Wednesday, September 29, 2010

Doctors Doctors Everywhere, But Not a Drop of Actual Medical Care

I am better. Last night was great, but this morning is kind of blech. I stepped down to 5mg anyway. I just want to get off Prednisone.

But I am having a hard time figuring out how.

I didn't feel so hot on 2.5mg and actually bumped back up to 3mg (where I had felt good) to bolster myself for all the cleaning ahead that day. Now I am dreading the taper down, knowing how much it's going to hurt.

My big frustration is I can't find anyone who has been through this kind of experience. There are a couple message board threads here and there, but they are old and lack information.

Although I did find one reference to wildly swinging blood pressure being a symptom of adrenal strain. Which makes sense.

When I go the medical study route, it's not much better. Not much info. When talking about secondary adrenal insufficiency all I get is that it should resolve, prognosis is good, and that acute adrenal crisis is rare. Okay fine. But what I want to know is what it's going to be like living with it and what I can do to help myself along. How should the prednisone be handled?

So then I think, I should find an endo who actually looks at adrenal stuff as an area of interest/expertise. Why?

There are things I don't like about my medical care now. Such as...

1. My pulmo has no clue about adrenal stuff. Which is bad considering they are going to be the primary prescriber. ERs are even worse.

2.My endo hasn't shown any interest in preventing this from ever happening again. I can not emphasize enough that this is SO much worse than asthma. The quality of life, the limitations on my ability to live my life are much more profound than I think anyone realizes.

I absolutely need someone in my corner.

3.I have no parameters. I am left to flounder and make up my prednisone dose as I go. The last time this happened we did Cortisol challenge tests at regular intervals so we knew exactly what my adrenals were doing (or not doing as the case may be). The prednisone dose was determined based on actual data from my body. Oh my God, the science! It blinds me!

It was a sucky year and very unpleasant but the blood work showed steady progress. I got a lot of empathy from my pulmo at the time too which was tremendously helpful, because, let me tell you, with the pain plus fatigue that weaning causes and the amount of time it lasts, you need people to hold your hand and pull you along or else you are not going to make it. Or maybe I'm just a big fat wuss.

In my fantasies, my endo would give my pulmo some guidelines to follow. They would be a little more hands on with me and the prednisone. Maybe some testing just to see how bad or good things are.

Because you know what? It is possible that the adrenals won't come back. Like I told the hubby last night. I did SO well in June and July after I weaned and then mysteriously tanked in August. I had happy stress, yes, but that should not have caused me to tank. I wasn't sick, I didn't have surgery--the adrenals should not have pooped out like they did. I don't know why they did and it makes no sense to me. August doesn't pass the sniff test.

Then they pooped out again just from exercise and me fighting off an infection. Again, not technically sick. Not meeting the criteria for needing 'stress dose steroids.' So WTFBBQ?

But then again, I can feel okay on a low dose of prednisone which, I believe, indicates I have some cortisol production.

I don't know.

Which is the problem. I don't have any idea of how this trip is going.

So I have started looking from someone who deals with adrenals. There is one doc in my area that appears to work in adrenal stuff. Worse than the lack of endos, I think it's the doc I saw years and years ago who was so angry I didn't know that solumedrol was the same as prednisone (hey I was 22 years old, I didn't know my ass from a hole in the ground). He screamed at me violently over the phone about how I botched the blood work. I never went back.

Well, duh, right?

I have been yelled at by some many doctors, for no good reason I can find, that I think State Medical Boards should start disciplining doctors for being verbally abusive.

Anyway, that experience makes me gun shy to subject myself to this doc again, although I'm older, wiser and meaner now (not to mention resolved to scream right back). I do plan to call and verify if it is the same doc on the off chance my memory is bad. Maybe I will get lucky.

The other hospital system has some researchers that deal with Cushings type issues and publish studies galore, but no one seems to know if they take patients. There are docs a couple hours away but, long term, that is not ideal. I need someone who is present. Adrenal problems, by definition, involve severe fatigue. There is no way I can manage a long distance relationship when ill.

The real kicker is, there was an endo consulted the last time this happened, but I have no idea what their name is. My pulmo at the time would not allow me to go see the endo directly and instead conferred with them on my behalf. While I appreciate the care they provided, they ended up doing me a HUGE disservice because I don't even have a direct contact with the endo who kind of knows me as a patient. When the pulmo left the state, moving on and up in their career, I was left high and dry.

Which I still am a decade later.

2 comments:

  1. Oh boy, you sound so frustrated and confused. I haven't been reading my blogs lately becuase my Mom has been in the hospital since the end of June. My sister and I have been taking turns staying with her....STRESS...and when I get home I just sleep. I have secondary Addisons, I was diagnosed in 2001. I don't know too much about prednisone, I have taken hydrocortisone. Most of the people I correspond with are either on HC or a combination of HC and prednisone. I do struggle with fatigue on a daily basis, it's a bitch. Email me directly if you would like to talk about all this adrenal stuff. I feel for you.
    mo

    ReplyDelete
  2. Would you send me your email addy so I can send you some websites that I have found very helpful? I'm maureenk83@sbcglobal.net

    ReplyDelete

Thanks for your comment. I read all comments and do my best to respond to questions, usually in a new post.

If you have adrenal issues and want to connect with other patients the following message boards are wonderful resources:

http://www.mdjunction.com/forums/adrenal-insufficiency-discussions/general-support

http://www.addisonssupport.com/