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Hi LuLu,

The reason the diagnosis took so long to reach was partly down to my previous medical history.

When I was in primary school I had endless days off with asthma, though I had grown out of it by the time I was thirteen.  However, at age 20 I was diagnosed with pulmonary tubercular pericarditis and spent months in hospital. 

The pericardium is the lining of your heart; it's like a string-bag holding your heart muscles together, though in my case the pericardium had calcified so it was more like a jaffa orange skin. I could hardly breathe, so when it was removed I felt much better. This was done way back in 1965 at the Queen Elizabeth Hospital in Birmingham shortly after 'open-heart surgery' had been introduced but before transplants had been thought of.

With the protection of the pericardium removed, the operation resulted in me gaining an enlarged heart, and the leaky valve developed from there.

It was perfectly understandable for the medical people 1992 to base the results of the lung-function tests , etc. on this earlier known condition.  They consistently failed to dig deeper.

From the early 1990's I had no end of chest X-rays, but it was not until I had a scan in August 2005 that the true source of the problem was revealed. The scan did not reveal the pressure in the right side of the heart, but it did very clearly show what a state my lungs were in!

Diagnosis was also delayed through poorly-maintained hospital  equipment: the first polysomnography test was done with old equipment that was impossible to fit properly: the result was inconclusive.  The test in early 2005 was with new equipment which had hardly been used.  The result of this revealed I 'woke-up' over 200 times every night!  I certainly had Sleep Apnoea.

To answer your question, then, LuLu, a combination of putting too much emphasis on an old, known condition and poorly maintained hospital diagnostic equipment.

We have to acknowledge the professionalism of medical staff these days, coupled with the advances in diagnostic equipment, but at the same time recognise they are only human.  So if the answer to a problem is staring you in the face, there seems little point in considering there could be any other possible cause.



I'll be thinking of you when I put my face-mask on tonight! Make sure it's on good and tight, now, so the air doesn't escape.. . . .

Hi Gary

I think it is all written with PH information on people's experiences of having this awful illness.

I find it very interesting reading other peoples experiences that they have. I think you'll find that they have al ready introduced themselves earlier.

We all have similar conditions but a little different treatment and medication.

Anyway, that is my opinion.

Regards Lu LU

Hi

I'm Brenda and I am 59.  I am a widow.  I have 2 boys aged 35 and 33 and a daughter aged 27 and 4 beautiful grandchildren.  I also have a cat called Casper. 

I was diagnosed with Raynauds when I was 17 - I had also learnt how to smoke at that time as it was the 'in' thing to do - my mum said this and not wearing a vest was the cause!!  I had a sympathectomy operation in 1970 but afew years later was told my sympathetic nerve was still intact, when I wanted to know what had happened all doors seemed to close and I still don't know.

In 1980 my daughter was born and I was diagnosed with Crest and put under a specialist at my local hospital.  I felt fine and never had a day off work with Crest.  The only problems I had were ulceration of my fingers and calcium deposits under my skin that I could see.

My husband died from a heart attack in 2001 - he never had anything wrong with him - I felt as if my world had ended.  He left us with a life time of happy memories that helped us all try to cope. 

I started having breathing problems around 1998 but thought nothing of it - I mentioned it to my specialist and he didn't seem to think it was anything to worry about.  In 2003 I was having breathing problems alot and also some chest pain - I was told it was asthma and angina and given inhalers and tablets - I was told the right side of my heart was swollen but nothing to worry about.

In October 2003 I had chest pain and was taken to hospital for an angiogram and was diagnosed as having PH - I had never heard of it and thought thank goodness for that - little did I know.  I was transfered to a specialist hospital in Newcastle where I have been really looked after.  Initially I found it hard not to beable to do the things I took for granted.  I have had alot of problems with my care and social services - but that is another on going stressful issue.

I feel I have coped OK with PH but have had that much on going stress from the local social service and care providers since initially needing help - it's unbelievable.  I have a great family and wonderful friends who have been very supportive and are there for me and put up with me when I am low.

PHA AS GIVEN ME SO MUCH HELP AND SUPPORT - I DON'T KNOW HOW I WOULD HAVE COPED WITHOUT  YOU ALL.

 

Hey,

I'm Gillian and I'm 25. I was diagnosed with an Atrial Septal Defect and Pulmonary Hypertension (secondary to the heart condition) about 2.5 - 3 years ago.   I found out about the PHA last weekend when I attended an annual patient day in a hotel in Glasgow.

Last year I suffered a brain abscess which had to be surgically drained - luckily I have had the all clear on that.  

I have been very fortunate in that the medication I am on is working very very well and I am able to work full time.  I am a very positive person who takes every day as it comes and always thinks optimistically.

x

 

 

Hi and welcome to this gang, Valerie 

I am Wendy and have been looking after people with PH for over 10 years now, the last 7 1/2 have been as a PH clinical nurse specialist. I feel very honoured to work with such a great group of people and learn new things every day as PH is one of the fastest developing fields in medicine.

Hi Wendy.  So you've come out of the closet.....  Welcome!

Hi Miriam

Hi guys,

Hi my  name is Alan, I dont quite know what to say. I am 38 years old with 2 brothers aged 31 and 18. Big differences!! I live in Aberdeen but originally come from Croydon, Surrey, where the rest of my family still reside. My dad has PHA and is not good. I honestly do not know if I will ever see him alive again. I just want him to know that  I love him very much. Please pray for him. His name is Peter. My mums name is Joyce. Please pray for her to be strong.