cattycat234

I haven't written a journal in quite a few years as I have had a few ups and downs, 2016 mum lost her dad to a blood clot in his lung which the doctor ignored until after he passed on, he was actually supposed to have a radioactive dye test to see what the problem was the day after he died and although my parents don't blame the doctor i did and still do, all he had to do was make the appointment earlier and he would still be alive today. Sadly he's not and will never meet his grand-daughter.

Three years down the line, I'm in trouble, it's 2019 and although it starts off okay, February becomes a nightmare as I get a really bad and painful ear infection and it lasts three months, then in the middle of April I come down with what I think is a everyday sore throat, so this goes on for a few weeks and sadly it's not going away, tried every kind of cough syrup there is but no this wasn't budging. so i end up round my local doctors and I end up having several scans and x-rays to see what the problem was as i was also coughing up some blood, they find a massive shadow on my right lung and everything turns to the fact that i have a mild case of pneumonia so i didn't end up in hospital. i go to the lung clinic appointment on Tuesday the 16th July to see my lung doctor who has the results of my last ct scan and he shows me this shadow, it absolutely massive, it takes up most my right lung and he wants me to have a bronchoscopy , which involves a snake eye camera in the lung to see what's going on and he also wants urgent blood tests as well, so i go over to have them done and get the call to have the procedure on the Thursday which i agreed to. Wednesday came and i had my daily support but as i still wasn't feeling quite myself i decided to go and have a lay down but then got a phone call from my doctor telling me to go to A&E and i asked why, she replied that i had a problem with my kidneys, so i had to get dressed again and ring my parents who tool me to our local A&E where i end up at the same day emergency care unit, i'm not feeling well still after having a bad reaction to an antibiotic which made me sick even though i didn't have anything in my stomach so nothing was coming up, i was constantly falling asleep, feeling so rough that i had to sit on the floor as i didn't trust myself to stay upright on a chair. we finally get seen at 6.30 and do the usual tests of heart rate and another blood test. my father being worried asked what the problem was and the nurse said that i had AKI which i though meant Acute Kidney Infection, turns out that it actually means Acute Kidney Injury in other words, my kidneys were failing and fast. i was dry like the dessert as i hadn't passed urine at all that day and was put on three bags of rehydration fluid and stuck on a urostomy bag to help me pass urine and was in hospital for the night before i was due to have the camera in my lung but that was now postponed due to my kidneys. my parents had come to visit and bring me some essentials but then i was transferred to Kent and Canterbury hospital as Medway Hospital doesn't have a renal unit, so i am now stuck at a hospital that is miles from where my parents and friends live and still have no true idea on what's really going on. my kidney functionality was 19% at Medway and now it has dropped to 10%, i have only been there for half an hour and they take me to have a small op to have a groin line in, which is not best place to have it but as it was kind of urgent it was the only place at the time. later that evening i start having plasma exchange treatment to remove the anti-bodies that were attacking my system although they have technically been doing this for 13 years without any big issues, it just meant that i had a screwed up immune system but i didn't expect them to attack my system quite so badly as this. so i had a week of that, the first Friday of that week i have it out as i am having a hickman line done on the Monday of the following week, so they remove it but i decided to cough which caused the artery that the line sat in to erupt and i bled out, luckily the nurse had literally walked past and i was on bed rest for the rest of the day, what made it worse was that it happened on the doctors round, how embarrassing.

so Monday comes along and i have my hickman line put in, turns out that i was the bravest out of all the patients that this doctor has had and soon word and got to the other doctors that see to me and they all came to congratulate me on being so brave, most people would have to scrape me off the ceiling. sadly i still didn't quite comprehend on how ill i was until the day after and as i got up and went for a wash, it suddenly hit home that i was very ill after i saw the line in my chest. my parents also came to visit that day and i ended up very distressed but i was out by the end of the week. they have put it down to the fact that i have GPA which is a type of Vasculitis and it had got out of control and decided to attack practically everything and also before coming down with it was suffering with joint pain in my elbows and knees which i had taken Neruofen for and that also didn't help. i was given a book about CKD and joint pain was actually part of the symptoms of kidney failure. i had several bouts of chemo to get it back under control, i was also on high doses of steroids and got what is known as steroid face but that has gone down now and i'm on a long list of pills to keep me going.

Now i live on dialysis at Maidstone hospital and finally find out that i am one of the worst cases of CKD there was on the unit that the doctor has seen. Turns out they don't call it AKI anymore it is straight Chronic Kidney Disease which has five stages to it 1-5 turns out i wasn't in stage 1,2,3 or even stage 4, i had gone straight to stage 5 which is bad as it's the end stages of CKD and usually there is no coming back from it, they were a bit hopeful that i would jump back from it and get some functionality back before or after christmas of 2019 but sadly that never happened. they did rise to 12 but have dropped back down to 4 or 3% and i won't be getting them back either. so i am on dialysis until i can get a transplant and i am on the list near enough as i have to lose some weight first. my right lung is also fucked up, now turns out that i have several hole in it and could have a partial collapse, i used to be able to walk without catching my breath but now i am constantly fighting my own body, i have no immunity as my immune system has totally fucked off and i'm only 38, still young and in so much trouble. i have to have a special diet as there are certain things i cant eat but i get on with life.

i thought 2019 was bad enough but 2020 is even worse.

please stay safe and well.

thanks for listening and reading.

much love