Wellness

[charlestownliz]

I have recently been diagnosed with Severe Pulmonary Hypertension.  Has anyone had any experience wiith this condition?  Personally, close relative or close friend.  I welcome any information.  Have researched and it does not sound good.  Very little treatment and poor prognosis.

[on the bay]

@charlestownliz -

My mother has it. She takes Uptravi

(this comes from a special pharmacy-her pulmonologist prescrbes it), and Sildenafil. They both have helped her breathing a lot.

I hope they will help you to feel better.

She is able to do all the things she likes to do, though I think the Uptravi it can make her more tired.

The pharmacy for Uptravi calls her regularly to ask how she is doing on it, and contact her doctor if the dose needs to change based on what she reports. It did cause some pain esp in her legs when she first started so she was told to take Aleve.

[crawford5153]

charlestownliz, I may have it but not sure until I reschedule my appointment for the exam.  I happened to be out of town and had to cancel the original appointment.  I will see when I go back to the doctor this fall and reschedule the appointment. My doctor thinks if I do have it is because of my sleep apnea.

What tests did your doctor run to diagnosis you with the condition?

[gizmogal]

Very thorough article discussing risk factors, causes, and treatments for this diagnosis. From the Mayo Clinic:

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

I have no anecdotal experience to offer. It does sound like this condition can be treated and controlled to give a better outlook. Rely on doctors and recommended prescriptions or therapies from medical professionals. Everyone’s bodies are different and second hand advice is not always right for you. 

Best of luck!

[Mindy D]

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@charlestownliz wrote:

I have recently been diagnosed with Severe Pulmonary Hypertension.  Has anyone had any experience wiith this condition?  Personally, close relative or close friend.  I welcome any information.  Have researched and it does not sound good.  Very little treatment and poor prognosis.

---

There are five types of PH. Outcomes and treatments vary according to which type you have. It is advised that patients be treated at centers that specialize in this. If you are able to read and understand medical literature meant for medical professionals I will provide two links to Medscape. Even if you have trouble understanding some of the literature the articles will give you complete information and you can use this to ask your doctors about sections you read. I do warn you that reading this might scare you so skip it if you are not up to it. 

https://emedicine.medscape.com/article/303098-overview

https://www.medscape.com/viewarticle/456942

✅Listing and map of centers that specialize in PPH 

WHERE YOU CAN GET SPECIALIZED HELP IN THE USA

This listing could be misleading as to the extent the hospitals on the list provide expertise. Please use caution with this provider list. 

https://phassociation.org/phcarecenters/accredited-centers/

Pulmonary Hypertensioan Association website

https://phassociation.org/

[hckynut]

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@crawford5153 wrote:

I may have it but not sure until I reschedule my appointment for the exam.  I happened to be out of town and had to cancel the original appointment.  I will see when I go back to the doctor this fall and reschedule the appointment. My doctor thinks if I do have it is because of my sleep apnea.

What tests did your doctor run to diagnosis you with the condition?

@crawford5153 

Ain't no way in he!! I'd have cancelled an appointment, and then be waiting till Fall, if my doctor even slightly suggested Pulmonary Hypertension. This is a very serious problem that can effect both the Lungs and the Heart. 

I have dealt with 2 potentially deadly episodes with both. Have had 2 episodes of Pulmonary Embolism(PE), along with 2 Heart Attacks. Was also diagnosed with Congestive Heart Failure(CHF) after Heart Attack #2.

Echocardiograms are used to detect many functions of the heart and lungs. The Echocardiogram was the tests run to find my Ejection Fraction(EF) for my CHF, and a VQ Scan was used to detect my PE back in 2002 and 2003. I think they have other methods now to detect PE. Believe it is some sort of CAT Scan.

Any issue that involves both the Heart and the Pulmonary System(Lungs)?  Delay at your own risk.

hckynut

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[sidsmom]

My Plant Based Doctor has been around long enough (70s)

to have a success story with almost every type of condition.  

Is this the condition you have?  Her email address is below...

doesn’t cost anything to reach out.

Hopefully this will help. 

[crawford5153]

---

@Mindy D wrote:

---

@charlestownliz wrote:

I have recently been diagnosed with Severe Pulmonary Hypertension.  Has anyone had any experience wiith this condition?  Personally, close relative or close friend.  I welcome any information.  Have researched and it does not sound good.  Very little treatment and poor prognosis.

---

There are five types of PH. Outcomes and treatments vary according to which type you have. It is advised that patients be treated at centers that specialize in this. If you are able to read and understand medical literature meant for medical professionals I will provide two links to Medscape. Even if you have trouble understanding some of the literature the articles will give you complete information and you can use this to ask your doctors about sections you read. I do warn you that reading this might scare you so skip it if you are not up to it. 

https://emedicine.medscape.com/article/303098-overview

https://www.medscape.com/viewarticle/456942

✅Listing and map of centers that specialize in PPH 

WHERE YOU CAN GET SPECIALIZED HELP IN THE USA

This listing could be misleading as to the extent the hospitals on the list provide expertise. Please use caution with this provider list. 

https://phassociation.org/phcarecenters/accredited-centers/

Pulmonary Hypertensioan Association website

https://phassociation.org/

---

Thanks for the useful information!

[crawford5153]

---

@hckynut wrote:

---

@crawford5153 wrote:

I may have it but not sure until I reschedule my appointment for the exam.  I happened to be out of town and had to cancel the original appointment.  I will see when I go back to the doctor this fall and reschedule the appointment. My doctor thinks if I do have it is because of my sleep apnea.

What tests did your doctor run to diagnosis you with the condition?

@crawford5153 

Ain't no way in he!! I'd have cancelled an appointment, and then be waiting till Fall, if my doctor even slightly suggested Pulmonary Hypertension. This is a very serious problem that can effect both the Lungs and the Heart. 

I have dealt with 2 potentially deadly episodes with both. Have had 2 episodes of Pulmonary Embolism(PE), along with 2 Heart Attacks. Was also diagnosed with Congestive Heart Failure(CHF) after Heart Attack #2.

Echocardiograms are used to detect many functions of the heart and lungs. The Echocardiogram was the tests run to find my Ejection Fraction(EF) for my CHF, and a VQ Scan was used to detect my PE back in 2002 and 2003. I think they have other methods now to detect PE. Believe it is some sort of CAT Scan.

Any issue that involves both the Heart and the Pulmonary System(Lungs)?  Delay at your own risk.

hckynut

---

---

Hckynut, I just called and got an appointment for this coming Monday August 5.  It will be an echocardigram that I will be having.  

[SilleeMee]

I was diagnosed with scleroderma AI disease in 2002. This comes with a number of complications including PH. In the beginning of the onset I was put on several drugs. Every year I get an echocardiogram and a PFT (pulmonary function test) . I no longer need the drugs but now they have discovered I have hardening of my mitral valve and basically it's a ticking time bomb with no option to replace it. I just live with it and suffer quietly in my private moments. I try not to think about it too much but sometimes that's not easy to do.