Wednesdays appointment!

So, I had my appointment Wednesday! It wasn't too bad had some good and bad news really. First I had my weight and blood pressure done - got out of having bloods yaaay! Lost more weight again, which isn't too good!

 

Then I met a nurse Helen and she was there to give me all the info about dialysis, gave me more booklets and DVDs to have a look at, which I still haven't got round to yet. She told me I will more than likely be needing dialysis within the next few weeks, so she has organised a scan on my arm for a fistula to be fitted. A fistula is where the surgeon joins to main veins together to make it larger so its quicker, safer and easier to dialyse through. that takes up to 6-8 weeks for the fistula to enlarge so if I need dialysis in the mean time, I will have to have a permacath which I think I mentioned in my last post, that is a bit like a portacath. For the 'non CF folk', a port is a small appliance that is put under the skin and has a lead that connects the port to a vein. The permacath is kind of less permanent but that also is risky as it can cause infections which is the last bloody thing I need right now on top of everything else!

 

Then the issue of my weight got bought up again. They are really concerned how much I'm losing so quickly, I just cant help it. I don't feel hungry and when I do, I'm getting full really quickly. I know myself it is a problem but I can only but try my best which clearly isn't good enough! They have suggested I have a gastrostomy put back in, and although I am very reluctant about it, because, well I had one since I was 11months old until I was 18/19. You'd think I'd be used to it and wouldn't mind having it back, but I feel the complete opposite, I feel as though I'm going backwards, with the wheelchair, tube, not managing to go out. Plus I'm fed up of having things hanging off my stomach, when I had bowel cancer etc. But I know its for the best. The 'better' I am before I start dialysis or have a transplant, the better I will recover and I know from last time it is so much easier to be as well as you can beforehand. Hopefully will only be a temporary thing anyway!

 

I mentioned about transplant and live donors, she isn't the person to talk about it to as she just deals with dialysis. There's another team that deals with transplants, haven't yet met her but I have her phone number if I need to ask anything! From what I do know is live donor is someone who is alive and is willing to give me one of their kidneys, they must be fully checked obviously as with any transplant. If none of the live donors are a match for me, then I will go onto the transplant list, where as before with my lungs I will have to wait until a kidney becomes available.

 

I seem to have accepted this is all going to happen, which is making things a bit easier, so at least as time goes on will be less scary. I still think about it all obviously as its only early days but I've got this handled I think. It's something that is going to happen so its just got to be done!

 

Soon as I got in from hospital, it was about 2pm. I literally got changed into my pajamas, and went straight to sleep and didn't wake up until half 8 the following morning. Even yesterday, I slept pretty much all day. Been up since 830 this morning, I'm gonna try something small to eat then have another little sleep!

Also forgot to mention, the fistula, permacath and gastrostomy are all done UNDER A LOCAL ANESTHETIC. help.

Kidney update!

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!