Monday, 16 April 2018


Thank you all for your well wishes after my weekend spent in my local hospital.  I was very touched once I arrived home and read them all.

I am ok.  I need a little rest before I get back to my normal ish self!  We know well with ph the blips we encounter along the way and this was one of those, though very scary at the time.

As with most of our turns they arrive without warning, mine certainly did.    Colin was talking to me in the car and the sound of his voice was getting unbearable as my head was ready to explode.  I felt sick and my heart hurt and also down my left arm and shoulder.  I must have been squirming in my seat and Colin looked over at me and said my face was vey red with traces of grey. We were on our way to an office to sign some papers and I thought by the time we arrived I would feel a little better. .  

By the time we arrived at the office my legs just did not want to walk.  I sort of shuffled in and sat down as soon as I could.  A drink of fruit tea was given and I thought I would soon come around.  No chance.  However I am not one to give in so insisted we went to look at a form of security we were going to get for the house after we had signed the documents at this office.   I really should not have bothered as I could barely stand straight, I kept bumping into Colin as I swayed whilst standing.  We aborted that job but Colin had to practically carry me to the car and I could not get in my seat myself, my legs were turning to jelly.  Once in I actually asked to be taken to hospital.  I hate this as I knew it meant the end of any hopes of a holiday abroad for a whole year.  We are always asked if I have had any unplanned hospital visits in the past year, planned ones are ok but unplanned means they really will either bump up the insurance or not insure at all.

As Colin was taking me into hospital in a wheelchair I said I thought I was going to faint.  I felt so bad.  Once in a room with somebody taking notes I just felt myself going. Before I knew it I heard the man saying crash and without ado I was wheeled around to Resuscitation.  They got me onto a trolley and wired me up to all the monitors.  The problem was they do not have a clue about ipah and tried to give me nitroglycerin, a definite no no for me.  Then this doctor ( who appeared to have no empathy for anyone in these bays ) said I must have 100mgs of Viagara, Once again I refused as I had only had one an hour before.  The next thing they tried to give me was warfarin.  I explained that I already take 5 megs daily so he went away and came back with something else   Called Gopa something or other.  I just took it, I was beginning to give in.  I had already told them  I was not to take opiates as I was intolerant so he said I could have morphine!!!  Again  I refused.  My oxygen level kept dropping and the beeps kept going off  They lowered my bed head and raised my feet.  After 2 E.C.G's , an X Ray etc they could not see what the problem was.  I tried to tell them it was my pah playing up.  What could they do though, nothing really.  They could not make any sense of my blood pressures as they kept rising high then dropping really low. 

I think what happened was my levels in my lungs must have risen sharply and suddenly to a degree that my body just could not cope with it.  This happens with us, we know that and even our specialists have no idea quite why they go up and down as they do.  Generally we cope with it ourselves but as this was particularly bad we felt the safest place to be was in the hospital.  They were reluctant to ring my specialist hospital, quite why I do not know but there it was  We must have asked them three times at least but our words well on deaf ears.  

In time I was taken to the coronary care ward and put in a room on my own.  My arm began to bleed badly where my catheter was as by this time I was way overloaded with warfarin and the other drug that acts the same.  There I stayed.  At 9.00 pm a nurse came in with 100mgs of sildenafil.  I refused as I had my own but she tried to get me to take hers and not mine.  I explained that I cannot take that particular brand. 

Back in 1989 British Pfizer scientists created a drug called sildenifil citrate as they believed it would be good for controlling high blood pressure.  They coated this compound and marketed it under the name Viagara.  Once the patent ran out, or in this case a deal was made with other companies to make this drug then other generic brands became available called sildenafil.  All well and good and a very good cheap option for the NHS saving over 10 million pounds a year when those taking Viagara were put onto the sildenafil pill instead.  Sadly the coating used by the generic forms made me very poorly so I had to be put back onto the original pill, the one made by the scientists who created it and called it Viagara. My local  hospital had the generic ones and anyway I always take my own.  I think I was an enigma to the staff as they were batting in the dark with an illness not known to them  I did have a couple of doctors come in and ask if they could listen to my heart as they had never heard a second heart sound as ours has. 

A very restless night with them coming in and taking bloods etc and another tussle in the morning when I had to refuse their meds in favour of my own.  I know it is absolutely not their fault, but I was feeling frustrated as they would not ring Sheffield!  In the afternoon a consultant cardiologist came in to see me.  He was really nice and was shocked he said when he learned what they had given me down in resuscitation.  It was no surprise to him then to see the state of my cath site due to being overloaded with meds for my blood.   He listened to my heart, checked my ankles, which were still slim so not water logged and of course as always looked at the right side of my neck.  He expected it to be bulging etc but it was not. 

He admitted he was at a loss as to what to do to help me.  He wanted me to stay in another day as my colour was still high and my legs very weak and wobbly.  Colin and I talked and decided we understood pah better than them and now the crisis was over we could deal with it at home and at rest.  Though the doctor  agreed that we knew better how to cope with it than they ever would ( and this episode absolutely showed us we were right  ) but said at least if anything went wrong I was in the right place in the hospital.   I did not say it but I thought differently.  Had I taken all the drugs they tried to give me in resuscitation I think  would be dead or in a very poor place right now.  

I understand what they were doing was the correct thing for somebody having a heart attack, but not for me.  They did their best, their intentions were good but my faith was lost.  Had they made a phone call to Sheffield as we asked I would have more reassured that they would listen to others that knew my illness better than they did.  We promised if I felt bad again I would go straight back and we went home and I went straight to bed.  

I had a good nights sleep and I feel I am coming round again,  not well enough for a walk yet, staying put at home is my only activity for the day but I do feel relief that this crisis is over.  

Hopefully tomorrow we will be going to a granite factory where we can choose the piece we want for our new kitchen.  It all seems overwhelming does the house right now, maybe that is what tipped me over the edge so I have enlisted my daughter to look out lights, pendants etc we need for all the rooms.  It sends my stress levels too high which we know is really not good for us.   Anyway she has really good taste so I know  I will not be disappointed.  

So that is all for now, just wanted to update you all and to again thank you so much for messages of well wishes and support, it means such a lot.  Colin was astounded to see all the messages but I said that is what we do, we support each other! After all we are a rare breed and nobody knows better than us all the vagaries that come with our very rare condition.   

Love to all

Carole xxx


  1. Glad you're home and feeling somewhat better! A scary episode! And to think had you been unconscious and unable to refuse all the objectionable drugs what could have happened!

    1. Gosh I know. I do wear a medic alert bracelet but I have no faith they would ring the number to see about my meds. Anyway home safe fortunately. Xx

  2. So glad you are home and feeling better. What an experience! It is just unbelievable to me that doctors sometimes don't even know what PAH is. Another reason to raise awareness everywhere. Enjoy picking out your granite, Can't wait for photos.

  3. Quite a way off photos but will do when it looks a lot more finished. Xx

  4. So glad you are home again. Much love to both you and Colin xx

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    1. Thanks Patricia. Now got a bad cold to contend with, hey it never rains but it pours doesn’t it? Hope you are doing ok my friend xx

  6. I was worried about you. Its not often you admit defeat and ask for help. Last time I ranrang Sheffield and got them to ring my hospital.
    Take care xx

    1. Thanks Helen. No it’s not like me, I am generally a tough cookie but yes, this was so bad. Truly on the mend now though. Hope you are ok. Xx