-
How often do you see your pulmonary team or PH specialists?
Next week I will have my 3 month visit with my PH specialists. I have been going every three months since diagnosis. At the appointment we go over any new symptoms, new ideas for treatment and I get testing if it’s needed.
At every visit I usually do some version of a 6 minute walk test either walking the halls or doing steps. I am given a Pulmonary function test every 6 months. This is usually done before my appointment so they can go over things with me during the visit.
There are a lot of things I try to talk about in the short amount of time during the visit. One thing I always make sure to bring up is any medications that don’t seem to be working quite as well for me. I really don’t like being on medicines if they aren’t beneficial. I also try to write down any questions or new symptoms before. This helps me keep my thoughts together so I don’t forget anything.
How often do you see your PH specialist? What types of tests (if any) are given during these visits? What do you make sure to bring with you?
-
18 Replies
-
my pulmonary is scheduled at 3 months. however, that gets cancelled when i go for not feeling well, etc. Lately, no idea when next scheduled is.
cardio has upped it..in the beginning it was like 3 months..new it is monthly..and i can wait 2 weeks now for new blood work. starting to get bruised from this weekly stuff..will see cardio in 2 weeks
-
I’m glad they are keeping a close eye on things. It is frustrating to have to go so often though. How far away is your specialist? Mine is a little over 2 hours from me! Hopefully yours isn’t that far away since it’s so often.
-
-
Hello All… I usually see my cardiologist every 6 months and my pulmonologist every 3 month. Lately I have noticed that my pulmonologist helps me more than my cardiologist. Both doctors keep in touch which each other as I see them at the same hospital UPMC in Pgh. Both are specialized in pulmonary hypertension. I usually have testing done before my visit (like an echo for the heart) and oxygen testing. The most important thing for me though is to take someone with me. My sister goes with me as they talk about so much I cannot grasp everything. Having someone with you is important. I hope all is well with other PH members. take care
-
Margie, that’s great that your pulmonologist and cardiologist are both specialists and collaborate with each other. You are absolutely right that bringing a caregiver to appointments helps with remembering everything that is discussed. How long ago were you diagnosed? You sound like a pro!
-
Kathleen, I am not a pro but I have been fighting my illness for 13 plus years… it has been a struggle at time. In the beginning I did not want to admit that I had the illness so I did not use the oxygen and such but now I am on 10 liters (yes, 10 liters) people are shocked by that and I get up every morning, thank God that he gave me another day, and put my feet on the ground and do things! take care
-
Amazing! I love meeting long-term survivors. I was on IV therapy for 16 years before my transplant and oxygen at night and as needed when I got sicker. Thank you for sharing your positive outlook. You are a warrior!
-
-
Hi Margie,
Thank you for sharing that with us. It definitely helps to bring someone with me to my appointments too. It makes it easier when the doctors are in the same hospital, both familiar with PH. I also see a pulmonary specialist and a cardiologist and it just makes appointments run so much better when they are up to date on testing and able to share info back and forth. I can understand what you wrote about being in denial and not using your oxygen as you should in the beginning. I was like that the first few years on oxygen too (and admittedly still struggle with it some days and struggle to wear it). Thank you for your positive spirit despite going through so much! That always inspires me to keep pushing forward.
-
-
Hi everyone ,
For to long I saw only my primary care dr. , a great dr. but – – – – ,
Life became so limited that I looked for a good pulmonologist who does my care now . he states that he can also act as my cardiologist . Lucky for me he is only 1 mile away in a respected hospital setting .
I have had the testing for lung and heart . Pulmonary arterial pressure of 56 .
Taking 2 breathing meds and would so gladly do a clinical trail .
He has said see me every 4-6 months , I don’t go over 4 and would like them every 3 months .
I’m an old guy and have had a beautiful life but feel so bad for all of you still young , not fair .
Blessings to you all .
Denny-
Thank you for sharing, Denny. I’m glad you found a specialist you can trust. Have you asked to see him every 3 months? I think that is pretty typical, but 4 is okay too. I love Seattle and try to visit often. Do you like living there? I was hospitalized at University of Washington right before my transplant and the ICU team there was fabulous. I have some fond memories of being there, even though it was the sickest period of my life. After that experience I read The Boys in the Boat, which I loved. My ICU room had a view of the Montlake Cut so it was close to home!
-
Thank you for replying to me .
Have not asked for every 3 months but when offered 4 – 6 months I ask for the 4 month mark , don’t want the Dr. to think I’m looking for the impossible .
Denny -
4 months is good too! I’m glad they are following you closely. That’s an important part of our care and tracking our symptoms 🙂 Glad you are taking all the right steps.
-
-
Hey Denny,
Thank for sharing with us. I’m glad you are able to get care that is so close to you. That certainly makes the trips a lot smoother. Where I get care is a few hours away from me. This makes it hard when there’s an emergency. But I’m lucky I have good relationships with my doctors that I can call and ask for them directly. Gets rid of some of the stress and worries for sure! You can always advocate for wanting visits every 3 months, especially if you have been experiencing more symptoms. Not sure if all insurances would approve of that, but it is always worth asking and there is no such thing as a dumb question! 🙂
-
-
My usual schedule is every 3-4 months for the Cardiologist and Pulmonologist. GP is available for usually monthly visits for blood work, Kidney and diabetic workup..Last 6 minute walk test was OK, problem is stairs, inclines and picking up anything, including 2 year old twins or 3 yr old. I am tired, suffering with insomnia, get 2-3 hrs sleep.
Had a double “Cath” on 7/31, 2 days in hospital. Appointment with Pulomnologist 8/21 and Cardilogist 8/20..Probably time for medicine change. hoping to get a combo of Adempas and Adcirca, since studies indicate this may improve exercise and walking ability-
Hi Jimi
I hope they can figure out a good medication combo for you to help with what you’re experiencing. I agree that stairs and lifting things can become very difficult. I always feel extra body fatigue and my legs feel like jello after walking up a flight of stairs. It seems like you have a very attentive treatment team! I’m glad you’re being followed so closely.
-
-
Thanks for you advise, it is beneficial to talk with others making this journey.. I have 3 great doctors, 2 are specialist in PAH (PH), the other is a GREAT GP, that I have been going to for over 25 years.. Issue is they all have “ego’s”, and will not have a long conversation and decide how to treat me and other patients.
As I mentioned, there are a host of changes in how medical supplies and prescription meds are being handled by some pharmacy’s and insurance providers for Medicare and Medicaid.
I was down to my last 4 pain pills and hadn’t received notification from the pharmacy or “part D” provider on these changes. Expected to pay reasonable co-pay and receive a monthly supply, refill placed a week in advance. Please check with your providers, before you go to the pharmacy. -
Hi Jimi,
good advice about checking with the providers before going to the pharmacy. Sometimes new regulations pop up and doctors don’t always mention this to us. It is hard when you are dependent on certain medications though. I can understand that. I’m glad all your doctors are great, but don’t let their
“egos” get in the way and let them know that they need to work well together in order for you to be your best! Best of luck Jimi. keeps us updated. -
Good morning all,
I go to my pulmonary specialist team every 3 months. I am very fortunate my Dr. and his assistant are awesome, I love them both so much. I have improved so much since my diagnosis, in 2016. I do the 6 minute walk at every other appointment. I am on a combo of Letairis, Sildenafil and oxygen 4 liters 24/7.
-
Constance,
I’m really happy to hear that you have such a good relationship with your doctors. It’s great to see some type of positive from the medicine and treatments you are doing. Having a good trusting relationship and feeling heard and understood is one of the most crucial parts of managing this illnes and any chronic condition.
-
Log in to reply.