clhworld

[clhworld]

Blood poisoning

In 2013, Doctors were wanting to remove my kidney due to a cyst growing on my left kidney. ( it had over grown the kidney due to the kidney shrinking throughout failure ) They were worried incase it would cause complications in the future with my transplanted kidney when I were to get one. Two days after being discharged I went into hospital with severe pain and difficulties breathing, an xray showed that fluid had built up around the bottom of my lung but with walking around and breathing exercises It was to clear by itself and I was sent home. The next day I had puss coming out of the site of surgery, I went straight to hospital and pretty much from there it just escalated very badly.  It was almost like my body knew I was in a safe place, within an hour of being there my breathing had become worse, I was in almost like a daze, very light headed and completely weak. I just needed to shut my eyes, they were so heavy! Tests showed that an infection had built up in the kidney bedding which had got into my blood causing sepsis. Fluid around my lung had risen and half of my lung had collapsed, I was taken to ICU and just like that I slept through. I remember feeling so weak, I couldn’t even open my eyes, it was just too much. It was very touch and go but apparently my body was able to fight back and here I am to tell the story! I was in ICU for roughly 5 days before going to the renal ward. I had to have a chest drain inserted to drain the fluids around my lung and a seperate drain into the kidney bedding to drain the remaining fluid.I was still very weak but my blood results showed that the infection marks were coming down slowly with each day. I was in hospital for over 5 weeks until I was finally discharged. However, this was just the beginning, it wasn’t long before I would start becoming unwell, being kept in to retreat sepsis which had come back. This was just 1 of many trips, as soon as I was treated I would be discharged but within a few days I would be back again, with the same thing! For the remaining of the year I would be back and forth to the hospital, blood test after blood test. Scan after scan, I soon lost weight and was skin and bones before having to have a feeding tube.  I remember having to have a camera put down my throat to make sure that a feeding tube could easily be inserted through the nose and down, Worst Thing EVER! I was put under sedation. feeling woozy as the drugs run in me, all off a sudden I’m choking and gagging it was horrible! the feeding tube going in was just as bad! Feeling the coldness of the fluids going up my nose and down my throat, was horrible! 

[clhworld]

Despite being dead for over a year, famous author Agatha Christie saved a baby’s life in 1977. 

Her novel The Pale Horse described thallium poisoning so well that a nurse who’d been reading it was able to diagnose a sick infant, who had doctors stumped. 

The baby was immediately tested, they found traces of thallium, doctors changed treatments, and her life had suddenly been saved by a 16-year-old murder mystery novel. 

(Source, Source 2, Source 3)

[clhworld]

Haemodialysis

After developing insomnia, I found it difficult to get to sleep at night and would end up sleeping through the next morning and would often be late for work or miss my shift entirely. Also resulting dialysis treatments being late. After speaking with my renal team, they agreed to start haemodialysis.

I had to have a small operation to have a vein connected to artery to form a fistula, this helps the vessels to be wider and stronger to handle the needles and blood flow from the machine.

Two needles are inserted, one to bring the blood out off the body to the machine where it gets filtered and then pumped back through the second needle. The treatment lasted 4 hours 3 days a week, though it varied throughout the year, often 5 hours would have to be done if my blood results were bad or if I had any extra fluid to take off.

To begin with, It was a simple process, fast forward a couple off months and I would soon start having problems with being needled. As soon as the needle touched my skin unbearable shooting pains would be sent across my arm, ultrasound of the arm showed nerve cells had formed around the entry point, I had to have a stent put into my veins further up my arm to make a new access point for the needle. 

This treatment is more strict when it comes to diet. I was restricted to 500ml fluids per day, anything that had fluids in it would count; yogurts are classed as fluids, gravy with my meals, ice cream, even cereal with milk. I had to be really strict on how much fluids I was having as my kidneys were no longer able to produce urine. It wasn’t just fluids!

Anything healthy seemed to be a danger for me; fruit, vegetables even dairy products! Anything that contained potassium had to be restricted. for example I was only allowed a single potato (jacket potato size) a day; crisps,chips, waffles would all count towards that portion. I was only allowed a single piece of fruit or a handful of grapes or anything else small. Bananas were a huge no! nuts and even meat contained potassium. Potassium helps your muscles work, including the muscles that control your heartbeat and breathing. Too much potassium can affect the way the heart muscles work causing irregular heart beats, which in the worst cases, can cause heart attacks! I had to take food binders to help break down the potassium. This also helped break down calcium, too much calcium can cause bone disease; milk, cheese, yogurts, even ice cream! milkshakes and everything else that I love about dairy taken away from me! Although, many times I remember having too much calcium each blood results (oops).

With the strict diet there was many side effects to this dialysis treatment;

Feeling completely weak after each session, feeling so dehydrated, often dizzy because my blood pressure would often drop. Feeling so hungry after dialysis due to missing dinner that I would sit on the kitchen floor waiting for toast to pop or re heat dinner if left any, eat and straight to bed but often enough I would be  so tired and drained I would force myself up the stairs to bed! 

I remember how hard work became because I would be feeling drained still the next day, I would often be a zombie at work, just getting through the shift so I can return to bed. I had to change my work hours to fit Dialysis days but that meant often missing dinner.

I still remember the pain and agony I was in when there was problems with needling, often having to go to hospital just because there were problems. I remember I had gotten to breaking point and just skipped treatments which I would regret the next day. If Dialysis was missed, I would feel how bloated I would be, my feet would swell up from extra fluid, I would start feeling sick and start to feel weak. What was the point in going to treatment that’s meant to help when it makes me feel so shit afterwards?

I remember the times where my vein would collapse or if the needle had moved slightly; a small bubble like shape would form underneath the skin, growing and growing sending the most outrageous pains ever! Dialysis would have to be stopped and ice immediately put over the site. The bruising that would happen over the next week or so would look as though I had been beaten! Covering that up for work was not fun! My arm would be so sore even two days later I would have to be dialised differently.

[clhworld]

CAPD ( Continuous ambulatory peritoneal dialysis )

Continuous ambulatory peritoneal dialysis is one type of peritoneal dialysis which uses manual bags containing peritoneal dialysis fluid. It is done every day, four times a day and is done via a catheter which is inserted into the peritoneal cavity located in the lower abdomen (around the belly button). Each bag of fluids is 2 litres and works by attracting water and toxins to the peritoneum which is drained out and replaced with fresh peritoneal dialysis fluids with each exchange. The fluids contain glucose (which attracts water build up) and different strengths are used depending on how much unwanted fluid is left in the body, often, draining too much fluids would risk dehydration or too much fluids would risk my health further. Knowing which strength bag to us next was always a guess for me. I would get a delivery every 4-8 weeks, up to 80 boxes (sometimes more) just full of the treatment, then up to 20 individual boxes full off all the adapters/equipment I needed. The house soon started looking like a hospital, Mum at times would often get annoyed with it all, or would make a comment if I ask her to help, I would keep it out of the way as much as possible and would never bother anyone for help as they were never bothered. I remember having the operation to have the catheter inserted, I was so scared. The first thing I remember doing after waking from surgery was trying to look at this tube now hanging from my side, I remember feeling instantly ugly.  I hated it! “It wouldn’t be forever” I’d get told, How are they meant to know? Are they psychic? They aren’t the ones with a tube hanging out of them!

Unfortunately, I had to give up work. Due to not being able to drive, I was unable to take the equipment with me. The fluids took an hour to heat up as having it go in cold would cause cramps, the exchange itself would take around 30 minutes. It was impossible to be out of the house for long due to needing to be back just to set everything up again. It wasn’t long until my friends would stop seeing me, it would be too much to drive me back if they weren’t ready to leave, I became very trapped, and soon started developing depression.

After talking to my renal support, they suggested I tried APD ( Automated Peritoneal Dialysis )

It works just like CAPD just through a machine, the process would take 8-10 hours. Unfortunately, there wasn’t enough room in my bedroom  for the machine and all of the bags that I had to use, delivery would contain more stuff and there was just no more room. The machine settings were hard to set up in the right timings, I would have to get the hospital to re-code a little disc that comes with the machine but I could never settle. When draining out, to know that there is no fluid left, unbearable pain would happen, I can only describe it as a shooting cramp almost like my insides are being sucked out, a pulling sensation will shoot across my whole tummy, so having to get up to stop the machine was too much!

I took it upon myself to do exchanges manually overnight. I would do an exchange before bed and then wake for 5am to do another. I would wake and do my final exchange around noon. I was now just doing three exchanges, not getting the right treatment I needed but it meant  I could work and be out of the house keeping myself busy and not just have my health and depression bringing me down. 

[clhworld]

How it started

I was just 10 when I became unwell with the general sore throat/flu symptoms, thinking it would go away after a few days by itself it never did. Mum took me to the GP who sent us away with antibiotics, after completing the course and my symptoms getting worse, mum took me back to the GP who then sent us away with more antibiotics. It had now been a good 5 weeks since I had last eaten anything, last kept any kind of fluids down, I had become too weak to walk, I was just sleeping and that’s all I wanted to do. On the 3rd trip to the GPs I had bloods taken but my body was not holding out for the results; the next day, mum and I were at a different GP surgery due to me being in unbearable pain and blood being in my urine. As it was a weekend my usual GP surgery was shut. My mum got an urgent call from my nan explaining that our GP was at our home urgent to get me straight to the Hospital as my kidney levels were dangerously low. I remember going to the local hospital to get further tests but a few days later, I was transferred over to Great Ormand Street Hospital where I got diagnosed with post streptococcal glomerulonephritis ; When your  body tries to fight an infection, it makes antibodies. Antibodies are the part of the immune system used to identify bacteria so they can destroy them. Usually, the dead bacteria (the Streptococci) and antibodies will clear from your body without any problems. In PSGN they become trapped in the filters of the kidneys called the glomerulus. This causes inflammation, which slows down the filters of the kidneys, making it harder for them to make urine and get rid of the waste. I was put on a high dose of strong steroid treatment that helped get rid of the remaining bacteria but unfortunately left my kidneys very scarred in the process. Fast Forward 20 years later and my kidneys start failing 

[clhworld]

I don’t think people love me. They love versions of me I have spun for them, versions of me they have construed in their minds. The easy versions of me, the easy parts of me to love. Who’s going to love the girl that can’t stop crying? The girl that hurts herself? The girl that is losing control? The girl that is so sad she can’t get out of bed? The girl that keeps pushing everyone away? Who’s going to love the monster in me, who’s going to love me now?