Monday, 28 June 2010

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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Gem said...

Sod the people that told you to stop complaining! You've got every right to say how you really feel! This is your blog not theirs- if they don't like it they don't have to read it!
I really really hope your right lung starts behaving itself soon and everything gives you a break to enjoy yourself! You deserve it!! Gem xx

Tori said...

OMG have people been telling you to stop complaining bah they should just keep their mouths shut!! Yes people leave Rachel alone!!

You are going through a hell of a lot and I think your keeping extreemly strong but then we're made of hard stuff!! I really want things to get better for you I really do but I'm not going to say for definate if they are because I don't have a crystal ball and I can't see the future!! I wish with all my heart it does because you deserve a break and I want so much for you to have a lung easy life!!

You know you can always text me to chat!!

V xx

Lynne said...

Hi Rachy
OOh so cross reading your blog today!!!
Nobody has the right to give you stick after all you have been through and are still going through. They just dont know what they are talking about, no one can really understand all you have to cope with unless they have been there themselves. Take no notice of the miserable'nay-sayers' just concentrate on getting better and enjoying your life. You are strong, inspirational and amazing. Hope everyday gets a little easier.
Hugs Lynne and Kiri x x

Bitter_Angel said...

You are doing well and you are entitled to feel however you do! Keep expressing it.

During my recover on the transplant ward I spoke to a lad who had had a liver transplant. He had never been truly well since he had it, lots of infections, tiredness, he developed celiacs disease as his donnor had it and he just generally didnt do well.He eventually ended up in rejection but was lucky enough to get a second transplant. He was out of hospital within 6 days, no longer had celiacs and had tons of energy.

Moral of the story, yeah you may have to go through a heck of a lot more, but you can still live and things dont have to be like this forever!

I can truly sympathize with the floppy airway. My entire trachea is 'floppy' and I have server stenosis (narrowing) in parts of it. I have tried a fair few stents and had a lot of procedures and complications in trying to fix my airway. So feel free to get in touch if you want to talk any of these aspects.

I have two little sayings I try to stick to. 1. If something is hard, then it is worth doing anyway. If it were easy everybody would be doing it.
2.That which dosnt kill you only serves to make you stronger.

Sure you have had it rough, but think how different you and your life would be without all the complications.

*cuddles* you gotta have some rain to make a rainbow, things will get easier soon!

Aspiemom said...

I'm sorry you are going through so many trials post-tx. I hope your right lung starts cooperating and things improve quickly. Thanks for sharing honestly. Debbi (another CFer)

loulou said...

I am pleased that the docs are on top of whats happening and yes, you have every right to be honest on your blog. Its the whole point to be as frank and literal as you like. If people can't handle the real world then they should go back to farmville!! Lol! You are human and you have experienced a journey that only you will ever know the reality about. Keeping up your spirits requires more than effort, it requires a surge of will and you've got it girlie! Always thinking of you xxx hope that the docs can come up with some ideas to lessen risk of infection. I was happy to come off MMF...not the greatest drug in terms of side effects!

Iridescent Spirit said...

Yeah ignore them, they have no idea what you've been thru and going through, you have every right to say how you feel.

I hope things get better for you soon hun x x x x

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