Sunday, 5 November 2017

HUMPTY DUMPTY Get off the fence NOW if you are able.

Talking to my consultant the other day he has reassured me that there has never been such a rich pipeline of drugs to be trialled.  We often see that people believe there is not much work going into finding a cure and this is so very wrong.  As I have stated before though we need participants in this, they can't work without us.  

How would you feel about trialling if you did not need to go through the endless rounds of right heart caths, MRI's etc.  Would it make you feel more inclined to trial drugs?  Well I know that there is a germ of an idea being worked on that may help to eliminate them so just keep that in mind and just maybe we can get more people onto these trials.  It could well be that you have told your ph specialist that you have no interest in trialling BEFORE but are now coming around to the idea.  If everyone able to trial registered their wish with their specialist the list of participants would grow and grow.  Just think about it as you swallow your next meds.  

I know I take a tablet every day.  A very expensive one called Ambrisenten,  This bright reddish oval shaped teeny tiny thing is helping me to still be here.  My friend Mandy Leonard was one of only six people that trialled this drug in the UK.  Not sure of elsewhere in the world but what a brave thing to do.  Many of us now are taking this medicine daily as part of our drug regime.  I thank you Mandy as it certainly got me off the hickman line and onto the oral meds I have been taking for the last six years. Many on this site will be aware of this particular drug and we take it thanks to Mandy Leonard and the others who took the bull by the horns for us and did their bit in the developing of this drug for ph. 

I also take viagara, huge doses and I know somebody within the group trialled it.  Sadly I did not take the name so if you see this post please give me a heads up.  Many of us are dependant on this particular drug or its generic make.  I know I would not be here without either of the above drugs so many thanks for trialling them for us.

James A Hazlett is on a trial which appears to be working so well for him  This particular trial is called Reata's "Lariat" trial for Bardoxolone Methyl.   In December he will transition to the longer range portion of the same drug/dosage (10mg) titled "Ranger"  He has not experienced any side effects from this drug but his RHC went down from 26mm to an amazing 17mm because of trial med and 10 mgs of opsumit.  His six minute walk test rose from 500 metres to 600 metres.  No change in shortage of breath.  

So we are moving forward, steadily steadily trial by trial to the day when we can hopefully eliminate the need for all these meds.  

Some friends you would be better off without.

I was so sorry to read about my lovely friend Tess who heard her friends had been talking about her behind her back, thinking she was not nearly so poorly as she told them.  Yes she was so hurt and angry and posted that it took time and effort to get dressed, slap on the make up and go out to be with them.  They had no idea of the impact this had on her body, of the crying she does at home in the quiet of her own space.  Why, well as we said before we look good dead!  Helen Akers had it right when she said we live too long!  Though she does not wish for us to die of course, she herself suffers from ph, I get exactly what she meant.  If we are diagnosed with an illness that we are told will kill us then yes, for sure friends rally around.  It doesn't take too much time though for us to suss out the ones who will stay when the going gets tough and those that will fall along the wayside because this illness is  "going on too long to be as bad as we say surely!"  

Let me assure you that this illness is as bad as it can get, that it is devastating to us but we have learned to fight it, we have learned to try to live as normal a life as we can to the outside world, at home is where it can all fall apart.  Personally I have learnt to take no prisoners  I can't be bothered with a "friend" I let go but it  still makes me smile today as to how it came about.   On the death of my mother she did the right thing"and called at my door with a bunch of carnations.  She said she had not got the time to come in as she had a very important appointment.  I was just so pleased at her thoughtfulness until  found out later in the day that the very  important appointment was a cup of tea over the road with another friend!"  So people like this I prefer to let  go and concentrate on the real friends we have, the ones we know will help us when we call, as indeed we have helped them in the past. Life is too short to cry over the ones that are not real friends Tess, concentrate on the ones who are always there for you and like HUMPTY DUMPTY who is sitting on the wall give your "not so real friends" a big kick in the pants off that darned wall!!!!!!! let them fall, you are better off without them.  

To the ones whose family and friends have stayed faithful and true then I congratulate you on having a really good supportive network, long may it continue, I am sure it is well deserved.  

For myself my "real" friends are still my friends, it is some of the ones I inherited when I met my husband that have proved to be fair weather ones so it is very easy to let go.  Some of these inherited ones though have turned out to be good true ones and I am forever grateful to you, you know who you are an the help you have given me.  

 Last weekend we enjoyed a lovely afternoon with friends at one of our local restaurants to celebrate an 80th birthday!  I think I did too much talking around our particular table and paid the price when we left but it was a small price to pay for spending time with such wonderful people in such beautiful surroundings.  So yes, we push ourselves to enjoy life but we are always aware of the consequences.  If you think the pleasure you will get for pushing yourself hard is worth the effort then go for it, if not just say no and forget about it.  

Other news for my family and friends.

As this blog is not just dedicated to ph I make no apologies that I post what is happening in my daily life of living with ph.  Well I can happily tell you the Izzy has learned to ride her bike!!!!!!  I never thought I would live to see the day but grandad worked with her in the park then invited me up to see the progress.  I was delighted to see her riding her bike, ok it was wibbly wobbly but now she will grow in confidence of course.  I was so pleased I actually bought her an LOL.  For those uninitiated it is a tiny doll that comes with accessories all fitted into a ball.  A huge money maker for the ones that created this doll but a big pleasure to see her open it.  Once opened she decided she wanted her grandad to video her playing with it and then put it on utube!  All went well for a while, she is a great narrater and not shy of the camera.  She then decided she needed the spotlight moving a little higher so indicated this to grandad.  To our horror the spotlight actually then fell onto the hair of a Barbie Doll that was to be part of this little production and burned it off!!!!!  There was much hilarity but it does show the danger of certain dolls if not being taken care of in the correct way.  Anyway the video was abandoned and then they moved on to making a safari scene in a shoe box, way to go!!!!!    

PH Awareness month

As most of you know this is a special month in raising awareness for invisible illnesses.  So it was with a happy heart I participated in an interview to talk about ph, research, awareness etc that I told you about in my last blog, and then this was followed up with a video.  I am waiting to hear when these will be seen but I don't think it can be too far ahead.  There is so much going on right now it is so hard to keep up!  An article will be appearing in the Yorkshire Post at some time so again not sure when.  Mary who took the interview asked if she could get a picture of Izzy and I together as she is a huge part in my fighting ph, I need to make many memories.  Whether this particular picture will be included who knows but once again  I feel I have done my bit towards raising awareness of ph and the need for all who can to get on board the trialling train. 

Shocked at my pain clinic appointment

As I went for my injections into my neck I was pleased to be one of the "early doors" patients as I always prefer to get things done in the morning.   All went well until the nurse took my form with my medicines and logged them into the computer.  She came back into the room and told me I would have to be last on the mornings list.  When  asked why she handed me a paper that she had taken from the file.  Now this paperwork I had never seen before, never been told about so I was horrified to learn that I am now insensitive to most antibiotics.  Terrible news for a patient with ph to hear, particularly as this sentence was directly under a line that said I was in chronic heart failure.  We know a simple cold can turn in an instant and kill us so I was  shocked at this news.  This meant that I had to be last on the list and that the operating room, all the equipment used etc had to be deep cleaned before use after lunch.  It clearly states on my form with a big red triangle that says confidential ISOLATE is an ESBL producer.  So just another thing to add to my list of problems!!  Ah well, we do what we do best and just get on with it.

House News

Now this is moving on a storm, particularly as my family next door have allowed us to use their electricity so the builders can make a cup of tea!!!!     Electric is due to be connected in four weeks time,  For now very little is used.  The big usage is when the house is built and the joiners are in doing all their work, quite a long way down the line for that so we will have our own supply way before then.  The water is used in small amounts to mix the concrete, this is a petrol concrete mixer so no electricity used for this.  I am pleased we don't need to use their supply so much but will still feel better when we have all our own.  The walls are beginning to go up and we see progress daily which is so lovely at last. 

Looking inwards, being reflective

Do you ever have days or hours when you do not want to talk to anyone, you just needlessly watch rubbish tv to take you mind off things.  Well that was my day yesterday.  Colin had lots of work to do organising bathrooms etc but it just went over my head.  I wrongly thought in my head we had already decided on the tiles for the bathroom.  I was wrong of course so this led to a bit of an atmosphere as I "never listen".  I do of course but my brain seems to be mush from time to time and I try to make myself out of the world of ph and put my brain into low gear.  I need to get back on track I know but I still think it was the shock of the recent report from the hospital, my local one not my ph one.  

So I leave you with another blog, I hope there is something of interest in it for you to read.  My last blog saw me receive 1027 reads so far which is amazing for little old me sitting here in the study trying to connect with you all.  I thank you from the bottom of my heart for any comment or a like or share.  

Warm love to all

Carole xxx







3 comments:

  1. Another great blog, Carole. As I was just diagnoised one year ago and was on IV Remoudulin and then switched to Letaris and Adcircca and now just two weeks ago Uptravi was added (the side effects are getting to me), I don't know if I could trial. Do I just tell my ph dr I am interested or do you have to meet a certain criteria? I think I mentioned before that I am Sandy Boswell, but my google account is different. Thanks for continuong to share your thoughts with us and encourage us in this struggle of PH!

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    1. Sunny yes I do know who you are my lovely friend!! X

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  2. Speak to your ph doctor about,your interest. It took me 18 months in total to begin to trial. For a year I was on Hickman line. Then I went over to oral. After,six months I began my first trial, never looked back. So if you Express and interest at least they know. Some drugs will not be suitable, I have been turned down for some trials that the medics think would not be good for me but then put onto another. Good for you for thinking about it. So very very pleased! We will fight the good fight. Xxxx

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