My hospital visit
It has to be said that I have been getting increasingly worse with my symptoms since beginning the trial medication two months ago. On going over to Sheffield today for another trial visit I wasn't sure where we would be headed. Echo, ECG and the blood tests needed, plus six minute walk test and still not quite sure what the outcome of the visit would be. On the one hand I hate to give in, on the other hand how much longer could I go on with steadily worsening conditions. If it was the ph worsening I was snookered whilst on the trial, though as was told to me the symptoms certainly were the ones linked to the trial medication. Charlie my doctor said he could not make the decision but as far as he was concerned he was shocked to see me still on the drug as he knew how bad I had been one month earlier. He said he knew how tenacious I was, testament to how I carried on with the DCA drug even whilst I was having horrid side effects. Whilst on DCA though in myself I felt better, though I did have consequences and still do. On this medicine I had nothing but bad bad and even more bad effects. As he was quick to point out I wouldn't be getting any medals for carrying on and indeed if it was a worsening of my ph it could take it beyond where any change of meds would help. He reminded me this was what trialling was all about, some would tolerate the drug, others wouldn't.
So decision made and I am off the drug. Not the visits though as I will continue to be monitored for months to come yet. In itself I think this is a good thing. I return next week for more of the same tests. I hope I feel a little better then.
I asked if it would spoil my chances of trialling any other drugs and was told emphatically no as I had proved both before and now I take them very seriously. He said it wasn't as if I stopped just because I couldn't be bothered. Anyway as I said before I still make the visits. I do hope that my condition improves and that in a short while my normal ph meds can be adjusted to try to stem the rising tide of my levels once more.
Our very famous little one!
I wrote in an earlier blog about attending my first ever baby shower that was thrown for our Jessica by her mom. Little did we know then quite how famous our little chappie would be on his birth. Unfortunately the family live on Park Row, one of the places hit so dreadfully by the floods. Barges were washed up on the banks of the canal opposite them and their house was filled with water, right from the cellar up into the lounge. Unfortunately nursery equipment that was about to be assembled was destroyed before they had a chance to move it. The water came in so fast. All kitchen has gone, now needs all new, such horrors. They couldn't get insurance as they were flooded back in 2012. Let us hope the government goes ahead with their promise to help all these people in such a predicament.
On January 2nd whilst still reeling from all that the family now faced Jessicas' waters broke. Fortunately they had just been loaned a courtesy car as theirs, along with Jesses' mom and dads cars were destroyed in the floods. Amidst the mud and the water Jess and Brett made their own way to our local hospital. There after being examined she was told to go home, she was in early stages of labour. As the labour progressed they rang the hospital and she was told to take a bath. It became apparent rather quickly that Archie would not wait for his arrival into the world. With horror Jess realised he was arriving there and then. Towels were quickly gathered and the fun began! In minutes his head was born and a neighbour arrived along with the paramedics to deliver the rest of this bundle of joy.
Being born at any time certainly is an upheaval for any family but to be born when the house was in such a state, mud all over and furniture ruined, carpets floating etc. Not fun at all. They had no means of washing or drying clothes and towels. I gathered up a few towels today along with my steam mop took them to the house only be greeted with the phones constantly ringing. It was all the newspapers hoping for a scoop. That, along with all the news channels made me beat a hasty retreat. I left them to the joys of all these people trawling all over their house amidst all the destruction.
Off I went, through the mud on the roads and into my car. Now I am home and feel so sad that a time so precious, and of course it is still so precious is marred by the total ruin of their things. One good thing though is that both Jess and Archie are safe and well. Another addition to our family and one so very much loved already. {oh and I got to give him his bottle} such a lovely little face he has.
I have attached a link below which shows Archie with his dad and neighbour. Pity they didn't get his birthday right, he was born on the 2nd January.
Are they MAD!
I saw with horror the news today that a gorgeous four year old girl had been stuck to the toilet with superglue! Somebody idea of a good time was to go into the girls loo at a Mc Donalds and apply this to the seat. Very quickly after they applied this a little girl went to the loo. Her mommy waited outside the main door as she had two other little ones with her. She did note that her daughter was taking a long time and when the little girl arrived distraught it all came out why. This beautiful girl had been unable to get off the toilet as she had been sitting on superglue. After a huge struggle she did manage but left behind skin! What kind of people can do this type of thing. My wish would be, though of course it can't happen as human rights dictates otherwise, that the two people responsible are stripped naked and be made to lay on a floor totally covered with the stuff. Let us see just how funny they find it then when they have to be almost rendered skinless.
Orphan disease status
The above link is to information on how we are given orphan status and just what it means for us with ph. More funding and more incentive for the pharmaceutical companies to research our condition. Please read it and once again it sure gives me hope that I will, thanks to all this going on, be here when the cure arrives.
Download video in Kath's garden
The final link above, is a video from one of our PH friends, Kath Graham. This time we were told by the researchers that at last a cure may be close! Once again we play the waiting game whilst more tests are being carried out but they believe than in the next year or three they will be ready to trial. I love that this video ends with them saying, on national television that AT LAST we have REAL hope. Please watch this video.
Such an accolade for me
Who did I receive such an accolade from, well none other than Izzy herself. Now for those of you that know about Izzy she is very much a grandads girl, in fact me rarely getting praise as it is all grandads doing when he sorts out anything to do with play. However I had received rather a large box in the post containing a gift. I took the gift down to the store room and was just about to get rid of the box when Izzy decided it was perfect for a dolly bed. Then she said she needed two as her grandads baby needed one as well. My brain was working overtime trying to think of just he right thing when I hit on a brainwave. Off I went into the cupboard and pulled out one of her drawers from the storage unit that houses some of her toys. It made the perfect bed and I was well rewarded by Izzy who said to me "well done grandma, you have such good imagination"! Such praise indeed.
Visiting my ph friend on the ward
As some of you will know Laura Parker was admitted to Hallamshire a couple of days ago. I called in to see her and she was fed up, and who can blame her. New treatment is beginning today to try to get rid of the fluid in her legs. They looked extremely painful as they were so swollen. I do hope it works. I know when I had been in before a lady in the next bed had legs even worse than Laura's and the meds did nothing for two to three days and hen, hey it was like a miracle. She ended up with the most beautiful slim legs, indeed we called her Jane lovely legs. Do hope the same will happen to Laura.
Discussed when seleixipag would be given over here as it is in America but was told not yet, though we were headed in the right direction. This drug works the way iloprost does though not given through hickman line or nebuliser but just a straight pill. I believe it doesn't have as many dire side effects as when given via the other two methods. We shall see.
Well my chair calls for me to rest, hospital visits are so tiring aren't they.
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Love to you all Carole xxx
Sorry to read that the trial didn't go well.
ReplyDeleteI suspect if Jess's story hits the national papers they'll be inundated with stuff for the baby :D
Don't know about that but they sure could use some nursery furniture. Maybe the paper could pay for it? Sorry don't know who you are but thanks for reading my blog xx
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