Pulmonary hypertension

[alyvonne]

Good Evening. Does anyone have out of proportion pulmonary hypertension. My husband emphysema which seems stable but the problem seems to be The pulmonary hypertension. He overnight oxygen 2.5 and 7 ambulatory. The respiratory nurse at the hospital seams to know more than the community team which he under .It does not seam there specialit. If you do have this problem do you have any treatment for the pulmonary hypertension besides oxygen .

[JANET127]

Hello, I am in the U.S. but a woman I knew had this and she was on some type of medicine that was carried in a pouch on her waist. I think it went into a port. She was accepted for a HEART/LUNG in Detroit Michigan. Her Doctor was at Spectrum Health In Grand Rapids. They have many Great Heart Centers here! The way I understood it was her blood pressures in her lungs, were too high. She also went to a Support group here..which you may find online. But first I would go to the search on this web site! These people are great! JANET127

[alyvonne in reply to JANET127]

Thank you.

[AngieB72]

I have PH and I take tablets to stabilise the pressures. You need to have a right heart catheter to diagnose it. I’m surprised that if a diagnosis of PH has been made no medication has been prescribed other than oxygen.

[alyvonne in reply to AngieB72]

Thank you.

[Inamoment]

I have pulmonary arterial hypertension which i read was not the same thing. I am on full time oxygen, less than your husband but i think it needs to go up. I have around ten different pills a day, all designed to dilate blood vessels or keep them cleaned out. My airways are okish, just scrape into the normal range. Mine is caused by blood clots in my lungs

[alyvonne in reply to Inamoment]

Thank you

[Inamoment]

Is the oxygen for the the emphysema or the ph? I have some emphysema, bronchiextasis (spelling!) And ntm but the severe pah is the problem.

[alyvonne in reply to Inamoment]

In 2015 he had a lot of test and was diagnosed as copd with pulmonary hypertension. He was passed to respiratory team . They only thing they did was put him on respiratory rehab twice until 2017. He went into hospital for a strangulated hernia. Which they did under a local because of the pulmonary hypertension. They could not get his oxygen levels up. Since then he has been on respiratory rehab again. The ABG show he needs oxygen. The respiratory team were going to take him off at one time but the nurse who did ABG said to stay on. We went to our GP he could not understand what was happening. And in the in end we did a self funding to see a consultant that said because of His pulmonary hypertension he needed to stay on oxygen . She arranged for a sleep test that showed he was hypoxic over night. The respiratory team had a MDT meeting to see if he needed lung reduction. We have since learned that they did not have all the results of the tests. The Ct scan had not been read and they did not see the letter from the consultant that said he went hypoxic over night. Someone from the respiratory team is coming out tomorrow so we wanted to be forarmed with questions for her as his lung function test was ok but his breathing getting worse. Sorry for the rant .

[alyvonne in reply to alyvonne]

His lung function test show he is stable. At his last ABG the nurse said emphysema stable just the pulmonary hypertension that is causing problem. She did say perhaps he should go to the Hammersmith hospital but our GP can not refer him and we can’t get pass the respiratory team

[janice01 in reply to alyvonne]

Shocking really, l had to go private and then transfer back to NHS.

OK if you can afford it ! 🤐

[alyvonne in reply to janice01]

We did pay for a second opinion on the oxygen. Our daughter found one of the consultants from the local hospital that we thought might be in contact with the respiratory team. She got a test done to prove my hasband was hypoxic at night . Which he was and passed the results to respiratory team. The test was done on nhs. But we could not afford to keep going back . It was more a second option. Which the consultant confirmed he needed oxygen.

[janice01 in reply to alyvonne]

Well done you!

Good luck for the future, keep in touch x

[alyvonne in reply to janice01]

Thank you

[alyvonne]

Sorry I have just sent my rant to inamoment . Would like any members comments on it . Or any ideas for questions tomorrow as it has been such a bit of a fight to get the best treatment as departments don’t seam to have the same idea

[Hidden]

Hi, I have pulmonary hypertension and was referred to Hammersmith by respiratory team at local hospital. Even though I didn't meet requirements for their meds at the time, they did a full review and I have annual check ups to look for any changes. Oxygen is the main treatment, also Fruosimide, and spironolactone in my case. I would ask again to be referred to Hammersmith, or at least they should explain why they won't, and keep pushing for it. They are the experts. It's my understanding that If you haven't had a right heart catheter they can't say for sure if you have it or not. Hope this helps.

[alyvonne in reply to Hidden]

Thank you so much

[Inamoment in reply to Hidden]

I don't understand why he has no pills and i have loads, mostly from my local consultant, sildenafil, macidentan, furosemide, warfarinn, cloppy dog roll, statin.

[alyvonne in reply to Inamoment]

I know. He has not seen a consultant since 2015 when he referred him to the community health team. Our GP would refer him to the Hammersmith if he could but he said his hands are tiered . It seams to be the area we live in. So many people seam to be having difficulty getting referred to consultants. We will ask tomorrow when the respiratory nurse comes . This was appointment made when he finished respiratory course in October so not sure what she would be able to do. It feels like we just go round and round not getting anywhere. Thank you for you reply.Feel like I am just ranting at the moment .

[alyvonne in reply to alyvonne]

he does have three sprays for the emphysema and other meds for other conditions. The respiratory nurse at the hospital has twice asked if he was on warfarin. Thank you everyone for your replies. This site is such a help with the kind people on here willing to help x

[alyvonne]

Thank you everyone for your replies. Today a respiratory nurse came out to see my husband she was excellent. She is going to resend his notes back to MDT . There is also something she wants the consultant to check out . He has had to up his oxygen but we both feel positive that things are now being sorted .