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Interesting Read: Yale Patient Now a PH Advocate
I came across this interesting story that I thought you might enjoy reading. We always stress the importance of going where there are qualified PH specialists if this is possible.
Chere shares her story after she finally followed up with a PH team at Yale.
Unfortunately, we understand that many are not close to a PH specialist. But all too often, the treatment and outcome are much better if we are seen by a knowledgeable PH specialist early on who oversees our care.
Give this article a read, and let’s talk about this. What takeaways did you get from reading? Do you relate to Chere and find yourself territorial, too?
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10 Replies
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Hi Jen,
I read the article about Ms. McGrath and her treatment at Yale. What surprised most about the article was the fact that she went from a classification 4 to a 1. I wasn’t aware it was even possible to have such a dramatic improvement. While I appreciate that each case is different, I was wondering if you have had any patient sharing experiences that are similar.
Thanks,
Germaine-
@mgnorwood hopefully other members will share their perspective and experience on this. I know there are people who respond extremely well to treatments and experience a higher quality of life, but I don’t know if this also lowered their classification. As you mentioned, each case is different but I believe any story that offers hope is worth paying attention to. Thank you @jenc for sharing this article!
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Hi @mgnorwood, thanks for reading and sharing your feedback on this article. I thought that the hope it may offer some is worth it.
Although I have not dropped that much in classes, I am now a stage 3 functional class and was a stage 4 at diagnosis. AS you and Colleen both mention, everyone is different, but I have known others who have improved by 1-2 stages of their functional class.
Each treatment, our bodies, and the PH stage are varied, causing various outcomes. I was diagnosed in 2005 and about to celebrate my 17th PH-anniversary and have only been on oral medications. I’m grateful that I was diagnosed earlier than some and have had excellent care.
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Hi Jen,
Thanks for the response. It will be a question I ask my MD at UCSF at my March evaluation. The article was invaluable insight and I am certain for others as well.
Best,
Germaine -
Hi @mgnorwood, I’m so grateful that you found such hope and insight from this article.
You’re not too far from me as I go to UCSD. You should receive exceptional care there. That’s the Stanford center, correct? Colleen has experience there, too.
I appreciate your feedback. Please let us know how to support you as you approach that evaluation process in March.
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Thanks Jen for the offer of support. I am treated at UCSF Pulmonary Hypertension Clinic in SF. I am very fortunate in that my MD is Dr. Teresa DeMarco who is a US expert in the field. I wish everyone who is diagnosed with PAH could be treated at a PAH Center. While the medical benefits are obvious it underpins your confidence level and hope. For those who do not have access to these centers belonging to organizations like this in my opinion greatly enhances your quality of life and survival. I also belong to a monthly group conducted by UCSF Mental Health. Supporting and uplifting each other to believe and live as normal a life as possible is more than a worthwhile goal.
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Hi @mgnorwood, I’m so happy to hear about your treatment by such a well-versed expert at the PH center. That truly does make a difference.
I’m also interested in learning more about this mental health support group. This is something that I haven’t heard a lot about at the PH centers and wish we had more of. I would guess that has an impact on your overall well-being. How are you enjoying that?
Thanks for sharing.
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Hi Jen,
The UCSF PAH support group meets once a month. People attend from The SF bay area north to Sacramento. We have a guest speaker several months per year(usually a MD in the field) and when there is no speaker scheduled we have an Open Forum. Everyone with PAH(or their caregiver) can raise an issue, ask a question of the group or seek solace and support from each other. This can be be invaluable just hearing another person’s trials on their journey. I am on oxygen at night and when I first when on oxygen I had a lot of questions including travelling with oxygen. My “fellow travelers” are an amazing source of knowledge. The session last about 1.5-2.0 hours. We sign documents to keep all information confidential so everyone’s privacy is respected. The challenge on the Open Forum calls is giving everyone who wants to the opportunity to speak while not allowing any single person to monopolize the conversation. The Facilitator is key here and they generally do a really good job. This is a wonderful gift from UCSF. -
@jenc I think your story offers hope to many. I know you have had your ups and downs but 17 years is a number patients find hope in. You are a PHighter!
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Thank you, @colleensteele, for always being so kind and supportive. I am grateful that my PH journey offers hope. That’s why we do this, right?
You all have been an extended PHamily, and I love you all. I wish I had found you and the forums sooner than I did. But I’m beyond grateful to be here and know each of you and have you part of my daily life.
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