Wow when people tell you transplant is a rollercoaster, they really aren't lying. The last 2wks have been a crazy ride of emotions. Today in particular.
In my last blog I talked about clinic and going back a few days later to see if the increased doses of the anti-rejections had made any difference. I did go back to clinic a few days later in a similar state, probably slightly worse off. It was decided there and then I needed a bronchoscopy to see what was going on. Seen as I was out of breath, on my doctor's request I agreed to have the bronch without any sedation (yes I'm crazy like that). He was hoping, as we all were, the problem would be something immediately obvious and fixable. Not long after my transplant my Anastomosis (complicated medical word for where the donor lung is joined to recipient tissue, in this case airway) in my right lung had narrowed. I had it surgically stretched and it made me feel better almost instantly. But this time it wasn't the case, the Anastomosis looked almost unchanged and I had a strong feeling that was the case anyway, something felt different. The only thing the bronch really showed was some sticky 'jelly like' mucus in the bases of both lungs. Not really a nasty, dirty colour like you'd see in infection but it was just there and didn't really seem like it was supposed to be. So the samples were sent off and the only thing we could really do was cross our fingers (as strange as that sounds) that something grew from it because if nothing did there was nothing more to be done.
Two days later following a temperature, a very unhappy tummy and a junky cough my mum called the ward and I was readmitted. At first it didn't seem obvious, even to me what exactly was wrong, I just didn't feel 'right'. The team looked into every possible test whilst keeping me comfortable and hydrated, they were still waiting for the cultures from the bronch. Then after the weekend the results came back, they had found a fungus in my lungs called Aspergillus. I had heard of Aspergillus, it was something I was tested for regularly with my old lungs because of my symptoms but I'd never grown it. I've been on treatment for it (Amphotericin nebulisers, Itraconazole and Voriconazole (Vfend) prophylactically, since my transplant to avoid catching it but Aspergillus like most bugs is changing all the time, becoming clever and immune to certain drugs and it seems that's maybe what's happened. Given how breathless I was, how I'd already been on treatment and how I wasn't able to tolerate Vfend which would have been a good opition to switch back to it was decided I was to start on IV AmBisome (basically the same as Amphotericin but alot kinder to the kidneys, something very important post transplant as the kidneys get a battering from all the drugs). AmBisome is a good drug but it will take it's time to work and I'll be on it IV for a minimum of 6 weeks, thank god I got my port-a-cath when I did. It's not so much having a fungal infection in the lungs that's the biggest issue, my CRP (marker for active infection) is less than 1 the Aspergillus acts as more of an irritant making the lungs inflammed and generally a bit unhappy. (see ABPA for more info).
The big question now is obviously will I get loads better? Now this has been found and I've started treatment? My team are an excellent team and they're doing everything they possibly can and I believe that. They're good though at times at painting a rosy picture, telling patients what they want to hear to keep them positive and happy they do this because in transplant a positive attitude is at times half the battle. I like to know what I'm facing so I can work out how best to deal with it, the team have learned now that's how I am and they have been very straight, and, well, a bit blunt. In a nutshell they're 'reasonably' confident they can improve me overall by 5-10% with the AmBisome and fingers crossed getting rid of the Aspergillus. Back to my pre-admission self. But will not give me false hope and say I'm going to get much better than that and cannot say what the future will hold. They aren't confident I will come off oxygen again (at the moment I'm on 8-10LPM) and I may still find moving around just as difficult as it was. And I think I need to believe that, I cannot afford to set myself up for anymore disappointment, I know doctors have been wrong in the past and hell at times I've gone out of my way to prove them wrong but I'm going to believe what I'm being told, any improvement beyond what is expected will be a bonus. The thing that sprang to my mind was was it worth it? Possibly months of IVs for a 5-10% improvement? IVs are alot of work, in hospital they just get made up in pharmacy and administered, at home the chances are that won't happen (mainly because of the nature of the drug) and we will have to mix them at home. On top of that everything has to be sterile because the port line and drug are being given directly into my bloodstream (ports can be a major source of infection) and we will have to be trained on an IV pump because the AmBisome has to be given over 2hrs to avoid any reactions. But I did not battle to get these lungs and come this far with them to settle for anything other than the best I can be.
ANY improvement will be worth it and so I will do the IVs.
My doctor's words will stay with me "Your one tough cookie, you've proved us wrong in the past and I wish we were having a more optimistic conversation but there's always hope..."
Indeed there is.
Sending some smiles!
3 weeks ago