Thursday, February 2, 2012

Advocating for My Partner: Patience, Trial and Error

My partner has had an onslaught of various medical problems that began last November, and persist today.  However, things are getting a little bit better. He is not fully recovered, nor may he ever be. But we are taking it one day at a time.

I shan't bore you with all the details. But I do want to share some lessons that we learned that may help you, or someone you care about, in the future.

Having learned a thing or two about "medical advocacy" when I cared for my aunt in her last years of life, I learned that having a good doctor who can look at "the big picture" and manage discussions with other medical specialists can make a big difference.

Challenging thing, though, was that my partner's regular doctor who he had been seeing for years was not paying attention to his complex, complicated medical situation. That doc would write a referral for any specialist, but only when my partner requested it -- not by saying, "considering these symptoms, you should see Dr. X." To us, that's what a good doctor should be doing.

With my partner's permission, I contacted his medical insurance company. After wading through the bureaucracy of HIPAA restrictions (that is, privacy rights), and by demonstrating that I have my partner's Power of Attorney, I spoke with the Ombudsman at his health insurance company. This is a position that is not well known -- but there is always someone there who can help navigate complexities of medical care that the health plan will cover (or will not cover.)

Yeah, health care in the U.S. is complex and messy, but when you know with whom to speak and learn how to ask the right questions, you can get what you need, quickly, and get top-notch quality medical specialists to pay attention.

In early January, I arranged for my partner to see a doctor who is part of a practice at a world-class medical research and teaching hospital that is exceptionally regarded for its quality of care -- not only in our state, but in the entire country. And I convinced the health insurance company to refer us there -- so no question that they would pay for it.

This doctor has now become my partner's general physician. This new doc is really, really good. He is managing my partner's case from an overall point-of-view. No more tests -- that doc has all the test results he needs. He has referred my partner to some specialists who have prescribed treatments -- some of which have worked, and some have not. The trial-and-error is frustrating at times, but we have to learn what may work, what may make my partner even more sick, or what treatments have no effect at all. We've had all three. But the point is that my partner is getting superb medical care from very top-notch docs within their specialties.

The complex medical situation that my partner is dealing with is not quite an illness, not quite a disease -- it's really messy, with interrelated and non-related symptoms that present themselves individually or all together, on some days and not others. Man, it's perplexing.

It is difficult, too, not to use the internet to try to figure out what's going on. There is so much conflicting information out there -- and a lot of it is inaccurate, or trying to sell you something, like a wonder-drug. I have asked my partner not to search the internet for information about his situation -- not that he is a hypochondriac, but because some of what he was reading was very scary. Being worried and scared only makes things worse.

I learned from my aunt's physician who took the approach, "treat the whole person -- the head and the body -- to keep her well." That is what my partner and I are doing in his case. Seems to be working, too.

With a clear head and determination, I am doing all that I can do to ensure that my partner is well cared for. That includes making major adjustments to what I feed him, and what he drinks.

Neither he nor I drink alcohol -- that's not what I am talking about. We have found, however, that most juices in the grocery store are supplemented with ascorbic acid (Vitamin C) which in high concentrations can compound problems with the build-up of uric acid, which in high concentrations can contribute to severe joint pain due to gout.

... this is but one of the many medical lessons we have learned. Further, I'll never bad-mouth my inorganic and organic chemistry professors again! Man, have I had to apply my knowledge of chemistry as I prepare meals for my partner, to ensure he has adequate nutrition, but not consuming things that could make his problems worse. My promise: no exacerbation. (Go figure that one out ... giggle).

Anyway, my partner is still ill, but he has stabilized. Enough so that he is able to return to work while I still provide his transportation.

We will get through this; I have faith. It will take time, and good supervision from my partner's new G.P.

Life is short: keep asking questions, find the answers -- but don't use the internet to do medical diagnosis!


Anonymous said...

My dear brother, I am beyond words... how you cared so deeply and so long for our beloved aunt, and made the challenges that you faced in caring for her turn into life lessons that you are applying now in caring for your partner, my brother-in-law, a wonderful man.

I appreciate, always, speaking with you by phone with regular updates, and giving you an ear to rant.

My wife and I love both of you so very much. We continue to pray for your partner's strength, and your determination to do what we observe you to be: the man with the biggest heart and "can-do" attitude I have ever, ever, known.

I love you always.

Ore e sempre,


Anonymous said...

I was reading this blog post when J's message appeared. I do not comment on this blog, until now. I want to echo our brother J's comments.

I have visited to help out at my brother's request, in caring for our brother-in-law. The words that come to my mind is "effortless" in how my brother executes his care, "amazing" in how he remains calm and determined, and "thoughtful" in how he considers and communicates his partner's needs through his advocacy.

I am proud to be your sister. We love you, too!


Booted Harleydude said...

What can I say? I have a wonderful family. Always there, always supportive, and by our side through life. Love you all!