Do they ALL have PH?

Admin side of ph

We get very many requests to join our amazing website for ph.  However it shocks me as to just how many people are requesting to join.  Do they all have ph I have to ask myself.  If so this saddens me for I know how rare this disease is.  Is it growing or are doctors more aware and getting diagnosed sooner.  What sickens me most is when I look at the pages of the people requesting to join and I see the oh so obvious signs of the disease on the little faces of their children  oxygen being inhaled through their tiny little noses 24/7.  Quite a lot of the people requesting to join however are wanting to do "research" on us from the medical field.   We quite rightly refuse them admittance.  This group is for people to talk between themselves about their worries, or to help each other.  We have enough research done at our specialist hospitals, we need peace from it on here.  It is an amazing group full of amazing people all wishing to help and encourage one another, I am proud to be part of such a group.

Cancer breakthrough

I feel most of us will have seen the breakthrough on the cancer side of medicines re blood cancers.  using T-cell therapy' .  The  scientists are claiming extraordinary success with engineering cells to target specific types of blood cancer in their first clinical trials.  In one study 94% of participants with acute lymphoblastic leukaemia saw symptoms vanish COMPLETELY and patients with other blood cancers had response rates greater than 80% and more than half experienced complete remission.

How truly astounding is this, in particular as I saw one baby with the disease given just five months to live.  Her brave parents gave permission for her to trial this drug and she is now cancer free.  We don't know if it will return in the future, far to early to say but oh my word...... such great news and it got me thinking, ....... when will this be us.  When will we open our papers of read on the news bulletins that at last the cure for this very rare disease pulmonary hypertension has the cure.  Who knows, maybe even now our scientists researching could be looking at this T-cell therapy and adapt if for us.  It is often a cure for one illness that leads to a cure for another.  Ours is on the way,  I truly  believe this,

How far have we come  in medical sciences today to be able to eradicate such terrible diseases  Yes I know there is still much work to go on with before they can say this is the cure for blood cancers but oh for he families taking part in such trials, the joy and jubilation as they see their children return to normal lives, or even begin to have normal lives as some had never known any other.  I am so pleased for them and look forward to the day when our disease too gets such an extraordinary result as this so we too can be ph free.

Kids!!!!!

Our lazy Saturday afternoon was spent taking our 87 years old neighbour to look at new cars.  Very exhausting as we had to keep shouting to be heard and very very tiring.  On our return home I immediately opened my Facebook to read a frantic message from my son asking him to get in touch, he was in Amsterdam  My heart sank as any parents would when we see such messages so of course I responded immediately.  They had missed their plane!!!!!!  Oh kids, when will they learn to leave plenty of time to get through check out etc.  The train they had hoped to catch had missed, this should have been taken into consideration and they should have given themselves more time to allow for such contingencies.  They had tried without fail to get return tickets back to the UK but the airline that went from Amsterdam to Leeds Bradford was closed.  On a Saturday afternoon this surprised me.  They tried to buy them online but at the very end when they pressed pay the screen threw then out.  They had been at the airport for five hours trying to get the tickets to return home. With  hardly any battery they did the only thing left to them, messaged their parents!  We tried well Colin did from our end and we too were booted out at the last minute,   Anna's mom tried and she too was booted out but managed to get them tickets for the following day.

Result, they had to stay another night in a hotel and managed to get tickets the following day as I assume the booking office computer was sorted out and they could collect their tickets,   We then had to go over to collect them from Manchester and take them back to Leeds as the cost of another hotel, food and travel had used the cash they had spare.

We were telling one  of our friends this and he was astounded that our son, aged 35 asked or needed our assistance.  Of  course his children would never need assistance, he had brought them up to be so self efficient!  Inside I was blazing as I knew this to be so untrue.  I knew of many occasions when he had helped out his children as indeed we all help our children, but I bit my tongue as this friend who I love dearly is  I must say one who ALWAYS thinks everything he says or does is the right way.   It is a case of do what I say, not what I do with him. I made it to the car with my tongue almost bitten through so as to contain the so many words I could have said to him.  Colin was quite proud of me as he knew how cross I was. If you are the perfect parent with the most perfect children maybe, just  maybe you have the right to criticise others but until then SHUT YOUR MOUTH UP.  It hurts to hear my son being looked on as some sort of wimp when he needed our help.  If either of his children  had been in such a position, phone charge running out after trying for five hours to get tickets home  he would have helped in any way too.  Sometimes circumstances are stacked against them when they are abroad, as in his instance.  We could not help them get home, we did out best.  Had the ticket office not been down they would have sorted it themselves

 My son left home at 18.  He kept himself and never asked for help, even when he was in real need.  He once went for eighteen months with no heat at all, he was too proud to ask for help. He is a proud young man, he wouldn't even go for social security when he was made redundant,  He didn't come home to live rent and board free, he sorted it.  He never asks for help.  Though we may have given it through our own choice over the years it was never asked for at all.   I am proud of my two children.  I try never to criticise others peoples children, it is nothing to do with  me.  I would hope that one day our friend learns to do the same.

Yet more medicines but not the kind to cure us of ph.

I  have had a urinary tract infection for a few weeks now, I take the meds and it goes.  When the course is finished after a few days back comes the infection.  i hate it  My bedside table is now littered with yet another medicine to take on top of he mountain we need for our ph.  This time a sample has been sent off to the lab to identify just which strain of uti  I have and hopefully get the correct antibiotic.  I  hate taking them though as I know we are all getting used to them and that bugs will become resistant  and where will we all be then.  We have come  so far with our medicines and now over abuse will be sending us back to the dark ages if we are not careful.  As I have suffered kidney problems from the age of 8 I know that for me to try the over the counter medicines do not work.  My infections travel up to my kidneys and I have spent many many days in hospitals whilst my then kidney infections were sorted.

Thinking of this then I was watching a programme on the tv where it said they are looking back into the old cures for things.  Science maybe has pushed us too far the other way.  One "cure" they found and I can't remember what it was for now (maybe asthma?} was just simple everyday ingredients but it appeared to work on animals.  In view of this they were beginning to open up books on medicines from many many years ago.  I know we have many advances in science now, indeed most of us with ph wouldn't be here now were we to live in those times, ph hadn't even been recognised, but I do believe there may be some value into looking into some of these old remedies.  Maybe some of you reading this used the old remedies for some things and have seen cures.  Would be interesting to read any of these.

So there you have it, quite a boring old week in our house apart from a lovely meal at our friends house.  Always lovely to be with them and we have lots to discuss and many laughs along the way.  Our turn to host next time so to that end I made yesterday a plum and apple tart for dessert, now sitting in our freezer waiting for the date of our evening.

Photo book arrived!  Colin constantly takes pictures of Izzy as she is growing up and every two years puts a lot of these onto 100 pages of photoshop books.  This means over four hundred photos in all.  They have arrived, our next episode in her life, age two to now.  We ordered three, one for us, one for her mommy and one for her other set of grandparents as they rarely get to see her.  We shall go over with Izzy on Saturday and give them the book, they will love it.

Friday I go to my specialist hospital to discuss where I go from here, another trial or the hickman line, will keep you posted.  Cakes and flap jacks made ready for the staff so roll on Friday.

Go well all of you and thank you for reading this blog.

Carole xxx