Well the past few months has been a whirlwind of emotions! Harry and I had a holiday booked for 9th May to the Dominican Republic, it would of been my first holiday in 11 years and our first holiday together. I was so excited, had pretty much everything ready to go apart from a few toiletries! End of March, beginning of April time I began to feel really unwell. I had literally no energy, constantly sleepy, banging headache, sickness, the lot! I was staying at Harrys that weekend and knowing I can't physically be sick due to the fundoplication op I had when I was a baby; frightened me when I actually vomited 3 times that night. He drove me back home and all that week I felt so rough, I hadn't eaten or drank hardly anything either. Turns out I had lost weight as well on top of everything else which my dietician wasn't happy with! Neither was I, but I just couldn't help it.
I had a few days where I felt 'okay' but I knew something still wasn't right, but I thought if I persevere with it, I'll feel better eventually. I didn't want to go in hospital before my holiday!
On the 22nd April, I had my routine appt. with the kidney doctor at Guys, I felt so ill but managed to make it, everything seemed fine as usual, went back home. 25th April - my birthday - had a phone call from my kidney doctor 'chow' as he likes to be called haha. He said he wasn't happy with my creatinine levels as they were in the 300's he wanted to see me on the Monday. For someone my height and weight creatinine should be 80s - 100.
Monday I go back, have more bloods, shot up again, to 482. Kidney function 10%. They start looking at dialysis and transplants when kidney function hits 15%. They admitted me on fluids for a few days just to have a few more tests to find out what's going on. I also got told my holiday isn't advisable, so we cancelled it and to say I was gutted would be an understatement. I got sent home on the Wednesday.
I watched the DVD on dialysis and transplant they gave me, trying to get my head round things, so much to take in.
I have become weaker by the day and I spend most of my days sleeping, I have gone back to using my wheelchair again and I have lost more weight now at 37kg. I am having skandi shakes and resource shakes again to help me gain weight but I am finding it so hard to eat and drink. They have mentioned to me I will probably need a gastrostomy tube back in again which I am well against right now.
I have decided the best dialysis for me would be the haemodialysis - filters the blood. This would be through a fistula, which involves a local anaesthetic where they make my own vein larger, but this can take up to 3 months to enlarge. in the meantime I may have to have some sort of pic line in my neck. They do another kind of dialysis which is peritoneal dialysis which is a tube inserted into the stomach instead and works through the bladder instead of blood. That one didn't appeal to me as I'm fed up of having things attached or something out of my stomach! The doctor said I wouldn't be able to have that one anyway because of where I had the bowel cancer (PTLD) before.
A kidney transplant will be something that will happen but as I have people who want to be a live donor for me, they must be fully tested first and that can take up to six months, so while I am waiting for that, dialysis will help me out in the meantime. Hopefully!
I do feel so dreadful, and its not the best of situations. In fact my poxy kidneys couldn't of picked a more of a shitty time! But can't change that only work with it! So positive happy thoughts! Trying not to let this get the better of me. I do suffer with depression and I do still get some down days obviously but if I have deal with a lung transplant I can deal with this!
My next appointment is tomorrow where they give me more info and hopefully come up with some sort of plan!