How Do You Get In Contact With Your PH Doctors?

[Vanessa Vaile]

Getting in touch with docs… wow, there’s a great article in this topic… and possibly an even better one for The Onion. I’m setting out to walk now before the day turns less pleasant but will pick this up on my return,

[Brittany Foster]

Hope you have a good walk Vanessa! Way too cold here in New England weather to walk outside. Would love to hear your feedback on doctor communication when you can! I know you’re very knowledgeable about so much and look forward to reading your posts.

[ronald cole]

I have been waiting for a forum like this Brittany, happy you’re available to me. We made friends here, although I know many others, somehow I connected with you when I first was on this wonderful site. today, I just wrote my internist, I feel terrible and know she will reply. I have a deep bronchial chest cold that could readily lead to something worse that could hospitalize me. My real concern today is when I was first Diagnosed, my Team was all over me. NOW when I go in for my 3-month checkup up, this time I will have an Echo first. IF ANYONE READS THIS, PERSONALLY I WELCOME ALL COMMENTS, BE HONEST, CRITICIZE AND GIVE ME EXPERIENCES, ALL OF YOU KNOW I AM NOT POLITICALLY CORRECT. GIVE ME YOUR REAL OPINIONS.

Last time I went in, of course, all the questions and vital signs. 30 minutes with the Doctor. He has a nurse who does most of the directing. Here it is: I said to the Doctor….” Doctor, I read about all these experimental Drugs and progress being made with PH, ” Am I eligible for any of these drugs and treatments”?
He said… Ron, currently there are 5 types of PH, You have type 2, that is your pressure in your lung at one point was 103, then after another Heart Cath, the true pressure is 83….we all know 20-25 is normal, so I have a huge pressure issue. The medications that are available do not work of type 2.! he said you have heavy water pills, you’re taking the maximum dose of spironolactone which takes bloating away, and 2 mils of oxygen and of course sildenafil? which is standard to keep your arteries open. I have had 2 major open heart surgeries and a new aortic heart valve 7 years ago. “ALL THE DRUGS YOU READ ABOUT DO NOT WORK FOR MY KIND OF PH! I often wonder if those expensive drugs a kept from me because I am 77 big pressure and on Medicare. Love to hear from anyone.
Merry Christmas and happy New year. Ron

[Kathleen Sheffer]

Ron, I think your doctor means that your PH is only a 2 on a scale of 1-5 with 5 being the most severe. Just because you don’t have advanced PH doesn’t mean you are ineligible for more aggressive therapies. Make sure you are going to a specialist who sees patients with more advanced PH who are on intravenous therapies. There are some arguments for starting aggressive therapies early on, but you definitely want to have those options available if your pressures increase.

[Brittany Foster]

Hi Ron,
Perhaps your doctor is talking about the WHO Group 2 and meant that when he said that you were a “2”. Here is what WHO Group 2 would mean according the the PH site: http://pulmonaryhypertensionrn.com/types-of-pulmonary-hypertension/

“Pulmonary Hypertension due to Left Heart Disease (Group 2)
Unlike PAH (Group 1), this group of disorders is characterized by problems on the left side of the heart. The pulmonary arteries are normal initially. Passive elevation in the pressures of the pulmonary arteries is required to achieve forward flow. Unfortunately over time, longstanding left heart disease can lead to changes within the pulmonary arteries. See my discussion on Diastolic Heart Failure. Specific subgroups within Group 2 are listed below.

1. Left ventricular systolic dysfunction (the squeeze of the left ventricle is impaired)

2. Left ventricular diastolic dysfunction (stiffness of the left ventricle leads to pressure elevation in the pulmonary arteries)

3. Valvular heart disease (either narrowing or leakiness of the left heart valves)

4. Left heart inflow and outflow obstructions not due to valvular disease and congenital cardiomyopathies (problems with blood flowing into or out of the left side of the heart not due to a valve problem)

Treatment of Group 2 PH (caused by left heart disease) focuses on the underlying problems. In patients with impaired squeeze of the left ventricle we have a group of medications that improves the left heart function over time. Patients with stiffness of the left side of the heart are treated with diuretics, blood pressure medications if their blood pressure is elevated, weight loss if they are over weight, and CPAP if they have sleep apnea. Patients with valvular heart disease are often treated with surgery to replace the diseased heart valve. Medicines are used to treat fluid retention.”

– If you have heart disease and have had open heart surgeries this may be the category that you would fall in. I am a group 3 meaning that mine is from associated lung and breathing disorders (along with combined congenital heart disease) so they treat me with blood pressure meds, diuretics, heart rate medications, and treat the underlying lung and breathing disorder that I have with BIPAP/Vent, oxygen therapy, and chest wall therapies.

– I would ask your doctor what he meant when he said this and if this is why you are not eligible for some of the treatments because they may not work in a case like yours. Personally, I don’t take any PH specific medications because that is not the underlying cause of my elevated pressures.

– Hope this helps ! Keep us posted, I’d be interested to know what they meant by that.

[Kathleen Sheffer]

Great topic! I typically go through a nurse practitioner or nurse coordinator, but they don’t always answer phone or email or get back to me at all. My transplant team has an after hours line for emergencies and that tends to work for urgent matters, but I didn’t have a resource like that when I was seen by PH doctors.

I think it’s important to find a great primary care doctor who will get you in on a moment’s notice. If your specialists are a longer drive from home, find a local doctor who knows your condition is critical and complex and will get eyes on you and communicate what they observe to your specialist. I’ve had great PCP’s who advocate for me when I’m sick.

[Brittany Foster]

Thank you for the response Kathleen! My doctor doesn’t have a nurse practitioner. They have fellows that are working with them but I always try to get tranferred to my doctors secretary so I know they are the ones getting the message. Especially when its more complex and difficult for someone who doesn’t know me personally to just see my conditions on paper. I definitely utilize my PCP when i can and she is so great at fitting me in whenever possible so I can be seen quickly ! She’s a great advocate for me and I’m so appreciative of that! It makes a world of difference.

[Kathleen Sheffer]

That’s good you have those resources. It’s frustrating and scary living with a disease that can change so quickly and not knowing we can always reach someone for help. My clinic is perpetually understaffed, and that seems to be the norm. All the more reason for our us to be well informed and capable.

[Brittany Foster]

Kathleen,
It’s also very overwhelming for me when I run into the trouble of just waiting around to hear back. I get frustrated so easily. This just happened to me yesterday and I just broke down crying in my car.

[Kathleen Sheffer]

So sorry! It gets me so heated as well.