Monday, 28 February 2000

Contact Me

12 comments:

frankrm29 said...

hello rachael,
just seen you on telly and thought i would just like to wish you all the best.
i know how your feeling because i have the same condition as you and am just waiting to hear if i'm on the list for a lung transplant at
wythenshawe.
i saw your newspaper cutting on the wall at the transplant clinic and thought you had already had a transplant so was a bit shocked to see you on telly tonight.
anyway you keep fighting and i hope everything turns out for the best, will keep watching out for you on this site.
yours

frank r. age 54 1/2

ps if you see this message twice
i lost the first one

jalev said...

Hello Rachel,

I see you are still on the Vent. Don't worry. I was on the vent after my bilateral lung transplant for 6 days, off for 1 and back on for 3 more. There were transplants done after mine who went home before I got off the vent. It is a long recovery. I had my transplant done May 14th 2007. It will be three years in a few more months. There were times I was terrified, and times I was full of myself. I am now finally finding an even keel. I haven't had a rejection episode, but I have had problems with my kidneys and thought for a while there I was going to need a kidney transplant. My creatinin shot up to 6.3 1.2 is normal. 5.0 is end stage kidney disease. I wasn't drinking enough water. It took me awhile to learn how to stay hydrated, but my last labs came back with my creatinin at 1.1. Perfectly normal. The meds can be tough to take, but I think I actually take less now than I did before the surgery. It is just more important to take them on time. It is overwhelming at first, but I can count out my weekly supply in less than 10 minutes now. When I started I would read off a list and panic because I thought I did it wrong, and it could take me an hour or more. I had my transplant done at the University of Washington in Seattle, WA USA. It was the hardest thing I ever did and the best thing I ever did. Hang in there. Don't lose faith. Even if you have complications. Most transplant patients have some complications and some have a lot of them. They have gotten so good at them now that the survival rates are really good. Viral pneumonia is your worst enemy. I have had 2 bacterial pneumonias, and had no trouble fighting them off with regular antibiotics. I know you will do fine. I am sorry for how much you are going to hurt for awhile, but when you can feel, you are alive and that is a really good thing. All my love to you and your family,

Jami Levy
Seattle, WA jalev@comcast.net

abraham said...

Hi Rachael
Hats off to you !! you are amazing and a trmendous source of inspiration to all.
I wish you a speedy recovery and assure you that you are always in our thoughts and prayers.
My 9 years old daughter previously fit and healthy was struck by a life threatening pneumonia in 2006 and since been 24 hrs oxygen dependent.She is a fighter and resembles you in every way.
She was in tears when she saw your blog and would be delighted to meet up with you some day.
We once again Wish you all the best!!
Abrahams

Kerry82 said...

Hi Rachael

I have just been listed for a lung transplant and have come across your blog and story.

I am so delighted for you that you have had your transplant and sounds like although it has not been plain sailing for you, that you are doing amazingly well.

You are such an inspiration to me and I look forward to seeing your future progress at home now.

Hope you are feeling well.

Love Kerry xx

Sanoma said...

Hi Rachael,
I was googling nasal prongs for my cpap tonight and stumbled upon your you tube documentary. I watched the whole documentary and googled "Rachy interstitial lung transplant died" and was soooooo happy to find your site.
Wow. I have never met you and I love dearly. So glad you got your new beginning. Xoxo
Sheila from California

natalie butler said...

Hi Rachael, My names natalie, i currently live in Australia, perth, i have been here since may this year but im originally from Liverpool, my dad was in Wythenshaw hospital having tests done last week and he got talking to your mum an dad, they told him about your blog and he told me, so i thought i would say hello, and my dad has said to say he is thinking of you! I am in Australia until may 2012, i miss my mum an dad ( and my dog ) so much i cant wait to see them when i get home.I think its amazing everything you have done and the awareness you are bringing to lung disease, your family must be very proud. Keep up the good work babe,Take care Rachael, lots of love Natalie xxxx

natalie butler said...

Hi Rachael, My names natalie, i currently live in Australia, perth, i have been here since may this year but im originally from Liverpool, my dad was in Wythenshaw hospital having tests done last week and he got talking to your mum an dad, they told him about your blog and he told me, so i thought i would say hello, and my dad has said to say he is thinking of you! I am in Australia until may 2012, i miss my mum an dad ( and my dog ) so much i cant wait to see them when i get home.I think its amazing everything you have done and the awareness you are bringing to lung disease, your family must be very proud. Keep up the good work babe,Take care Rachael, lots of love Natalie xxxx (this may show twice i have never bloged before! )

Tommy said...

Hello Rachel my name is Tommy i met your mum and dad on the jim quick ward last week. Just wanted to say you are an inspiration for raising awareness about all lung diseases. Your whole family must be extremely proud of you. Keep on believing you are an amazing person. Thinking of you always.

KFUVA said...

Rachael, I write to you from Virgina, USA. I've been looking at personal stories from double lung transplant recipients, for my father was diagnosed with idiopathic interstitial lung disease and has been added to the lung transplant list as his only option. Your positive outlook on life throughout your hardships is astounding. I work as a registered nurse in cardiac surgery and see patients during their vulnerable moments.You have truly found your purpose in life, as an educator and supporter and I wish you the very best. Take one day at a time. You are in my thoughts and prayers.

natalie butler said...

RIP Rachel, you were an inspiration. Your Mum and Dad must be so proud of you, I was never lucky enough to have met you but i heard some amazing things about you and what you have done. Goodnight Rachel, Natalie, Tommy, margie and family - xxxxxxxx

natalie butler said...

RIP Rachel, I was never lucky enough to have met you but I heard some amazing things, your mum and dad must be very proud of you. Goodnight Rachel, Natalie, Tommy, Margie and family xxxxx

Tommy said...

In memory of Rachel who will stay forever young - an inspiration to all and a credit to her Mum and Dad. Love Tommy and family, Liverpool. XX

 
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