Any experience with this doctor?

[jen-cueva]

I hope that someone here may have worked with Dr. Ford or at least heard of him, @brendad53. But remember, try to keep your past doctor experiences at bay as you prepare for this new doctor. I know this isn’t easy, but coming in with an open mind may be helpful.

I’m not dismissing your care or lack of medical professionals in the past, just trying to think what may be helpful to get you to this appointment. It will take time to build trust.

[brenda-denzler]

Granted, Jen. And I do try to approach new physicians in this way. When they respond with openness and inclusiveness, it is an exceptional experience. I’ve had a couple that did so, and our evolving relationship has been exemplary. When they respond in less enlightened ways, however, it is torture. Until I know how they are going to behave, I am highly cautious. And under these circumstances, with my ability to breathe well being at stake, I’m rather extra-fearful.

[jen-cueva]

Hi @brendad53, I think that being cautious is expected after your history with doctors. As this appointment approaches, I hope you are hoping for the best. I know that I will be and hope this one will be the PH specialist you can work with and eventually get some much-needed answers.

How are you doing this week? Are you continuing to have the good and not so good days as before? Thinking of you this week, I haven’t seen you around.

[Colleen]

Hi @brendad53. You have been on my mind too. I hope you will update us after seeing the specialist.

[brenda-denzler]

I responded to Jen earlier, but as usually, the system here said it couldn’t post my message.

[brenda-denzler]

 

I’m trying to keep busy, but it’s hard to get focused on things that take much mental energy, as I’m getting closer and closer to “spacing out” as the dreaded date draws nearer. I can vacuum, fold clothes, or watch TV and play computer games, but writing is challenging. I’m managing to get some cerebral things done, but it’s more of an effort than it should be.

Honestly, though, I am *so* dreading all of this. I dread not having a decent first encounter. I dread having a great encounter but having to face invasive diagnostic procedures that scare me to death. I dread having my wishes ignored during those procedures and being treated like a “thing” rather than a person. I dread a diagnosis that has no hope of a cure. I dread NOT having a diagnosis, because although I keep telling myself on my better days that things are not that bad, then those worse days come and I have to admit to myself that things aren’t great. And I just had one of those coughing jags where you have a “catch” in your throat and can’t get it to release. You just about toss your cookies because you’re coughing so hard. So I think, yeah, I need a diagnosis and some kind of treatment plan. And that makes me really sad.

Not complicated and self-contradictory at all, eh?!

 

[jen-cueva]

Hi @brendad53, I’m thankful that you did get this to post afterall. I’m sorry to read about your mix of emotions as your appointment nears. But with your history of doctors, I’m certain this is the norm. It takes time to trust new doctors.

Your concerns and fears are also valid. There is no cure, yet! But if you know what you have, you can treat the symptoms and hopefully get some relief. But yes, once you get a PH diagnosis or on the path to that, a right heart cath (RHC) will most likely be suggested. Yes, this is more invasive than you care to undergo. But they need this to get the most accurate pressures and other measurements that an Echo only gives estimates.

Let’s take one baby step at a time. I’m happy to hear that you are trying to mentally prepare yourself while keeping busy, too.

You’ll be in our thoughts and prayers on this important appointment date. This can be a stressful and overwhelming time, but we are here for support.