Getting 2 know U - Please Add Your Details

Hi all

I'm Kaye, partner to Scott and mum to Cassie 16, Kaylee 6 and Max 3.  Kaylee was diagnosed 3 weeks before she was 1. After a string of hospital appointments throughout the year, my partner sat in the room and said to the doctor that we were not leaving until they found out what was wrong. A simple oxygen saturation test was done and the alarm bells rang. We were not allowed home and transfered to the Brompton the next day. Kaylee was diagnosed with a Complete AVSD and PH. We were told that she may well not make it to 5 and that there was no medication at that time.

Devastated, we returned home I searched the net and Prof Haworth and the PHA came up, I was put intouch with Steve, Dad of Jack, had a long chat, then armed with info we went back to the Brompton and asked for a referal.

We were seen by Prof Haworth, she is fantastic. She was just waiting to see how a slightly older child done on Bosentan then Kaylee was next. So at 1 and a half Kaylee began Bosentan then a while later Sildenifill. Kaylee still remains on both drugs, and is continuing to do well.

Kaylee had a gastrostomy fitted last year after a long period of low weight gain so no more battles with food, we just plug her in at night and fill her up. Kaylee has coped well with it, although it does still ache if knocked or bumps into things.

Kaylee loves school, and goes to Rainbows and Ballet. She has also passed her first Ballet exam. She does every thing at her pace and everyone is very accepting of this..

Take care all

 

Hi

I am Alec, 61 yrs old, married to Christine for last 40 years. Have daughter and son and 3 grand-daughters, 15,13 and 10. Live in Penrith in heart of Lake District.  Was dx with CTEPH in June 2006 although symptoms started in Dec 2002 had PE op at Papworth in Dec 2006 and rec. well at moment. Like a few others, went through every other ailment before being dx and think have tried just about every inhaler there is. Daughter will be big 4.0. this year and son - who has MS is 38.

Hi Pauline

 The photos of Nicky are wonderful. It would be lovely for everyone to posts their photos here..... SO, i thought you may like to post a full step by step guide on how we do this! As i for one don't have a clue!  I have tried and failed many times Please..

 Take care Tracie

Hi, my name is Lynn, I am 33 and I live in Fife with my partner and my step-daughter whose 8.

I was diagnosed in May 2005, I will always remember that it was a Thursday, we nick named it bad news day.

My treatment from Glasgow has been superb.  I have a hickman line fitted and I am also on Sildenafil 3 times a day.  Don't get me wrong, at first it was a shock to the system but I am still overwhelmed about what treatments etc can happen nowadays.

My mum and dad have been wonderful, they only stay round the corner and are always checking up on me.  When I was first unwell in Dec 2004, nobody knew what it was.  When they were told they cancelled their cruise.  I felt so guilty but at the same time very grateful. 

I also have an older brother who is in the police and my sister in law also works full time.  They have 2 brilliant daughters, who are 9 and 5.  Eventhough they have busy lives they still made time to come to Glasgow to visit.

My whole family have been really caring and its great to "talk" to other people with the same condition.

I am also back at work full time which is great.  I work in a school and my employers have been great.

Hope I haven't bored you all.

Take care

Lynn x

Hi Everybody

Thanks to Pauline for starting this chat. When I read emails from people like Anna and Jack's Dad Steve I feel like I'm hearing from famous stars because I've read their stories in PHA publications, or, as in Anna's case, seen her video here on the site. Isn't it weird the way we feel we've got to know someone just from reading about their lives? Hope you 'stars' feel like your lives are as glamorous as the likes of Angelina Jolie & Brad Pitt because your names are up in lights in the PH world? But sadly I doubt it..... Having perfect health would make you feel richer than these people, though, I suppose.

However, I'm writing predominantly to Anna here to wish you the very best of luck, because it sounds from your emails that not only are you going on holiday to Jersey next month, but you're to have a double lung transplant as well???!!!!  Now THAT's a busy life! I hope both things go wonderfully well (one might be a tad more fun than the other??!), and I look forward to reading about your progress once you're well enough to write again. GOOD LUCK!

Also, does anyone know PAULA who's story featured in the last EmPHAsis? I think about her often and hope her health's 'on the better side'.

Hope everybody's enjoying a bank holiday weekend of feeling well and happy? Take care.

Best regards

Clare

Hi,

My name is Liz Cullen. I have just turned 28. I am a police officer and live in Northern Ireland.

I started taking the pill in May 2006 to help combat severe period pain. It really helped me with this complaint. Unfortunatly after a few months my breathing started to be affected. My doctor just thought it was a worsening of my asthma and prescribed me stronger inhalers. I began to notice pain in my shoulders and just assumed I was sleeping funny so i tried adjusting my pillows and eventually ended up sleeping sideways on my bed. This seemed to work as the pain in my shoulders ceased.

In early January 2007 I was waiting for a friebnd to collect me when I suddenely got palpatations and could not breathe properly. I assumed I was having an asthma attack and so just took my inhalers and went home to ly on the couch. I started to get chest pains and went to my new doctor the next day who drove me to hospital haveing told me "I think you have a blod clot in your lung".

All I could think off was crap, I have no toothbrush or change of clothes with me 

I was then rushed to Belfast City Hospital where the clot dissolving drugs failed to work on me and eventually six months down the line I was referred to Papworth where I had some tests and hopefully will be getting a pulmonary endarterectomy in the future.

 

Hey Hey.My names Craig Murray.Am 15 and sufffer from PH. I currently go to school at rothesay academy.Will be up in gosh next month.(first week of my summer holidays)and have just finished my exams.

 

Also join this band to support people with PH

http://www.bebo.com/badge/2496666414"><img

Hi everbody

I am gary im 35 and live in scarborough with my girlfriend michelle i was diagnosed with CTEPH (pulmonary hypertension) in may 2006 i went to papworth hospital and had an operation(pulmonary endarterectomy on the 31-jan-2007

Loz, now I know why you want to pickle a traffic warden: someone did it to you !

In response to the many requests from the users of this message-board, I offer the following details of who, how and, most important, why am I
Richard Mundy.

I am 62 years old and married for over 30 years to Pam, with a 13 year-old son, Sam.

Way back in 1992 Pam became concerned that during the night I would stop breathing; she would give me a poke in the ribs and I'd start up again.  Obviously, your partner can only make this observation when they are awake: we had no idea what was wrong and subsequently had an appointment at the local hospital, the Princess Royal Hospital in Telford, Shropshire.

I did a lung-function test, a polysomnography test at home and had an ECG. the result of all these was that I was diagnosed as having a leaky mitral-valve.  I was not given any other information, and that was the extent of the diagnosis.  The notes relating to this diagnosis are now 'lost'.  (Does this not strike a chord with anyone?)

I was not prescribed any medication as the leaky valve was not serious.

Since 1990 my wife and I have run a hospitality business securing contracts with a number of prestigious companies, including the BBC and film companies working for TV.  We were very busy, so I simply could not afford to be ill.

Fast forward to Spring 1997 and I'm sitting in my car, on a client's car-park after a very fraught meeting.  I broke into a sweat, my mouth was dry and I could not move.  That evening I went to the GP and was referred to a consultant for a private appointment.

I was given a very thorough examination and prescribed perindopril and frusemide, which I still take today. The consultant agreed there was a problem with the mitral-valve, but not anything serious.

As the years went on I began to feel more and more lethargic and tired.  I had a pain in my chest from time to time, but around lunch-time all I wanted to do was go to sleep.  And, of course, I did go to sleep: waiting for the traffic-lights to change was a favourite place.  There and on the M6: thank God, I didn't have a crash, or cause one, but there is no future in driving in that state.

I saw the heart consultant again, and this time I emphasised how ill I felt, and how could I feel this way when the only problem was a slightly leaky valve?  There must be something else?

I was referred to a chest man. again I was subjected to the lung-function tests, the polysomnography tests, etc.  To cut a long story short, the chest consultant came up with his diagnosis.

So, in August 2005, 13 years after the first intimation that there was something wrong I had the diagnosis: Obstructive Sleep Apnoea and Pulmonary Hypertension.  I had never heard of Pulmonary Hypertension before.

I spent a month in the PRH before going to the Non-Invasive Ventilation Unit under Dr.Martin Allen at the University Hospital of North Staffordshire.

This was both the most inspirational place and the saddest I have ever seen. Here were people being brought back to life and others ending their days without distress in a calm and stress-free environment.

I was discharged from there with a robust BREAS ventilator, the same thing, I was told, that Christopher Reeves had, though I wear a full-face mask rather than have a tracheaotomy.  This effectively breathes in and out for me, at considerable pressure, with supplementary oxygen from a concentrator and I use it every night.

Although I am diagnosed PH, I have never had the 'gold standard' tests done: the 6-minute walk and RHC.  The consultant has referred my case to the Hallamshire, and I am presently waiting for a date.

PH derives from a variety of sources and ailments, and if you believe what you read on the numerous so-called 'medical' web-sites, there is little alternative but to await the grim reaper's call. 

However, we know from PHA members posts there is a wonderful range of medication for the disease which  offers optimism and genuine hope for the future. 

PH may not be curable, but it is not necessarily terminal, given the drugs and equipment to manage the disease and achieve a reasonable quality of life.