Desiree versus HOCM

Desiree is 30 years old and only found out that she had HOCM (Hypertrophic Obstructive Cardiomyopathy).

Hi I’m Desiree and this is my story………

I’m now 30 years of age and I have a son Ian who’s 9 and is the light of my life, a husband Dave who I think the world of . I was a normal happy go lucky girl that worked part-time for Burton Menswear. I worked part time and it was the first regular job I’d had since becoming a mum. I really loved it, it gave me independence and a bit of money for that extra treat a mum wants and the same for her son and husband. My job gave me a lot of confidence too, friends that I wouldn’t have had.

For years now I’ve been having problems with breathing and chest pain going backwards and forwards to the doctors. The first time I had a severe episode was at about the age of 16. Every time I was just getting passed off with inhalers for asthma to which I’d never had a test for, but, there you go! I was getting no better. This carried on for a period of about 7 years. Until last year when it had been manageable but I still had periods of discomfort with various symptoms ranging from blackouts to dizzy spells and breathlessness. This finally came to a head on the 13th April 2007 whilst on a weekend with friends to Birmingham for joint wedding anniversaries. We’d been out and about and yet again I had another do which involved getting out of breath, feeling dizzy, sick and the typical pins and needles that I’d always felt. This is when my nightmare began…….

That night I was up all night with various things and pains, and I couldn’t manage to do what a typical 29 year old should do. Anyway, we returned home that Sunday and I felt awful I had this horrible nasty cough I couldn’t get rid of no matter what I had or took. So, on the Monday I went to work but I felt bloody awful, I couldn’t stop coughing and I was struggling with my breathing but I kept popping the salbutamol inhaler like it was a bottle of water….. Still no better. I took the Tuesday off sick but felt guilty as we were short staffed so I went in on the Wednesday and Thursday still in the same state… By Thursday night my symptoms got worse, I was sat on my settee not a breath to be had. So I panicked and rang my husband at work, he was on nights so he rushed home and took me to our local hospital. I had this flock of doctors assessing me some were convinced I’d suffered a heart attack and one Dr. Sooh said “things didn’t add up because I was complaining of breathlessness, pains in my chest, numbness and neuralgia”. After being admitted to coronary care and I had the usual blood tests, chest x-rays, echocardiogram and ecg’s when the news was delivered……. I was diagnosed with hypertrophic obstructive cardiomyopathy. I was devastated. I took it hard and I only had a brief explanation about what it was and was given the usual leaflets, and condolences that you get but it didn’t help.

I was getting ready to learn to drive, we’d had a family holiday booked to Majorca, it would have been the first holiday abroad we’d a had as a family. My son was really looking forward to going on a plane. He was 8 at the time and had been through enough of his own with getting diagnosed with ADHD and aspergers syndrome. So I was looking forward to giving him the holiday more than anything. This all had to be cancelled; the learning to drive had to be stopped and I just was lost. Further tests I had included an angiogram which displayed I was severe and to not operate wasn’t an option so I was referred to the Northern General hospital in Sheffield to a Dr. Ever. D. Grech who has been my life saver. The tests he carried out said “I needed an alcohol septal ablation”. This is a non invasive procedure they perform on patients with my condition. It involves the use of ethanol in balloons that goes in through the main arteries with wires they feed from the groins of your legs. All you have for this is local anaesthetic to numb the area and morphine for the pain. They went in and took away a branch of the septal artery and dissolved a piece of heart muscle this enabled the blood flow to pass through better. I was found to have two murmurs one on the aortic and mitral valve and they were both regurgitating. The gradients on my valves was 200 at their worse point, they class up to 55 as severe. I wasn’t far off the pearly gates and I was told I was lucky to have got this far. Normally, with this condition you don’t have any symptoms and it’s only normally found upon post mortem! So, in the first weeks of November 2007 I was in the hospital being operated on by Dr. Grech and Dr. Al Muhammed. Two of sheffield’s premier heart surgeons. I had the ablation….

Roughly around September 2007 I’d started to drink a little more because sleep wasn’t happening and I spiralled into a habit of drinking around 10 bottles of wine a week and slipping into a depression I didn’t know I was in. It was just my way of dealing with it all. My family including my husband and nearest and dearest were struggling themselves and we’d had no counselling no offers of it or anything and I got worse; and it didn’t help the fact that I was told HOCM was genetic and I was petrified that I’d given it my son. I’m still waiting to find out if I have passed it onto my son. At Christmas time I became friends with a man online and we were just friends but it was a place to go that meant no cardiomyopathy and no problems. This man suffered from emphasema so I felt that he understood me and what I was about. I was starting to feel a bit better in my head and has started smiling again naturally. As time went on I became obsessed with my condition rather than meeting it head on and this friend was getting more and more close and I was telling him things that I wouldn’t normally tell anyone. As time went on I learned that the operation had not been a success and I was back to square one. I felt the operation had been a complete waste of time and I was devastated. The decision was made to repeat the alcohol septal ablation because if they didn’t then I would have get a lot worse and I wouldn’t have just managed with the medication.

A few months passed and we decided to book a holiday, a family holiday to pick us all up….. The thing was during this point the man that I’d befriended dropped a bomb shell on me…… He’d fallen for me and wanted me to be with him. At first I said no then repeated the no several times until he said he could no longer be my friend and I was slowly falling for him. Not in the way that you’d expect but as a friend if that’s possible. Shortly after returning from holiday I was again asked to go and be with him and at this point I’d had lots of thoughts of ending it all and this person made me happy. So the not so rational decision was to go. I left my son and everything behind, which isn’t something a mother would do in a rational state. I still feel guilty to this day for doing it but at least Ian’s got his mum back and my husband has got his wife back. In the Summer of 2008 for a period of about 6 weeks I left. I was happy for the first few weeks and I had got the escape I needed. I think the world of this friend and his son even to this day as he saved me from a fate that wasn’t pleasant. I am not proud of myself for what happened but we all do things that aren’t right all the time.

I returned home in the middle of August 2008 and that was when my life started to fall apart. I went to stay with mum and dad for a while, but as per normal it wasn’t en easy thing, my mum fell ill on the Monday night as I returned home in the early hours of Sunday morning. I should explain that my dad suffered a severe stroke 6 years ago and this had left him brain damaged so my parents weren’t as able as they could be to be there on tap for me but my mum has always been there for me as much as she could and is my best friend in the whole world. She’s been my rock many many times and I love her unconditionally like a daughter should. She’s an amazing woman. My mum ended up being rushed into hospital and my dad ended up in the nursing home as there was no-one to look after him. That night, I was sat outside Accident and Emergency after spending hours seeing my mum at deaths door and sat on a wet bench outside the hospital and cried and cried and cried. I’d rung my husband to come and pick me up and to take me to my sisters but when he got to the hospital and saw the state I was in he took me home and that’s where I stayed and I’m still there today. We’ve sorted through a lot of things. I sought help in the way of counselling, got myself on the right medication and I’m mentally getting a lot better.

On November 22nd I had the ablation again and this time the decision was made to remove a complete branch of the septal artery as it was really the only way things were going to improve. I was prepared and ready this time for the operation. This was much better and I felt more positive. The operation at this moment in time seems to have been a success but we’ll see what transpires on the next echo I have. I’m due to see my surgeon Dr. Grech on the 8th January and we’ll see then what he thinks.

Throughout the whole of this I’ve had something with me that’s been precious and something I hope I will never lose and that’s a spirit, my wings of desire. This has been my tower of strength and for this I want to thank that spirit for all it’s offered me. Believe me when I say that we all have a soulmate in whatever form and mine is my wings of desire. I love my spirit it’s been the best spirit that’s ever been with me…

Good luck to others suffering and best wishes to their families. Seek help is all I can say no matter how proud you are. Anyone that’s suffering with any of the usual “pains and symptoms” please seek medical advice even if you waste the doctors time. Better to waste time than a life for ignorance!

This is my full condition,
Severe hypertrophic obstructive cardiomyopathy,
Severe mitral and aortic murmurs,
Severe mitral and aortic regurtitation,
Cyanosis

Here are some links for descriptions of what I’ve mentioned in my story. Sorry if it’s moved you but that’s what real stories are about.

Hypertrophic Obstructive Cardiomyopathy
Cyanosis
Alcohol Septal Ablation
Angiography