Sunday, 19 December 2010

Well I haven't blogged because I haven't really known what to say these past few weeks. I got home again thankfully, my mum and I have been trained to give my IVs at home and now we have a large dripstand and infusion pump sitting in our utility room. That's going fine, the strength of the drug and the fact my Tacrolimus (FK) has now been upped now I'm off Itraconazole (Itra interacts with FK and bumps the levels up so you don't need as much) has taken it's toll on my kidneys and last week my kidney function hit a low with my Creatinine spiking well over 200 (normal is 50-100 I think! My normal is about 70 anyway). We spent most of last week in clinic whilst the team played around with my FK, dropped my Ambisome to 3 days a week and kept me behind for IV fluids. Since being dropped on my Ambisome my cough has become a bit more 'junky' and my weight is down. Related or not I don't know but I hope not, I could do without further complications this side of Christmas. I saw my doctor on my own on Thursday, we haven't always had a great relationship but we get on well now and I can open up more to him more now than I've ever been able to. I don't know what he must think of me at the moment though because the last two times I've seen him its ended in tears. I cried about the fact my dad has to carry me up the stairs now and the fact I can't even stand up to brush my teeth in a morning. Of course there's not much that can be done about any of that now but he did prescribe a small amount of morphine to take the edge off the breathlessness. I was on morphine for just over 12mths before my transplant, if I'm honest it shocked me a bit, I know morphine is given as a bit of a last ditch attempt to make things just that little bit easier when nothing else really can. I am grateful to be back on it because things are bad now and I appreciate anything that would make things easier but I didn't expect to be back on morphine, not so soon anyway. It upset me a bit as I think it was a bit of a final confirmation for me that things haven't really gone to plan.
I'm looking forward to Christmas, one I certainly wouldn't have seen this year if not for my special gift.


Bitter_Angel said...

I know this fight has been a long one, but you are doing so well at keeping up with it. Just wanted to say that you and your family are in my thoughts and that I hope the new year brings you better news.

Tori said...

I hope you have a really brilliant Christmas my lovely and I'm sending you big holiday hugs!!

V xx

Michael said...

I hope you have a good Christmas and many more to come.

Ruth Jay said...

hope you have a lovely christmas hun, you deserve the opportunity to relax and be with family and friends. enjoy yourself!


Dawn said...

Hi Rachy,
I've been reading for a while now but never posted before...
I hope you have a lovely and peaceful Christmas.
Dawn x

Rick said...

You are brave!! Thoughts are with you.

RoseGirl said...


I have not posted a comment here before. But I wanted to say how inspirational your story is to me! I am a 30-something year old gal, living in North Carolina. I have chronic lung disease that has been misdiagnosed so many times, etc. Basically, I am losing the ability to take in air, my lung walls are thickening and I have been on oxygen for over 10 years now! I can usually only relate to CF'ers because they are the only people my age who did not smoke themselves into their crappy lungs!

Anyway, just wanted to tell you that I am praying for you and hoping that you get a Christmas miracle - though I know it is a miracle that you are even here this year! But I am praying many more for you.

Your story has blessed and inspired and you do make a difference in others lives by choosing to share on this blog.

Happy Christmas!

Amy Stephens
Charlotte, NC

ChocolateFudgePie said...

Hi Rachael

I just came across your blog when searching for information about Bird Fancier's Lung.

You are an inspiration!


worthy said...

Hi Rachy, hope you are feeling much better now. have been following your story on Breathtakers. My son Sam, now 8 has OB. You can visit him at

RoseGirl said...

Hi Rachael...I hope you are doing ok...I keep checking to see if there has been any news and I pray for you often.

Don;t know if you all celebrate Valentine's day in the UK, but Happy Valentine's Day if you do!

Blessings to you,

Amy Stephens
Charlotte, NC

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