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Getting on the transplant list!

As many of you will know I was referred for assessment for a double lung transplant in July 2013. As part of the referral I had to have numerous tests to check my suitability, these tests were carried out at my CF centre, Glenfield Hospital in Leicester. The tests carried out were as follows:


  • Chest x-ray
  • Echocardiagram (an ultrasound of the heart)
  • Ultrasound of my liver (to check my liver is functioning with minimum damage from CF)
  • 24 hour urine collection (to check Kidney function)
  • Bone density scan (to check for osteoporosis that can be worsened by post transplant drugs)
  • Blood tests (to know as much as possible about every level possible to be tested!)
  • Lung function (to check my lungs are bad enough to require transplant)
  • Blood gases (blood taken from the artery to test oxygen levels)
  • 6 minute walk test (How far I can walk in 6 minutes and my oxygen levels while I do so)

The results from these tests were then sent to my transplant centre of choice along with a referral letter explaining who I am and my medical history/situation. My transplant centre of choice is Newcastle Freemans Hospital, I chose here as as well as Newcastle being home to my extended family which will be essential in supporting me post transplant, it also has a brand new state of the art transplant unit with the best operating theatres in the country. It was a no brainer really! 

I received a letter at the end of september 2013 with the dates for my assessment at the Freemans Hospital, October 18th-20th. It said I was to have a 3 day assessment, I would have to stay in for 2 nights, in which they would basically repeat all the tests I'd had for my referral as well as meeting all the transplant team and being told in great detail about what having a transplant entails. The aim was that on the 3rd day they would tell me if I was eligible for transplant and if so be put on the active list. Sounds reasonably simple right? Not with me it wasn't! It seems nothing is every straight forward with me and so on the 3rd day I was told that my journey to going on the transplant list still had a way to go for numerous reasons that I will explain.

Firstly in November 2011 and years previous to that, I grew a bacteria in my mucus from my lungs called a-typical mycobacterium abbesses. This bacteria makes lung transplant impossible as it would spill out of my old lungs, reinfect my new lungs and would also stop the surgery wound/scar from ever healing, the skin and tissue would rot and die and I would end up with septacemia and die in a rather horrific way. So as you can imagine it was of upmost importance to make sure I no longer grew this bacteria in my lungs. Despite the fact my sputum (mucus) samples had been clear of the bacteria since Nov 2011-present (so over 2 years) I was still on antibiotic treatment for it and therefore it was unknown if the antibiotics were masking the growth of it and I still had it. The best way I can explain it is that when you have a tummy ache or head ache and you take a painkiller like paracetamol, it treats the pain and makes you think it's gone away but it hasn't really gone away the painkillers are just masking it. It's the same principle here with the antibiotics and the bacteria. The only solution to this unknown was for me to stop my antibiotics that were specifically treating the Mycobacterium so if I still had it it would show up in my sputum samples. I had to be off the antibiotics for 3 months before I could start having samples tested as this was the length of time needed for the antibiotics to be out of my system and the mycobacterium to grow. So fast forward 3 months and that took me to February 2014. Armed with sputum pots I was sending samples by post to Newcastle every week for a month! They needed a large quantity of samples as each sample has come from a different part of my lungs and there is no knowing where the bacteria is lurking! I was hoping that after 6 weeks from my last sample I would find out a verdict as to whether the bacteria was gone and I could go on the list...not so fast Holly, that would be wishful thinking! 

Onto problem 2! In sending my samples, the microbiologists got rid of one problem and found another. When seeing if my samples grew the mycobacterium (which it never did HOORAY!) it instead grew a bacteria that is the most common in CF called pseudomonas. Now, I already knew that I had this bacteria and was on treatment for it, but what we didn't realise is how strong a strain it was and how resistant to the majority of antibiotics it was. Which is what became problem 2; when I have had the new lungs transplanted I will need to be put on a strong course of antibiotics that will blast any remnants of the pseudomonas out of my new lungs that may have got in there through leakage from my old lungs (when they take my old lungs out, no matter how careful they are, bacteria spill out into the chest cavity and when the new lungs go in there is a chance the bacteria can infect them). It is super important that the antibiotics they give me are effective and kill the pseudomonas completely so my shiny new lungs don't get damaged! A phone call or 3 from newcastle later and I was told to send even more sputum samples to them to be tested to find a suitable antibiotic cocktail to kill the pseudomonas! Fast forward again to June 2014 and I was given another assessment date to attend in Newcastle, July 9th-10th. I was told that at this assessment I would have a few of the original tests repeated to measure my rate of decline and I would hopefully finally be told if the microbiologists thought they had an antibiotic cocktail suitable to treat me post-transplant. 

As you can imagine I was extremely nervous about this assessment as I had now been waiting in limbo for a year as to whether or not I would be accepted to have the life changing operation! However, nervous I needn't be, the team were as fantastic as the first time, wonderful and caring and made me feel in safe hands. Although I still didn't get the go ahead for transplant at that visit it was the most positive news I'd received yet. The top professor and the rest of the transplant team had a big meeting about me and they had decided there was a 95% chance I would be placed on the list, the hitch...they wanted one final sample and I had to put weight on! I was elated at this news despite the fact it still wasn't 100% it was a whole load closer to where I'd been previously! 

Finally on September 9th 2014 I received the phone call I had dreamed of for over a year, the phone call telling me they had not one but two suitable antibiotic cocktails to treat the pseudomonas and therefore I was being put on the active waiting list that very day! Not only am I on the active waiting list, I am on the priority list as due to the nature of my CF the window of opportunity for me to be well enough for transplant are slim. When I get severve infections e.g getting the common cold  I have to come of the active list until I am better as it is too dangerous to operate when I have an severve infection. So basically my aim now is to stay as well as possible to make the window of opportunity for transplant as big as possible! I am absolutely elated that I am finally on the list and I just hope my call comes soon! For now I just have to sit tight and wait! 

Holly 
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A picture of me extremely happy just after I received my phone call to say I was on the active list!

Comments

  1. Hi Holly. I've been writing a book where the main character has CF, and while research is good for accuracy, nothing is as helpful as seeing personal stories like this. (also, tumblr name is thisisnotaghoststory and we've messaged a few times) :) Definitely have bookmarked this page so I can stay up to date. Best wishes and I do hope you continue to get good news!

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