USA has decided to allow Selexipag to be used in the fight for better outcomes for patients with pulmonary hypertension. Now don't quote me on this as I cannot remember where this following info came from but I feel confident that I read that there was a 37 percent better outcome for patients being given this drug whilst at the trialling stage. We however in the UK have, up to press, been denied this drug as NICE which is the controlling body with regard to such new medicines have decided that there is not sufficient evidence to support us taking this drug. Of course money does come into play here and I wonder if they realise quite how expensive Iloprost is when the facts are taken into consideration ALL ROUND. Many of us with ph are on this infused drug that could be easily switched over to this oral drug.
See the link attached. Very good read and raises points for and against this drug.
I remember well being on the hickman line and being given iloprost. My hospital stay to get me to the stage where I could leave was almost five weeks in total. Five weeks at the cost of (on that particular ward £500 per day), expensive to say the least. The drug itself was still within the five year boundary so it cost £168.000 per year. In itself incredibly expensive, {I always suspect that I was allowed it cos they didn't think I would need it for too long as I was so near to death !!!!} In any case I was to be on this drug for a total of 12 months. It worked incredibly well for me as many of you know and allowed me to come off this drug as my levels dropped dramatically. I must stress though that on top of this initial set up there were all the hospital stays in between.
When we have the line in we are very susceptible to bugs, infections etc. Our bodies see the line as a foreign body and whenever we get any kind of illness it requires swift action by our ph team to protect our heart. As our natural defences take over to kill anything seen as foreign in our bodies it would also see the line as a problem. The end result could well mean it attacks our heart as that is so close to where the end of the hickman line lays. As our bodies fight the illness, be it a common cold or a high temperature I would be admitted to my lovely M2 ward and be administered huge doses of infused antibiotics. My stay would never be short of one week. Take into account the cost of my bed for these seven days and the price keeps rising.
Iloprost is well past the five year marker where the cost is so incredible high due to the pharmaceutical companies needing to get back some of the costs of the research needed to get this drug out to us. Cheaper versions, and indeed the original version is now much less expensive. however for me right now it is where I want to be headed.
Selexipag is taken in a tablet form, how easy as there will be no problem with an infection travelling down the line, how simple. There would be no more taking a pump attached to our bodies everywhere we go. All the gloves, sterile equipment, lines etc would be gone, going out would be a much easier process. Sleeping with the line would be eliminated and bathing would once more be allowed! Swimming too would be back in the game Once we are on the line for most of us there is no chance to go in a swimming pool as without speciality wet suits it is a definite no go area. So many problems associated with the line.
After saying all of the above the line is so good for our hearts in every other respect. It works so much better for some of us than any form of tablet, getting straight to the heart and making every two minute infusion count.
There is much to consider by everyone due to have a say in making this final decision. We in the UK await the result (in June) with bated breath. It will be so interesting to see the end result. I for one hope that despite the cost we are to be allowed to have it. We are an orphan group, there are not very many of us here in the UK with ph and for so long we were way behind in the fight to get us a cure or even more medicines We are well up there now though and so I hope that a good and right decision is made when all these knowledgable folk get together. I feel sure that there will be specialists fighting strongly for us to have this drug in the UK as it is allowed now in the USA and other countries. See link below
Ceramics
Back with a vengeance to my class to be told I was to make a BOAT. This means design too so we were all put to the task of deciding which type of boat and what was needed to be added to mark it out as so personal to each and every one of us. I have decided on a fishing boat so part of yesterday was spent going around the Range to see what I could find that could be added after the glazing and firing had been done. I have come up with a few ideas. My hulls finished and I now need to make my cabin compete with widows and I shall make that this afternoon. As my ceramic head went down well I am hoping this does too and I learned such a lot when doing my lady so I hope to improve on this greatly. { gosh just had one of those moments when you think you have deleted all the post} pleased I hadn't.
Shoes
Like most women I believed I had too many shoes so I resolved to set about sending some to the charity shops. My shoe rack in our storage room was full as was the one in our wardrobe and so too was under the storage box under our bed. I piled them all on the floor and set too, I was determined to be ruthless. However as soon as I saw just what had been lurking under the bed I decided on a different strategy. Yes the shoes that had been easily accessible over time I did look at with a new eye, I have indeed taken many to the charity shop but the ones lurking under the bed have been given a new lease of life. Most of them had only be worn once, twice at the most because they were inaccessible to me with ease as even though the bed has a gas cylinder to help lift the bed and the mattress it is still too heavy for me so there the shoes stayed, untouched and unloved - but no more. I now have shoe racks filled with shoes that are "new" to me so I look forward to wearing them at last. Result.
Izzy
Izzy has begun swimming lessons at a new class this week and I am told that it is much better. The teacher is stricter, this is so needed with Izzy who doesn't listen to what she is to do. When she so clearly was too busy looking around her this week when given instructions the teacher was so swift to tell her to LISTEN. Hopefully she will come on even better now that this is the case. After the lesson she stayed in the pool in the other side and had playtime. She enjoyed this very much and had chance to practice what she had just been taught.
Holidays are upon us again, school is set to close for over a week. Izzy will be going away in the motor home for three nights so she is excited about this. I will be home alone! I don't mind this at all and it gives me a chance to catch my breath, or not in the case of ph patients. I shall take time out to look through my wardrobe and get rid of any clothes not been worn over the last two years. I know they say a year but no, not for me as I know that as soon as I get rid of the article I decide I need it. I am sure most women know this feeling well. Izzy will come back happy and refreshed after a few days away and I shall have a much needed updated wardrobe as it maybe necessary to buy some new ones if I get rid of enough old ones!!!!! well I do have holidays coming up!
Old friends
We were able to catch up with some friends of ours not seen for years. Well technically they are my daughters friends and have been for many a year, they all worked together. Now one of the couples live in Glasgow and so none of them catch up much any more. This couple have just had a new baby, Daniel, adorable he is too and so they came to visit my daughter and to show her the new addition to the family. Izzy was so excited to see Brooke, her friend since birth and to also see Daniel. I was invited down to my daughters to meet up with them as the last time I saw them was at their wedding when my daughter and my grandaughter were bridesmaids for Lisa. It was lovely as a third friend of the group went also and Chris was there with Harrison so all in all it made for a large very merry group. Such a lovely end to the weekend.
How profound
I was watching a programme last night and in it one of the characters said to another something like this....... there are not enough good days in front of us to make up for all the bad days so we must make the most of each and every day. It made a lot of sense to me so we really should cut our the rubbish in our lives and make every day count. It works for me.
Enough now, I have to get to the hairdressers to get my fringe cut ready for the holidays. I hate the new cut feel of my hair before I go on holiday, I can never manage to get it how I like it so a fringe lopping will do.
Have a good day everyone and once again thank you so much for liking this blog, clicking the like button and for those that share, again thank you so much.
Warm love to each and every one of you.
Carole xxx
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