wasn't too worried but did want to get to the bottom of what they were, for sure, asap. A bronchoscopy and biopsy were planned for the following Thursday, just 2 days later. Wednesday saw me lounging in pjs all day with no energy or breath to do anything, I was back on oxygen and I couldn't even stand up long enough at the sink to wash. I had a few teary moments, out of frustration, feeling helpless and the worry that this is just how things were going to be, that this was it. Everything was an effort and poor mum was waiting on me hand and foot, I felt so guilty. I turned up for the biopsy yesterday and my consultant (different one to Tuesday) was weary. I admit I was worried about how I'd cope with the bronchoscopy as I was feeling really quite bad but I wanted it done so they could get to the bottom of it and I could get back to feeling better. After a chat and a check of my oxygen levels it was decided I wasn't well enough and it was cancelled. They sorted a bed out on the ward and I was sent up. I'm being treated for a bout of rejection, my second bout now (I had a bout during recent pneumonia) so they're looking at changing around my antirejection medication to prevent further bouts. Rejection is common during the first year of transplant, its takes a while for you to adjust to the treatment. But I find it so worrying, rejection brings back all the memories of my old lungs and my struggles I had with them, the struggles I don't want to be reminded of.
Anyway now the treatment has started I'm already starting to feel a bit brighter and hoping not to be in too long.

Thoughts

I've been doing alot of thinking lately, I know not always a good idea. About my lungs, my health, my donor. I asked about my donor whilst in clinic the other day in view of writing to my donor family (if anyone could give me any info on how to write my letter I'd appreciate it!). My lungs came from a 20yr old local woman. It was shocking to hear my donor was actually younger than me, I just presumed the lungs would have come from someone older than me. 20yrs old is no age to die and what her family is going through now could easily have been what my family had to go through. But because of that young woman and her family I'm here today and couldn't be more thankful.
I've had 2wks at home and although I'm still struggling with breathlessness, needing a bit of oxygen and I think recovering from the Pneumonia I'm actually for the first time since the transplant starting to feel more human and, well, more me. Feeling like this has reminded me how much I hate being ill and also how much I've missed out on because of being ill.
On Wednesday I met friend Laura for lunch. Laura is 30 and had a double lung transplant roughly 6wks after me, we were next to each other on the ICU for a while and we had similar, rocky recoveries. When she made it to the transplant unit we would sit up together late at night and just chat. It's nice (well not nice because I wouldn't wish a complicated recovery on anyone) to have someone that knows exactly what your going though and has been through the same or similar. Laura had Pulmonary Hypertension and although the team are still monitoring her heart closely she's doing well. Its little trips out like this with friends that are playing the part in making me feel more human and more normal, even if I am anything but ordinary!

Erm stop the ride I'd like to get off?
Lack of blogs, again, sorry.
I caught a rather nasty pneumonia and ended up in ICU. I can tell you it wasn't fun. It all seemed to happen so quickly, I'd called clinic on the Friday as after having a Bronchoscopy on the Thursday I wasn't feeling 100% and felt like I maybe needed antibiotics. My consultant who had only seen me the previous day when I was feeling ok said he was happy for me to wait until Tuesday's clinic where I could have blood taken to see if I really did need them. And I was in agreement with that (if I hadn't I'd have just pestered my GP for some), it seemed the sensible thing to do. On the Saturday I was feeling ok but in the evening felt 'shivery' and threw up, checked my temperature which was fine, took a couple of paracetamol anyway and went to bed. Early Sunday morning I woke myself up by what can only be described as 'grunting' in my sleep, it was actually mucus rattling around in my lung. With my diaphragm as it is that's not uncommon for me but then I got up to walk to the bathroom. Once back I sat clutching my knees trying to catch my breath on the edge of my bed and decided out of interest I'd check my oxygen levels. Sure enough they'd dropped to just 80% but were slowly coming back up as I was catching my breath. Maybe that should have set the alarm bells ringing but it didn't, it shot to the back of my mind as 'one of those things to tell the Drs at clinic next week'. As the day went on activities were becoming more difficult and the oxygen concentrators in the utility room had to be switched back on. I could hear my heart pounding in my ears and my oxygen levels were in the low 80s, I went for a nap and again started shivering, my temperature had jumped up to 38.4c (102f). At that point I grabbed my transplant handbook and had a look at what acceptable temperatures were, that wasn't one of them. So mum phoned the ward and I grabbed a bag. The rest is a blur of IV and blood gas stabs, CPAP and ICU. The same ICU room I was in post transplant. If I'm honest it didn't worry me all that much, sure it was bad, the infection knocked my lungs for six, I was out of breath but I've had worse, things have been worse and I think that's what helped me keep my calm through it.
I'm home now, slowly recovering, its taking time, I can tell the pneumonia was a big one put it that way. We aren't yet sure if the infection has caused any long term damage but I'll deal with that when we do know.
On a lighter note it was my dad's birthday this week and we got away to Warwick for the night so I'm going to leave you with a picture that was taken of me whilst there as I've noticed there's not all that many of me post transplant yet!

If there's one thing I value in people it's honesty, I started my blog so I could write about how I'm honestly feeling. I've had some stick recently over admitting how I'm feeling but you know what? That isn't going to stop me. I'm by no means complaining, I couldn't be more grateful I got my second chance and I don't regret going through with transplant at all because I know how much better off I am now. I appreciate so much the well wishes and the "it gets better!" comments, I just wish I could skip forward to that part.
I never expected transplant to be a walk in the park but the complications I've been having recently have brought me crashing down with a bang. It's hard at the moment, I want it so much to go right, I feel like I've paid my price with 8yrs of lung disease, to many near death experiences to count, my battle to get on the list and then stay alive long enough to get lungs and finally living through a double lung transplant. I feel like I've more than kept my end of the bargain.
I had clinic today and had mixed news I had a CT scan last week, there have been a few areas of concern in my right lung, recent CT showed those have decreased in size (well they have but another has been picked up and got bigger) with the recent 2wks of IV antibiotics I've had, this means they're infection. This would be good news but my last bronchoscopy showed I have 'floppy airways' in my right lung, basically when I cough to bring up the mucus they flop shut trapping it and there lies the problem. It's basically sitting there a breeding ground for infection, my cough is already not very good at clearing my right lung anyway due to my paralysed right diaphgram. I'm also having trouble with my white blood cells, on leaving on Friday my myfortic (MMF or cellcept one of my main anti rejection drugs) was stopped due to low white cell count. From what I understand not everyone is on MMF due to this but I'd rather be on it if I can be to put my mind at ease more than anything. The thought of rejection scares the hell out of me. The plan at the moment is to wait and see what happens, the team have as usual been fantastic and are planning regular CT scans and bronchoscopies. I may need some help from an airway stent to fix the issues in this right lung but I'm hoping to avoid that if possible. For now we watch, wait and hope!


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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.