Newly diagnosed and feeling very alone

I am a 31 yr old wife and mother of three amazing children and recently I was told I have heart failure and was diagnosed with postpartum/dilated cardiomyopathy!! 

I gave birth to my beautiful baby girl in may 2013, it was a very tough pregnancy with many health issues that I believed would end after I have birth but they didn't. I have a weak spine due to fracturing a verterbrae in 2011, the same verterbra fractured again during my pregnancy and again during labour so when I wasn't feeling great after giving birth it was put down to having just had a baby and also my back.

It made sense as my symptoms were tiredness (show me a mother to a newborn who isn't tired) I retained a lot of fluid which I was told was fluid dispersing around my body from the pregnancy, I was in a lot of pain every where which was put down to my back, I was continually fainting which was put down to low iron due to the fact I had to have surgery after giving birth and lost a lot of blood. 

These things went on for months but then seemed to get better except for the fluid but by then I believed it was fat and as I was getting married I tried everything to lose the weight but I just kept getting bigger and became very depressed. 

Almost exactly a year after giving birth I started to become breathless, I was exhausted all of the time  and I put that down to the fact that I had gained so much weight but even though I had list my appetite and hardly ate anything I couldn't lose the weight, I would take pregnancy tests over and over because my symptoms seemed like pregnancy.

Then one day the breathlessness got worse and I couldn't lay down as I couldn't breathe and my chest was hurting, it felt like I was being stabbed with every breath I took!

So I called my doctors and was told to call an ambulance, the paramedics said my oxygen was at 93 and my blood pressure was through the roof so they took me into hospital.

At the hospital I was admitted and had a cat scan which the doctors believed showed I had Septic Emboli in my lungs blocking my arteries but they were unaware where the infection was they were coming from so I was prescribed a number of IV antibiotics, pain killers and fluids plus having numerous tests done including MRI's and an echo.

On the day of my echo my breathing had got worse and I couldn't be in any position but upright and as the day went on even being upright was getting harder to breathe.

Unfortunately I was on a surgical ward instead of a medical ward and the nurses were to trained in what was wrong with me and were also not very compassionate or sympathetic and treated me like I was making the whole thing up so when I would ask for a doctor I was told I didn't need one and to just "lay down and get some sleep" nobody would listen to me, they would turn my oxygen up but I had a mask that would only allow a certain amount through so it made no difference, I was constantly needing the toilet but was attached to the bed with the oxygen and couldn't take the mask of for more than a few seconds but I had to go to the toilet as I had been waiting for 45 minutes for a nurse to answer my buzzer, while in the toilet I must have collapsed as I woke up on the bathroom floor struggling to breathe, I managed to get myself to bed at which point a nurse turned up and told me to "shut up and get some sleep you are keeping everybody awake" 

Finally at 4am (13 hours since I first asked for a doctor) a nurse called a doctor!! 

The doctor arrived and instantly took blood from my arteries then called for a senior consultant, when the senior consultant arrived he told me my blood test showed my oxygen levels were at 81 and he was shocked that I hadn't crashed!! 

He calked for a portable x ray and took the nurses aside for a "quiet word" about how disgusted he was that they left me like that. 

The x ray showed my lungs were drowning in fluid and I was instantly given a Fuorisimide drip and within minutes I was weeing non stop and my breathing got so much better. 

I thought that was it and everything would go back to normal but then another doctor came to see me and told me I was going to the Intensive Care Unit at which point I became very scared as I knew they don't take people who are easy to make better over there and something serious was going on.

Within around 40 minutes of being on ICU a cardiologist came to see me and in those few moments he was talking to me he changed my entire life only I didn't realise it at the time, I heard "you have heart failure, the right side of your heart is severely damaged and isn't pulling blood into the heart fast enough causing the left side to only be able to pump it out at 30% and also causing fluid to build up around the heart and lungs" 

I didn't cry, I didn't ask questions, I didn't do anything but listen as they told me about the medication they were putting me onto and what they were going to do with me. 

I was scared but I hadn't truly understood what was going on and in my mind I believed they were going to fix me and send me home when I was better so I stayed in my bed and gradually was able to have the oxygen removed as the diuretics infusion was clearing away the fluid. I had a line put into my arteries so they could monitor my oxygen levels, I had lines put into my veins to administer drugs and I had a catheter fitted to remove all of the fluid.

On top of all of this I was struggling with a coil is had fitted three months before as I had been bleeding the whole time so I had become anaemic, the coil was removed and I had to have a blood transfusion as I'd lost too much blood but that made me feel better and I was confident I was going to go home soon all better and back to myself. 

Then after a few days on the ICU (I'd been in hospital 10 days by now) I had a visit from the heart nurse and while talking to her I soon realised how wrong I had been and what I had was actually going to be with me for the rest of my life and my entire life had to change from that moment on!!

My mum came in the room after the nurse left and I burst into tears and said "I thought it would go away" my mum replied "I know you did baby but I had to let you realise it yourself" that day I saw my children as the nurses believed it would be good for me but telling my children what was wrong with me was the hardest thing I've ever had to do, their little faces looked devastated and there was nothing I could do, I couldn't even hug them properly because of all the wires. 

Since then things haven't been great, I'm constantly exhausted, don't ever want to eat, never have any energy for anything and when I do have the energy I be one breathless within minutes. 

My home life is terrible, I'm constantly arguing with my husband because he has no idea how hard this is to live with. 

I have very little real support from anyone and I feel so alone. 

Not only have I had to come to terms with having heart failure I also have to deal with the fact I'm not allowed anymore children and that is just as tough but everybody around me is bored of hearing about it and nobody understands that I need to talk about it. 

Nobody is helping keep my stress levels down so I'm constantly in pain in my chest even my husband will do hardly anything to make this easier. 

I'm extremely depressed and because I feel I can't talk about my condition there is still so much about heart failure that I don't know about.

So I decided to go online and find people in the same situation that can relate and understand what I'm going through and hopefully I can do the same for them.

I am sorry for the ridiculously long introduction but it's the first time I've been able to talk about the whole experience at once and when I started typing I couldn't seem to stop. 

I hope there is someone out there who reads this and thinks "I know exactly how she feels" or just simply someone who can see I just need to chat and stop feeling alone.

Thank you for taking the time to read this and apologies again for the length of it and also for any grammatical errors.

Thank you

Terri 

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