Thursday, July 24, 2008

"So tired, tired of waiting"" Ray Davies

I ain't saying you treated me unkind
You could have done better but I don't mind
You just kinda waste my precious time

                                                  Bob Dylan

Saw the same PA at the clinic today who discharged me late from the hospital on Monday.  I was there for over 5 hours and spent 15 minutes with the PA 15 minutes in lab and 15 minutes for a dressing change.

She first asked me about my infusion. I didn't have an infusion. She later explained my stomach upset was getting used to food after TPN (IV feeding). I didn't get TPN. The one thing she didn't do was read my chart. I know she is trying, but I suspect she's badly overworked as she is covering for 2 providers who are out of town. She doesn't know me or my status and it showed.  It was not a confidence inspiring first outpatient follow-up. I was very nice. Ask my wife.

Maybe because of the slow process (the domino effect of my late scheduled appointment with her perhaps because of my late check out on Monday, again because of her, and then a mix up in the registration), I could not even get an appointment with my doctor as needed next Monday, so I seeing a very kind and competent NP who I am quite sure knows and remembers me from my 4 weeks inpatient. However, this is a potentially dangerous pattern which I need to break. I am coming up on a high risk period for CMV re-activation, GVH, and the critical assessment of my engraftment status. This is not the stuff a mid-level should be handling, plus because of the confusion with some of my lab, my neurotic side wants the reassurance that comes with decades of experience. I need to know what angst is wasted and what is well spent. This doctor as patient needs to see a doctor. 

I admit it feels fine to whine, but it really doesn't matter much, because I am well. Very well. My preliminary lab report was very good. HG 11.3 WBC 7.1 No nodes to be felt. Despite my stomach issues, my weight is stable. No fevers. No diarrhea. No mouth sores. My stomach pain is getting better today and rash is fading for the most part.

The RN did a great and sterile job in changing the dressing and in teaching my wife the technique. The lab staff is amazing.

I will conclude by letting Bob Dylan finish the lines I borrowed from him to started this post:

"But don't think twice, it's all right"


Blogger Unknown said...

I had a similar experience in January with my Dr. That was why I was looking to MDA for a while. But after a calming and reassuring time period, I felt confident that as long as I am diligent and educated in the procedures and processes (of the well known unknown), we can overcome any issues.

I know you were a good patient. Keep one eye on your doctors and the other on your health and you be fine.

Your CLL Friend,

July 24, 2008 at 7:23 PM  
Blogger Bob & Lori said...

So sorry for your bad experience. Can't say either of us are surprised. We've both had health issues (as you know)and each hospital visit had a story that makes you feel like "does someone around here know what's going on?" It's the stories old people tell to anyone who will listen. We try to avoid the topic because most people survive hospital "opps." As we did - as you will. A couple times, when dealing with someone that clearly was not on board, it was a very good thing I was very sick. I didn't have the strength to be anything but very "patient" (TeeHee) and polite. There is an admitting nurse at St. Jude in Fullerton that we call "Bloody Mary." We come out of her station black and blue and dripping blood. Like you are doing, you have to stay tuned to the positive and let problems fly off into never-never land. Let me amend, let those problems go AFTER you see a health professional with advanced training!!!!!!!

Thinking of you, Bob and Lori Morales

July 25, 2008 at 9:34 AM  
Blogger LISA said...

Dear Doc Brian;
the Barsmian's here. Just catching up and blessed to read of G-d's continued faithfulnessin your life. We continue to pray daily for you and your family, knowing
G-d continues to lead you to bring glory to Himself. We're looking forward to seeing your life's journey on mission with G-d be revealed.
With many prayers and love'

July 25, 2008 at 12:28 PM  
Blogger LISA said...

So sorry to read of the trial at the clinic, but excited to see G-d continuing to refine a spirit like His of love and compassion in you for the trials you encounter. We confidently continue to place you before Him in prayer looking to the day we will see you back in DB doing the work He created you for and thereby revealing Him to all peoples.
with love and prayer- Barsamian family

July 25, 2008 at 12:36 PM  
Blogger Wendy S. Harpham, MD said...

Hi Brian,
As a physician-survivor, too, I have found this issue challenging: How do patients get the best care when things aren't going smoothly?

If patients challenge what is being done, they may be seen as "difficult," which is not a good thing. But if they don't say anything, they may be harmed, which is even worse.

I am fortunate to be receiving superb care. On the rare occasions when things aren't going smoothly (usually with staff who are caring for me for the first time and don't know my "case"), I try to sound calm and pleasant while pointing out the problem. If I don't get a good reaction, I ask my primary care nurses and physicians for advice and support.

Whenever I am too sick to keep tabs and advocate for myself, I make sure to have a friend or relative with me to advocate for me.

Sure, "Oops" happen. Patients can't expect things to be perfect. And things can work out fine, even when things go wrong. So it is good to go with the flow through minor glitches.

But patients still deserve optimal care. And optimal care is a team effort. I hope this helps.

With hope,

July 25, 2008 at 1:50 PM  

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