Newly diagnosed and feeling very alone

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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 

1 like, 7 replies

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7 Replies

  • Posted

    Dear Terri,

    Isn't it funny how the Internet can bring us into contact with people we would never meet in our everyday lives. I am so touched you took the time to write your story, so touched that you trusted it with us, fellow writers on this forum.

    I am so sorry you have had to go through so much at such a young age. My heart hurts for you. I have a similar story, but my issues are a bit different and they were layered and hard to diagnose. Mine also started after the birth of my children. That was 22 years ago. I wish I could tell you I have found healing, but that wasn't to be my journey. I have learned to live around my health issues, but it was the hardest when my children were younger. I live a lovely life now filled with lots of good friends and I am doing what I love and I've traveled the world...but I will never get well.

    I have had mean doctors and nurses too, but I also have had remarkably kind and wonderful medical staff. The ones that are ugly I either now ignore, or if needed, I talk to them...and if that doesn't work, I get a hospital supervisor. No hospital wants an unhappy patient. Medical staff are human and they can be in bad moods and they can make mistakes, so we have to stand up for ourselves, with gentleness and compassion at first, but stronger words and actions if needed. The primary doctor is key. He/she is the hub and if you find one with humor and compassion, he/she will connect you with doctors of the same caliber. But nothing is quite as dehumanizing than having the very people who are there to care for you when you are suffering, treat you badly. Forgive them and move on. Illness does wonderful things for us if we let it. It teaches us true compassion and deepends our lives in amazing ways. But, it isn't a road I would wish on my worst enemy. 

    I'm 52 and walked this road a long time now. My marriage struggled for a bit, but as I gently explained my illness, as I prayed and prayed for my husband to be kind and patient with me, he changed and where he was imaptient and frustrated, now he is loving and supportive. Chronic illness is a family affair and your husband may still be in shock. My daughter actually wrote a paper in HS about my health issues and how she admired my courage.smile But, I'm not going to lie, chronic illness is a tough road and you are so smart to reach out for support and love from those who are walking it too!

    Terri, feel free to FB friend me if you want to chat more. 

    Karin Norbeck Smith

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  • Posted

    Terri, your medical history is very similar to mine.  Firstly, I was helped enormously by a cardiomyopthy help site, here is the link. _____

        it took me a while to work out how to navigate it.  I found the forums good and I also phoned and got help form the site founder, called Lisa.  They are so helpful and caring.  For me, in the end I had open heart surgery and they renewed enough of my heart that the odeama is gone and I can go running up the stairs with ease.  Stairs used to look like a steep mountain previous to the surgery.  I am so sorry for you for the dreadful experience which you had in hospital.  I had something similar and I feel the emotional scar the trauma left will be with me for life.  I really fear hospitals now.  Let me know how you get on with the HCMA site.  Good luck.

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  • Posted

    Dear Terri.

    My self Mehdi Abbas I am from Pakistan. I had a svere heart attack in November 2013 at the age if 40. As my family members and doctor say that I was almost dead on emergency bed. But with the blessing of God and prayers of my friends and family member I survived. When I had that cardiac event, initially I faced it with high spirits as I was happy to see me alive. But with the passage of time I went into the state of svere depression and anxiety. I also started feeling alone and losing weight without any effort or dieting. I was totally stuck and couldn't even think about any thing positive. I thought my life is finished and there will be no more tomorrow. My family supported me a lot. I have very loving wife and caring 4 daughters and a son. But even it looked hard to come back to normal life. 

    I started looking forums on Internet where I could share my problem and get advices. A lot of people gave me response. I even went for counseling for depression and that helped me a lot. 

    It's my personal experience that when you stay alone and don't share your problem with your family, friends and loved ones your depression gets more worst.  So I will advice you to go out side your home meet your friends spend more time with your family specially kids and your hubby. Although it seems difficult but believe me it's only you who has to come out of it your self. Others can only help you out. 

    I will pray to Almighty Allah(God) for your comprehensive health.

    Stay blessed

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  • Posted

    Terri it's a terrible story of how the NHS nurses can and do fail people. I have had similar unsympathetic experiences!

    I'd get in touch with the British Heart Foundation asap. They have some great information - and there are videos you can show your husband! You can't do this alone. I'm not sure if I'm allowed to put up a weblink - but type British Heart Foundation into a search engine. On their site type in "Heart failure" and there's lots of useful information.

    Also, if you type in "Heart Groups" into the search box you will find a local support group. Why not see if you can talk to others in a similar situation. They may have info about disability benefits should your condition make it impossible to work or mobility difficult. There is support out there.

    I also think chatting to a counsellor would help (I used to be one so I'm biased!) - because you've a lot of things to think about and your husband is probably in a state of denial and shock. Your GP could advise.

    I'm sure you will be given a cardiac consultant to see for follow up. I think you need to go and talk to your GP about cardiac referral, your terrible hospital treatment and what can be done to help. I'd book a 20min long appointment - a double!

    I hope you find a way to manage this illness to have the best quality of life as possible. Let us know how you get on?

    All good wishes,

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  • Posted

    Hi Terri

    Sory to hear of your difficult situation, I have Dilated Cardiomyopathy and suffer with similiar symptoms to yourself.

    Please contact the Cardiomyopathy Association, they have a website, with info about your condition, Heart Failure Nurses that you can talk to, Key Support contacts, booklets, DVD's, forums on the website, there are lots of people with the same condition, as yourself and will be happy to talk, advise and listen to you. The condition may improve with time, correct medication, and by looking after our heart & health, but it might not, every one is different and people respond in different ways to he medication, it is a case of learning how to manage the symptoms.

    It will get better, but this is all new to you and even more difficult to manage with a new baby, as you learn about the condition and understand it and how to manage it.

    Please feenl free to PM me tonight.

    Thinking of you

    Nikki

    remember you are never alone with this conditiom

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  • Posted

    Hi Terri

    Just wanted to offer my support too. I don't have experience of these health issues, but I can see how badly you need to talk to someone. It's hard to talk to relatives as you want to share your fears and sadness, but you also don't want to scare them.  You have been through a BIG shock and how you're feeling is completely normal.  It may be (as others have said) that your husband is in denial and trying to deal with it in his own way.  I think it'd be great if you could get some counselling (your GP should be able to refer you)....this will be a safe place to chat about everything and maybe in time, your husband will come too.

    I'm a big believer in positive thinking. No, it doesn't cure our health problems, but it makes them manageable. Having some counselling will help you to see the wood from the trees, so that you can get your perspective back and enjoy life, despite the issues you're dealing with.  I hope you find these forums a big support! I think we can do anything, when we feel like we've got support.

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  • Posted

    The medical profession 99 out of 100 consultants will treat the illness as presented holistic treatment in not on there radar.  Low mood stress anxity all put strain on the heart.  While I don't have a heart condition myself I'm an AHP it's forums and chat rooms like these that connect people with similar complaints that can help the unseen part of the illness the emotional side.  Keep talking keep posting and remember you have three beautiful children your walking talking and breathing.  Your not alone and your not the only person this has happened to.   Talk talk and talk don't hold it in.    

    Hope this helps some ask to be referred to a social worker and get advice most hospitals will have a team who works with the community's teams and get an additional level of support for the non medical side of things  

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