pulmonary fibrosis and pulmonary hypertension.

[parkey58]

i have PH and PF, when i have a bout of breathlessness i get quiet bad pain across my abdomen along the base of my rib cage , my doctors dont offer any suitable suggestions as to what it may be ,does anyone have similar symptoms and offer any sugesstions as to possible treatments .

kind regards

parkey

[Katinka46]

I can’t really but I am interested in your case. Are you happy to tell us a little more about it? When were you diagnosed with these conditions and by whom?

I have chronic thromboembolic disease, possible PH, and a small airways disease, obliterative bronchiolitis. Which may be similar to your situation.

[parkey58 in reply to Katinka46]

hi katinka46

i was first diagnosed with copd many years ago for which i have had a lot of help from variouse nhs specalists and consultants , as the years went by my condition worsened and turned to emphasemia, which i was still able to cope with then about 18 months ago i was suddenly stopped in my tracks with loss of breath , it was then that PF and PH began to appear on my consultation reports since then i have had 2 stays in hospital where they were able to calm my condition , i have been on 15hrs a day oxygen for the past 4 months which as helped a little , but it seems my options for treatment are limited and the doctors and consultants are very shy about giving any definative diagnosis ,which is why i posted my previouse question . if any one can offer any suggestions i would be very gratefull

kind regards

parkey 58

[Katinka46 in reply to parkey58]

You are having a tough time. I am sorry to hear that. I think your consultants could be a little clearer with you. But lung diseases can be tricky to pin down. Mine are rare and it took years before they were taken seriously. Even now I struggle with some doctors. I get chest discomfort all the time, it gets worse later on in the day and is at the top and the front. I think it is caused by PH but that is still disputed territory for my doctors. Long story…. An anaesthetist is confident that I have it. And it contributed to her assessment of high risk for knee surgery. So I have decided not to go ahead with that. The orthopaedic surgeon said he was relieved when I told him.

Can’t really help about your abdominal pain but I think you should politely push your doctors. Could it be something that is not related to the lung problems?

All the best

K x

[parkey58 in reply to Katinka46]

thank you for your comments and kind word , good luck as you go forwards with your problems stay positive and keep well

good health

parkey

[Comcerned in reply to parkey58]

Research CMV virus, It stays dormant until your immune system is weak. 50% to 80% have it. If they have you on Steroids that would weaken your immune system and also being on steroids can cause adrenal insufficiency, Most doctors don't recognize either of these.

[parkey58 in reply to Comcerned]

thanks for your comments will look into cmv and get back to you

All the best

Parkey

[valspia]

Hello, I have Pulmonary Hypertension also. I wish I could offer more help, I just know that some days are bad for me for no reason. I have a pulmonologist who specializes in PH which I feel has really helped. I feel I can really talk to him about everything. Please keep us posted, PH is not common.

Best wishes to you.

[parkey58 in reply to valspia]

thankyou for your reply as every word is helpful all the best for the future

Good luck

Parkey

[Tia4209]

If it was me I would ask my GP about the abdominal pain as most things that cause abdominal pain cause bloating and or indigestion/ acid reflux which in turn can cause breathlessness.

[parkey58 in reply to Tia4209]

thanks for that tia i did see my gp he gave me ibuprofen cream which didnt do any good ,i think its time for another visit .

all the best

parkey

[Izb1]

One thing we all have in common with lung diseases, is that we all seem to suffer acid reflux at one point or another. I would ask your doctor to look into this for you x

[parkey58 in reply to Izb1]

will do izb will let you know how I get on

Keep well

Parkey

[Piperava]

Hi, this is just a suggestion but you can more information about your condition on the Pulmonary Fibrosis facebook page. My late husband had Idiopathic Pulmonary Fibrosis the Idiopathic part meaning there is no known cause. I joined the group many years ago and although my husband has now passed away I am still on it as I feel a connection with the friends I made. The people on the Facebook page have a wealth of info as they are living with it and related conditions and are really helpful. You can also get intouch with either the Pulmonary Fibrosis Trust or Action for Pulmonary Fibrosis. Hope you get answers to your questions. Take care.

[parkey58 in reply to Piperava]

thankyou for your suggestions piperava i will certainly have a look at them ,much appreciated .

all the best

parkey

[Wendywiffle80]

I have pulmonary fibrosis and have been on oxygen for two years now due to covid, I get the same difficulties as you and have suffered with pain and bloating due to my breathing I have been really concerned about this as no one could give me any answers as to why this is happening until I went to a training school of osteopathy ( for pain in my arms chest etc) where a trainee was really interested in my condition he is in his third year of training and has tutors with him anyway all that aside he looked into my pulmonary condition and my breathing with the pain in my abdomen and has explained that due to the way I breathe it affects my diaphragm which in turn affects my rib cage causing pain, he has given me breathing exercises and strangely it has helped. it was very interesting to understand how breathing can affect so many organs in your body as well as muscle and heart. I do hope you soon get it sorted and feel much better.