Living with pulmonary hypertension

[patkj]

Diagnosed with pulmonary hypertension 6 mo. Ago totally confused and been given very little info by Drs

[Hidden]

I have pre hypertension AND that's pits.

Am sure you can have pre hypertension that causes pulmonary hypertension yet trying to get doctors to talk about anything IS like trying to pin tail on a donkey.

The elusive and full of most of them.

[vlarryj77 in reply to Hidden]

Hidden

Sorry your so angry about being ill. However, since the doctors won't tell you I will. Your condition can be cured where as mine can not. So see a different doctor and if you are in the UK go to one of the PAH centers they have out there. Do something now instead of waiting until it is too late. If you pester the doctor and he doesn't tell you then he really doesn't know what is wrong.

[Inamoment in reply to vlarryj77]

It's not curable?

[PastMeBest]

Hi patkj a very warm welcome to our community. It is not to best time to put a post on as most people are now in bed.

It is not very good of your doctor diagnosing you with Pulmonary Hypertension and leaving you in a confused state. He should have explained your diagnosis properly and detailed any treatment available to you. If your doctor isn't able to treat you themself you should have been referred to a Pulmonary Consultant. If I was in your position I think I would be looking for another doctor. One who is willing to listen to your questions, answer them and arrange suitable treatment.

I don't know a great deal about Pulmonary Hypertension but do know that it is to do with high blood pressure in the Pulmonary Arteries and shouldn't be taken lightly. As far a I know specialist treatment is available.

I don't know what part of the world you live but that will have an effect on what treatment is available. I am in the UK and we have members from all over the world so someone should be able to help you with more information.

Knowing a bit more about yourself would also benefit anyone trying to help you.

Hopefully someone will come along in the morning with more knowledge than myself. Feel free to ask any questions

Can I just warn you not to use Dr Google to search for answers. There is a load of bad information out there that will frighten you. It's best to ask on here where people with the same condition as yourself will give you honest answers to your questions.

Try not to worry.

Regards. John

[vlarryj77 in reply to PastMeBest]

Pastmebest, sorry but it doesn't matter what time of day or night someone writes on here. I do not mean to sound rude and I can not think of any other way to put stuff except to be honest about what a person feels. My mind believes in truth not fiction. Anyone that writes on here is putting stuff that is on their mind and feelings at that time of day or night. It should not matter what time it is.

Hope you are having a better day Past.

[Hidden]

Good morning patkj,

Wish I could help you, but I don't know anything about the condition. Hang on patkj, members will be waking up shortly and hopefully be able to go into detail for you and offer sound advice.

[Katinka46]

Who diagnosed it? And what is the cause (there usually is one)? Do you have the actual numbers of your pulmonary arterial pressures? Which is a way of gauging how severe it is? If you have PH then you should be referred to one of the five PH centres in the UK. Has this happened? Sorry to bombard you with questions but these are the ones that immediately came into my mind.

I do know a little about it as I have a condition that often causes it and have been referred to one of these centres. So far, on a recent Echocardiogram, I only have mild PH.

Please let me know a little more.

All the best

Kate xxxx

[vlarryj77 in reply to Katinka46]

Sorry Kate

[Jinty65]

There is some information on this website. phauk.org If you're in the UK you can join for free and they will send you an info pack. As I understand it, if various tests like echo, PFTs, scans etc indicate PH then the gold standard is right heart catheterisation to determine the diagnosis definitively. Try to ensure you attend a centre which knows about this condition. Here is a UK list phauk.org/treatment-for-pul...

[vlarryj77 in reply to Jinty65]

I didn't need a test to know I have PH Jinty65. After the CT scan with and without dye you could see the difference. But then again I am one of those unusual cases with a long history of illnesses. phauk I do agree with one thing if your doctor has told you that you have PH without a full CT scan then I suggest you get a different doctor. I am not one to mince words and it has nothing to do with my dying from PH. I have beaten many odds in the past and plan to stay here as long as I am able.

You can do the same in beating the odds so hang in there.

[Dedalus]

Welcome to the group patkj

[Bwebb]

Welcome to the site. Though I don't post often I do read and glean much information from this great forum. Would you be so kind as to tell us your symptoms? I have dyspnea on slight exertion and am still looking for the cause,(for many many years). Hope you get answers and relief.

[vlarryj77 in reply to Bwebb]

Bwebb, what tests have you had if any? Keep your chin up

[Bwebb in reply to vlarryj77]

Vlarry

So sorry that I didn't answer sooner. Been very busy out of town. I've had probably most every test known to man and so far no definitive answers. I am 72 and have had the problem all of my life. I do have some great doctors trying to find the answer, finally. Should know more soon. Thanks for caring. This is a great site.

B.

[vlarryj77 in reply to Bwebb]

Please don't feel sorry Bwebb. We all answer we are able to. At times I go through depressions and don't want to talk to anyone myself. Myself I am dying from this and I have come to terms with that fact. But at the same time it doesn't mean I won't fight until the end!!!

I have 3 Grand kids I want to see and play with before I pass on.

[Bwebb in reply to vlarryj77]

Hope you get a lot of quality time with them.

[JayneO]

Hello

I was diagnosed with severe PAH last year, which has been induced by a disease I have called Scleroderma! I go to one of the specialists units, Bath & London and the treatment and medication I have been given is second to none! You need to get a referral, and they will then give you echo's etc, I have had 3 RHC 's since last September, and with medication etc my pressures in my lungs have halved, taking the disease to mild!! This is a very challenging illness and you have my sympathy, it's not curable, but they can help you feel much better. Hang on in there, it can only get better. Message me when you want, I really do understand what your going thru, as suggested in another post, the PHAUK have loads of information.

Take care Jx

[patkj in reply to JayneO]

Facebook: [e-mail]

[valpappas]

I too have P.H The P.H.A have web site plus facebook site. Have you been refered to a P.H. unit. Please get in touch as I can point you in the direction for help.

[patkj in reply to valpappas]

[e-mail]

[patkj in reply to valpappas]

I'm in the. USA, and have a pulmonary doctor. Had a right heart Catholic which helped confirm the diagnosis. Been placed on a drug that is mfg. in Switzerland called Optsumit. I also have heart disease. Have enjoyed reading you guys messages.

[patkj in reply to patkj]

Not Catholic catherization

[Offcut]

As people have said on here a little more info would be good. It was poorly explained to me by a GP that knew little about it, as I afraid it seems is not unusual.

I have mild PH and have other issues as well so the combination of the PH and other conditions can affect the breathing. Depending where in the world you are, you will need to see a specialist in PH to get a good diagnosis and treatment.

Be Well

[Bagpuss1972]

Hello patkj, and welcome to this fantastic forum. I've just only seen your post as have been offline for a few days. I'm 44 years old and was diagnosed with Pulmonary Hypertension caused by Scleroderma 7 months ago and now receive specialist treatment from Sheffield Pulmonary Vascular Disease Unit and The National Scleroderma Centre in Salford UK. Sorry to hear that you have received so little and very confusing information. I agree with JayneO and Jinty65 that there's lots of really useful information on the Pulmonary Hypertension Association's website at phauk.org/ and there is also a US site I'm registered with myphassociation.org

When I received my shock diagnosis back in December I was utterly devastated and so can completely understand how you must be feeling right now and really hope that you can get some clear answers from your medical people and access the best possible specialist treatment. Just wanted to let you know that you are not on your own and there's many others who are going through the same daily challenges from this disease and am sure you will make many friends here. I would be really happy to chat with you anytime. Big hugs x

[patkj in reply to Bagpuss1972]

Thanks for your input. I too have joined muphassociation. Take care😏

[vlarryj77]

I also have Pulmonary Hypertension. I have for several years but didn't know what it was until too late. Is there any questions you need answered? I just started the Living with PH blog, communities or what ever they call them.

[vlarryj77]

I was going to start this but found yours was already up and going. People need to know the truth about pulmonary hypertension and how to deal with it.

[Inamoment]

I thought that an echocardiogram would be more useful than a CT scan. I've had every sort of scan going, but the ecg lets the operator work out the pressure in the lungs (by measuring the backflow through a heart valve amazingly). I think an angiogram gives the best data, I had one of those too but some time after the hospital said I had PAH.

[Samcar]

I agree Peter, angiogram to measure pressures then follow ups with echoes.

[vlarryj77]

I don't mean to confuse anyone about the testing. My body grew at different sizes due to Polio and Cerebral Palsy during childhood. My heart is on the right side of my chest as to where yours is on the left. Here is how my body grew; if you split down the middle from head to toe, one half grew larger than the other. Sounds like science fiction doesn't it. But it did happen and I do not walk like I have a limp or look weird, (I guess after 38 years of marriage my wife thinks I am), it took a couple years of leg braces to prove the doctors wrong about walking correctly but I did it. Anyway, sorry I have a bad habit of rumbling on. My lungs, kidneys and all my insides grew at different sizes also. I didn't know about this until I had my CT scan. You would think doctors would ask if a person knew this about them self but they don't even after cutting you open. I have a scar from surgery that is about 6 to 9" long on my back. My Wife calls me Frankenstein put together backwards, it is all in fun and we take it that way. But back to the testing, my CT scan, after you enlarge the view, you can see the difference in sizes so there was no need for more testing. Just the chapter in my life that I can not win or walk away from this time. So my body goes to science and the rest to be donor if possible.

[Inamoment]

The Brompton gave a me a book called Understanding Pulmonary Hypertension by Iain Armstrong. I think it is published by PAHUK. It is very well written and has a lot of information, may well be worth your while looking through