I know it's been a while since I updated, however things have been up in the air and very hectic on my end, therefore I've not found the energy to update. However I will definitely be getting back on it...
Ideally I want to carry on with the journey from where I left off... However quite a lot has happened and I feel the need to update about it so be prepared, this is going to be a long one.
Once I had recovered from the surgery of having the peritoneal dialysis catheter fitted I finally got a solution to my problem. In the UK there are two main providers of peritoneal dialysis machines. Baxter and Fresenius. Baxter is the main one, used by most over the UK, however Fresenius has started making it's appearance and some patients reported that the Fresenius peritoneal dialysis machine hurts less than the Baxter one. So my renal team arranged me for to receive a new delivery of a new machine and all new dialysis supplies... So that first delivery I was given... Went completely to waste as they're not allowed to re-use any dialysis products which have been prescribed to someone else, even if they have been untouched and are still in their original sterile packaging. Crazy if you ask me and a total waste of resources.
I finally trained on Fresenius and it was a success! Still slight discomfort when the machine is draining fluid out but much less painful than the Baxter machine. I figured a few of you don't even know the process of what happens during peritoneal dialysis so here's a useful and informative link: Peritoneal Dialysis
Adjusting to doing dialysis every night wasn't so much of a problem as I have a very supportive boyfriend and family around me helping whenever possible... More than anything the whole thing is a massive pain in the arse. Having to set it all up, keep everything sterile, 2 minute handwashes, alcogel a-go-go! Sometimes you just wanna get your pyjamas on and jump straight into bed, however my bedtime routine had turned into this. It's not so bad though, usually my boyfriend does the 5 litre dialysis bags and then I sort out the machine and connect up. We seem to have a system going and it works. :)
Some of you may already know... My mum was going through testing to see if she could be a living donor in order to donate one of her kidneys to me and it was a rather exciting time for us all. She passed all the tests which took about 6 months to complete. However a few weeks before her final test my Mum suffered a heart attack and had to have anglioplasty performed to open up one of the blocked valves in her heart.
Hearing this news was a massive shock to me and I am glad she got to the hospital in time as I don't know what I would have done if the outcome was any different. My mum is recovering well thankfully... However because of her heart attack it means she is now not eligible to be my living kidney donor. Even thopugh she was a 100% match.
Gutted doesn't even cut it. :(
The problem really is that I had my hopes up on her being a donor and they were estimating "around January, after the New Year" in doing the transplant if all went well... Well it's 2nd January now and I'm definitely not getting a kidney transplant anytime soon. I guess it's not the end of the world but I really don't want to be on dialysis for a long time. Whilst being on dialysis has given me a little bit of life and energy, it's still not the ideal life I want to be leading. I feel like my life is on hold a little bit until I get a kidney transplant sorted.
So, I'm pretty much back to square one in looking for a kidney donor and I'm pretty desperate. One of the renal consultants told me to get appealing and asking around... But seriously, who goes up to someone and asks seriously "do you want to give me the gift of life and be my kidney donor?" - what a way to put someone on the spot and test the friendship?! So I decided to make a facebook group. The group was more or less to just get people aware that I'm looking for a kidney and if someone thinks they might wanna go ahead and get tests done that they can contact me via facebook and I can pass the transplant co-ordinator details on and then tests can be arranged. The facebook group is: Living Kidney Donor
Testing takes about 5-6 months to complete under the NHS so I'm not going to hear anything for a while, I guess it's just a waiting game for me to see if anyone out there goes through with the testing. I really hope they do go through with it though. I can give the number out but it's up to them to call it up and go through with all the tests and appointments.
I really need to up my game if I'm to find a kidney soon. So this year I am going to focus my efforts on raising awareness about being a living donor. There is so much potential out there if the public actually knew what it was all about and what it all involves, but because it's not in the limelight i don't think it even crosses people's minds. I mean, I wouldn't even consider it if I didn't have the problem myself.
So if anyone has any suggestions as to how I can up my game in search of a living kidney donor then your suggestions are welcome and most appreciated.
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