Scary Cardiologist and his prognosis for me – I’m petrified.

[Cris]

puddy68, Well, THAT doctor sure has a sunny bedside manner, doesn’t he? Don’t totally flip out, at the time of diagnosis, most of us got the “death sentence” as well. While it IS a chronic, progressive disease, there are people who have lived with this for 20 years or better. Read all you can from reputable sites, ask questions and don’t forget there’s always a second opinion. Keep us posted.

[jen-cueva]

I agree, @Cris Dingman. That is not an excellent bedside manner. It would make me seek another, much more friendly and helpful doctor. We trust them with our health, and we need to feel comfortable with their care.

I, too, was told 3-5 years and will celebrate my 20th PH anniversary in February!

I hope you are doing well and keeping cool. Thanks for your support!

[puddy68]

Thanks so much, jen -cueva. As I mentioned to Cris, I am certainly getting a second opinion. Thank you so much, too, for alleviating my anxiety….it is extremely crippling and I find it hard to leave the house. I’m a teacher, and school term starts next week, and I am so dreading those first thoughts that I have as soon as I wake up that I’m going to die and not see my son and husband again. To have these thoughts whilst driving to work with tears pouring down your face, I just can’t describe them to you. Thank you so much for sharing positive stories as these really help. God Bless.

[puddy68]

Thank you so much, Cris. Your words are comforting and sensible, and I’ve been on the phone this morning to arrange a second opinion. Thank you again. Good Bless.

[Terese]

Dear Puddy68,

DON’T FREAK OUT! OK, so you did. This diagnosis is not a death sentence. It is chronic, but manageable, like diabetes. Read all you can. One of the members of my support group has had PH for over 15 years, and she’s still a busy, vital person. You learn to cope, to adjust, and to take deep breaths and realize you can’t do everything you used to do. So what? There are other things you CAN do.

And yes, I have asthma, and my pulmonologist treated me for COPD and Sleep Apnea, before we found that I have the CTEPH variety of PAH, caused by blood clots in my lungs. And I did freak out when the surgeon explained about PET surgery for me. But I did it, and while it may not have cured me, it sure as heck made a difference. I’ll be celebrating 5 years post surgery this year, and plan on many more anniversaries. So know that we are all here for you, and we all care and understand. Stay with us, and vent all you need. We offer virtual hugs whenever needed.

[jen-cueva]

Hi @Terese Tuohey , yes, I think many of us freaked out when diagnosed, especially when we were told PH is a death sentence. Fortunately, with research and funding, many new treatments and more are coming later this year!

Yes, many with CTEPH have surgery and do well afterward. If PH is caused by COPD, it, too, can be treated. While there is no cure, we do have these treatment options to try and help ease some of the symptoms and slow progression. Well said, my PHriend. Thanks for the support!

[puddy68]

Thank you, thank you so much for your message, terese-tuohey. Your positive messages of hope mean the world to me, and I really mean that. I know it sounds corny, but these messages actually help me sleep at night. God Bless you.

[Roger Bliss]

Sounds like your doctor isn’t all that great. I have had to go through several doctors to find competent ones. In my experience cardiologists don’t know that much about PH, they just think they do. Sounds like you have more lung problems going on than heart. I would suggest finding a doctor that specializes in PH. If you can’t find one at least get checked out by a pulmonologist. I have found the best doctors are the ones who work at teaching colleges. They have office hours and teach new doctors.

[puddy68]

Thank you Roger – bliss. I have found a Pulmonary Hypertension Clinic at one of our hospitals in Melbourne, and am applying to there for a second opinion. Thank you so much for your kind words of support, it means so much that someone is out there to help. Thank you so much again. God Bless.

[Hilda]

Hello to all the phriends community. Human emotions are impossible to control. It is normal to have strong emotions to unexpected situations like uncomfortable news regarding health issues. Let me ask a parallel question, how do manage your emotions when you take car drive, an air flight. Most likely is normal, no emotions whatsoever because you don’t think about having accidents that may change your life. Health issues change lives in many ways. Pulmonary hypertension 15 years ago had few medications options and a death sentence of approximately 6 years. Thanks to advances in medicine nowadays, better recognition of conditions and awareness, that has change to a much better outcome. Today we enjoy variety of treatments and that fear death sentence is gone honestly. Be positive, confident, you have done a very great job joining a support network where you can enjoy different opinions and learn from others their journey. Remember, not everyone walks the same route, since each one has other attachments involved including conditions that influence the clinical presentation. Hang in there, wish the best.

Keep smiling, make happy memories ❤️❤️❤️🌹🌹🌹

[puddy68]

Thank you so much, Hilda, for your words of support, I really appreciate them. Thank you so much once again. God Bless.

[jen-cueva]

Hi @puddy68, I’m so sorry that the doctor was so dismissive. If it were me, I would be sure you see a trained PH specialist. You can use this PHA Find a Doc link to add your zip code, which populates by distance. You may slip through the cracks if you do not see a truly knowledgeable PH team.

https://phassociation.org/patients/doctorswhotreatph/

We’ve all panicked and freaked out! PH is overwhelming, but indeed, not a death sentence. I wiill be diagnosed for twenty years in Feb. 2025! For me, it’s all about my PH healthcare team, and I am thankful for the research; I’m still only on oral medications.

Most PH doctors have the specific tests they want, usually multiple tests, like an Echocardiogram, Chest x-ray and CTs, right heart catheter(RHC), labs, pulmonary function tests(PFTs), and Six-minute walk tests. I’ll tag you in a post that talks about these tests more.

You certainly may need to get a second opinion. I know two months sounds long, but that can also be the case for other PH teams. Telling you you don’t need medications without these tests is concerning to me.

We are here for you and ready to help you as much as possible. Other forum members have shared their thoughts and support, and I, too. I know that helps. Together, we will get through this new journey!

💜

phassociation.org

Doctors Who Treat PH - Pulmonary Hypertension Association

DOCTORS WHO TREAT PULMONARY HYPERTENSION PHA provides the following lists of physicians who treat PH as a service to patients and does not specifically endorse any individual physician. All information has been provided by the doctors so that you can … Continue reading

[puddy68]

Thank you so much again, jen-cueva……I really appreciate your words of support. God Bless.

[Colleen]

@puddy68 is your cardiologist a PH specialist. I’m concerned that he is waiting until your ultrasound in September before considering treatment then in his next breath he gives you a survival rate of 2 years. If he isn’t a specialist I suggest not asking, but telling him you would like a referral to a specialist.

As far as the survival rate he spouted…2 years is a common estimation that many PH patients have been given and many have gone on to be long term survivors. A PH diagnosis is scary and the way you and are feeling about it is valid. Knowledge helps ease the anxiety a little and joining the PH forums is a great start. We are here to offer our experience and knowledge as well as lend a listening ear any time!