DOWN BUT NOT OUT

It is certainly true that the last few weeks have not been kind to me in the least.  For quite a while I have felt a change in my pah and that was confirmed by my specialist who said my pressures had risen to a big degree and they were just not coming down.  I think I already knew as we get to know the symptoms and mine were not improving.  On top of that my heart rate (resting) had risen by quite a lot and again never moved downwards at all which was not a good sign.  This was a huge blow but I knew I had the best team working with me and they are trying to get me an MRI appointment to see just what is happening to my heart.  

Selexipag was talked about and it may well be that is the best chance to get my resting heart beat to lower but there are so many ifs and when's right now that we are in a sort of limbo. On the good side for me is that as I have both the chip in my pulmonary artery and the one measuring any abnormalities in my heart at least they are being checked daily which is quite reassuring.  

On top of that we went on holiday with friends in our motor home and I lasted only a night before I just had to come home.  Somehow before we went away I had done something to my back which  I thought would just go away in time.  I was so very wrong and one night in the motor home had me almost screaming in pain.  With a heavy heart I left to return home which was very sad as I had been having a nice time.  In fact I had just had my first ever flavoured gin ( I am not a drinker but decided to try it and loved it) and the holiday seemed set fair for us. My back swiftly worsened until I could no longer put my right leg onto the floor, I had to hold onto surfaces and hop, excruciatingly painful.  

A visit to the doctor was a must so off we went.  Now it is known and on my records that I cannot take opiates at all. They make me so incredibly ill and no amount of anti sickness medicine can combat that at all.  I have it imprinted on my medical alert bracelet too so well documented. The doctor examined me and said I would need to take co-codamol and I very quickly refused telling them to read their notes. She however was adamant that despite my notes I would be just fine with these. Now you might ask me why I listened and accepted the meds. Well believe me I was in absolute agony 24 hours a day so was willing to believe anything that would stop the pain. This was the beginning of a nightmare that is still to a lesser degree affecting me now.  

Following instructions to take with food was difficult as due to the pain I could barely eat.  However I forced down food and took both the pain meds and anti sickness ones too.  This began a nightmare I never wish to endure. The sickness came, every sip or bite of food came straight back up or if I was fortunate and thought I had kept it down it would come up whilst I was asleep and I would wake to find myself throwing up all over the bed.  It did not have a chance to ease my pain so it was just one big nightmare.  Sick bowls were placed all over the house and still l sometimes  I could not make it to reach one. Three o clock in the morning was the time when I would be screaming in pain whilst Colin would try to help me to walk around the house in the hope of relieving the spasms but that was no good either.  I must admit I felt a despair so big I do not believe I have ever felt before.        

We returned to see another doctor who insisted I continue with the meds but we were just as adamant that could not happen.  By this time I had lost eight pounds in weight as not able to keep anything down despite not taking the meds.  We rang my specialist to tell him what was happening as my pah meds were coming straight back too.  He was very concerned and made sure that certain blood tests were done to check potassium levels etc.. In the meantime I was referred to an MSK specialist who was very lovely and very thorough in his examination of me.  His name was Sam and he was very concerned.  He said he would send me for an MRI urgently but that even so it would take weeks to come through.  I despaired so we agreed that we would go for one privately at a cost of just under £1000.  We had let our private health insurance lapse one I was diagnosed with pah as it will not cover it so we just let it go.  I was also refereed for urgent physio too.  By now I could see no end of this torment.  It seemed my body was letting me down in so many spectacular ways. I also would find my bed covered in blood on waking and i was having many nose bleeds.  A trip to the INR clinic showed I had a INR level of 5.8.  It seemed nothing about my body was working  

For those of you with the heart monitors I must confess I was clicking mine rather a lot throughout all this and it was reassuring ( in an odd sort of a way ) to learn that all of these clicks by me had been monitored and checked out so you are blessed to have such care.  I was told that each time I clicked it I really had had an abnormal happening with my heart so it is good to know they could check them all out without seeing us.   

Well done Michelle Wood who had hers fitted yesterday.   I hope you feel a little more reassured now.                                      

Despite not taking the pain killer meds as they were clearly not doing me any good but in fact harming me greatly the sickness just did not stop. Every bite of food just came back up.  

A MRI scan appointment was put in place but they needed a referral letter. Colin took the very detailed report from the MSK specialist into he unit.  This apparently was not acceptable as it needed to come from my very inept doctor. Clearly this takes time to organise so I lost the place for that scarn whist we waited for them to send the much needed letter.  My appointment was moved to today but I received a call yesterday on my way home from the physio.  This was from the private scan guys who said that as I had said I had two chips in my body, one in my pulmonary artery and one near my breast I needed to let them know the numbers of the chips and all sorts of detail I just did not have.  In frustration I asked them to let my appointment go and I would get back to them when I found out the info. Though I know I can have MRIs with the chips in they of course have to cover their backs so I do understand. 

Once I got back home I discovered to my horror that I had also lost my engagement ring.  The weight loss would have accounted for that and to say we were gutted is an understatement.  No replacement ring can ever replace the original one so yet another blow.  Of course we have rung up the hospital and asked them to look out for it but my hopes of getting it returned are almost zero.  

Last night my pah specialist rang to see how I was feeling.  He said he could furnish the clinic with all details needed for an MRTI  but I said lets just wait a while.  He said he could see by all the readings they were getting for me that I had been very very poorly.  I said I assumed it was all because of the pain being so intense all my other issues but he said no, sone would be because of my pain but they were quite confident that some was because of my pah rising as quickly as it did and my heart rate not coming back down. So we play the waiting game and some small part of me thinks I have done ok to make it so far but another part of me thinks heck - I have not made it far enough.  I have a little girl Izzy, my grandaughter that needs to see more of me.

Izzy has been a star. She comes around and helps me with my physio exercises and makes sure I have things to drink close by me. To be honest she has made me want to keep going when my mind was saying enough but that was the pain, not the pah. I still have lots to do re pah as they are getting loads of info from both my chips and trials and studies are coming up all the time for us.  

So I wish you all well and  will shortly be returning to facebook. I do thank all for the messages that were sent to me and phone numbers if I wanted to chat. I thought these were so sweet but to be honest I had felt so poorly I just wanted to isolate myself. I am however coming out of that slowly and will I hope soon be pain free Regarding the pah well I will work with my doctors and let you know the outcome when I know more myself. I really miss exercise but right now anything like that is out of the question. I will return though one day to it as I know it is very important for us. 

Warm love to you all

Carole xxxxx