Do you recall me mentioning a photographer from the national transplant services wanting to take photos? Well he came yesterday morning.
It went well and I am excited to see the results, well as excited as I can be at photos of me.
I should probably mention that after feeling crappy for a few days I decided I needed a change, which resulted in some hair dye and a haircut. That in itself is a big step.I loved my red hair, but right now, I just dont have the energy to maintain it to keep it looking good. Not to mention that my hair is in poor condition from crappy breathing. So first the colour went. And then I braved the hairdressers. I hate going the hairdressers. I have to take out my hearing aids and off with my glasses, which makes things difficult and conversation pretty much impossible. Then I have to protect my neck and can only move to certain points. so yeh, but I did it and, I feel much better for it. I just kinda wish i had had it done before I went away.
But yeh, the photographer, is also a transplant patient, having had a donated kidney off his brother. He has done some amazing stuff and is super fit, I give him all his credit for that. However, he was a little tiring. in that he liked to not just tell you about his achievements but kinda emphasised them at one point telling me how much harder it is for a kidney transplant patient to get back to fitness than a lung transplant patient, which seems odd given lung patients have the whole unstable rib cage to deal with. Blah, I shouldnt judge, but it did make me wish I had been able to do some of the fitness stuff he had done.
watch out for an update on photos once i get them and know fully what they are getting used for?
After that I had a med trial for my new nebs. They have put me on a trial of antibiotic nebulisers. Sounds easy huh. Not so much. First off, to minimise the risk of reactions with them, you have to have a quick acting bronchodilating medication first. The problem with this med, is that, it makes me extremely shaky. Most nebs come in little plastic bottles that you tip into the machine and the machine turns the liquid into smoke you inhale, once done you put the plastic in the bin. Not these ones. They, come in little glass vials that you have to snap the top off, then you have to open another bottle of saline and using a syringe, draw up the right amounts and mix it. Then put it in the nebuliser.
So this one simple new med, in fact involves 2 plastic bottles, 1 glass bottle, a syringe, a needle and a new nebuliser piece. Oh not forgetting an nice sharps disposal box to put the syringe and glass in. Times that twice a day, you have a hefty lump of new stuff to store.
Oh and I have now learnt that i have to mix the stuff before I do any of the meds, as snapping glass and using needles, when your hands wont stop shaking, is not a good idea.
So, right now, I am feeling a little overwhelmed and still trying to figure out who supplies what. You see, the medication will come from my GP, but the needles and syringes come from somewhere else and I am not sure who deals with my sharp box. Its all very puzzling.
But, after only a couple of doses, I am feeling better for it, still coughing, but the stuff isnt quite as crappy as it once was.
so yay at last, things seem to be heading in the right direction, lets hope it carries on that way. And, I am also looking into replacing my nebuliser, with one that will run much quicker and quieter. Right now, my neb time, if I do all my nebs fully, is about 2 hours, twice a day, to get my essential ones done, but I avoid extras and try to get away without some on days when I dont have the time, like when I have a 2 hour drive ahead of me at 8am. With the newer nebs, I can get that down to 30 mins twice a day, which is much better. I do have some money put to one side, so I just need to figure out which one will work for me.
Today was liver clinic in Leeds and so that was another early morning. I used to love the drive across to Leeds, its such a pretty view and this time of year, its usually sunny. Nothing better than driving across some of the highest motorways in the UK, windows down, music on. Alas, it was heavy rain, flooding and fog, in July, welcome to Britain.
But everything looks good from the Liver perspective, which is great news. Over 9 years and no real problems with my transplant. I am a very lucky girl
And now, I ache from driving, so im going to go shake myself to sleep hehe.