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 

From "One Bloody Mess" to "One Muddy Mess'

Well it has been a busy week here with one thing and another.  First of all we have had Izzy spending her days with us as she had a bout of croup.  Silly me did not realise we can catch it so blithely said "of course" when asked if she could come here instead of school.  It was only when it was too late to bother that we discovered that of course we can catch it too.  As the days have passed it seems I have been spared fortunately as I do not think I would have fared well had I come down with this just after my chest infection.  Izzy is well now and back at school, suffering no long term worries after this horrendous illness and I am happy to report neither of us came down with this so all is well.  

As I wrote in a post I have had not one really bad nose bleeds but two, both resulting in the bed having to be stripped right down to the mattress.  How lovely it was then to receive a private message from a ph brother who suggested that I always kept some Tampax ready for such an emergency.  Of course, why didn't I think of this as before whilst in hospital I did have a similar thing inserted in my nose to stop such a bad bleed.  These items are  in fact even handed out to soldiers to use in times of being shot as they will plug a hole to a degree.  Thank you Joseph, I have now added some to my bedside drawer.  Though they can't stop a nose bleed they can save our bedroom looking as if carnage has occurred.

Here is a video of my friend Sarah Marshall as ever raising the awareness for pulmonary hypertension and a really good job she did of it too.

https://www.facebook.com/sarah.marshall.56/videos/10154638778911511/

Her hubby Phil does so much to raise money for our small charity too so this young couple deserve our thanks very much.  A follow on piece on the same tape comes from our own head of the PH Association Iain Armstrong who I really like and hold him in high regard.  Not so much this time though as he went on to say that nowadays with the new meds and better understanding of pulmonary hypertension we could in fact live for eight years after diagnosis.  As I am coming up for my 8th year it was hardly reassuring to either myself or the many others in this position.  I just wish he had chosen his words a little more carefully.  Nevertheless his pride in the ph association as a whole is so obvious to hear and so rightly so.  It is an amazing organisation and we all owe so much to it for all the things they do for us and all the info for us just a phone call away.  Well done Iain.

We went down to our land to visit with our builder who has all the land pegged out now ready for the build to begin.  Talk about a quagmire, there was so much mud even my daughter has stopped foraging on it for the dandelions that fed her rabbits a large part of their diets.   (Of course as these dandelions are dying off I don't feel so guilty we are at last getting our house built at last.}  The digger is going in next week and so it will begin in earnest.  I am so excited that at last we will begin to see this longed for house begin to take shape.  Lets hope the weather is not too bad until the roof is on.  Time will tell.

Above is a picture of just a small muddy section of it that has been dug out ready for the cabin they intend to put on the site.  

We both decided we could do with some time out for good behaviour from our routine everyday stuff so off we went to Liverpool for a coupe of nights.  The object was threefold.  We knew there was an amazing music shop and we needed to discuss certain things that Izzy needed to complement her new piano so she gets the best out of her lessons.  What an amazing shop it was and the gentleman we spoke at length to was so very knowledgable on all aspects of music ( as we would only have expected) that we came away feeling so pleased we had made the journey.  Whilst I was there I also purchased a ukulele for my son's girl Anna as I know she does play a few instruments,  I hope she likes it and gets a lot of enjoyment out of it.

The second reason was to buy some new outfits.  I hate shopping for me and so does my hubby, he hates clothes shopping too but needs must.  Off we went.  He was quite easy to deal with and we were both delighted with his choices.  I on the other hand was getting despondent and also very tired as I tried on outfits.  My legs were getting wobbly and my face was so very red and I was so hot.  Just as I declared NO MORE we hit upon two pairs of trousers I really loved and so quickly following on from that we added four blouses to the pile.  A new pair of boots completed the ensembles and so we could at last make our way back to the hotel for a well deserved rest.

The third reason was something we had meant to do for a long time and never got around to it.  As you know we are members of the National Trust,  an amazing trust that does such a wonderful job taking care of our heritage, all the old houses, castles lands etc.  We must preserve our heritage at all costs so we have had annual subscriptions since we were both quite young.  We had said many times that we really must visit Speke Hall. This hall is not too far from us so quite why we never got around to visiting it is beyond me.  Built in around 1530 on the site of an old farmhouse this magnificent Manor House is such a pleasure to walk around.  With a fascinating history we were blessed to be shown around by our guide Vera who brought the house and previous occupants alive.

We were captivated as she told us of each and every generation, the good, the bad and the downright awful.  The last occupant Abigail sounded to be delightful in that she took so much care of the surrounding schools, hospitals and homeless etc that I wished I could have shook her hand.  A fair but strict employer she was one that could be talked to and reasoned with.  A very astute lady she was not for letting go all her worldly goods as happened in those days when a woman married.  No way would she hand over all her chattels so she remained unmarried.  Quite a lady before her time though as when a servant got pregnant before wedlock  she allowed them both to marry and stay in her employment.  Not too many would have done that in those days.

Not the same for all the previous occupants who would not have dealt so kindly.  I was pleased though to see that one of its former owners,  a Richard 1V actually married his servant girl and though  his father would not have been too happy they did continue to live in the house until their deaths.

Reputed to be one of the most haunted houses in the UK it has appeared on quite a few television shows and is said to be haunted by different ghostly figures. One of these being the real wife of one of its occupants.  On being told that they were ruined as he had gambled his money away she was reputed to have thrown their infant child out of the window into the moat to meets its grisly death and she threw herself in after said child.  Not a happy ending at all.

We have been incredibly busy, what with the house, Izzy bathrooms and kitchen hunting, hospital visits and much more.  I actually love weeks like this as being the blob in the chair is never my idea of a good time.  Today we had a super visit from our friends that live in Canada.  Friends of over 30 years we quickly picked up from where we left off and there is never an award moment between any of us.  Sadly the visit was not a long one due to commitments on either side but they have promised to come and stay with us when our new house is built.  

As the build is upon us we also decided to get in a dry stone waller to straighten up one of our walls that has, over the course of the hundreds of years got bowed.  Though it will likely stand the test of time of many more years we decided we would get a better edge to our garden if we did this job now.  Living in a county where lots of our walls in the fields and surrounding district are dry stone we were fortunate to find a man who comes highly recommended.  He has said he will do the wall, though not this week.  How fortunate that he can get on with this swiftly due to being retired.  I can't wait to see him in action.

My denervation appointment is due on the 12th of this month, Thursday.  Despite my asking it seems that for the very first time EVER there are none of my ph friends going to be either as a resident or for an appointment.  I needed to ring the hospital today and was alarmed as I could not get a call through, all the lines were blank!  anyway hours later is was resolved so the taxi will arrive around 9.00 and testing here we go.  I shall post how  get on with this, though there is no right heart cath this time or MRI, just the usual ecg, bloods walk test etc.  

So all is well here, though busy.  I trust this finds you all as well as can be.

Much love to you all and again thank you so much for just clicking the like button, comments are super too.

Carole xxx