Now what.

What do you do when the top doc in your area tells you that have no clue what to do?
It seems to be a reoccuring theme recently. Sorry if I sound bitter, but check the blog title.

Today was chest clinic. As I mentioned in my last entry, I am feeling rather crap, so I had hoped for a suggestion or anything that might make life easier. What I got was a puzzled doc. The bug is in my chest again, not sure if it ever went. All my tests are normal, so they have no idea why it is there, so they cant prevent it. The IVs didnt help, nothing is helping, and as it is rare to get it in your chest, they have no idea what to do with it. He dosnt think it is causing any huge problems, but generally he dosnt know. I feel awful, the pain is annoying and I am exhausted. We are going to try a long term antibiotic, but that is more to keep on top of any new infections. Other than that, go with it and see him after christmas.

He basically said, while your throat is a mess and your body is getting messed with so much in surgery so often, you wont be normal, you will continue to feel crap and there is very little we can do chest wise, till the throat is sorted. If you get further infections, we can treat them, but other than that, we need to try not to wear out the anti biotics.

Its disheartening. To have the hope, that yes soon you may feel better, and then a couple of weeks later be told, well you might, one day, maybe. Yes things are not terrible at the moment with my life. But I want more than to try living between crisis.

I over did things yesterday and so I am over tired today, so I slept all afternoon.
As a result, I have been moaned at so much today and I am losing my grip on staying cool.I am holding onto happy, but I am slowly slipping.

I know I am under the best docs I can be. There is nothing I can do at this point. Time to dose up on painkillers and go sleep.

wake up

I think I may have given off a wrongful impression, either that or I write things my mind hasnt clicked with yet.

Right now, I am in a good place. Mood wise, health wise, family wise. 

Things are good, things are looking up.

I had Liver clinic on friday and whilst I often dont think about clinic, for some reason this one making me a little edgey. The last week or so, I have been having some stomach issues, which seem to be getting more frequent. I guess something in my mind, had perhaps linked it with Liver issues, I guess its something that will always be in my mind in some way. But, things are fine, everything looking good. Next month, I hit 9 years post transplant. 9 years is amazing, more than I could ever have asked for. And I am still so grateful for that. To my donor and to my surgeon for taking that risk. 

The longer you are transplanted, the more the risks alter and so I think I am past the most feared risk now, rejection. My body seems to like this liver, and although medication is still needed and always will be, the chance of me going into rejection are a lot slimmer now. The risks now, more so revolve around medication side effects and secondary problems. 

I am also well prepared this year and I have had my flu jab already. (Go me!) I didnt get around to it last year due to the whole pneumonia issue and being admitted. I cant afford to get sick this year, not that I could last year, but its done and out the way.

My culture results are back (I sent them off last Monday) and I have proteus in my lungs again/still. Not sure where we go from here, but seeing my lung doc on Thursday. Since getting back from London last time, I have been getting progressively worse chest wise. My coughing usually wakes me parents up, but I sleep through it, which has been true for the last week, but the last two nights, I have woken a few times. The bit that makes me anxious, is that, I really struggle right now to clear my chest. I have to kinda cough as much as I can, then stop and take a few shallow breathes, before a big breath to continue coughing. That coupled together with disturbed sleep, is making me tired and cranky. But this can all be fixed.

As for my throat, the lows are lower, but the highs are not dropping so quick. The new nebs, seem to be helping a lot. And although, I can often drop to 130 peak flow, with plenty of nebs and physio, I can, most the time, get it up to about 130.

Life is continuing. I have once again put my extender wire on my neb, meaning, that the 2 hours I often spend on it in the morning, I am able to move about and get dressed at the same time. Family issues seem to be settling too, which always makes me happy. Mums radiotherapy, seems to be going ok yeh, no new major dramas. 

Life, although it hasnt changed, feels good at the moment. I do feel like I am changing though and thats a good thing. Since I left nursing, I havtn really given much thought to going back. Well I have said I want to and I do, but I havnt really felt it, if that makes sense. Tonight, for the first time in forever, I realized, that I still feel the same way. Medicine still gives me that warm fuzzy feeling, I can still picture myself standing in scrubs, looking after somebody, making a difference. Deep down, I still want to do. Perhaps my mind blocked the urge out when it wasnt possible. Is it possible now? In answer, I dont know. I wouldnt want to put a patient at risk, however, I know they have disabled students, there must be ways around it. So, I couldnt run up and down a ward, nor do loads of long shifts. But, I could do some. I always wanted to go to ICU nursing. I could still monitor a patient, care for them, mix the drugs and give them safely. I could do most of it, if I could just get through training. 

I feel like something inside me is suddenly waking up. As if its been switched off for a long time and just booting in now. Its not just nursing, its boys and life and love and a million and one things all added together. I am ready to start my life, not hide around indoors. Things will pick up, things will improve and in the meantime, I can research and make sure I am ready.