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...