The Full Story

As I mentioned briefly, before, My Name is Russ.
I married my wife, Dora, on 12th February 2006. We are just about to celebrate our 4th Wedding Anniversary.
Without going into extreme detail, shortly after we were married my wife became ill.
Following many visits to doctors and hospitals, Dora was eventually diagnosed with Heart Failure! Dilated Cardiomyopathy, to be specific!
Within 4 weeks of our return form Honeymoon, Dora was in a Specialist Cardiac care ward of hospital.
Little did we know at the time, but it turned out that she had actually been quite close to death; such was the severity of her condition, prior to admission!

Dora remained in hospital for 2 months, during which time; we saw slow improvement, in her.
It was during this time that we first became aware of the condition known as “Heart Failure”

I had previous knowledge of general heart health matters (My mother had and recovered from a heart attack a few years previous to this episode); however, I was not fully aware of this condition, or how a person can come to be affected by it.

Full details of the condition can be found on the Cardiomyopathy Association website (links to the side of this blog).

In Dora’s case, we were told that the best diagnosis, we could be given, was that a”Virus” had attacked Dora’s heart. There were no signs to suggest that it could have been congenital, or hereditary.
It may have been a simple chest infection, perhaps something else? This is the one question that we have never had a decisive answer for!

We were informed that Dora’s heart had been severely impaired and was unlikely to recover.
Cue the beginning of a large and complex drug regime!

Once Dora had returned home, then began the routine of regular outpatient checks, with the Cardiac Rehabilitation clinic.
We attended hospital once every 4 – 6 weeks, over the next year. Plenty of checks, scans and drug changes, ensued.

Approximately 1 year later, Dora’s condition worsened once again, necessitating in another stay in hospital, this time for 6 weeks.
Again checks, scans and drug changes, aplenty.

After another year, Dora underwent surgery to have an ICD implanted.
This is an Implantable Cardio Defibrillator, essentially a Pacemaker that can deliver shocks directly to the heart if necessary.
The reason for this was to try and train the heart and allow the heart to recover.
Surgery was completed without issues and Dora recovered well.
For the next few months, in addition to the normal checks on the heart, this device was tested and provided information.

In Dora’s case, unfortunately the ICD did not provide any improvement to her condition.

Early in 2009, Dora was referred to the “Harefield Hospital”. This is a world renowned hospital, which specialises in Heart and Lung Transplant’s, related therapies and rehabilitations.
We went along to the Harefield for an appraisal, expecting to be told that Dora was not an extreme enough case to be considered for Transplant; but that we may have to expect it years down the line, if there is not sufficient improvement.
What we actually found out proved to be somewhat of a shock.

After all of the checks were completed, the entire medical team (perhaps 15 people) all crowded into Dora’s room, to give us the verdict –
Apparently Dora’s condition was TOO severe to be deemed appropriate for a Transplant!
As the heart had not been functioning properly, for so long, a build up of pressure within the lungs (Pulmonary Hypertension), had occurred. This made it impossible to complete Transplant surgery, as the donor heart would not be able to survive such high pressures!
The biggest shock was that Dora may only have between 1 and 3 years life expectancy, depending on the severity of the condition during that period! Throughout which time we should only expect a progressive deterioration of the condition!

The only alternative was pioneering surgery to implant a new form of artificial heart!
An LVAD (Left Ventricular Assist Device) is an internally implanted pump that is attached directly through the heart muscle at the left ventricle.
The pump is operated and controlled via a driveline which exits through the abdomen, to then connect to the controller unit.
The controller unit is powered by 2 batteries
The controller and batteries must be kept in a bag that must be worn at all times. This bag and contents weighs 3-4 Kg.
The plan being, to implant this pump as a “bridging” therapy to enable the pulmonary pressures to drop to an acceptable level, at which point Dora would be accepted onto the Transplant waiting list.
Within the next few weeks a date (13th August 2009) was confirmed (Yes, that was Friday the 13th) and Dora went in for surgery. This was full open heart surgery.

The surgery lasted approximately 6 hours and all went well!
Dora remained in Intensive Care for 2 weeks, moving onto High Dependency unit for another 4 weeks.
Immediately following surgery Dora was kept sedated for nearly 3 days.
The amount of machines, tube and wires, were really something to behold (but not in a pleasant way)

So after 6 weeks of Stressful and difficult recuperation, Dora was allowed to leave.
Many check ups and clinic appointments have been attended since and Dora’s general health and Strength have been slowly improving! She is not best pleased having to lug around the “bag of tricks”, but considering the alternatives, we both try to remain positive!

So, it’s now early February 2010 and it may soon be coming to the point where Transplant can be considered.

Obviously this carries risk due to need for additional surgery, but this should show a much better and longer term improvement to Dora’s health.

For the time being we keep attending the hospital, when required, waiting for the news that a Transplant can now be considered an option.
Oviously even when transplant can be considered, this only secures placement onto the Transplant waiting list. There is no guarantee that a donor heart will become available, within a certain period, or even at all!

So! That’s the back story!

The Harefield Hospital has been fantastic to us and the treatment there, has been second to none!
I hope that through this blog and its aims, I can repay them, in some small way.

In addition to contributing to the hospital, I have also chosen, some other related charities

The Cardiomyopathy Association
The British Heart Foundation

I also mentioned previously that my Mother had had a heart attack, some time prior to Dora’s illness.
As a result, Mum was able to offer Dora and I, insight and advice regarding her experiences with a heart problem. Luckily, following that heart attack, her heart recovered showing no signs of damage. But still there were many parallels between the 2 situations.

Unfortunately my Mother was diagnosed with Cancer of the Pancreas, at almost the same time I proposed to Dora.
I had been planning the proposal for many months and waiting only for the ring before popping the question. Mum’s bad news came a couple of months before I was ready!

I proposed in the October of 2005 and we were married in the February of 2006.
Quite quickly you might think, but it all slotted into place nicely! One reason being that we had been together for nearly 2 years; another that those dates were available and finally Mum’s condition meant we didn’t want a long engagement.
Happily Mum made it to the wedding and managed very well throughout, though it did tire her out at times! This was during one of her chemotherapy sessions, so she was not quite at her brightest, but somehow still managed to glow!

A month or so after the wedding we adjoin the story as told above.

So, Mum was an invaluable source of strength and comfort to us regarding Dora’s illness and I like to think that we reciprocated for her.
I don’t think that a single day went by without us talking about some subject, or other.
Sadly Mum lost her fight with Cancer on 5th March 2008

From her initial prognosis, the Doctors had told her that she may only have 6 months to live! In fact, she lasted for 2 years additionally to that!
She will be missed by many, not least by Dora and I.
In this respect I plan to contribute to the following cancer charities, in memory of Mum.

Cancer Research UK
Macmillan Cancer Support

Thank you for reading thus far!

I am only going into such detail, in order to give a reason for the charities I have chosen to benefit from these activities!

Sincerest Thanks!!

Russ