Pulmonary hypertension & Cor Pulmonale - Lung Conditions C...

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Pulmonary hypertension & Cor Pulmonale

Maisy54 profile image
12 Replies

I would love to hear from anyone who has this condition and how you cope with it and any treatment you are having.

I am still waiting to see a lung and heart specialist and feeling very anxious about what the future may hold for me

12 Replies
Katinka46 profile image
Katinka46

Hello Maisie

I am interested in your post. May I ask you a little about your history?

What are your symptoms and what led your doctors to refer you for investigations for PH and Cor Pulmonale?

PH has a few causes. It can be idiopathic, but is often caused by other conditions. Have you got unresolved blood clots that are causing chronic thromboembolic disease (CTED)?

I have CTED but it a matter of dispute about whether that is causing PH.

The first test for PH would be an echocardiogram. I assume you have had that which is why you are being referred for more investigations.

All the best

Kate x

Maisy54 profile image
Maisy54 in reply to Katinka46

Hi Kate,

Thank you so much for your response. Around 2 years ago l started to experience severe chest pains, the doctor diagnosed me with fibromyalgia and prescribed pain killers.

The pains continued and l started to get fatter and fatter, despite dieting. One day l just collapsed and was rushed to the hospital. I had blood clots on the lungs, it was touch and go, but after a week l started to recover. Then whilst still in hospital l caught Covid. I was in hospital for a month and during that time they got of 60 pints of fluid.

I left hospital feeling much better and was prescribed a blood thinner and water tablets and put on oxygen 16 hours a day.

Because of Covid it was difficult to get follow ups with a consultant. I was constantly tired and easy out of breath, but doctors put it down to long covid. Then a few months ago my condition worsened.

I went into A and E with the same chest pains that l had experienced before and extreme swelling of stomach and legs.

They assured me it was impossible to be blood clots as l was on blood thinners. They said it was muscular and to take pain killers.

I was at rock bottom by this time both mentally and physically, but fortunately for me l had an appointment with a respiratory consultant a week later.

I was admitted into hospital immediately and put on a furosemide drip for 24 hours, for ten days and lost 70 pints of fluid. They they said that l did not have blood clots, but diagnosed pulmonary hypertension. After a further week of tests, they admitted that they now realised that l had been having re-occurring blood clots.

I was devastated and cried for hours as l knew the pain was the same as before !!!

Further tests diagnosed cor pulmonale and they said that both my lungs and right side of my heart was damaged. I was also diagnosed with sleep apnea and put on a CPAP machine at night. They changed the blood thinners for Warfrain and increased my water tablets.

They have referred me to a hospital in Glasgow that specialises in my condition. There is only one hospital in Scotland that deals with this condition, so l am unsure how long l will have to wait for an appointment.

I am feeling very down as l can't seem to find a group that supports my condition. I would just love to hear from anyone who has the same condition.

So very sorry for such a long post !

Katinka46 profile image
Katinka46 in reply to Maisy54

Dear Maisie

I am horrified by the way you have been treated. It is just appalling. There is a pulmonary hypertension unit at Glasgow and you are going to the right place at last. The clots have blocked the blood vessels in your lungs causing the blood to back up into your right heart and cause cor pulmonale (right heart failure) hence all the fluid retention. It just might be possible for you to have an operation called pulmonary endarterectomy. They go into the blood vessels in your lungs and pull out the blood clots that have now caused scar tissue. But not all patients are eligible for that. There is a Facebook group : CTEPH UK. You will get a lot of support on there. I am so sorry you have had all this. Making complaints against doctors and hospitals is not easy but I do think that heads should roll for the dreadful neglect you have had.

Love Kate xxxx

Katinka46 profile image
Katinka46 in reply to Maisy54

Whoops… Apologies, I have just checked that Facebook group, it is called UK CTEPH. CTEPH is chronic thromboembolic pulmonary hypertension. I am still reeling from your nightmare story. I am afraid it is very common for women to be treated like that. Xxx

Maisy54 profile image
Maisy54 in reply to Katinka46

Hi Kate,

Thanks again for responding. I have looked at the Facebook page, but unfortunately you can only post under your real name (understandable) and unfortunately l do not want to do that at this stage, as l have only told closest family and friends so far.

The information you have given me has been a big help, as it has helped me do more research on treatments available.

Alberta56 profile image
Alberta56

Welcome to the forum. I can't answer your question, but I hope you soon get to see people who can.

Maisy54 profile image
Maisy54 in reply to Alberta56

Thqnk you for your response, l have given some more information which may help.

Alberta56 profile image
Alberta56

katinka seems to know more about your condition than the people who have been dealing with it. Fingers crossed that your appointment comes soon.

Maisy54 profile image
Maisy54

Thank you so much for your kind words. I think once l see the specialist l will find it easier to come to terms with things. Hopefully they will be able to give me some hope of possible treatments 🙏🏻

Kate124 profile image
Kate124

i have this condition. Confirmed diagnosis with right heart catheter last May. Im on oxygen 24/7. Tadalafil ambrisentan and blood thinners. Its a horrendous illness that restricts what you can do. So frustrating. I was mis diagnosed for years. People caught early enough can live near normal lives. Good luck with your treatment. If you want to ask anything feel free, even private message on Facebook. My name on there is Kathleen Ward. My photo shows me on scooter. X

Maisy54 profile image
Maisy54 in reply to Kate124

Hi Kate,

Thank you for your reply. It must be so upsetting that you were misdiagnosed for so long. The medication that you are on, has your consultant said what sort help this could be long term ?

Having done a lot of googling about our condition, it looks such a bleak prognosis 😢

Kate124 profile image
Kate124 in reply to Maisy54

unfortunately there are no other meds for me. Was given 6 to 12 months last May if the meds didn't work. Thankfully they are working a little. But not enough to get my life back. But I'm thankful to be here and see my new granddaughter's.

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