Getting 2 know U - Please Add Your Details

I'm Lawrence, but usually get called Loz, from Leicester and am 33. One little brother who is a policeman and my dad who isn't a policeman  

I'm a support worker in a hostel, working with medium to very high risk ex-offenders, plus the odd bank shift in the local A+E and some rope-access stuff (but the latter 2 are on hold, for obvious reasons, at the mo).

I joined this site after finding the link on the Papworth site, 3 days after being diagnosed with IPAH/FPAH and it's helped immensely. At least 9 relatives have died (going back 3 generations), directly or its been a contributing factor, from PH or CTEPH.

I've just had the date for my RHC at The Hallamshire brought forward so am walking on air at the moment

Great idea!!

I am Jo mum to Declan 14 who has ph. I also have Matt 12, Ellie 11, Ben 6 and Tom 2. I am married to Steve. We live in a tiny village in North Cornwall and we see Dr Hayes at Bristol.

Declan was a borderline 24 weeker(23 weeks by dates) and had lots of problems along the way. He is on 2L oxygen 12 hours a day but seems to be coping ok up to 3 months back we were always told he had Asthma even though he was always blue etc.

Life is great apart from school but life is too short to worry about that. We are off to the family weekend next week and we are all looking forward to meeting other familes as we seem an unique breed in Cornwall

I'm Fran and post fairly regularly!  I am married to Andy, and we have Robbie 11, and two other sons, aged 9 and 6.  Robbie has CAVSD and severe PH. He was diagnosed at 16 months and given 12 months max before transplant would be necessary.  10 years on transplant is rarely mentioned at our six-monthly clinics at GOSH, and although we have certainly had some ups and downs, Robbie does most things a normal 11 year old would do... except a lot of running about, and will transfer to our local secondary school (after a great deal of hard organisation!) in September.  He lets little get in his way - helped I am sure by 11 hours a day of 02 - especially not his two brothers!!

The PHA was a saviour for us - I discovered it whilst looking for PH info when it was still quite a new baby, in about 2002, and was so relieved (if that is the right word) to find that we were not alone - that there were other people out there going through something like we were.  It is amazing to see how the PHA UK has grown and dynamically progressed in these few years.  Reading stories like Sue's particularly gives us hope. 

We look forward to catching up with old friends and making new ones at the family weekend.

Hiya Im Tracey,

I live in Ayrshire Scotland & have 3 daughters ages (almost (18), 13 & 10, live with my husband Bob.

Almost 6 years ago my middle child was diagnosed with PPH she was in right heart failure and Dr's gave us 2 weeks with her! (How wrong they were Thankfully). She attends mainstream secondary school although her care plan has taken very long time to get sorted but for now its working.  Stacey's under the fantastic care of GOSH and she is seen by the every 8 months either via medilink or they are up in Glasgow, inbetween their visits she see's Gardiologist at Glasgow just to keep an eye on her.  She takes Aspirin 75mg, 20mg Nifedipine, 2 liters 02 overnight for the PH and Loratadine for the hayfever.  She does everything even tries to run but she by her admission is rubbish at it but most of the time she takes it all well.  My main concern with her is her unbelieveable fear of needles we have tried all kinds of help to no avail.

This is a good idea well done Pauline

REGARDS FROM

Tracey

Hi ya

I'm Debbie, 36 yr ols single parent to 19month old Charlie who has been dx with asd and ph. I didn't think I would be able to have children so every day with Charlie is a blessing, we have had some scary times in the past 18months but he is doing much better, on o2 24hrs a day at present but am hoping to go back to overnight when he has his clinic app in a cpl of weeks.

I had to give up work middle of last year to look after Charlie full time as he is also developmentally delayed and am in the process of selling our home as its hard paying a mortgage on benefits, but each time Charlie smiles, I know its all worth it.

The site has been a great support and help to me in the past, and this is a great idea Pauline, well done.

Debbie x

Great idea Pauline.  Hope it can stay on page 1 so that we can refer to it in the future & so that new people can keep adding to it.

I'm ratty, batty Miriam  and I'm 59 and hate it.  Would love to live my life again!  I have two kids, 34 & 31 and no grandchildren. Yet. They're working on it....  I live in London but am in the process of moving (financial reasons) and have no idea where to yet.  In the meantime floating between the kids.  After the flat sale is finalised and debts paid, maybe I'll have enough to buy a garage!

I was diagnosed with asthma 27 years ago.  No tests.  Just told it's asthma and through the years, from doctor to doctor, the dx just continued.  4 yrs ago I got much worse & doctors kept saying "it's your asthma".  I didn't think so, nor by this time did I think I had asthma!  Took 3 years & 9 doctors for a PH dx & finding out that I probably never had asthma.

The PHA and Hammersmith have really made a huge difference to my life.  The support and understanding are wonderful & it's great to finally be with doctors and people who know what I'm talking about. 

From feeling that I was going to drop dead any minute, even the slightest effort was making me breathless, I'm now living a pretty normal life except that walking distances, uphill and stairs are still problematic.  I suffer from fatigue big time.  Am on Sildenafil and diuretics and since being treated by the Hammersmith team, my prognosis has improved.  Three cheers for them and the PHA.

Thanks to everyone who has added to this message.  I have really enjoyed getting to know you better.  Hope more people will add their comments too.

Pauline

Hi I am Jane, I live in Reading but try to go out to Spain as much as I can.  I am 50 in August and far from being worried about it I am just grateful to have got this far.  I have 2 children one boy, one girl and 2 stepsons.  We all get on fine.  I have had SLE (lupus) for over 25 years and was diagnosed with PH 1 year ago but had been suffering for a while with breathing probs, I too was diagnosed with Asthma.  I am under the Royal Free in Londondon for my PH and St Thomas's for my Lupus.  I have to go for another Right Hand Heart Catheter in July and as I am also another Needlephobic I am scared stiff.

Lovely to hear all about each of you and thanks for being my lifeline, only those people and their families who have PH around them really understand how we feel.

Cheers

Jane

Hi everyone,

My name is Steve and many of you know about my son Jack who had PH and went on to have a double lung transplant in June 2005.

Jack was diagnosed with PPH in early 2001 at 12 months of age and went onto a Hickman line two months later. Initially we were told by a paediatric cardiology consultant that there was nothing that could be done and to go and "enjoy" the couple of weeks or a month that he had left.

We were utterly devastated but after a couple of very miserable days I looked on the web and very easily found the PHA-UK and found all the latest correct and up to date information regarding PH. To cut a long story short I made it my business to get Jack seen by Professor Haworth at GOSH and so our journey began ........ the paediatric cardiology consultant was, I am pleased to say, very swiftly "re-educated"

Due to my keen interest in the PHA-UK and the work being carried out I was asked to become a Trustee. My driving force is the same today as it was then ..... I don't want any family or patient to go through what we were initially told.

Jack did well on the Flolan but lost all interest in food so had to have a gastrostomy which, had I known how easy and simple it was, I would have asked for far earlier. He continued to improve and went on to start nursery and later infant school after getting a non-teaching assistant arranged. This wasn't because Jack needed any help it was just to make sure the other children didn't inadvertently mess around with his backpack. And the girlfriends he made, I wish I had been so lucky !!!!!

Jack later had Bosentan added to his treatment regime, went through half a dozen or so Hickman lines and eventually had his transplant operation. Nothing in life is simple and we had our fair share of ups and downs including the birth of our twin boys Adam and Joe and a marriage break up.

All in all I consider myself to be lucky in the way things have turned out and I have met some fantastic people through my work with the Association who are truly inspirational.

Today I help in many areas of running the Association with my priorities being more towards our fundraising activities. This is a really important area amongst the many others and it allows us to provide the expanding service that we offer to all our members.    

I look forward to meeting many of you at the forthcoming Family Weekend and later in the year at our Annual Conference and if anyone wants a chat I can always be reached via the PHA-UK Helpline.

Steve Waller

Hi everybody,

my name is Tonja. I am 37 years old and was diagnosed with PPH in 2003. At the time my husband (then boyfriend) lived in Australia and I did a lot of long distance flying which was probably the trigger to my PPH. I spent Easter 2003 in Sydney and when I got back to Frankfurt I had huge problems breathing - I was getting to a point when just crossing a normal road was a problem because I had to stop to catch my breath in the middle. Because I was deteriorating so quickly I was transferred to a university hospital almost straight away and was dx with PPH within 2 months. I am on diuretics, sildenafil, a calcium channel blocker and marcumar (blood thinner) and I am feeling fine - I get breathless when walking hills or climbing stairs but otherwise I feel quite well. I am German and I live in Germany and get treated at the university hospital/specialist centre in a place called Giessen. I lived in London for 7 years and my husband is South African which is probably one of the reasons why I checked out english-speaking PH-sites...I find this site very helpful and comforting too...

I think it was a great idea to start this thread, Pauline!

Tonja