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PAH Specialty Centers
Hi Everyone,
I have read of several people here going to PAH Clinics. Can I ask how often you go and what they do while you are there? I am very proactive and therefore I want to be in front of the best doctors that know PAH. I have a choice to go to one at UF or Atlanta where my daughter lives and I have to decide which to pursue. My thoughts so far are to go to Atlanta where my daughter can drive me and attend with me or I can Uber from her house. Although I have a mast cell disease specialist at UF it is a 2.5 hour drive on a good day and I won’t have anyone to drive with me. Before I wouldn’t have given it a second thought but I feel my symptoms are unpredictable and I should not be driving that distance alone. I walked down my long block to get some steps in and once I was on my way back I had horrible burning in my chest which to date other than shortness of breath has been my only symptoms. I made it home I almost called my husband to pick me up but I knew if I gave in and did that I would be afraid to walk the street again. I am stubborn but this did frighten me. I am thinking it was the humidity here in FL which makes things worse as I walk 10,000 steps in my air conditioned home most days. Anyway I would appreciate input on the PAH Centers.
Thank you in advance.
Judie -
9 Replies
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Hi Judie,
Thank you for the topic post. To address some of what you are talking about, my personal opinion is that it is always best to have someone go with you. Not only will it help to have someone there to drive you, especially if you are not feeling well, but they can also provide support to you. My mom is usually the one to go to all the appointments with me. She is a second set of ears especially since at these appointments there is always a lot of information being thrown at you at once. Having someone there makes taking in the information and processing it so much easier because trust me there will be a lot that you will forget about and things that may be interpreted the wrong way under stress.Make sure to research what centers have the PH programs. My PH program in Boston is part of the center for chest diseases and pulmonary medicine. Other programs are coordinated with centers for heart disease or heart failure and have the PH specialists. I see my doctors once every 3 months. There are other parts of my condition that are monitored almost on a weekly basis but the results are still reviewed by my PH team. I would think that the first few times seeing them may be more frequent and then start to taper off when it gets more under control. Having a team is so important so you are definitely taking the right steps.
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Hi there Everyone,
I do not go to one of the accredited Centers for Comprehensive Care. I did once and the doctor there told me he would do nothing different from my current team so I decided not to go back. My PH doctors are among the best in the field, are well-known, and well-respected. Both hospitals have PH Clinics so I do get confused when people talk about going to a PH Clinic. Are you talking about one of the accredited centers or a major hospital that has a PH clinic? could someone straighten me out here?
For me, the most important thing is having doctors who listen, treat the whole person, and include me in the decision-making process. I have had excellent care at both hospitals and physicians who have treated me. They may become regional clinical programs but both certifications require lots of work and money at a time when they don’t want to invest.-
Hi Kaye,
I love what you said here. “For me, the most important thing is having doctors who listen, treat the whole person, and include me in the decision-making process.” It is so important especially because I have so many other conditions besides PH that the doctors really look at me as a whole person and treat everything. It is impossible to just treat one part of the puzzle, especially with something like PH that has the potential to effect almost every system in the body. Having someone that coordinates care and reaches out to my other doctors is also important. Usually my primary care is the one to do this and make sure everyone is on the same page. Do your doctors work well with one another and coordinate? Do you find that you are the one pushing them to do this or do they take the initiative? Just curious how other teams work!
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I am interested in an accredited PAH center. I am a registered nurse of almost 40 years. I have worked mostly in Oncology and my last 10 years as a Hospice RN case manager. Throughout my career I have counseled dying patients who were improperly followed, had symptoms ignored until it was too late and were flat out misdiagnosed not getting a correct diagnosis until it was to late for anything to be done.I lost both parents 4 years apart due to incorrect diagnoses. I have learned that one must advocate for themselves. Ask questions and do research until you are sure you have learned enough.
I diagnosed my systemic mast cell disease eventually confirmed by a specialist. I had a lump in my neck that I noticed while putting my seat belt on when my first daughter was 6 weeks old. They thought it wa# mastitis bc I was breastfeeding ev3n though I had no pain. I talked my PCP into sending me to oncology which once I went I was already in stage 2B of Hodgkin’s lymphoma.
One of the first sign is anemia and I was not anemic when I gave birth so in 6 week it spread and I am thankful I caught it when I did. Doctors are human some are incompetent. I always learn as much as I can and advocate for myself. Now my daughter is 36 and will visit me with her husband and her 4 month old daughter. I am thankful I am here and I will not stop fighting whatever is thrown my way. I want to live as long as I can. To that I must educate and advocate for myself. I see the pulmonologist in another week. I will be prepared with my notes and questions. My husband will accompany me as 4 ears work better then 2. It is important as others have suggested to bring someone with you to doctor visits.
Judie-
Judie,
it is so sad how many people I know with chronic illness and an illness as serious as PH that have been misdiagnosed. It is hard for us as woman to advocate for ourselves because many times we are wrongfully labeled as “crazy” or told that our symptoms are “in our heads” when there isn’t a black and white explanation. Luckily I have been blessed with doctors now who take me seriously and take all of my symptoms seriously. Before diagnosis, I wasn’t so lucky and these experiences definitely made a lasting impact in my level of trust in the medical profession (even though I know I have a great team now) . Advocacy is so important and is something that doesn’t come as second nature to many of us. It took me years and years in therapy to be able to advocate for myself the way that I do! It is a skill that could quite literally save your life. Such important points! Thank you for sharing.
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Judie,
I go to the PHCC at Mayo Jacksonville. PH expertise, the latest technology and the PHCC has an extremely PH fluent and knowledgeable staff. Expert diagnosis and care. As I am 6 hours away they cannot truly be Comprehensive so I also have a local PH doctor in Atlanta and a local cardiologist to provide eyes on observations back to Mayo. My local PH doctor acts as a very specialized PCP and helps me manage the entire intertwined mass of care necessary with a PAH diagnosis. His office also hosts a PHA support group if you end up in Atlanta.
My overall impression of a PHCC vs a PH Program/Specialty/etc is that is is truly a separate and well resourced team focused on a smaller subset of the Pulmonary/Critical Care unit. Also leaders in research so I find that value added. So ultimately I’ve built a team that includes a PHCC as the lead team member. Hope that helps.
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Hi Lisa,
Thanks for the info. Have you looked into the program at Northside Hospital in Atlanta. I haven’t yet but it is on the list. My grand daughter was born there last March so I am familiar with its location. I am in the Tampa Bay Area of Florida on the Beach. I see a mast cell doctor at UF in Gainesville Fl. They are also on the list but it is a 2.5 hour drive on a good day and I no longer trust myself to do that drive alone. I see the Pulmonologist next Monday for the first time so I will see how that goes. There is also a study starting at NIH in Maryland for diagnostic study on progression of the disease. If I can get into that I will to be under their microscope which would help me relax.
I have to call for more info on that tomorrow in case I need the Pulmonologist here to be involved. I travel with our business also so there is a lot going on. I will update as things unfold. Thanks again.
Best,
Judie-
Hi Judie,
good luck at the pulmonary doctor. I hope things go as well as possible and that you can get a lot of information from them. Keep us updates on how things went. I can truly understand how you feel about driving that distance. There are some days where I try to avoid highway driving as much as possible. Especially any type of distance. Do you have anyone who will be able to go with you to these appointments? It always helps me to have an extra set of ears. All the best to you!
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Thanks Brittany,
I will post updates and I am sure more questions after my visit to the Pulmonologist. My daughter and her family live in Atlanta and she would come with me.
Right now I see my mast cell specialist at UF yearly and I don’t want to increase those trips as long car rides are exhausting to me. No matter who drives.
My other daughter lives near by and she attends UF with me as we are both under the same doctors care.
She works full time and I don’t want her wasting vacation days to go to the doctor with me.
Today is my day at home to get organized for Monday visit with The Pulmonologist.
Stay tuned!
Judie
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