Getting 2 know U - Please Add Your Details

I was diagnoised with ph in 2007,after a really bad hospital experience where all my organs crashed and i was given 24hours to live,during this period we found out about the heart being enlarged and thats where my ph journey began with a visit to the cardiologist i was referred to the royal Hallamshire in Sheffield and see Dr Keighly and Charlie Elliott who are both fantastic.I am on bosentan and sildenfil but the breathing is not so good again at the moment ,so will see about highering the dosage of the sildenfil at my next appointment.I am also wheelchair bound as i have degenerative disease of the spine which i have an intrethical pump fitted which releases morphine daily to help with the pain , Im so glad we have this site as i know theres always someone there to help and answer my questions,thank you all for being there love Debbie xx

                                                                      

 

I am Stella, I am 50 and have two daughters Veronica (28) who has dyspraxia, dyslexia and petit mal epilepsy.  she has worked so hard all her life to keep up with everyone and even tho it took her longer she is a qualified teachers aid, she has attended university for 3 years and got an education degree, and has worked for the last few years with disabled children in a local speicalist school.  In September she will be attending Brunel University in Uxbridge to do her PGCS course to become a fully qualified teacher.  My other daughters' boyfriend will also be on the same course and they will be able to support each other.  My other daughter Catherine  (26) is a qualified Dental Nurse, its a job she loves and from the age of 6 that was what she planned to do.  She has just given me the best present and reason for living in the whole world - a granddaughter called Jenna Anne.  She is 9 months old and was born a month early as a dramatic conclusion to my daughter going into major organ failure due to pre-eclampsia.  She is still tiny for her age (she was 4 pound 19 ounces) and now fits comfy in age 3 - 6 months clothing.  Catherine and her Partner G live with me on a permanent basis as Catherine decided that no one else was going to look after her mum.  Both of my girls are a treasure and I am so lucky to have them.

I am divorce, my ex left when Catherine was 15 months old and I have never bothered to look for a substitue, i just couldnt be bothered.  So when Veronica started school I started at college, I did GCSE English (A) and Law (B)  and then A level Law (B) and then my tutor decided that I could do a law degree and so she nagged me silly for a whole year as she had become a social friend too.  I couldnt leave the area in the daytime because i would very often be called to the school for Veronica so I did my law degree as an external student with the London University, I failed many times for lots of reasons but eventually after 10 years I completed my law degree.  then i had to do a year at Ealing university doing a legal practice course to enable me to get a solicitors training contract before qualifiying as a solicitor.  Well things were getting harder and harder for me as my breathing was getting worse and worse and i was having chest infections like most people have sunday dinners.

Two weeks after my last exam at Ealing University my father passed away and my world literally crumbled.  I spent the last 6 years getting his estate sorted in the way that he and my mother wanted me to do and fighting my sister who tried every trick in the book to get one over my brother and myself as her aim was to take all.  she didnt succeed but the result was that i was getting more and more ill and praying that i would be able to see that job out before passing myself.  then last year my daughters and myself decided to nag the doctors again for a diagnosis for me, my oxygen level was a constant 75 and my GP just put it down to me having a 'naturally low oxygen level and that the problems were in my head'  Well i got the diagnosis of PPH in March and everything makes sense now about my health getting steadily worse and worse.  You all know the story better than i do on that. 

 

I loved study and as i was not sleeping much (3 hours in 24) i had plenty of time to study and look after my girls.  Not like now i need so much sleep these days.

 

I envy you with all your travelling

 

((((((((( love and hugs ))))))))))))))) stella xxxxxxxxxxxxxx

                                                                                                             Rita

 

Thought i'd better add something about myself even though i've been floating around the site for quite a few months now.

 

My name is Lynsey, i'm 33 and married to Joss (he's going to be 40 this year but shh don't tell anyone). We've been married for 7 years.

 

One of the things that we were hoping for was the "normal" 2.4 children, but now with PH that has been blown out of the water. So we have our 0.5 child in the form of a cat, and we make a pretty good team. I have a really close family and extended family with Step brother & Sister, so am really very lucky.

 

I have spent the last 7 years training to be a management accountant, and have decided to stay  part qualified as life was passing me by while my head was stuck in text books (decided this a couple of months before my PH diagnosis). I work for a Charity that re-houses and rehabilitates ex-offenders, as a Finance Manager.

 

I'm currently trying to find hobbies to fill my time since I stopped studying, so far have tried knitting, cross stitch, latch hooking, and baking. I have sewing, & Yukelele playing to master at the moment...

 

I was diagnosed with PH on 1st August 2009 so am coming up to my first anniversary. I'm on treprestinol, revatio, warfarin, digoxin & Spironolactone.

 

Take care All

 

Lynsey x