I was overwhelmed last week as to the response received from all my Facebook friends. I was feeling terribly ill and was indeed in a lot of trouble when I posted and could hardly believe my eyes when I saw all the messages of support coming up on my thread. I expected maybe ten or twelve but there were over 100 responses. What was also so humbling was that when I didn't get back to say how I had got on at the doctors I saw later that people had posted that they were worried as I had not updated what was happening. It was so nice to think that so many people on my Facebook page cared enough to bother to write these messages, thank you one and all. The reason I didn't get back was that my doctors appointment ran into a hospital appointment and took up so many hours. Fortunately for me the doctor at my hospital decided not to keep me in as he did not understand the condition. His thoughts were that my ph meds needed to be changed! How easy this sounds, not so simple to do. My pressures were at one stage 192/164 with a heart rate of 122, with a heart rate so high no wonder I almost fainted. I know for many ph patients this would be the norm, these pressures but they were not for me, hence the feeling very scared.
Thank goodness he did not keep me in as if I stay overnight in a hospital my insurance for our soon to be on cruise becomes obsolete. Yes we would get most of the money back we have paid for the cruise but our holiday seeing St Petersburgh would be gone. I am doing my best to stay away from overnight visits then. My stay in the hotel when on the study does not count as I am being monitored and it is not a medical emergency thank goodness.
We have still not got to the bottom of this problem BUT it just could be that something bad was heading my way in the form of yet another UTI. Quite how these infections can bring on the overwhelming feeling of being so poorly and being so sure I would faint I don't know but I accept this can happen. A six and a half hour wait at the hospital where I was sent to by my doctor resulted in no answers. My local doctor was so shocked when my friend helped me into his surgery. My face was the colour of beetroot and my eyes were just slits in my head. He said he was used to seeing me bounding into his surgery. A trip to the hospital with a possible overnight stay was called for he said so off we trotted, actually I was held up as my legs would not hold me up. Off we headed to the Ambulatory ward at my local hospital.
My bloods were taken after four hours and I was then told I had to wait to see a senior doctor as they had never heard of IPAH. How often have we heard this. Another two hours went by and by this time I was so badly slumped in my chair even the sister in charge of the ward was concerned and helped me to a bed in another room. The said doctor rolled in to see me. If this was a senior doctor then there is much truth in the saying that when your doctor looks young you are old. I swear he looked to be around 21! My pressures were taken and as these were now within the normal range I was allowed home. He said I must arrange to see my own specialist as he had no idea what he was looking for. Still having to be helped to walk by my friend it was home to bed and a good lie down.
Colin was away in the motor home with our grandaughter Izzy so I was adamant that I didn't want them to be disturbed. This was a much longed for trip and I knew that with the help of my friends I would get by. Sure enough I was visited three times a day and the phone never stopped ringing with offers of help. Friends from close by offered me help too, how amazed I was at just how many people were prepared to help take care of me.
I rang Sheffield, my hospital as instructed. I dare not do any other as Marcmary Dyer said she would hound me until I did. She said that there had to be something wrong for me to call for help as I was usually hard as nails. Not daring to cross her I duly made the call and my appointment was for Monday at 2.00. I then planned that if I was able to walk a little by then to go visit with Judith Holden, Patricia Nelson and Christine Fowlie who would all be on M2, my specialist ward. Alas this was not to be.
Colin arrived home with a very excited little girl. I asked from my bed, I hadn't been able to get up properly since the episode on Thursday and it was now Saturday if she had missed me or her mommy. She said no then added well I missed you grandma. On seeing my shocked face she added, "well I didn't really but I knew it was what you would want to hear" so we have a very diplomatic girl here. The short holiday was a huge success and they are planning to do another one through the long school holidays.
Early hours of Monday morning I knew that I was getting the dreaded UTI. I took a bath, pain killers but all to no avail, it slammed me hard. When Colin woke up I told him there was no way I could go over to Sheffield, the thought of being bumped around in a car was a nightmare so I rang to call off my appointment I am to ring them if my symptoms persist once I am clear of the UCI.
Colin was a star. As I had been in bed virtually all the time since Thursday he stripped it all and put on my very favourite bedding, pure white with a heavy cotton thread count and nicely starched. A clean bed, lovely white pjs and I was ready for a very much needed sleep. I am feeling a little better now so hopefully once antibiotics do their job I will get back to my "norm".
Laura Parker
Today is the day Laura is to be laid to rest in Rotherham. I had planned to attend this funeral, sadly it is not now to be. The messages keep coming thick and fast and we see just how many peoples' lives this young girl touched. I am sure her service will be moving but I am also sure that there will be many tears of joy too as tales of what she got up to in her very short life is talked about after the service. She was a ray of susnshine right to the end of her life so what better accolade.
Gem Cousins
Gem is currently having a three month holiday taking in Dubai and Australia. I for one am loving seeing all the pics she is sending back. Typical of Gem though, she still finds time to search for things to help us with ph. Her latest link is found here and it is very interesting. The article suggests that people with damaged hearts could benefit from taking Vitamin D. I am up for giving it a go. Thanks Gem, so thoughtful of you to take the time out whilst on your amazing holiday to post this. Hope the ph meds travelled well for you.
Steven Baker had his hickman line fitted yesterday at Brompton and I hope he begins to feel the effects on his heart once the drug begins to do its job. As he has a little girl he has much running around and playing to do with her yet, go well Steve.
Red Flag Pulmonary Hypertension Symptoms
Sorry I am not sure who posted this but it is an amazing piece to show just what to look for when unknowingly suffering with ph. This just COULD get somebody to make their doctor listen. Please read, it may well be your life that is being saved. Here is the link: -
The Last Time
Found this and how poignant it is, we should all remember: -
All for now, my head has begun to swim again, time for sitting down me thinks!!
Have a good day and if you have liked anything you have read on here please like and/or share.
Love to all
Carole xxx
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