Thursday, May 29, 2008

Rejection

Well as you can guess from the title my bronchoscopy wasn't quite as positive as I had hoped for. Despite oxygen saturations of 100% and my lung function going up to 2.14 litres (75%) the lung biopsies have shown evidence of acute rejection. There are 4 stages of rejection, with 1 being mild and needing no or little treatment and 4 being very severe. I am between stage 2 and 3, which means it's at a moderate level and requires treatment - which is 3 days of IV steroids (for my medic friends that's methylprednisolone 440mg/day) After the 3 days my oral steroids will be back up (to 60mg) and then be gradually reduced by 10mg/week until I am back down to 10mg daily. The consultant was very surprised that I hadn't been feeling unwell and that my lung function was up. I have been a little tired and breathless walking the dog but I had put that down to being unfit and overdoing things. After all I have no idea what normal is and all I knew what that I felt better than I did before the transplant. One positive thing about this is the fact I should feel even better once it has been treated, and my lung function may well go up further. Acute rejection is extremely common in the first year, and especially the first few months, so this is not unusual. It is also very responsive to the steroid treatment so hopefully it will be under control asap.

The only other worrying thing from today was that the biopsy also showed some evidence of humoral rejection, which is a different type of acute rejection involving antibodies (proteins my body has made to attack the new lungs). Apparently this is very uncommon in lung transplants and the treatment would be different to steroids. At this stage however it is only a MAYBE as there are other tests they still need to carry out to confirm or refute this. The consultant feels that in light of how good I am clinically, its entirely possible that further tests will eliminate this. I did ask a lot of questions but the doctor felt there was little point going into all the ins and outs until we know for certain whether I have this. Needless to say I am quite worried about this and although I know I need to wait on the test results, my mind is racing ahead and imagining all sorts of possibilities.

So, I'm back to isolation at the moment as I am being seriously immunosuppressed with the steroids. This does at least mean I have my own room again, as last night I was on bay with 3 other ladies. One was a young girl who couldn't stop vomiting and needed me to press her buzzer for her, there was an old lady who belched all night and wandered to the bathroom with her bum hanging out the back of her gown, and another post-op middle aged lady who appeared to be sipping vodka from her water glass (i kid you not). I put my head phones on and pretended to be very engrossed in my pay to view TV ;-) I suppose it helped pass the time..

Mum is staying down here, as Andrew has to go to work. I felt terrible leaving wee Seb again, and when he saw me packing my suitcase his wee tail went down and he moped about all night. He then tried to bar my exit the next morning by sitting in front of the door and refusing to move. Andrew said he was moping about all day, checking the front door regularly to see if I was back. I think he is ok now though so hopefully he wont be too huffy when I finally get home!

I will update if I hear any more news about the rejection, but I can't imagine I will hear anything soon. Fingers crossed its nothing to worry about and I get home soon and back to enjoying my new life.

13 comments:

Tinypoppet said...

Thinking of you loads Jac....as you say acute rejection is extremely common in fact one doc told me that nearly all Tx patients will experience a bout of rejection in the first year.

Here's hoping that's all it is (as scary as the R word sounds!) and that you are home back with Seb in no time at all, before he goes off you all together ;)

higs galore xxx

Anonymous said...

Keep your chin up - you will be home soon -this is only a wee setback .LYL Carol Ann & Bobby xxx

Anonymous said...

Hi, oh that's annoying, hope the steroids kick it into touch quickly and the antibodies prove to be nothing serious. Best wishes, isla xx

Anonymous said...

Hi Jacqueline

Sorry to hear about this wee setback but we suppose it had to come - all things being equal.
Hope you're back home soon and getting on with life. There'll be lots of ups and downs but more ups than downs for sure. Take care and we'll look forward to hearing better results tomorrow.
Lots and lots of love
Anne, John & Ross
xxxxxxxxxxxxxxxxxx

suzie said...

Hiya Jac,

I can only agree with everyone else on the rejection thing being very common,I'm sure you'll be up about and out of there in no time chuck.

Great big (((HUG)))
xxx

Anonymous said...

Hi Jac.
Thats disappointing to hear but then when you hear most have in the first year its more reassuring. Hope you are doing ok and not winding yourself up too much.
Thinking of you and sending lots of positive thoughts.
Love Kirsty

Anonymous said...

Hi we're all thinking about you - hopefully you'll get good news tomorrow and you'll be up the road and back in Seb's good books in no time.Glad you don't have to share your room with your companions from last night! ;) X X X X

Anonymous said...

You can beat this little set-back, we are with you all the way, you will be back home in no time at all and back to the garden centre soon, no doubt!! Big hugs and lol, Rose and Kevin xxxxx

Anonymous said...

Hey

I'm sure this is just a wee blip and that you'll be back on track in no time! The boy sends his love, hope that you get more information in the morning, love you lots and sending a million hugs, me xxxxxxxxxxx

Anonymous said...

Have everything crossed for you, Jac. I hope they fix you very quickly and that you're soon home again.

Audrey xx

Anonymous said...

Hi jac - just to say am sending u loads of big hugs and it will be no time at all before ur back home again! Docs must find it nuts u asking all these knowledgeable questions as I'm sure lots of people probably just nod away. But ignorance can be bliss sometimes. Try to keep tabs on ur over active imagination - easier said than done! Enjoy the peace and quiet as Seb will no doubt keep u on your toes when ur back home - he he! Love stef x

Alice Vogt said...

Good Luck!!!!! It's weird that you were in a room with other people though... Here the tx patients ALWAYS have their own room, no matter what they're in for.

Anonymous said...

From Laura McGregor

Hi jac.....I'm hoping you remember me....we were in some of the same groups at uni...i was good pals with kirsty mcquitty too. i hope that rings a bell? anyhow....i was speaking to kirsty the other night for the first time in ages and i asked about you and she told me all about your transplant and your blog! so i had to dive onto the computer and take a look...wow..wow...wow....i am absolutley loving it! i have spent the last hour (supposed to be working!) reading some of the last few months entries.

I'm living in liverpool now,..training in a+e, i love it here but i do miss bonnie scotland from time to time.

I hope the isolation is going ok and the steroids are doing the job....i'd rather not be next to a spewing person, or an old ladies bum either. though i'm doing a placement in orthopaedics at the moment so i've got lots of old ladies to contend with!

love Laura x xx x x