hi everyone, i'm new on here. I have renal tubla acidosis, which means that the kidneys are excreting my potassium causing hypkalemeia not excreting the acid in my body, which in effect lives most acid in my body, with acid erosion's in my teeth, blood and bones, causing all kinds of symptoms, i also have Nephocalcinosis which is a kidney stone disease, kidney stones are always embedded my kidneys and a had two emergency operation back when i was fourteen 1987 one blocked in the urethra and the other in the kidney. Since then i have only had stages of kidney stone pains and a few passing with severe excruciating pains. I have managed to live a normal live have got married but divorced now and have four grown up children and three grandchildren. But sadly in june this year i was diagnosed at my Hospital Renal Clinic with End Stage 5 Kidney failure, which was a complete shock and then told me i would need to go on dialysis as i am only 9-14 kidney functioning, and to go on the transplant list. My brain just went numb and was in sheer fright, i thought at my age, i wouldnt never have to succumb to this unless i was quite elderly.
I have now had to have a two part procedure operation to form a fistual, one on the 22nd July and the other one 4-8 weeks later so rougly around end of September or maybe sooner depending on the maturing of the vein and artery maturing together. i see my vascular surgeon and renal clinic again on the 1st September. I know that its not the end of the world but i just feel that no one in my family really realises how seriously ill i am, or they are blocking it because it is hurting them too and are afraid to let out their own emotions towards me. I am since last February had to submit to a wheelchair now due to complications from my renal disease from birth, which i tried so hard to stay upright walking with crutches, walking frame, but my arm joints just didn't have the strength and the pain in my lower spine would be excruciatingly painful. So when i was admitted last year in January for constant Pancreatitis, that went on for about two years and the doctors where baffled themselves, but i was keeping a secret, i was pill popping non stop painkillers of very strong natures that they were prescribing me and i was misusing them to keep me upright. So after the last bout of pancreatitis and in intensive care, i had a word with myself to stop all the tablets and to get my daughter to help me control my medication even if i was in a lot of pain. While i was in the hospital i told the drs if i could see a physiotherapist about my pain and osteomalaci, a physio came and assessed me and referred me to a wheelchair specalist, who in turn assessed me and was eligible to have one, the sporty flexible type. I was fine for a few weeks but the constant use in my arms aggravated my weak joints now i have to be assisted.
my main worry now is when in a few weeks maybe a month and half or so, but eventually this year i will have to go on dialysis, and when i was on the dialysis unit the other day seeing a nurse about a dressing for my operation wound, i went right down the corridor into the dialysis ward and in my head it freaked the hell out of me, i said to myself that will be me in a couple of months time!! I have been suffering with moods fluctuating up and down with depression, and feeling really sad and burdened that i may die and it really scares me. thankfully i will be seeing renal psychiatrist/psychotherapist on the 5th of September, so i am really hoping that this will be productive not just with my kidneys but with my whole medical conditions i have to suffer with and the pain and the emotion and the personal turmoils i am going through in my life, i cant explain because it woud just take too long all i can say is my ex husband constantly harrass me not accepting our relationship is over even tho we are divorced and my housing issue, not suitable at all or disabled friendly to get in and out of the buildig and being on the fifth floor for a year since i moved in the lift has been malfunctioning and nothing enough is being done to deal with the problem and on top of that their Health and Disabilities Assessment from my Housing Organization dont see this as a health priority, are they stupid!!! anyway that is just the tip of the ice berg, just a little taste of the things i am going through at the moment. I came on here because it sounded so interesting, with so many different communities u can follow and relate to if you have the same conditions or symptoms and being able to post your side and hear other peoples side to and get together and advise one another in our times of need and feeling like life is at an end im glad i joined if gives me an uplift to hear others in the same situation, but i am still very worried about the dialysis treatment i am going to have in a couple of months, will it hurt, will i get infected, will i get withdrawal symptoms so many questions and when i see the doctor, they all get forgotten about because i am distracted about where i am in the renal unit and my brain just goes numb!! Next time i take a list that way when i freeze from fear or worry i have the questions on paper good note to self lol. i look forward to hearing everyone else's strories, and i hope mine hasnt been to dragging and ranting, i'm just explaining myself as i am new. so take care everyone xx