L'hotel Brompton... It's the Place to be...

Just thought I would update you all briefly as to how I am doing. I arrived at the Brompton on Friday despite the weather being as awful as it was! I'm just glad we went with hospital transport as there is no way we would have had enough oxygen to last the journey! 

Upon arrival my various and observations were not too horrendous, one of my lung function levels (FVC - how much air I can blow out in my total forced expiration) was markedly down from 45% to 33%. Thankfully however, my FEV1 remains stable at 18%, which is good as this is the result which would indicate a more acute increased inflammation. At least I am not battling from such a low as last time! My oxygen sats are pretty similar to that of home (I.e. horrendous, but no more so than at home!). I am able to walk around the ward for physio with a high flow oxygen mask, not solely on the Bi-pap. Obviously I still spend a large amount of time on my Bi-pap (non invasive ventilator) but I'm not on it permanently which is good. I am on two different intravenous (IV) antibiotics, Tobramycin and Meropenum. I am also on an IV anti fungal, as the doctors thought that it was likely to be a fungus irritating my airways. My prednisolone (steroid) has been increased to 30mg from 10mg to help open things up too. As well as lots of IV fluids to help loosen sputum. It all seems to be helping and at ward round today, my doctor said my CRP is now 170 from 224 and I could hope to be discharged next Tuesday if the CRP continues to drop nicely. We will also need to make sure I'm stable on the IV antibiotics they send me home on. I have also had an abdominal x-ray as I've been having a lot of stomach problems, with being on morphine and various other medications. Fortunately there are no big 'obstructions' (lovely!!) so I just need to keep on  drinking plenty, and taking senna and movicol (yum!) .

I am really pleased that this should be a relatively quick turn around... Less than two weeks is a record for me, even on paediatrics! However it also kind of hammers the point home that there isn't too much more they can do for me. I desperately need new lungs. It's just a case of maintaining the status quo at the moment. I'll never be without needing bi-pap again, or high flow oxygen, never be without infection, so will need IVs permanently until I'm lucky enough to get a transplant. However I am thankful that I am allowed to have so much done at home and hospital transport can take me backwards and forwards from my very regular appointments. I hope not to sound despondent, this is just how it is now. Sometimes people can wrongly associate leaving hospital with being completely better, which is not always the case. 

Could you also spare a thought for Luke? As I'm not too ill he's been commuting to Oxford from our lovely friend Eimi's house and coming to me in the afternoon/evening, then tubing it back to Eimi's later in the evening. He's exhausted. In addition to this he is desperately sad that I'm at hospital in the Brompton as opposed to being on ITU in Harefield should my call last Sunday have been successful. I just feel like I am such a burden to him, but I know he doesn't think of me like that and he wouldn't want to be away from me.

On a positive note, my friend Laura has finally had her liver and pancreas transplant! Cystic Fibrosis affects most of the organs and Laura was in desperate need of a new liver and I thank God she got hers today! Here's a link to her blog. It's really interesting to see other ways CF affects the body. 

Thanks to all for reading and please, please, please consider signing up to the organ donation register if you haven't already and tell your loved ones of your wishes regarding it too! Also, here is a link to Rhod (Eimi's boyfriend) and Caroline's fundraising page, they are running the Reading half Marathon to raise money for the CF Trust! Any donation will be greatly received! 

 

All Gowned Up and Nowhere to Go

The last couple of weeks have been very manic to say the least. Since Christmas and the new year, I've been feeling a bit 'iffy' health-wise and shortly after Christmas we changed my cocktail of home IVs to Colomycin and Ceftazidime. Whilst Meropemum works really quite well, it's never a good idea to stay on the same antibiotics for a sustained period of time. Notwithstanding the issues Meropenum causes my liver, the docs and I decided a change would be a good thing. However, it was always going to be a guess as to what to change to. It's clear now that poor old Ceftazidime just isn't cutting the mustard anymore, as my chest is not quite back to baseline in terms of sputum production and I just feel 'icky'.

Also, how can I forget to mention my third unsuccessful call for transplant? The emotional trauma of getting the call on a lazy Sunday evening, spending all of Sunday night and the early hours of Monday morning awake (I've not pulled an all-nighter since scrambling to finish a uni assignment!) has really taken it's toll on my body. When I was assessed at Harefield on the Sunday night prior to the possibility of the transplant they found my infection markers to be high (very high to be honest), but they would still have operated on me. They assess cases on an individual basis and as I have been waiting for so long, having had so few calls and balancing all the risks, in my case, the decision to operate was taken. However, this turned out to be irrelevant as at 3am we were told that the lungs were unfortunately unviable (as is the case with four out of five of all donated lungs). With heavy hearts we trudged home, emotionally wrecked and as I previously said, I was and still am physically drained!

Although I said Harefield took the decision to operate despite my high infection markers, I decided that it would be best to get on top of this, as if I am fortunate enough to get another call I don't want to continue to test the boundaries of CRP/white blood cell levels! At hospital yesterday, surprisingly my lung function remained stable at 18% and all my other observations were stable too. The decision was taken to add an oral antibiotic into the mix. However the doctors said that due to my clinical symptoms to only take them if i felt worse. We didn't get the blood test results until my doctor phoned me on my way home and unfortunately my CRP had spiked massively (from 160 to 224) so I was to take the oral antibiotics immediately and to call if I felt worse. Annoyingly enough I felt horrendous this morning, so up to Hotel Brompton I go tomorrow! I'm hoping that as my clinical observations aren't yet diabolical, I will avoid a lengthy admission, but I'm just praying and leaving that in God's hands (what else can I do?).

Thanks to everybody who sent me messages on Facebook, Twitter as well as text messages on that Sunday night. Although I couldn't reply to them all individually I appreciated each and every one of them. I also want my church family to know that I was deeply touched to know that you opened up the church and many of you prayed for me on the Sunday night. I know it's so frustrating that I'm still desperately ill and that the transplant didn't go ahead, but I just trust that God has a plan for me and I still have hope that the call will one day come.

How could I possibly not take this opportunity to thank the potential donor and their family. Although my transplant did not happen, other organs may have been viable and I thank the donor's family for being so selfless in such a horrific time for saying yes to organ donation.

Me at Harefield ready and waiting...

Happy New Year!

It is safe to say that 2012 has been a year of ups and downs. Seeing many of my friends get married and being maid of honour for my best friend were certainly some of the best times I saw this year. 2012 also saw the completion of Luke's doctoral studies which I was unsure I would be around to celebrate with him. I was also really pleased to be involved with my local paper (The Basingstoke Gazette) in a campaign to raise awareness about organ donation as well as Cystic Fibrosis. I was also fortunate to be included in a BBC national news piece about ex-vivo lung perfusion transplantation. It means so much to me that I can use my circumstances to raise awareness about organ donation and even one person signing up after reading my blog could potentially make a huge difference! Oh and how could I forget the addition of Azlan the rabbit to our little family?

The bad times? Spending several long stints in hospital, the first back in January/February and then spending two months in hospital over the summer. Being so desperately ill was so frightening and feeling my health decline generally makes you feel very powerless. I am very lucky to have come through that admission, albeit a bit weaker and in more need for my transplant now than ever before, but at least I'm here.

I have two lovely friends called Rhod and Caroline who are running the Reading Half Marathon to raise money for the CF Trust. It would be fantastic if you would take the time to visit their fundraising page and sponsor them, no donation is too small! Click here to visit the page. The CF Trust does some amazing things with the money they raise from providing support in many ways to individuals with CF and their families to investing in high quality research to bring forwards new treatments for CF. Hopefully with new treatments and perhaps even a cure one day being discovered, the need for organ transplants to extend the life of Cystic Fibrosis patients will be no more! One drug that is currently making a big difference in some CF sufferers lives is Kalydeco. This drug works specifically on the CF mutation G551D. Although the CF Trust did not fund any of this particular drug’s research, they are working hard to campaign for it’s availability on the NHS. To see what a difference this drug can make, please read my friend George’s blog.

For me a cure for CF will not undo the damage sustained by my lungs, but could potentially keep me stable. What I really need for an improved quality of life and for an extended life is a double lung transplant. Perhaps in 2013 someone will be selfless enough to decide to donate their organs should the worst happen to them. If I were to benefit from such an act of generosity and get a second chance at life, it would be truly humbling. I look upon 2013 as a year of hope.Wishing all of my blog readers a happy new year!