Pulmonary Hypertension & Scleroderma

[Bagpuss1972]

I'm new here and a 44 year old female. I was diagnosed with Pulmonary Hypertension and Scleroderma/Systemic sclerosis and just before Christmas. A bit of a shock after going to see my GP with unexplained lethargy and breathlessness and within a couple of weeks then receiving this unexpected and life-changing diagnosis. It would be really good to hear from anyone else living with these specific conditions but also anyone else with other medical conditions for friendship and moral support. I'm currently unable to go out on my own due to mobility issues and the same 4 walls can get a bit much sometimes.

[Hidden]

Defo agree about four walls and life changing.

At least you landed at right place for bit excitment and info

O nearly forgot to say hi and welcome

[Bagpuss1972 in reply to Hidden]

Thanks for the quick reply and nice to meet you too. Excitement and info is definitely needed here !

[Hidden in reply to Bagpuss1972]

Nout wrong with having bit tad of what you like

Good for your heart and soul

[Titchy52]

Bagpuss1972 I'm so to hear your having a bad time I've started making jewellery it keeps me busy perhaps you could try a hobby ,and welcome to the site best wishes x

[Bagpuss1972 in reply to Titchy52]

Thanks for your reply and lovely to meet you too. Yes hobbies are a realy good idea. Am going to see if I can join the BreatheEasy group in my local area for some social contact with others outside the house that's not for medical appointments !. Take care

[Hidden]

Hello Bagpuss, and a warm welcome. Yes, I understand about the shock, but you have to adapt a little and life can still be fun. There is always someone on here to have a chat with, give advice straight from the horses mouth, or give you a shoulder to cry on, night and day.

I have copd..... have got several hobbies that don't require a lot of physical work or take me away from the house very much. I paint, make cards, embroider, do collages, use a fractal programme on my computer, birdwatch, feed local hedgehogs at night, write poetry, photography - all these things and more, and don't have to stir very far. I have lots of those things on the go at once so am never bored, get books from the charity shops or library if I don't feel like doing much. Walking my dog and then a half hour on the exercise bike or pilates dvd for old grannies at night....go at your own pace or just watch!

xx

[Bagpuss1972]

Thanks for your quick reply and good wishes. Lovely to meet you too. I am learning to adapt to things little by little. Little steps every day. Glad to hear you are managing to keep busy and as active as you can. Keeping the mind busy even if the body is unwilling seems to be the key for me right now. Take care for now x

[Katinka46]

Welcome to this forum. I have a pulmonary vascular disease, CTED, which often causes pulmonary hypertension. It does not yet seem to have happened to me but my consultant is reconsidering that dx and I am now waiting for an echo. Exercise is good for most things but a word of caution: take advice from your consultant about exercising. Gentle is probably fine, but I think intense exercise is not recommended for PH patients. I think this is because exercise increases PH in everyone and if the pressure is already up then it can be tricky. BUT I am not a doctor. Have you any numbers from echo or right heart catheterisation to show the severity of your PH?I would be interested to know.

All the best

K xxxx

[Bagpuss1972 in reply to Katinka46]

Hi Katinka, thanks or your reply and nice to meet you. My catheterisation pressures were about 50 so my PH was quite severe then but was done before I was on any meds. I've been taking Sildenafil and Ambrisentan for the last 3 months or so now and going to have an MRI in about a month to review as they can get some readings from that too. I'm currently not able to exercise; I have scleroderma too (which has caused my PH) and suffer from severe pain and lack of movement in my feet/lower legs which hinders my mobility even more. Good luck with your echo, hope you get a positive outcome. Let me know how it goes and all the very best x

[Katinka46]

Which PVDU are you attending?

K x

[Bagpuss1972]

I go to Royal Hallamshire Hospital in Sheffield

[JayneO]

Hi and welcome

I to was diagnosed with the same as you last September, my PH was also severe!! After yet another right heart catheterisation last month, they have managed to reduce the pressures in my lungs by half, my PH is now mild! I'm also glad to say I really do feel much better, in fact I would not have believed I would feel as good as I do, so hang on in there. I am under the a Royal United at Bath, and also the the Royal Free in London, the care I have received is second to none!!! I just hope that the drug I'm on for the Scleroderma will have as good of an effect on that.

Take care and think positive.

[Bagpuss1972]

Great news to hear you are doing so well with your treatment. I've been going to Sheffield since late January now. Hoping for some positive news from tests in the next month or so. Out of interest just wondered what meds you were currently on for the PH ?

[JayneO in reply to Bagpuss1972]

I have been on Sildenafil 3 times daily since September, but when I had a right heart cath done in London in December, they had made very little difference if any, so they then added in Opsumit (Macitentan) once daily, as well and I'm sure that's the one that's done the trick. I'm actually off to the Royal Free in June to take part in research for a drug they are trialing for the lung, I have already took part in phase 1. I feel I really cannot refuse as they have been so good to me, and also really helped me. My turn now to give something back.

[Bagpuss1972 in reply to JayneO]

I've not heard of Opsumit. I may be going on to Iloprost dependent on the test results. Good luck with everything, do keep in touch and let me know how you get on x

[JayneO in reply to Bagpuss1972]

I had a five day Iloprost infusion in December for my Raynauds, it did help my hands tremendously, I suppose different Consultants have different ideas on different drugs!

[Bagpuss1972 in reply to JayneO]

Impact could help with both PH and Raynauds so hopefully a big plus there.

[diesel12]

Hi and welcome, make yourself at home x

[montymillie]

hi and welcome to us lot!! its a great sight for info fun advice and a tender ear. i'm 45 I have PF and found out a few weeks ago got PH now as well. I am trying to get on tx list, but we shall see. I can't get out either so I know what you mean 4 walls and all. hope the forum opens your world a bit, it did for me!! take care martine xxx☺🌏

[Bagpuss1972 in reply to montymillie]

Thanks for your good wishes and nice to meet you. Everyone on the site is great and so welcoming. It's so good to link up with others who understand for friendly chat and support. Take care of yourself x

[proffishopper]

Hi bagpuss 1972

I too have scleroderma plus reynauds. I have reflux and sometimes bowel problems all related to the horrid disease. My last two pulmonary tests were showing a decrease in lung function, My rheumy sent me to the Hallamshire where I had numerous tests over a period of six hours, the consultant at the end of the tests said that he could not find enough evidence for a PH diagnosis. He was sending a letter to this effect to my rheumy suggesting that he sources a CT scan for me more local as I have to travel 43 miles to visit the Hallamshire . I am now waiting for an appointment.

I do hope that things settle down for you and you get medication which helps, There is so many facets to this disease that needs attention.

I am sending you all my good wishes.

Proffishopper

[Bagpuss1972]

Thanks Proffishopper for your good wishes and hope all goes well for you too. The Hallamshire have given me great care so far and I trust in their expertise to get me on the right meds to optimise my health. Keeping fingers crossed for you with the CT. let me know how it goes. Take care x