Hope you are all doing relatively well given all our health problems lol. I had my right heart catheter procedure on 20 June and my specialist nurse gave me a call. My heart is not under stress which is absolutely fabulous news - I am so pleased about that. The blood pressure in the arteries of the lungs is at 67 which is high (the heart consultant said he likes it to be at 20 and below). I am on Bosentan 62.5 mg which they have decided to double and they are introducing a new tablet and they hope that this will bring down the blood pressure in the arteries of the lungs for me (known as pulmonary hypertension for those that don't know). They say that my lungs are stable on my chemo which I will be on for life as my immune system is attacking my lungs so they have switched off the immune system to stop it being able to. They also say that the pulmonary hypertension is linked to my CREST syndrome which they seemed pleased about, well it is supposedly better that it is linked to that than my pulmonary fibrosis. So all in all brilliant news.
Plus yesterday I received the outcome of my PIP review, and blow me down with a feather I got what I deserve which is enhanced daily living and enhanced mobility - I was ready for an appeal if that had not been the result lol, but I am glad that I can put the boxing gloves away as it is too hot to fight......
Plus the tax man sent me a letter telling me I had overpaid tax and to claim it back.
They say good luck comes in 3's - it sure has done for me.
Have a fabulous day all. I will be chilling today - the excitement of all the good news has wiped me out lol (think the sun, my PF, my PH etc has something to do with it too).
Regards Karen x
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It's so nice to hear of someone's good luck ! Glad that everything seems to be going well for you. I'll be hiding from the sun again today as the weatherman said it could get to 32 or 33 ! If I had the energy I'd do a rain dance. Take care, Sheila xx
Hi Sheila, I am taking the good news whenever I can get it these days. With the severity of my lungs my specialist thinks I may have about 2 years (I so hope I proof him very very very wrong).... I am hiding in the bedroom as it is the coolest place in my bungalow - the heat is definitely too much for me today.
Hope we get a cooler day tomorrow so you and I can enjoy it lol.
It is a long process. The form is long. It's worth it if the end result is that you get what you deserve. I had a home visit for the initial application back in March 2017 and again for the Review earlier this year.
The sooner you complete the form the better because if you are given it they back date it to when you applied. The longer you leave it the less back pay if you get it.
I wish you all the very best with your application
I have similar problems Karen, I have PAH. Just discovered in January. So far only experimenting with different medications. Wish you all the best!!!!!
Hi Karcsi, thanks for your message. I wish you all the best too with your meds for your PAH, hope they get it under control and you don't have any side affects from the meds. Take care Karen
Thanks for the kind words Karen, my pressure in my lung was 54, than the doctor gave me tadalafil 40 mg, 2 months later amlodipine 5 mg and 2 months later again he wanted me to try volibris 5 mg to open up the vessels in the lungs. The reaction to the latest was so bad, I had swollen ankles, feet, knees, thighs. Now I have to wear compression stockings. I also take diuretics, 80 mg twice daily.
I'm on oxygen therapy as well.
So far no medications improved my oxygen saturation significantly. Resting is all right, around 88-90 but when I take a walk it drops back to 78-80.
How about you Karen?
I hope you are doing very well and enjoy life to the fullest.
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