Have you ever been forced to switch doctor’s?

[Terese]

Colleen, I have the unfortunate situation of having to find 3 new doctors – they all retired! I have a new pulmonologist, hematologist, and gastroenterologist. And I will be switching to a new dentist this year as well. Even though they all have my history, they really don’t know me. Good golly! am I getting so old, or are they?

[jen-cueva]

Oh no, at @Terese Tuohey – there are so many doctors to change at once. Hey, in your case, their retirement is not always a bad issue because it means you are crushing it, my PHriend. But any reason we have to switch is often a pain, so I can imagine needing to switch for all at once like you are, can be challen

But of course, your positive mindset helps, I know. And no, ma’am, it has to be them getting older. We just keep getting better as we reach those “bonus” birthdays. Thanks for sharing, and keep us posted on how these changes are going for you.🤗

[Colleen]

@Terese Tuohey sometimes when doctor’s retire they are able to refer or recommend another, especially for their long-term patients. They might have an idea of who would be the best fit. Were your former doctor’s able to do that for you? Change is never easy, but especially when it’s with something as important as medical care. I’m sorry you are going through this. Keep us posted on how the transitions are going for you.

[Randy]

My Pulmonologist passed away and it was four months before I knew it. He had diagnosed me with Vaso reactive PAH, My new Pulmonologist says I don’t have PAH! I was informed that PAH is an incurable terminal condition! Have I suddenly and miraculously been cured!

I am definitely confused. Should I get a second opinion that takes up to four months to schedule?

[Colleen]

@Randy I am concerned for you! How did your original PH specialist diagnosis you, by right heart cath, echo? If it was determined by cath that is the most accurate way of diagnosing the disease. Either way, I would encourage you to seek a 2nd opinion, even if it takes months to get in. How have you been feeling? Are you on any treatments?

[Randy]

My PAH was diagnosed by Right Heart Cath, about 4-5 yrs ago, which I watched.

My original Pulmonologist is supposedly the Dr. that developed the treatment for COPD, PAH, supposedly.

I will now definitely be looking for a 2nd opinion.

I wish I could see all of the posts that I am responding to, so I know if I have answered all the questions.

[jen-cueva]

Hi @Randy , you should see the post you are replying to just above where you replied. Does that help at all? If you’re replying to someone, you can type “@” followed by their name to tag them, which keeps the conversation flowing. You can also click your cursor outside the reply box to the left to review the questions as you type. Then, hit the arrow to go back to your reply, and it will keep what you started typing.

You definitely need a second opinion. It doesn’t seem like this pulmonologist is very knowledgeable about PH Have you checked the “Find a Doc” link to see if there’s a specialist near you?

I bet it might be hard to get an appointment this time of year, and it could be next year before you can get in. If you do manage to get in, be sure to share your reasons for seeking this second opinion. After managing PH for 4-5 years, it’s concerning to hear a new doctor say you don’t have it. While your treatments may control it well, keep in mind that it doesn’t simply go away.

We are here to support you in your journey toward getting a second opinion.

[Randy]

I have an appointment with a Cardiologist.

I was taking Symbicort, 2 puffs twice a day. My new Dr. switched me to CREO one puff once a day.

I will seek a referral for another Dr. not in the same system.

[Colleen]

@Randy I’m relieved to hear you are seeking a 2nd opinion! Please keep us posted on how things are going.

[jen-cueva]

Hi @Randy , great to see you, my PHriend. But I am sorry to hear about your pulmonologist’s passing. Wow, four months before you were notified is a bit odd, too. But I, like Colleen, am concerned about you and would suggest you get another opinion.

I’ll link the PHA Find a Doctor link below. You can add in your zip code and search for PH specialists. Do you know if either your original or new pulmonologists were PH specialists? Is the new one in the same office as the old one, or did you have to go elsewhere? Because the way one diagnosed you and the other said, “No,” that’s unlikely if it is a true PH specialist. Haven’t you been diagnosed for years now?

We all know we have had a hopeful year with new treatments, but certainly, PH doesn’t just disappear. I’m sorry you are dealing with this, and this is so darn frustrating.

What treatments are you currently on?

phassociation.org

Doctors Who Treat PH - Pulmonary Hypertension Association

DOCTORS WHO TREAT PULMONARY HYPERTENSION PHA provides the following lists of physicians who treat PH as a service to patients and does not specifically endorse any individual physician. All information has been provided by the doctors so that you can … Continue reading

[Randy]

I’m not sure if I even like my new Pulmonologist.

[jen-cueva]

Hi, @Colleen , I’m sorry to hear about the sudden loss of your cardiologist. You are right, and there are so many reasons why we must switch doctors. But hearing the news one has passed away isn’t as common.

However, I had this happen with my PCP years ago, and recently, my dad’s PCP, whom he has seen for at least 20 years, passed last year. Thankfully, my dad had another doctor who worked with his previous doctor for about three years. But my father is stubborn and doesn’t care much about the new one. I’m hopeful he will warm up to him soon. I tried to tell him that the younger and newer doctors have more recent knowledge and may sometimes want to try new doctors’ medications. But he isn’t sold, and his new PCP was a new grad when he joined the office with his other long-term PCP. The other was in his mid to late 50s, so he was not old.

Is there another cardiologist in the office that maybe the nurse can recommend to you? What’s your plan? I know you need to get in soon, too.

Again, I’m sorry about the loss of your doctor. Thanks for sharing, as we often don’t think about this as a reason to need to switch to another doctor. Please keep us posted on how this goes for you.

[Colleen]

@jen-cueva I thought I remembered that a doctor of yours had passed away too.

I have an echo in November and one of their 2 cardiologists will look it over to make sure there isn’t anything immediate that needs to be dealt with. Otherwise I discussed with the nurse that I will wait to schedule an appointment with whoever the next electrophysiologist will be, because I need a specialist to monitor my long Q-T syndrome.

One of the cardiologists remaining is my dad’s, and I believe he is closing in on retirement. He referred me to the doctor who just passed because my dad’s cardiologist doesn’t specialize in electrophysiology but he will probably be the one to review my echo.

[jen-cueva]

Hi @Colleen , I’m happy to hear you are being proactive.

Keep us posted on the date of your echo next month, which starts toomorrow. We will be here wanting to hear back from them. Thanks for sharing, so we know and will be asking. 💜

[Colleen]

Thanks @jen-cueva . My echo is on Monday morning, the 9th.

[jen-cueva]

Hi, @Colleen , is your echo scheduled for Friday, the 9th, or Monday, the 11th, which is also Veteran’s Day? I want to ensure you make it to the appointment. LOL.

Keep us posted and we will be sending you extra love, hugs, prayers and positive vibes.

[Colleen]

@jen-cueva thank you for questioning because I’ve had in my head that the appointment is in November but it’s not until December 9th!

[jen-cueva]

Hi @Colleen , no worries, but I’m happy I could help remind you about this necessary appointment. You can share again next month so we all can send you extra love and support for your Echo.

[Randy]

I have an appointment with a Cardiologist, the one that diagnosed me initially.

Thanks for the link, I will check it out.

My original Dr. supposedly developed the COPC, PAH, treatment.

The current Dr. specializes in respiratory issues. and is in the same medical system as my old Dr.

I was diagnosed 4-5 years ago.

I was taking Symbicort 2 puffs twice a day, now I’m on CREO, one puff once a day.

[jen-cueva]

Hi @Randy, when is your cardio appointment? At least he diagnosed you with the RHC 4-5 years back and is familiar with you. Maybe he can recommend someone you can see.

How are you feeling with the Breo? ( I assume that is what you meant.) It’s a plus that it is only once per day. Is that the main reason you switched? Are you on any other medications for PH?

Let us know how the appointment with your cardiologist goes. 💜

[alex616]

I have been forced once, but only because I was moving to a different state, so I get a pass for that

[jen-cueva]

I can relate to that a few years ago, @alex616 . It’s never fun changing all of our healthcare providers when moving. I am grateful now to have them, all and they are an excellent team!

[Colleen]

@alex616 I can relate to that as well. My son’s PH care and transplant was in CA. When he turned 21 it was time to transition to adult care and it was decided to switch from Stanford to the Univ. of WA because it was our home state. We had to adjust to new doctors and a new hospital but the transition went well. I hope yours did too!

[jen-cueva]

Hi all, this is a reply from @Randolph Reynolds ,

He had trouble posting today. Again, Randy, I am so sorry this is happening, and I know it can be frustrating. Maybe try the tips I asked and suggested. I have also let the teaching team know. If they have other suggestions, I will let you know.

Randy says, “Hello. I think I mentioned this before. My first PAH specialist died last spring. Heart failure. I have visited his ’replacement’, Dr. Muralidhar, once and chatted with him on line once. He looks in good health. It wasn’t a traumatic experience just an adjustment. The Arizona Pulumanory Association grew out of their old digs and the new facility works a lot more efficiently.”

[Colleen]

@Randolph Reynolds I do remember that your specialist passed and your challenge of finding new care. It sounds like you are in good hands again. I only had one appointment with the cardiologist but he impressed me and I felt like I could trust the care he would provide. I wouldn’t say I was traumatized but definitely shocked by his passing because he was young and appeared healthy. I can help but feel curious if he missed or ignored something about his own health. Doctors are human too and I think it’s easy to forget that sometimes.

[Erik]

The cardiologist i was seeing suddenly went on admin leave for a unknown length of time. It was 2 weeks before my next appointment, and I was needing a renew on my PHA meds. Needless to say I went without meds for almost a month before a new doctor was authorized

[Colleen]

@Erik that sounds like medical negligence to me! Leave or not a plan should have been in place to make certain patients like yourself would have their basic care met during the interim, especially medications. How were you feeling during that wait and did you struggle with side-effects when you started back up on treatments?

[jen-cueva]

Oh my, @Erik , I agree with Colleen. How frightening and frustrating this must have been for you!

I had something similar happen when I switched insurance, but thankfully, the specialty pharmacy, Accredo, was there to help me get my medication through until the new insurance approved everything. When I changed my entire medical team after moving, my old PH team ordered enough medications to ensure I was set and ready to transition to my new PH doctor. My new primary care physician refilled any other medications, even knowing that I might eventually need a pain doctor or psychiatrist to prescribe them once I established care with the new team.

Which treatments were you taking at that time? One month is too long to be without your treatments, and I, like Colleen, wonder how you felt without them. Did you notice any changes, such as increased symptoms?

If you ever face a situation like this (which I hope you don’t), the pharmacy and medical staff should work together to ensure you receive your PH treatments. I can’t imagine how difficult this was for you—it frustrates me to read about it!

But I appreciate you sharing and hope no one else finds themselves in this situation.