Tuesday, 10 April 2012

When the pain relief was wearing off the next day, the site of the pacemaker was really sore, mainly due to my breasts being so engorged with milk.

I was wired up to loads of monitors. So i was unable to leave my bed, not that i had the energy to do so anyway! I had to use the commode when i needed the toilet, which was really embarrassing for me and completely undignified. I pretty much cried all morning.

A man who was in the bed across the ward from me, kept asking loads of questions. At first i managed to be polite, but when he persisted with telling me what a rough time i must of had i could have screamed!

I hate that, when people you don't know are so overly sympathetic. I'm just moaning but it really annoys me!

One of the nurses came over and said that a side room had become available and that i could have it. Yes! So i was moved straight away.

I really had lost a lot of interest, i just didn't really care about anything. I wasn't even that bored.

The menu was very boring and the food was not nice! Or was it me? I managed about half a sandwich that lunchtime and threw it up almost immediately. The monitor started beeping really loudly and i really couldn't breathe (More than usual!) A couple of nurses came rushing in and everything went into slow motion again. I could hear people talking to me but i just didn't have the energy to respond. I came round, feeling really dizzy and there was loads of nurses in the room and 2 or 3 doctors.

Throughout this whole experience, i felt as if all the medical people i had spoken to were really patronising, and most of them didn't really want to upset me so they sort of shuffled round the issue and weren't really straight with me. Except for Dr Loke the cardiologist and now a really lovely doctor who i only ever saw twice.

I don't know his name and i didn't thank him nearly enough. He really put things into perspective for me, We chatted for a while and he told me lots of information about my condition. I asked him if i was going to die and he just shrugged his shoulders and said that it was a strong possibility but i was strong and had pulled through a lot already.

I'm a super duper negative person, I always have been. I prepare myself for the worst all the time so that i don't get shocked and hurt, and all this just made me a million times worse! But i appreciated the straight honest talk!

My mum and dad arrived later that afternoon with Thomas, But i felt different towards him. We were so close and he depended on me for the milk before, but now i felt like we didn't know each other. I tried, but i couldn't get to know him as every part of me ached and i couldn't hold him without nearly passing out.

The next day was a Sunday and i had a check on my pacemaker and a chest xray, which showed so far it was doing a good job! Dr Loke came to check on me and suggested that i see a psychologist to see if i had post natal depression. Yay i was unhooked from all the monitors! I went to see the psychologist and we talked. I told her how i felt and she thought my feelings towards Thomas were fairly normal considering all that had gone on. She diagnosed me with post traumatic stress and added an antidepressant to my ever growing list of tablets!

Saturday, 7 April 2012

I was taken pretty much as soon as he arrived. I felt very strange i wasn't even scared anymore. Waiting for Dr Loke, who was going to fit my pacemaker i was in a room full of over 65s who were completely knocked out after having there pacemakers fitted. The hardest thing for me at this time was that having the pacemaker, would quite possibly just not be enough, and i couldn't stop thinking about my future and all the things i wanted to do.

Two of the cardiologists assistance came and explained a little about the procedure but i couldn't really understand. Nothing they were saying was being absorbed. They took me through to the surgery room where Dr Loke was and around 5 or 6 other men and a couple of women, They did a great job at getting me relaxed. But OH MY GOD they were all stood around me and my heart sank! Haven't shaved my legs and there on show! At head height! Ha.

They inserted a needle with the anaesthetic in my right arm and hooked me up to the screen so that the doctor could see what he was doing. I grabbed a little look at all the equipment and almost threw up. Dr Loke put a screen up above my breasts so that i couldn't see what was going on.

I couldn't really feel anything painful but for around 15 minutes there was loads of pulling and pressure on the left side of my chest, I didn't make a sound until he put the pacemaker in and had to get it settled within the tissue, OUCH! they topped up the pain relief thankfully :).

The whole thing went on for around an hour, a little longer than usual procedures due to how bad my heart failure was. Which mean that i needed a bi ventricular pacemaker, with three electric leads instead of most which only need one or two. They had to keep topping the Morphine up as it kept wearing off. I was so uncomfortable but had absolutely no energy. As i had been breast feeding Thomas for 7 Weeks and then just had to stop, i developed mastitis just to top things off :).

I went back to the room with all the oldies for a few minutes, then i was taken back to the critical care unit. Rob was waiting for me. We sort of had a strange chat as i drifted off to sleep due to all the Morphine and pain relief. I was trying but i couldn't stay awake, Rob left at around 8 o'clock. I woke up at 9 o'clock and couldn't go back to sleep. Great! All on my own listening to all the emergencies that were going on around me.

Wednesday, 4 April 2012

That night was so hard because this had all happened so quick and i just didn't understand why.
I had never been away from Thomas not even for an hour, i hadn't even really been away from Rob for very long. I know it sounds silly but i didn't even know where Leicester was really so i felt a million miles away.

I'm not really sure how i made it through that night, but i did!

The next day was when i first met my Cardiologist Dr Loke. All the doctors and nurses told me he was probably one of the best in the country so that was kind of reassuring. He came rushing over to me in his surgery clothes and explained a little about the condition of my heart. Due to the extra supply of blood that my body was providing for my son a massive strain was put on my heart during the pregnancy, the birth and the few months of breastfeeding after. Dr Loke explained that i may need to be transferred to Papworth hospital if things get any worse and that i was on the waiting list for a heart transplant.

I had decided that i really didn't want one, i was so scared! I know it sounds really selfish but i just put all the thoughts of my family, especially Thomas to the back of my head and just wanted it all to be over.

Dr Loke advised me that it would be benificial for me to have a Pacemaker fitted, to stop my heart from beating too fast, it would also help the 2 chambers of my heart pump in syncronisation instead of the strange patterns it was deciding to pump on it's own!

I think when the words heart transplant were said i kind of just closed down and nodded my head. I didn't really care what happened from then on, i knew that Thomas was ok with my parents and again i just wished that i was dead, and it was all over.

I was left alone for a while and i just cried, couldn't stop. A nurse came over with a telephone and asked if i wanted to speak to my mum. I remember shaking my head, i didn't even look at her. I heard her on the phone telling my mum that i was going for surgery. Then it was obvious by what the nurse was saying, that my mum had given the phone to my dad and that she was crying.
Even though i couldn't hear her i could just see my mum and dad in my head, they were both crying and i just wanted to stop their pain, worry and stress. I know nobody deserves to go through what they went through but they are such fantastic parents and i could't bear thinking about what they were going through.

Rob arrived just as i was being taken for surgery. It was very strange as when i saw his face, all the pain went away and i sort of had some fight in me, i think i even smiled, it was great to see someone i care so much about.

Sunday, 1 April 2012

This is when it all REALLY hit me. It was so scary looking around and seeing all the other patients and how sick they looked. Mum and Thomas were in the waiting room as only 2 visitors were allowed at my bedside, Dad and Rob. Looking at their faces i could tell that it had also hit them!


I started to feel really sick, but as i hadn't been eating there wasn't anything to bring up. The nurses gave me anti sickness medication through a drip.


Mum and Dad left at around 7pm as they wanted to get Thomas settled at their house. I wanted Thomas to be with them as Rob would have to go to work and i wanted stability for him. Saying goodbye to him was the hardest thing i ever had to do, I had so much love for that gorgeous little boy but i just did'nt know if he would see me again. Rob stayed until 9pm when visiting finished and the ambulance would be arriving within 2 hours.


Then i was all alone! I cried for a while and then had to pee then cried then had to pee! (water tablets).


I calmed down a little around 10pm and even felt a bit sleepy. Then all of a sudden i felt overwelmingley sick and i couldn't move, I was trying so desperateley to move my legs but they just wouldn't move.
For what seemed like forever everything was in slow motion and it was completeley silent, i had little visions of Thomas and Rob without me, which i find strange that i can remember so clear even though my body was closing down.


I vagueley remember a couple of nurses rushing over and thats it really! I came round in the ambulance and could see one of the nurses had come with me and bought all her kit, i couldn't speak and when i saw her with the defibulator, i decided that all the effort i was putting in just to breathe wasn't worth it and i could feel myself drifting off. I just wanted it all to stop. I was so numb and so alone.


I remember being lifted onto the bed in the critical care unit at Leicesters Glenfield Hospital. Straight away i was put back on oxgen and given some Morphine through a drip.


I became really sleepy again but i was quite comfortable. A doctor came with the Echo machine and did another Echo of my heart. This was definateley the worst night so far! I just kept feeling ok and then all of a sudden couldn't breathe.


It was a lot busier at Glenfield, and pretty much everyone was dying or being rescusitated!

Thursday, 29 March 2012

That was pretty much it for the night, Rob left at around 9pm and the nurses bought in a cot for Thomas.
I really struggled for a couple of nights, trying to care for Thomas with little help. I could hardly sleep and everytime i looked at Thomas he had completeley changed his position in the cot, as he was used to his little moses basket. At least he was comfy :).


I kept asking questions but no one really told me anything which made me paranoid. The doctors were asking me really strange questions such as "have you ever had restless legs" and "headaches".


I was told that i was going for a CT scan and an Echocardiogram (Ultrasound of the heart) but i still wasn't told why! My mum and dad arrived and took Thomas for a walk whilst i had the CT scan. On the way back to the ward, the nurse was asking if i was ok and i just said no whats going on? She told me that i have a large heart but the doctors don't know why and they need to investigate further. When i got back to the ward, my mum and dad were waiting, i told them i had a big heart and dad said "yeah we know thats why you love puppies!" We really didn't know how serious the situation was.


My mum and dad left the hospital at around 1pm as Rob was due to visit at around 2 30pm, they left me just as the sonographer came to do the Echocardiogram, (Echo). The room was completeley silent for around 15 minutes until the sploshing sound that was the machine potraying the function of my heart filled the room, very strange!


A while later a rather abrupt nurse came in with some baby milk (formula) and told me that i'm not allowed to breast feed anymore, as the medication i need will pass through the milk. She also said that she had spoken to the councelling team so that they could help me come to terms with the fact that i can't have anymore children! Lovely way to break that to a 20 year old! I phoned my mum straight away and just burst into tears. I then phoned Rob, i wanted to tell him to his face but i thought he would be totally gutted and just want to move on, not that hes like that but i was in hysterics!


I managed to have a shower on my own as i felt quite energetic! But after i just collapsed on the bed and couldn't breathe. Thomas started crying in the cot and i wanted to get to him, and i was trying but i just couldn't move. I managed to ring the call bell and a nurse came quite quickly, popped her head in and started shouting up the corridor. All of a sudden the room was filled with doctors and nurses, I remember seeing through the oxygen mask, my mum, dad, Rob and Thomas cooped up in the corner of the room as they had just arrived.


After a few moments, i began to relax and get my breath back, this was the first time that the situation was explained to us. The doctor said that i would be transferred to Glenfield Hospital in Leicster as soon as a bed was available as they specialise in heart faliure. I was also told that the echo showed the efficiency of my heart was around 5%, the norm is probably around 70%. 


I could see my mum crying and everyone else just staring at me. I was really shocked and completeley convinced that i was a goner!

My blood pressure and oxygen levels dropped even further and i was moved to the critical care unit to wait for a bed at Glenfield.