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    • #27064
      Jen Cueva
      Keymaster

      A new member wants to know which breathing tests should she have her pulmonary doctor order. Aside from checking if they are a PH specialist, which tests does your PH doctor do?

      @annefox says she has only had a CT and MRI. I believe that she also has a history of pulmonary fibrosis and lung cancer.

      Anne, I have PFT’s or pulmonary infection tests every 6 months to a year. I have Echos every 6 months and a right heart cath yearly at a minimum. Each PH doctor is different. But, with PH, it is not only your lungs but your heart that needs to be monitored, too. Are you seeing one pulmonary doctor, or do you see a PH specialist, also?

      If you need help locating a PH doctor in your area, this link may be helpful.

      What other lung and heart tests do y’all have that she may need to ask for?

       

    • #27071
      anne
      Participant

      I do need a PH doctor in the Washington, DC/Baltimore area. I live in Columbia, Md.

    • #27076
      Jen Cueva
      Keymaster

      Hi @annefox, by using the above, find a doctor link, I found this doctor near you. He is at The John Hopkins Hospital in Baltimore. His name is Dr. Paul Hassoun; their number to the PH clinic is 410-614-6311. This is what I found per the PHA site.

      His information ie here- Dr. Paul Hassoun. Of course, there are probably a few others near you. This was one that I called and checked to be sure that the number was correct.

      I hope that is helpful. Please keep us posted if you contact their office.

    • #27094
      Dawn
      Participant

      Hi Jen & Anne,
      I see Dr. Stephen Mathai at Johns Hopkins in Baltimore for my ph. I really like & trust him. Although they don’t always agree, he communicates with my cardiologist here where I live. I’ve heard good things about Dr. Hassoun at Hopkins, but have never met him. The local pulmonologist who diagnosed my ph went back to California, so I don’t actually have a local ph dr or pulmonologist.

      When I saw Dr. Mathai in March of this year he said he wants me to have yearly pulmonary function tests, echo-cardiogram, right side heart cath. He’s had me get ct scans as well. I had the pft a few wks ago, and just had the echo yesterday. No results yet for the echo. No appointment yet for the rt side cath, but I have a video appt. with Dr. Mathai in two weeks so I’m guessing he’ll bring it up then. My cardiologist had me wear a heart monitor for 3 days a week or so ago, wanted to be sure with my afib that my heart rate isn’t staying too high and wants it under 100 bpm. The results showed I was in afib 100% of those 3 days, heart rate ranged from 47-170 bpm, but the overall average was 82 bpm. My cardiologist said keep the medication as is, seemed ok with the results. The afib meds I was on before didn’t keep me in rhythm, so we switched to rate control rather than rhythm control and it seems to work better this way.

      Best wishes to you Anne with everything. Jen, any results from all your tests yet? Hope you’re feeling better.

    • #27103
      anne
      Participant

      thank you both for all the good information. I’ll keep my 9/18 appointment with my 0ld/new pulmonologist and talk with him about the tests Dawn mentioned and make a cardiology appointment to verify I really do have pulmonary hypertension — since he so flippantly diagnosed me by saying any one with fibrosis and swollen feet & ankles has pulmonary hupertension. I’ll tell him about the cardiac tests Dawn mentioned.

      So, if all goes well and I really do have this disease, I’ll make my appointment with Hopkins to find out all the ifs, ands, and buts.

      If I dont have it……and my fibrosis doesn’t fit with the 30 year old transplant fibrosis people……I’ll wonder if there are many other people like me who cant breathe well even while on O2.

      Anne

    • #27107
      Jen Cueva
      Keymaster

      Hi, @dawnt, thanks for sharing. I did also see Dr. Mathai on this list in that area, so thanks for sharing this with Anne. I am grateful that the new med is working better for your Afib. I am hopeful to hear back from your recent Echo.

      I hear from the Neuro next week, and I think my PH doc virtual appt. is the week after, I believe. It is sometime this month, hehe.

      Take care of yourself.

    • #27109
      Jen Cueva
      Keymaster

      Hi @annefox, I would ask your PF doc is he means that you have both PF and PH. Not everyone that I have heard of with PF has ever said this from their pulmonary doctor. Although, I do know that some can have both PH and PF. I think getting that portion understood would be first from him, or change docs.

      Either way, the pulmonary PH docs at John Hopkins should be able to care for you either way if you are unsatisfied with your current pulmonary doctor. Have you also asked this question in The PF forums? I would like to hear how many have heard this from their doctor. If you have not been on these forums, here is the link. You may find some of their posts helpful, too.

      As far as not feeling like you can breathe with O2, many of us here and in the PF community do find that a struggle at times. You are not alone on that.

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