Wednesday, July 13, 2011

This phone call may be recorded...

You know how you kind of "gear up" for a doctor's appointment? You take time the night before to get all of your questions down on paper, you think about your symptom activity on the drive to the doctor's office, and you mull over the highlights of the appointment-to-be while you're in the waiting room. You mentally prepare yourself to see your doc face to face - deciding on how you're going to effectively and efficiently touch on all 29 things you want to address in the 7 1/2 minutes you have with the doctor.  You're armed and ready...at the top of your game. Now all you need is a physician to start the volley.

At least, that's how I usually approach my visits to the doctor. But just recently, I was caught off guard, because my conversations with the doctor extended beyond my appointments, due to extenuating circumstances. As I mentioned on Monday, my doctor decided to change his course of action following a recent appointment. I was thrilled to hear from him - as I wasn't completely satisfied with the plan of action after he and I had last spoken. It wasn't as though I was completed dissatisfied...I was just a little unclear of how we were going to get my kidney issue under control. I wanted to hit it hard...not jump the gun with medications or procedures necessarily...but I definitely didn't just want to sit back and wait for a flare to take root.

So thankfully, my doctor felt that action was needed, too...because he called to explain that he wanted to start a new medication, a hypertension medication called Cozaar.

Now - let me set the scene - because I'm sure you've been there:

I was in the car when the phone rang. Deirdre was in the back, chatting away, and I was in the middle of making a U-turn in my sister's neighborhood. I was trying to track down my niece who had been dropped off at an unspecified neighbor's house, and Deirdre and I were literally scanning the driveways for any car or person that we might recognize. Just as I pulled out my phone to see who it was, my sister's car pulls into the neighborhood, and she's trying to flag me down to explain that she was going to pick up my niece and that I should just wait at her house. To say that I was in the middle of something is a bit of an understatement.

So was I a little unprepared to take his call? Uh...yeah. Not only was I thrown off when he mentioned a blood pressure medication that we'd never talked about, I was taken aback that he'd decided to change his course of action. You know how it is - so many things swirl through your head in those 2 minutes when the doctor is talking. Is he taking action because things are really desperate? Does he remember that I've always had really low blood pressure? Is he doing this because he sensed that I wanted action, and so he's prescribing something that I don't really need to take?

I mean really...do I always have to make things so difficult?

That said, I managed to park the car on the side of the road, pull myself together, and ask a few very pertinent questions, if I may say so myself:

1) What if any are the side effects from a drug like this?
2) What should I expect to see happen between now and my next appointment?
3) Is Cellcept (a drug that he'd mentioned previously and one that I know and love) off the table? If so, why?
4) Is this drug treating the symptom of the extra protein, or are we addressing the issue of my malfunctioning kidneys?
5) Do you still think we should wait for a biopsy?
6) Will my already low-blood pressure be affected?
7) Is this drug typically prescribed to lupus patients?

Not too bad, off the cuff, right? Trouble is...it took me about two days to reconstruct the conversation so that I could come up with the answers. I couldn't for the life of me remember exactly how he'd answered my questions. To date - I still can't tell you how he answered #4. I know he said something like, "Well, that's a good question." But then I can't remember what else he said. I do know this - he said enough that I was willing to hang up the phone and start taking the drug. If I REALLY hadn't gotten the answers I wanted - I wouldn't have gotten off. But I did...so now, I had some work to do.

If only the conversation had been recorded! If only I could have had the doctor on speaker phone and Deirdre could have taken notes for me. It was all just too much information without enough warning.

So here's what I did: I hung up the phone, thought about the conversation for about an additional 30 seconds, and then resumed the task at hand which involved my niece, my sister, and one very eager 2-year old in my back seat who couldn't understand why her aunt and cousin were running from here to there while she had to stay cooped up in the back of the car without making a peep while Mommy was on "a very important phone call." Seriously.

But this is the great thing about lupus tenure...I didn't panic. I didn't freak out. And I didn't immediately call my doctor back to say, "What the heck did we just talk about?" I just waited for a few hours, thought back to the conversation, and attempted (in a very calm and peaceful manner) to piece together the answers to my questions. In fact, I decided to wait until the prescription arrived in the mail before taking any action at all. Truth was, I didn't even know how to spell this new medication that he'd prescribed. (He hadn't been all that sure of the name on the phone himself!)

Once the prescription arrived in the mail, I took about 10 minutes to do a little research, discovering that these drugs are prescribed quite frequently for this exact purpose. Okay. Now we're getting somewhere.

Next, I mentioned the whole thing to my pulmonoglogist, who I saw just a few days later. He had his own opinions on the matter...much of which coincided with that of my rheumatologist, but he added his own objective insight. He recommended that I see a nephralogist before too long, and he also thought an ultrasound would be a little less invasive, but a good second step. Ah, yes...much better than a biopsy - and still more telling than just a 24 hour urinalysis. Good info, doc. Just keep it coming.

Lastly, I attended my monthly lupus support group meeting just a week after the conversation, and lo and behold, 4 of the members are on hypertension meds just like the one I was prescribed. They were able to clear up many of the outstanding questions I had...and put my mind at ease about the ordeal...something that I don't think even my doctor could have done.

(One last thing - I also emailed a girlfriend to get her advice on the whole thing, figuring that she'd been down the whole lupus kidney biopsy path herself. She shared her experiences and I instantly felt empowered. I was no longer in the dark, alone, or crazy. It was fabulous!)

So there you have it - proof that support groups (and others with lupus tenure) help, consulting and networking your doctors is invaluable, and taking the time to do your own homework on your health is worthwhile. Never knew managing a chronic illness was a full-time job, did you?

6 comments:

  1. Sara, I'm so impressed by the questions you managed to ask! Definitely worth following through with the nephrologist, but sounds like Dr S, is on top of it!
    Thanks for the past 2 posts and I'm glad to hear you're doing well!

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  2. Thanks, Emily! I felt like I came through on the question side of things...I just wish I could have been more attentive to the answers!

    Thanks for stopping by and for the encouragement...
    SG

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  3. My problem is that when I get to the doctor I tend to downplay my symptoms and then I forget to ask the questions I should have asked. It is quite frustrating and I am so scatterbrained sometimes!! Luckily all my important tests like urine are okay!

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  4. I know...why do we do that?!! It's the craziest thing how we suddenly want to appear so strong and resilient in the face of the doctor. If only we'd think through the fact that this is the one person who can actually make those symptoms go away (partially or even completely), we'd be a little more eager to divulge! Thanks for sharing - and glad your basic tests are good. Always a good sign...

    Take care - SG

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  5. Sara, I, too, have been in the situation where having low blood pressure all my life and being told that hypertension meds will help my kidneys sent up an immediate flag. I was fortunate to have a nephrologist who offered me the actual research articles to look up and explore on my own. My rheumatologist referred to him because he knew he was up on the latest, and I had a great rheum so that flag turned into a checkered one and I was okay with it. To date, these meds in conjunction with the cellcept have helped me to the point of never looking back. I hope things work out for you just as well~ :)

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  6. Maria - Perfect! Thanks so much for sharing. Makes me feel a whole lot better about the plan of attack. All you need sometimes is to know that at least one other person in this big world of ours is going through/experiencing exactly what you are. I'm satisfied!!

    Thanks - SG

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