The pre-dialysis stage lasted 1 year for me, give or take a week or so.
I went along to my first appointment which lasted 4 hours - 4 whole hours. It was a very thorough appointment where we came away with our heads ready to explode with all the information we'd been given. No-one could say they didn't cover everything...
First I went in for a blood test, which this time included a Hepatitis test and a HIV test, and she took 7 tubes of blood - SEVEN - and left me with a cracking bruise.
I then we saw a lovely dietician called Rebecca who went through what I eat on a general day and discussed what I should steer clear of. Other than salt there is nothing banned, just things to eat regularly, semi-regularly and rarely. Sadly in the rarely column were prawns (my favouritest food EVER), chocolate and crisps.
But, looking for the positives - spirits & white wine were good to go **happy face**
Out were diet/light fizzy drinks and in were full-fat fizzy drinks, out were crisps and corn based snacks (ie Monster Munch, etc) were in, out were mushrooms but in were as many apples & pears as I wanted. She convinced me to look for the positives; things I COULD eat rather than concentrating on the things I couldn't eat.
After Rebecca we saw Krisha, one of the lovely pre-dialysis nurses. She explained everything about dialysis to us. There are 2 types Haemo Hemodialysis & Peritoneal_dialysis . I can't have the peritoneal as I have a urostomy and they don't go well together, so Haemo it is for me. She thought it was time already to refer me for the fistula to be made on my arm for the dialysis machine to connect to.
This is where a vein & an artery are knitted together to create a sort of 'super vein'. And oddly enough this is the thing that bothers me the most. You see, my body is an utter mess from the waist down; wonky mangled legs with scars, bulging knees, minnie mouse feet, scars, urostomy, scars and oooh more scars. However, from the waist up, trust me I'm not too shabby - still have me own teeth, haven't coloured my hair (& the grey doesn't show up too much in blonde), great boobs & a winning smile, I think I don't look too bad for 48, I really didn't want a sodding vein; super or not, messing up my ok looking arms. And I am squeamish beyond anything; my squeam levels are set very low. The thought of this buzzing thick vein (for I have heard they 'buzz') in my wrist made me feel physically sick. Everytime I started reading any literature about it to prepare myself, I felt ill and get a bit upset. I can be such a girl sometimes.
I knew I had to have one and no matter how much I sulked & stamped my feet was going to change that but just for the record, I didn't want it!
We discussed home haemodialysis and by the time we left her she had a little list of people to refer me to and get to contact us - builder, social worker, community health team and we left with yet more leaflets.
Next was the consultant, Dr Gill Hirst, I was of course delighted to meet another Gill and especially one who knows that Gill is spelt with a G.
She wanted my entire medical history (this took some time). She explained everything that would/might happen and there were a couple of moments I did audible gulps and felt a bit tearful at the prospect of it all. She gave me more medication to combat leg tremors, the itchy skin I'd started getting (another symptom) and informed me I needed to have a course of hepatitis injections as I'd be using the dialysis equipment (apparently everyone who uses such equipment and indeed works in a hospital has Hepatitis injections). She rang the transplant nurse and got him to come down too to have a chat.
Isaac, the transplant nurse, was the most thorough of anyone we'd seen. He recapped everything, and I mean everything. I kept trying to chivvy him along, bless 'im but he was having none of it. Anyway he told us all about the whole transplant process. He didn't seem to think, as I did, that I wouldn't be suitable but it mainly depended on my general health and what my Cardiologist thought (seeing as I have a bit of a dicky ticker), he again gave us a ton of literature on transplant; information for me as a recipient and some for anyone thinking of being a donor. I don't think anyone would offer to be a donor for me, not that they wouldn't offer but it entails surgery & recovery so I think its a big deal and needs a lot of serious consideration and I certainly wouldn't want anyone to feel obligated to do so, and then if anyone did offer they'd have to be a match, so I'm pretty sure its a long shot and I wouldn't be pinning my hopes on it.
So, after the hospital appointment, my daily tablet intake went up from 4 a day to 13 a day. I started a diary of food intake each day & how I felt each day. I did a list of my medication, as some things need taking in the morning, some at night, some before food, some with food, some three times a week, some twice a day; it was bloody mind boggling!
All the medication quickly regulated the symptoms. The leg tremors stopped after I substituted the tablets for tonic water as the tablets gave me nightmares, tonic water contains quinine and is an excellent leg tremor stopper! I also had to stop the phosphate binders which caused major tummy problems. And the bicarbonate of soda tablets were increased to 7 a day from 3 a day. But the tiredness decreased a little, as did the lethargy and there is now no itchy skin.
It was all very trepidadting (not a real word but one we came up with on girlie holidays). I've had some low, teary moments worrying about what might be to come, but I just keep trying to remember that there are people in a far worse position than me. I've had 47 years of battling some bodily nonsense so I decided to look to this as just the next 'adventure', something to get through, to experience and come through the other side (hopefully), whether that be by ways of a transplant (fingers crossed) or mastering home haemodialysis and fitting it into a fully functioning life where I can finally get back to life and to normal, whatever 'normal' is. Maybe this is my new normal.
So for now, it's chin up and onwards and upwards.
Now pass me a Bacardi & coke, full fat of course and a Turkish Delight, minus the chocolate of course.... *sigh*
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