Chest line number 2 and the infection…

Remember those troublesome chest lines? Since number 2 was fitted it just didn’t want to heal up nicely, constantly red and pussy, not ideal on your right boob. 😕

I was always aware of it, throbbing away. I was sure it would heal up soon. I’d had regular swabs of the site and one had come back positive for a nasty bug whose name was long and escapes me. They thought it would heal ok and my body would fight the infection by itself.

All was going quite well, I had tickets to see my beloved Bryan Adam’s at Wembley arena with my daughter Emily at the end of February. We had the Hilton booked and we were going to make a couple of days of it. It was in between dialysis days so as long as I left early Thursday to get back from London to Frome all would work out well. I really enjoyed the concert, BA as always was amazing and we had row 12 seats! 👌

We got back to the hotel room and got ready to go to sleep, I got into bed and started to feel like I was burning up, I often sleep warm in hotel rooms so put it down to a hot room and cranked the AC up, still I was burning up all night. The following day we left Wembley and headed back to Frome where I could dialyze. I will still buzzing from the concert and felt a little better.

The following day was Friday, one of my days at work now I was part time, I was feeling out of sorts all day, bit giddy, tired, but put it down to partying with Bryan, I’m not as young as I used to be you know!!

I was determined to make it until the end of my shift as I had more exciting plans! I was going to see Limehouse Lizzy with Sharon my bestie and Darin at the Cheese and Grain in Frome. I was determined not to miss it, I’d had my ticket for ages and having seen the Limehouse boys many times and become friends with Wayne and Greg I wasnt going to miss this for the world! I cashed up the till at work and went up to the office to finish off my duties. Nicks wife Mel came in while I was having a sit down, I’d come over hot and clammy and dizzy. She remarked I didn’t look too well, me being me, shook it off and got up and carried on.

I was leaving Route 2 to head straight to Frome to meet Sharon and Darin for a night of singing and dancing to the best of Thin Lizzy.

Had a good catch up before the show with them and told them where I was up to with treatment. I was driving home so no drinkies, but I felt like I’d been on the lash all night, proper woozy. Waiting for the band to come on I was feeling a bit wobbly on my feet.

The boys came on stage and they as usual gave us a great show, we were right at the front, always lovely to get a cheeky wink from front man Wayne. A couple of songs in and I was feeling rough as anything, a bit sick and a bit giddy again.
I can’t even remember what song Wayne was singing when everything started to go black, Darin must have seen I was going to go down and caught me and took me to the side to sit down. So embarrassing! Sat on the chair thinking I was going to throw up but trying to put a brave face on it because people were looking at me. I’d feel better in a minute I was sure, but every time I tried to stand up I felt giddy again. I sat the rest of the set out and after the show Wayne and Greg came over to see us and check I was ok.
Got hugs and kisses from the band and went away happy.
I went back with Sharon and Darin that night and left my car in the Cheese and Grain car park in Frome, I was due back there the next day to the hospital to dialyze so I’d get a lift and then drive my car back after my session.

Got home and went to bed, just couldn’t get warm, I shook with cold all night but my body was sweating at the same time. I thought I had a chill.
The following morning I got up and washed and dressed, then was sick.
They have a isolation room at the dialysis unit in Frome… so I thought as I must have a bit of a stomach bug, I would ring the unit so that they could set me up in the side room as not to spread my bug around to the other patients.
When I rang and explained how I was feeling they told me not to come to dialysis but to go straight to the ED in Bath, they thought I had an infection.
So off I went to Bath, Frome had called them to let them know I was coming to save me the long wait. They admitted me straight away and took bloods, I was getting used to feeling like a human pin cushion by now. I thought that they would possibly give me a dose of IV antibiotics and send me home with a course of oral antibiotics.

I had been waiting in the cubicle for probably 4 hours or so when the Doctor came to see me, I had a raging infection in my chest line and it was serious. Serious enough to be moved to Southmead. I had to wait for an ambulance.
They moved me up to a ward while I was waiting to be transferred and Steve brought Emily and Luke over to see me before I was transferred. I had something to eat but brought it straight back up, I felt like poo!
It wasn’t until 7.30pm that evening the ambulance crew arrived to get me, I’d almost resigned myself to a night at the RUH. So off I went to Bristol, again throwing up all the way. I was so sick that they stopped the ambulance half way and opened the side doors for me to get some fresh air. I can’t thank them enough for looking after me so well.

Arriving in Southmead I was taken straight up to 8b the renal ward, somewhere I was familiar with. I was given a lovely little side room all to myself, how fab I thought.
I thought they would put me straight onto dialysis as I had missed my session in Frome that afternoon, but it was late and they wanted the Doctor to check out my chest line in the morning and take it from there, they gave me a new cannula and another dose of IV antibiotics.
I settled in for the night and felt chuffed to have a private room, little did I know I wouldn’t have a decent nights sleep the entire time I was in there. Who should still be in but the screaming lady I had encountered when I was in before Christmas. She had been in long term and yelled all night. She was in the room just along from me and even with my door shut I could hear her screaming for someone to “help me” all damn night.
I came close to murderous feelings that week I can tell you, I imagined smothering her with a pillow.

The following day I saw the Doc and he said that I had a serious infection that would require a week of IV antibiotics and then a further three weeks orally if I was well enough to go home. They wanted to take the infected line out the next day on the Monday and wanted to leave me line free for 24 hours before they fitted a new one to reduce the risk of re-infecting the new line.
They would dialyze me today as I’d missed yesterday’s session.
I must admit the next couple of days were a bit of a blur, lack of sleep from the screamer and generally feeling poorly, I felt ill and tired all the time. I didn’t move from my bed let alone my room. I had no visitors and felt very sorry for myself and sad.
I remember one lunch time, I think it was the Tuesday, my phone rang and it was Helen my Sister, I was obviously not making much sense on the phone and got emotional when I heard her voice. She got off the phone, left her work and drove to be with me.
I didn’t know she was coming, I’ve never been so glad to see anyone in my life. I’d not had the line removed the day before, I can’t remember why exactly, I think to let the antibiotics get into my system. So I today was the day, but because some of my blood levels were very high they didn’t want to leave me 24 hours without the line unable to dialyze, they wanted to remove the infected one and fit another straight away.
Now I knew how painful it was to have the previous one fitted and that wasn’t into a very sore and pussy boob. Now they wanted to take one out and fit a new one into my already very sore tit. I was scared. Helen sat with me until they came to take me to the procedure room. She said she would wait for me to come back.
Off I went, I’d had this done before and I knew what to expect this time, that didn’t help one bit. I knew it was going to hurt.
They inject you into the chest with local anesthetic so I was awake with a heavy sheet over my head, just a little hole over my boob where they would be working.
The line coming out was painful but then putting another in straight away was horrible, I cried and cried while the nurse held my hand. It seemed to go on forever, but I was only in there for just over an hour. They took me back to my room and I felt butchered. Helen played me relaxing melodies on her phone and stroked my hair until I nodded off.
She was my guardian angel that day. I am so glad I wasn’t alone.

New line fitted and back on dialysis normally for the rest of the week.
They took me down to x-ray after Helen had left later that evening to make sure the new line was fitted properly and in the right place. All was good, I would go back to my room and wait for my dialysis machine to arrive and they hook me up.
I waited and waited… finally at almost 10pm they came to hook me up for 4 hours of dialysis, just when I was getting settled to try and sleep before screaming lady got going.

I popped on my headphones and listened to Bryan’s new album Shine a Light on repeat for 4 hours. They disconnected me a just after 2am and I was left to sleep. I had to go to the loo, so a bit wobbly on my feet I got up and went to the bathroom and brushed my teeth, screaming lady was well under way by now and my room door had been left open. I went to shut it. I stepped out into the corridor took the door handle and promptly fell down in a heap on the floor. I led there for a minute or so, not thinking I was capable of getting up, then I heard the alarm bell go off, I had been spotted flopping around on the floor! Three or four nurses came to my assistance, I felt sick and threw up on myself and they shone a torch in my eyes and asked if I had banged my head.
I assured them I was fine, and just wanted to get back into bed and sleep, but because I’d fallen they woke me every hour for the rest of the night to check my obs!

I had to stay in for the rest of that week having IV antibiotics every 4 hours and dialyzing every other day. I was so relieved when they told me I could go home, it had been a very long and traumatic week. I had thought I was invincible but now I knew I had to listen to my body and other people when they would tell me I wasn’t looking too well.
When you have been used to doing so much, finding out that you can’t do the simple things is frustrating.
So in the last 14 weeks I had three chest lines fitted, all traumatic and I was determined I wasn’t going to need another.
My PD operation was booked for the end of March and I would be having a catheter fitted to dialyze at home.
Bye Bye chest line and hello to sleeping at night without a bra on, I couldn’t wait!

Arrived to a fresh new gown!

Sharon and I at Limehouse Lizzy at the Cheese and Grain Frome!
Wayne with Sharon and I… I look Ok considering how awful I felt!


The Day My Chest Line And I Parted Company…

So 2019 was upon us!
Christmas and New Year had passed without too much fuss, I was managing to work a few days a week now and going to Frome every other day for dialysis, my weeks felt rather busy. I was beginning to get used to the routine of dialyzing now and felt like it was almost second nature after I had been on dialysis a couple of months.
It was the same each visit, weigh yourself so that the nurses could work out how much fluid they needed to try and get off me, get comfy on my bed with my tab and Netflix and blanket and wait for my Dad to come in and sit with me once I was hooked up, get a drink and biscuits half way though the 4 hour hook up and pray that I didn’t have a hypo or throw up!

Tuesday 29th of January started much like every other Tuesday dialysis day. Dad arrived to pick me up and off we went to Frome. I grabbed a sarnie from the co-op and went in to get hooked up. I really hoped for a good session, I had been struggling with my fluid intake and didn’t want them to have to try and take more that 2.5 or 3 litres of fluid from my blood, I seemed to be able to tolerate up to 2.5 litres without too many problems, but any more and I would feel sick, giddy, hot and clammy and then throw up! Let me tell you, when they say you that you can’t have more than one litre of fluid in 24 hours all you think about is drinking. I had to take into account the fluid in my food as well, so tomatoes, cucumber, fruit, gravy on my roast, sauces, ice cream, lollys and jelly all were naughty foods due to the high liquid content.
That Tuesday I was going for 2.7 litres to remove, I was a little nervous as I always was when the numbers were high, I really needed to limit my liquid intake further.
I watched a bit of Netflix, then Dad came in and we chatted about anything and everything as we always did. I had my digestive biscuits and was generally feeling ok.
I remember Sarah my allocated nurse that day saying to me that I had about ten minutes left and she would be along to disconnect me in a while when she had finished with Charles. Dad had to leave for disconnection so went out to sit back in the reception area which is where I would meet him when I was done. I congratulated myself on a trouble free session and good removal of fluid.

This was obviously where I should have given myself a quick slap and shut up that voice in my ear.
Man it was hot all of a sudden, I looked at my machine and I had just over 5 minutes left to go… it was almost 5.30pm…

The next thing I remember is opening my eyes to 4 faces peering down at me and a pressure on my chest. It was like waking from a weird dream, all foggy.
I had passed out and lost consciousness, that in itself was quite scary but I didn’t know at the time, but I had somehow, don’t ask me how because I haven’t a clue, managed to pull my chest line clean out.
The pressure on my chest was Sarah holding a pad to my right boob to try and stop the bleeding. They had laid me flat with my feet in the air and I remember asking what was happening to me. Sarah told me that I had had a little accident and they were working on sorting me out, I look down and I was covered in blood, my blood.
Even worse was the floor, it looked like a blood bath, Annie was coming back with a bucket and mop and I felt sick and my feet and legs started to cramp.
Who’d have thought blood could flick so far across the floor. I’ve never been great with blood, bit of a fanny really when it came to seeing the red stuff, now I was covered in it and looking at it on the floor and it was mine!

I asked for my Dad…. then regretted it in the next breath, I knew he wouldn’t deal with this too well, hell I was struggling a tad myself. The feeling of panic…was I going to bleed to death? couldn’t they just pop the line back in? would it ever stop bleeding?

They brought Dad in to be with me and he went into blame mode instantly, this didn’t help at all, as he started to get defensive and questioning as to how I had managed to get myself into such a state.
It turned out I’d been out of it for about 20 minutes until I came round, my blood pressure had had a monumental drop and I was away with the fairies, as I had passed out I must have fallen one way and because I was still hooked up to the dialysis machine I yanked the line clean out of myself.
The team did a fantastic job of calming not only me down, but Dad too. Dad started to rub my cramping feet and calves as I was unable to move still, he also apologized to the girls who were looking after me for his snapping.

Sarah was finally able to start to sit me up very slowly and they were able to ease off on the pressure on my chest and get a pack and dressing on it. It was then they told me I would be needing a little trip to Southmead.

As the last of my blood was moped from the floor and my hair and my bed, I finally started to feel shock set in, instantly cold and my teeth started to chatter.
They made me stay in the unit until my blood pressure came back up to normal and they were sure the bleeding had stopped. Meanwhile Jules was arranging with the renal team in Bristol for me to go back and have another line inserted, without it I was unable to dialyze and I would become poorly very quickly.

I think back to that day and congratulate myself on how well I dealt with all that blood, after all you never really want to see your red stuff out of your body, I had got used to seeing mine flowing back and forth through the tubes in my line, but seeing it splattered all over the floor was a whole different matter!
I don’t think my poor Dad will every forget that afternoon for a long as he lives.
Sorry Dad, I promise I won’t make a habit of it.

I think of all the things I have been through the last 7 months, that’s got the be the one time I felt totally out of control of what was happening to me and so thankful that the team of nurses I was lucky enough to be looking out for me did what their training had taught them and they looked after me and reassured us both.

I went back off to Southmead where I had a new line fitted, I hoped this would be my last… it wasn’t and that’s a whole other story!!

Leaving The Bristol Crew and Christmas…

December 2018 as usual for a December was a full month!
Anyone trying to be a working Mum with kids will know December is the most stressful month of the year. There’s the gift buying and wrapping, Christmas cards to buy and write, sorting Christmas food, I was trying to organize my works Christmas party and raffle and now I was having to drastically cut my working hours so that I could get to hospital in Bristol every other day to dialyze! There were days when I was hooked up for the four hour stint when I used to panic in my head about everything I had left to do and sitting on a bed for this long just wasn’t productive. I was frustrated and annoyed with what I seemed capable of doing. Then there was the paying for it all.
So 2 weeks after I was admitted to Southmead I went back to work.
Nick my boss had always been supportive but he went above and beyond helping me, that first month, even though I was away most of it, he paid me my full wage so that I could give my kids a normal’ish Christmas. He didn’t have to do this and I am eternally grateful I didn’t have to give my credit card too much of a bashing.

Being back to work just three days a week gave me a sense of normalcy that I had been craving, and I was so pleased to see everyone on my return. If I told someone the “story” once I told it 50 time, this might have proved annoying to some people, but I was pleased that people were interested enough to ask how I was doing and also interested in what was to come for me. I have always believed that we learn so much from just asking and if I could educate just a little by answering a friends questions then this would be worth repeating the story 100 times!!
I’m a great believer in keeping busy, but my Mum and Dad thought I really should have given up work but I was determined that I would be able to do it. Even though I underestimated how difficult it would be working three full days and then being on dialysis the rest of the week, I would feel very tired, constantly thirsty, sometimes sick and my heart would pound when I tried to rush to do things. This did get easier as I eased into the massive amount of medication I was now being prescribed for everything.
So I not only attended my Christmas Party at the Wyvern Club on Friday 7th of December but with Nicks help, I did all the food for 100 people and we set up the hall with balloons and decorations. It was a fabulous night, my dress looked pretty good on my new thinner figure (weight loss was easy now I was sick!) all the people I care about the most were there, we had a great band and although I couldn’t drink too much I did have a little dance and the night was a great success.
The rest of December passed with a blur with trying to catch up with my Christmas prep having been in out of action for a good couple of weeks I was on a deadline. So all the Christmassy stuff was completed a week before the day and I congratulated myself on getting everything I had wanted to do, actually done!!

Thursday 20th of December was a Thursday as I was as usual in Bristol on dialysis.
Sarah one of the dialysis nurses came over to my bed and said, “I have some great news for you!” It was to be my second to last dialysis at Bristol, I would come again to Southmead that Saturday the 22nd of December, but then my Christmas Eve session would be in Frome. They had wangled me a bed at the renal unit there to dialyze.
I was thrilled, this would save so much time travelling and getting stuck the the Bristol traffic, but then the soppy git in me got upset as it would mean leaving a team of people, staff and patients I had spent an unbelievable amount of time with this last month behind. I don’t do goodbyes well, end up blubbing on people usually. I wanted to thank everyone for looking after me, so Funky Pigeon helped me with a personalized card and gift ready to give the team on Saturday.
Being a few days before Christmas the unit was decorated with tinsel and and the staff already had a large stash of choccys and cards, so I added mine to the pile and slipped away after my session, saying the usual “see ya” but trying not to make a fuss . I got into the car with Dad and remembered my parking permit, I needed to take it back in so that they could allocate it to the next patient taking my bed. So back in I went and they had opened my card and read the hand written thank you’s to everyone, they gave me a hug and told me to keep in touch each time I came to Southmead for my appointments, this time I left in tears.

So today was Christmas Eve. My gifts were wrapped and the usual goodies and booze purchased, the tree was up at last and I was trying to feel in the Christmas spirit without my usual glass of something fizzy. Today I was not only dialyzing for the first time in Frome, but it was a Monday! As Christmas day fell on one of my usual dialysis days I would be doing it a day early on the Monday and then again Thursday, the day after Boxing Day. This meant being a little more careful than I was already being with my fluid intake as I had an extra day before I could dialyze again. The limited fluid sucks at the best of times, but at Christmas I felt proper grumpy about not being able to get on the prosecco by the bottle!!
Dad picked me up at about 11.30am to get to Frome. We hoped that it was the same system as Bristol and they would take you in on a first come first to dialyze basis. I again was on the 1pm slot.

We got there just before 12.30pm to find everyone sat in the reception waiting to go in. Frome get you in all at the same time and then you have a nurse allocated to 4 beds. There were 12 of us altogether.
Me, Clare, Ashley, Mohammed, Sue, Patricia, Barbara, Charles, Brian, Gerald, Peter and Adam. I would spend the next 5 months with these people for approx 16 hours a week and I didn’t realise how much I would miss them when my time came to move onto a different treatment. Clare in particular was so welcoming, she is about 15 years younger than me and had already gone through a kidney transplant when her Mum became her live donar, but just over a year later she rejected the organ and then ended up with a tumor and had to have treatment for cancer, this meant that she was back on hemo dialysis until she was given the all clear and could go live back onto the transplant list.
We would chat about how much the limited fluid was so difficult and she gave me top tips on how to conquer my insatiable thirst. She also liked to exercise, something I was really missing and told me about her training regime at her gym and what she was able to do. It was great to hear that I could start to do some normal things, things I had been missing as long as I was careful.

Dialyzing in Frome was a whole different experience, it really had a family feel to it, even after the first few sessions, my fellow kidney patients all greeted me by name and asked about my family, they made what was a scary time for me, less terrifying and included me as one of them and not the new girl!
So Christmas Eve I sat for 4 hours hooked up to the machine, chatting away to my Dad and getting to know the staff and other patients. Funnily enough it turned out that Charles and Pete both lived in Devizes with Charles living just 2 minutes up the road from me, it really is a small old world…

It was now Christmas morning, Luke came in to wake me at 8am and we opened stockings together and then got dressed and waited for Emily to arrive for the main pressie opening!!
With all the drama of my being sick the run up to Christmas we had decided to go out for our Christmas day lunch to save me the stress of cooking. So my Christmas party frock got a second outing and we had a lovely lunch at the Longs Arms at Yarnbrook, a fab 4 course meal with a few drinks. Just for a few hours I forgot the dialysis and meds and treatment and pulled crackers, drank cocktails and did brussel sprout farts!

As I got into bed that evening with Christmas day over and the new year almost upon us, I wondered what 2019 would have in store for me…

Nick and I at the Route 2 Fitness Christmas Party

Louisa and I at the Route 2 Fitness Christmas Party

Claire my life saver!

Me, Naomi, Mel and Hannah

Me, Naomi and Graham

Me and Carl

Me and Ian

Emily and Luke at the Longs Arms on Christmas Day

Me at the Longs Arms Christmas Day

My First Hemo Dialysis Session As An Outpatient…

Today was Saturday the 1st of December and I had to be in Bristol for the 1pm session. They do three shifts in Bristol for out patient dialysis, the first is 8am until Midday, my slot was between 1pm and and 5pm and then there was a late one at 6pm until 10pm. I liked the middle slot as it ment I didn’t have to get up at the crack of dawn to get myself to Southmead for 7.30am.

I went armed with a book, my trusty fleece, snacks and some magazines from my Sister Helen and of course my dialysis partner in crime, my Dad. Over the next six months Dad and I would spend an unbelievable amount of time together, in the car and at Bristol and then Frome. He has been amazing, and has seen me at my most poorly and distressed. When you arrive for your slot, you have to fill in a clipboard with your name, they bring people in on a first come first served basis, this I didn’t know the first few times, then we got wise to it and started getting there earlier to make sure I was one of the first hooked up. Each dialysis machine has to go through a cleaning program when the previous patient is disconnected, this clean takes 30 minutes. Then they call you in and allocate you a bed number, there were 15 beds at Southmead. I liked bed 1 the best as I had the best phone signal there, bed 13 was a dead zone!
Carlos came to take me in for my first session, he was from Argentina and his accent was fab, I resisted the urge to make him say things for my amusement. Dad had to stay outside until I was hooked up. Carlos went through the machine and told me what all the information on the screen meant. I think it helps to understand your treatment and how you can make the whole experience work for you the best you can.
So I was masked up and unbuttoned my shirt to expose my “hideous” chest line.
Its reasonably simple, I have 2 pipes coming out of my chest, one is red and one is blue. The red line is the arterial line and pulls the blood from my chest into pipes attached to the machine and then into the artificial kidney or the dialyzer. Once my blood has been filtered it is then returned to little old me via the blue pipe, and this is called the venous line. Different people, depending on the function of their kidneys have dialysis for different amounts of time. I was on for 4 hours at a time, every other day to keep me from becoming very poorly. I think we all underestimate the function of our kidneys and how much they really do to keep our bodies running.

So once Carlos and I had bonded over a few jokes and he told me how lovely my teeth were, (I get that often) Haha! He hooked me up, gave me the call bell and a tray table and moved onto the next patient. I texted my dad out in the waiting area and told him he could come in and see me now.
The first hour was uneventful, scoffed my food, had a small drinkie, read my book for a bit and then moved onto the Christmas Edition of Bella that my Sister Helen had brought into the hospital to me the previous weekend. Dad was playing about with his phone and all was going well. So I was about half way into a rather riveting reader true story of how this asshole had ripped off this woman desperate for love, not only stealing her money but shagging her neighbor too, but the dozy cow still loved him!!!! The words on the magazine page started to swim and man was I hot, I kicked of my fleece and looked at my Dad, it looked like he was talking to me but I couldn’t for the life of me hear him, I just watched his lips move!
I felt very peculiar and took a sip of water and laid my head back waiting for the feeling to pass, but it got worse and I asked Dad to get me a sick bowl. Thankfully just in time, I filled the bowl and another one too. What a waste of my lunch. They came and put me into minimum, so they stopped removing the excess fluid from my body, and within 10 minutes I was feeling much better. They then start dialyzing again and I felt sick, hot and giddy. My usually high blood pressure was dropping like a stone. This wasn’t the first time my blood pressure would get me into trouble while on dialysis…

So this would be my Tuesday, Thursday and Saturdays now until I could get a Kidney Transplant. Not knowing if I would feel sick or be sick for four hours every other day is quite daunting. My Dad was an absolute brick, stroking my hair and my back when I was throwing up and feeling sorry for myself. You do get used to picking up the signs that your blood pressure was about to crash and would press my call bell to stop me throwing up. That first out-patient session was one of the more scary sessions of hemo I’d have, there was another, a couple of months later in Frome that also had the scare factor, but I’ll tell you about that another time. Once you get settled into it, it does become the norm and you get used to how it makes you feel.

The most important thing for me were the people around me, I’m a social kind of girl, chat to anyone. You form a bond very quickly with those around you, especially as they are with you during what, for most is the worst time of you life. The staff and the other patients made me feel very welcome and I like to think I helped cheer up the ward a little, with my daft questions and humor.
So I made it to the end of that first session, still alive, feeling rough and tired. After being taken off the machine you have to weigh yourself again to see how much fluid they had managed to get off and was I anywhere near my “dry weight”? This was to be the phrase I would think about many times every day in the coming months. The “dry weight” is the weight they set you, the weight they want you to be after dialysis. I could quite often be 2 to 3 kilos lighter at the end of dialysis than I was a the beginning 4 hours before. Now for someone who has battled with their weight all their adult life this was gob smacking to me to think I could sit on a bed for 4 hours, eat pretty much what I wanted and still loose between 4 and 6 lbs at the end of it all. Of course it wasn’t from my tubby tummy but fluid built up in my body. One of the more strange side effects of hemo is that some people stop peeing. The machine was so efficient in removing the built up fluid in my body that I just stopped peeing. It was so weird having the urge to pee and then sitting on the loo and no pee pee would come!! It must have saved me a fortune in loo roll!
This was now my task every other day, no spontaneous jaunts away, planning even the simplest of holidays seemed a nightmare and the travelling was relentless, especially when your feeling rough. When most people feel sick they lie on the sofa and snuggle, I had to get in the car and travel to Bristol with my sick bowl.

In total the whole time I was on hemo dialysis I had 55 sessions and was hooked up to my machine 220 hours from December 2018 to the end of March 2019. I dialyzed just 4 weeks in Southmead in Bristol before they allocated me a bed at the renal until in Frome, where I would dialyze until surgery to fit a tenckhoff catheter in my tummy .
I’m now still on dialysis, but I’m on peritoniel dialysis which I do myself at home. Its four times a day every single day, and I will continue to do this until I have a transplant.

If your enjoying my blog, please do leave me a comment .

Discharge Day…

I woke that Wednesday morning feeling pretty good despite the lack of sleep, the ward I was in had a lady who was… let’s say… challenging! All night she yelled obscenities at the nursing staff looking after us and basically was rude, racist and very loud! I had my first true feeling of what it might be like to strangle someone 🤔 I clutched my pillow and had thoughts of smothering her… this was the morning that they might tell me I could go home!! 😁

Alison my consultant came to see me after Weetabix time and said all was looking good for going home later that day, I was waiting for meds from the pharmacy and then told that my liquid intake would need to be limited to 1 litre every 24 hours 😳 I had assumed kidneys needed lots of water but apparently if they are fucked then not so much…😕 in fact I also had to count foods with a high liquid volume into this 1 litre! So gravy, sauce, ice cream, fruit and veg were all suddenly taboo. If you know me well you’ll know I’ve battled with my weight over the years and being 8 stone down on what I used to be I was suddenly worried it was all going to pile back on as the things I usually snack on were out of bounds now. When your in renal failure your appetite wanes and I hadn’t realised it but over the previous few months I’d suddenly found weight loss easy… I remember June at the gym telling me how skinny my legs looked….this pleased me greatly 👍

Anyway back to discharge day… I had my meds, a lift home was on the way and my first appointment for my first out patient appointment for hemo dialysis was booked for that Saturday at the unit downstairs at Southmead. My lovely friend Lisa, a fellow renal patient and Devizes girl like me had seen my name on the patient board a couple of days before and popped in to see me, I was so pleased to see a familiar face, she gave me top tips on things to take to dialysis…blanket being number one! When they suck the blood from your body and clean it you feel the cold something chronic. So home I went that Wednesday scared with a tube hanging out of my right boob and wondering what the coming days would bring me. Being back home you immediately feel better, I had my kids, my cat and the thought of getting back to work. After all, how on earth was Nick managing without me?? 😱 So what was the short term outlook for me?

Dialysis Tuesday, Thursday and Saturdays in Southmead Bristol for 4 hours each session. They told me that most people like me don’t work and I should look into what benefits I could claim. This made me all the more determined to prove them wrong! I could work and I will work! Two weeks after my shock admission into hospital and with the support of my boss Nick and my colleagues I was able to go back to work three days a week inbetween dialysis days and work Mondays, Wednesdays and Fridays. I felt smug and a little bit invincible. This girl most certainly CAN!

Find out how my first hemo dialysis went in my next blog…

Also a massive thank you to everyone who has spoken to me personally or online to say how much they have liked reading my first couple of posts, if I’ve helped just one person understand a little of what being a renal patient entails then this will be so worth it.

What happened after that blood test…

I awoke suddenly in the early hours of the morning unsure of what had woken me. I listened and there was a heavy banging on my front door, I glanced at my phone at it was 4am!!
That can’t be good, I thought to myself… someone must have died! 😳

I opened the bedroom window, stuck my head out and there on the door step were 2 paramedics, I asked them which house they were looking for and he replied… number 4 😬 but I didn’t call an ambulance I told him, baring in mind I love my sleep and I was standing naked chatting to a ambulance man… I thought he was mad! He then told me to open the door and that the results of my blood test yesterday showed I was in renal shutdown. What the hell that was I wasn’t too sure but I was about to find out.

So standing in my bedroom in my knickers and bra with 2 ambulance crew helping me put some things into a carrier bag wasn’t how I planned to start my Saturday morning. The whole house was awake now and my son Luke was worried as was I now. As they bundled me into the ambulance I started to throw up and spewed all the way to the Royal United Hospital in Bath. The crew were amazing and looked after me all the way. When I arrived in the ED I was made to wee into a pot, have blood tests, scans and an ECG on my heart. I still didn’t know really how serious it was, I thought they were just covering all bases, just like they do on casualty. I thought I’d better text Nick my boss as I thought I might be pushing it to get home in time to start my 8.30am shift. Texted a few of my nearest and dearest and got comfy in my bed.

Several hours later and after a cheese sandwich they came to tell me I was being moved later that day to the renal unit at Southmead hospital in Bristol. They were waiting for a bed and they would move me by ambulance when I had one. Damn I thought to myself, I guess I won’t be working tomorrow either now!

At 7pm on Saturday the 24th of November the same ambulance crew that had picked me up that morning from my house arrived in Bath to bus me to Bristol, again I threw up all the bloody way! At one point we had to stop as my blood pressure was reading 251 over 110 and I knew that was pretty impressive. 😳

Arriving at Southmead I was taken straight up to 8b and given a bed in a ward with three other ladies. It was late and I was very tired but first I has to pee some more into a jug and have lots more bloods taken. Then get hooked up to another ECG and a drip. I had cannula’s in each hand and one in my arm. I was scared. It was about now I had the bright idea to put up a very unflattering photo of me hooked up to oxygen and looking rather crap and post it on Facebook to let all my friends know what a poo day I had had!
My phone went bonkers with messages and comments, so much so I just couldn’t respond to them all, but if you sent me a message that day please know you taking the time to talk to me made such a difference and made me feel like I wasn’t so alone.
I settled in for the night and hoped that someone would come to see me the next day.

Sunday morning they woke us early, who wants to get up for breakfast at 6.30am on a weekend! The nurses told me that the consultant would be round to see me after my Weetabix. I was relieved, I felt sure that I would be going home later that day, maybe with some pills to take or something.
My consultant Alison came to see me at about 9.30 am and drew the curtains around my bed and asked if she could take a seat. She looked me straight in the eye and said to me ” I’m sorry Melanie, but I have some bad news for you” … “Your kidneys are only functioning at 4% and they are not going to get better, we need to get you onto dialysis as soon as possible….
She asked me if I had any questions, and of course I couldn’t think of a thing to ask at the time. She said she’d leave me to process the information and she gave me some leaflets to read on my condition.

Most people in renal failure have to start dialysis when their kidney function gets to 10%, mine were way past that and they couldn’t believe I’d been working full time and trying to do gym classes with my renal function so low.
I was in shock, if you know me well, you will know I am a bit of a crier but no tears came. Then I had the task of contacting Steven to let him know how I was, so he could update our children and let my Mum and Dad know.
Things in a few hours got very real and very scary.
My Sister Helen was on the way to Bristol to see me and arrived just before lunch time, we had only just started to chat but there and then she said to me without hesitation, Mel if you need one, you can have one of mine and then they came to get me to take me to have a line fitted in my groin so that I could start to dialyze.
I never realised at the time but I really would need her kind offer of that life saving organ. So my line insertion should have taken about 45 minutes, but typically I do things in style and 2 hours later I still had no line in and was very sore and scared. They took me back to my bed long enough to eat my lunch and took me back down again to have another go. This was turning into the afternoon from hell, my veins weren’t playing ball with the wire that needed to be inserted and after a further three hours of trying I was in tears and had well and truly had enough.
Back I go to my bed, where the rest of my family had arrived and were waiting for me.
Dad was pacing the floor and my Mum looked sick. Steve brought Emily and Luke so I tried to keep a brave face on things, but I really really wanted to cry.

They told me they would need to take me down to x-ray and do the procedure there so that the doctor could see where to thread the wire. This time they were going to insert the line in my chest, my right boob to be exact. So for the third time that day I waved goodbye to my family and was wheeled off to have my line fitted.
An hour later and it was done, conscious though-out and I came back to my bed with my hair matted in my own blood and my poor tit looking like someone had butchered it with a knife. It was now they wheeled in my life saving machine and I dialyzed for the first time, something I have had to do every other day and now every day since.
I had dialysis every day for the next three days for 4 hours at a time to remove all the poisons built up in my body. It made me feel tired, giddy and a little sick, but I knew now it was going to keep me alive. I didn’t have many visitors in the days that followed as it was such a long way for anyone to come, but my school friend Paula came to see me and we laughed and gave each other advice, I was so pleased to see her, she will never know how much. All I wanted to know now was when could I go home and what was going to happen when I did?
Could I still work? I adore my job.
Could I still drive my car?
Could I lead a normal life?
So many questions were buzzing around in my head…
Stupidly I thought as soon as they would let me out that things would get back to normal… how wrong was I!!

Masked up and ready to dialyze!
My lifesaving dialysis machine.
2 hours and 40 minutes remaining of a 4 hour session.
That Facebook photo!
The line was in at last and working.

A bit about me…

I have been wanting to start this blog for a while to share the ups and downs of living with renal failure… My names Mel and I’m 47 years old. I live in Bishops Cannings a small village just outside Devizes in Wiltshire. Up until the 23rd of November 2018 I thought my life was plodding along as normal, I have two kids, Emily 25 and Luke 11 and worked full time at Route 2 Fitness as the Admin Manager. I loved exercise and gym classes, pints of cider and cheese! It started with me not feeling my best last year, nothing I could pin point as serious but odd symptoms..

Leg cramps… these were terrible, enough to make me leap out of bed several times a night in agony!

Feeling sick while trying to do gym classes… I thought my fitness had suddenly left me, all of a sudden I couldn’t do the classes I loved without thinking I was going to spew 😕

Pounding heart rate when exerting myself… this got so bad I was feeling terrible just carrying my shopping from my car to the front door.

Funny taste in my mouth… I was keeping extra strong mints in business I think trying to get rid of the terrible taste in my mouth, no amount of teeth brushing or flossing made a difference!

My lovely friend Claire persuaded me to go to the doctors to get checked out. So on Friday the 23rd of November 2018 (my Sister Helen’s Birthday) I went in my lunch hour for a blood test, the lady told me I should have the results back within a couple of weeks and to book a follow up with the doctor to discuss. I went back to work and finished my shift, went home and had a Chinese and a couple of pints of cider and went to bed… what would happen next would change my life forever…

Find out what happened next in my coming blogs..