ANGRY, ANGRY, ANGRY

DCA Trial

This was the first trial I went on.  I read about it on google when i was so very poorly and spent most of my time in bed.  I was on the hickman line and we all believed death was knocking at my door.  I saw a research facility in Atlanta were going to trial a drug already in use but now with the hope of a cure for us.  Indeed this DCA did cure rats of pah.  I knew I was not in a position to trial it, I barely knew anything about ph at all and had no clue how to get onto the trialling part anyway.  Like a bug on an apple that worms its way into the fruit so did this idea worm its way into my brain.   How could I begin to trial, who would I speak to.  It would be a year before I found my way into the trial and research programmes.  A year it took to get off the line and onto oral medication.  Then it took six months to prove stability in my pah.

Here is a link outlining in depth findings of DCA trial results: - 

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0ahUKEwi7l5a1j5PXAhUNb1AKHb9rDdgQFggoMAA&url=https%3A%2F%2Fmedicalxpress.com%2Fnews%2F2017-10-mitochondria-pulmonary-hypertension.html&usg=AOvVaw2xgycuvR3dvYe4bYUH91He

A throw away remark to my specialist about how I would have loved to trial DCA led me to begin my journey of trialling medicines for pah.  My specialist spoke to Martin Wilkins at the Imperial College and asked if I could join in the study.  I was thrilled to be accepted as there were only 20 worldwide that participated in this particular one.  At the end of the trial, Martin said he would have paid money out of his own pocket for all the help  my blood was doing in research labs worldwide to find a cure for pah.  Yes there were complications for me as I was given the higher dose, I developed neuropathy really badly and very shaky hands but I still wanted to continue when these side effects hit me.  My own specialist however took me off the trial so I quickly got in touch with Martin and begged him to ask my specialists to let me continue.  The result was that I did, though on a lower dose.  Though  I now take gabaphentin as a result of this trial I am still pleased I did it.  

The joy Colin and I had when we were sat in my specialists office, talking about denervation, and the email came up that informed David Kiely that DCA has proven to be another tablet to add onto the ones we already have in the world of ph.  The three of us were thrilled and though I wrote about it in my blog I said I could not tell you the name of the drug then as it was not my place to say.  The jubilation then when I read the posts about DCA and its proven benefits to us with pah were so lovely.

It is no secret then that since then my life has been all about trialling, one new drug follows another in my world.  I have my own trialling passport as it would be easy to forget which one we have been on!   

In view of this I feel so hurt and ANGRY when I read posts that say I am forever "banging on about a cure" or that the cure will not be here for a long time yet as there is not enough research being done. I then click the like button to see the ones who actually agree.  All these people are on meds that were TRIALLED and RESEARCHED for PAH.  If I, and indeed all those that trial for pah were to believe that we would stop trialling.  Why put our bodies through so much when the cure is so far away in the future.  Well let me tell you if we all believed this, if we all took away our bodies and said no then research would flatline.  For every drug keeping us alive today people have been happy to trial.  So to the ones sitting there in their chairs spouting this I have to say be thankful for the ones that trialled the medicines you pump into your bodies today.  Without their belief and the belief of the researchers you would not be having that medicine, yes the very ones that have kept you alive.  It is a good job they did not all take their bat and ball home and think "well they are so far away from a cure why would we put our bodies into research."  Indeed some of the medicines today came about in the belief that it would be the cure.  Further testings showed that though it wasn't it did actually help our pah.   So though you THINK you know more about pah than the specialists and researchers believe me you do not.  Yes the answer may not come in my time but I will still put my body out there to be used to try to get a cure for US ALL, yes even you doubters.  I will also continue to think positive thoughts, not negative ones and dismiss your comments as absolute garbage.  I also hope that the next time you take your drugs you actually give thanks to the ones that have made them possible, without them you would be dead.  

I make no apologies for my rant, it makes my blood boil when I see such posts and negativity.

House news

So what I have been up to these last three weeks.  Well it is fair to say I have been very busy and so I have had to push myself harder than I should. I paid the price though with three duvet days, not consecutive fortunately, I did get a break between each one.  This was great as now we really must push forward with sorting things for the house.

The concrete has been poured for the foundations so I am excited at that. Tim, our builder has put a ton of men on this job as he really wants to get our house done as soon as possible,  He knows about my condition and wants me next door to my daughter and her family as soon as possible.

I had a “do” whilst looking at doors.  I am never at my best in the afternoons so generally get done what  needs to be done in the morning, This was mid afternoon  and I had barely looked at the doors when I knew - I felt the room spin and a sickness and hurting in my belly.  I told Colin we needed to go whist at the same time  sitting on a pile of wood.  When I go “off” I sit, I don’t care where it is.  I have sat on a wet pavement in the rain before today.  I can’t bear to think of the damage done if I faint in hard places so despite the looks I sit.  Colin helped me back to the car and home to the safety of my bed.  My temerarure  dropped initially to 33.4 and then fluctuated up to 35.7 so I decided to get in touch with Alex, the specialist dealing with me since  my denervation.  He said it was bizarre and to keep an eye on it. Anyway the following day was a duvet day and I have come out of it fortunately.

I always try to think if I am feeling down and really poorly with my ph that tomorrow will hopefully be a better day and it was.  So off we went to choose tiles.  This is a tough job when we have not chosen kitchen units and cloakroom and bathroom etc but after a lot of thought I think we have found our perfect one.  When laid they will look like wood, the pattern is super with the wood knots in etc.  We did not want wood as we are having under floor heating and we know that porcelain holds the heat  really well and needs no maintenance apart from cleaning .  As our house is going to be an eco house we feel we got the best of all options available.

We think we have found the cloakroom furniture, this wasn’t too hard but our own en suite is proving to be rather difficult.  There are so many lovely options out now and we keep changing our minds as to which to go for,  We can’t leave it much longer as the builders need to know where to put pipes and outlets etc.  I am not worried about the bathroom upstairs, we have a little longer to deal with this one fortunately but we really need to shift on ours. 

We are seeing a kitchen fitter this weekend, a family friend, and see what he comes up with.  Our local kitchen showroom place had no idea of design and just threw down on a bench pieces of paper.  With kitchens you need to see the whole affect at once, not piecemeal so we have sacked him. So on we go, much to do so I am hoping my ph behaves itself for a time at least.

Plants to help us

I was reading about 3 good plants to help us in the bedroom as they take away pollution in the air and aid sleep.  Aloe Vera, English Ivy and Madagascan Areca palm.  I have not had a chance to buy one yet but I certainly will do and see how I go on.  

National Invisible Awareness month 

This is for most of November so if you have your chance to make people more aware of these invisible illnesses please do so.  I have been asked to do something about research {won't know quite what until next Tuesday} and to talk about PAH on our regional news channel, Calendar,  so that should hopefully go some way to bringing awareness.  

One thing that made me smile in all of this ph business was my local GP.  He asked if people thought I was doing ok as I looked so well.  When I responded yes, some of them  even think  I am putting on being poorly he chuckled and said I should tell them the joke about how we people wth PH are the healthiest looking corpses in the morgue!  I have always said  that was the only upside of our disease, we look good dead!  The reason we look so well is we retain quite a lot of carbon monoxide as our lungs do not expel it all.  Carbon monoxide causes us to have a healthy glow.  So what in fact is making us look good is in fact doing us harm inside.  

Izzy

She is doing so well with her piano lessons and enjoying them  She even got an award last week as she could play a tune, albeit small with two hands at the same time.  I am so proud of her.  She still continues to be a wimp on her bike though.  We may be getting a breakthrough as she did ride around 20 metres this week.  Slowly slowly we just might beat her fear one day.  Her swimming though continues to amaze me, her stroke is lovely and she can do everything asked of her by her swimming instructor, often getting praise.  I am so pleased she is a capable swimmer now.  Though we could stop her lessons we see no need to.  As in anything just because you can do something doesn't mean we stop doing it, there is always room for improvement.  

It is school holidays here next week so there will be busy times ahead.  I also need to see my dentist as I have an abscess and as I have had to come off warfarin for a few days it is the perfect time to see him.  My pain injections will be given to me on Wednesday morning so yet another thing to be grateful for. I am starting phsio on my ankle as the specialist said I have damaged my ligament badly so as always busy busy busy with all these hospital things on the horizon.

Well I have been wittering on long enough for one blog I think.  Sorry if you disagree with my comments re the trials etc but there it is, I have my own personal dislike of people saying we are way off a cure which in my book means they are knocking the trials and the research which in turn belittles all of us out there trialling.

So, all being well its out for lunch now and then onto my daughters to discuss kitchens with their friend who just happens to be a kitchen designer.   I hope we get a good result. 

Warm love to all and again a huge thank you for clicking like and commenting on this blog.

Carole xxx