The Joy of Working

I have always loved my job, it's a perfect fit for me. I like talking to a wide range of people and problem solving is a fun challenge. Practicing medicine gives me both, I'm happy doing what I do. A good deal of the job is listening, both as a way of gathering facts to work with and as a form of therapy. Patients want to tell their unique story. Even if the health problem is a common one, it's effects on a particular person might be very different from the norm and they want me to see it from their vantage point. That's the basis of empathy and being empathic is critical to the patient-physician relationship. Smarts are important, we can't get the diagnosis right without that, but without empathy the treatment plan will fall short. I think this is where primary care docs have an advantage in making treatment plans. We get to know patients over years instead of one or two visits so we are better able to "negotiate" a plan that works for them. There is joy in doing that.
I recently cut my morning hours by 30 min. I've been running late and missing lunch and this was wiping me out. Now if I am behind I am still assured some down time. I used to run much closer to the schedule but we've been encouraged to take same day double-book appointments and that means we will run late- can't be in 2 rooms at the same time. If I don't have a work-in patient then I tend to spend more time with those who do come in. Yesterday I saw a longstanding patient for a follow-up appointment. Her issues were straight forward but her husband was present and we had a chance to talk about his cancer diagnosis and how chemo was going. The conversation drifted to the fact that everyone dies and how appreciating the life one has lead really helps in facing our personal mortality. I know the three of us all benefited from the exchange. Though it had an indirect tie to the patient's health issue it had everything to do with the quality of her life and I'm glad we had the time to acknowledge that important detail in her story. Those are the visits that I find most satisfying and when I leave practice those are the exchanges that I'll miss the most.

Waiting and Wondering

Monday I received my initial biopsy results and everything looked fine under the electron microscope. This is good news and yet unsatisfying. I can check a few more things off the diagnostic possibility list but still am no closer to knowing what is causing my decline. Now I'll have another 4-6 weeks to wait for the results of tests checking to see if the respiratory chain enzymes are ok. Where I go after that is not clear. This latest doc also thought we should consider chronic Lyme disease which apparently cannot be diagnosed using standard Lyme testing. This was news to me and my partners. I don't recall if he told me how it's diagnosed, I'll cross that bridge if I need to. I was struck by the fact that this is another example of how important info like that is not available or widely known by those of us in primary care. We live in an endemic Lyme area, we need to know this to treat patients correctly. Makes me wonder how many patients have been misdiagnosed over the years due to poor information on the front lines.
As I wait I do have a new decision to face. My gait eval suggests that weakness in multiple muscle groups of the right leg are adversely affecting my ability to walk efficiently and for long periods of time. I've been observing this for months but lacked the proper vocab to explain it to other docs. The PT at the Courage Center did break the overall problem down in her description of my gait. She thinks I would benefit from using a flexible leg brace that fits me from the calf down. It would connect to a foot orthotic via a mobile/flexible pivot at the ankle. This would not make me dependent on the device to walk but would allow me to go longer than my current limit of 40-45 min and might conserve my energy while I'm working. If I wear pants it wouldn't be that noticeable. I'll probably go ahead with this but first I'll talk to Ralph for his input. Two years ago I never would have imagined I would face choices like this. Going to the Courage Center for the gait eval and OT visits helps me keep a perspective on my situation. I see so many people there who obviously have harder struggles than mine so it keeps my pity parties short. I especially feel for the parents who have kids with challenges, that could really be difficult. Such is life- joy and good health can walk hand and hand with sorrow and illness.

A beautiful bruise

I have a magnificent bruise over my left biceps from the muscle biopsy that was done 2 days ago. Turns out any muscle can be biopsied to look for mitochondrial changes. At first I had hoped he'd take a sample from a more affected area but the aftermath of the procedure makes me happy this site was chosen. Had he done the right quad then I'd still be limping. It was hard to sleep Friday night because my arm was sore and very sensitive to how I positioned it. Such is life. I'm on call today but it's unlikely that I'll have to go in for an admission; how my arm feels isn't an issue. The muscle spasms from time to time and that offers me a hands on anatomy lesson- I am well aware of the location of the long head of my biceps and how my pec insertion affects the biceps. Kind of neat in an observational sense. Once the marcaine wore off I used a meditation technique to keep the pain down. This technique works by taking the emotional element of pain out of the picture. I focus on and analyze the qualities of the pain input and in doing that my brain is too busy to process the emotional component. It takes concentration to do this but it works for me. Ice had been suggested but I have a tendency towards cold urticaria so I didn't go down that path.
This physician's bedside manner was wonderful and he lifted quite a burden when he told me that he felt I had identifiable deficits. After being brushed off by the Mayo docs in May and more recently by a neurologist and rehab doc at HCMC I worried that my illness would remain inadequately explored until it was too late for treatment. Now I have access to further testing, if that's necessary. But this is a weird place to be. If the biopsy is diagnostic then I'll be dealing with an illness that lacks great treatment and seems to be relentlessly progressive. If no answers emerge then I'll need to keep searching while maintaining my current treatment program (going back to lower weights and more reps as heavier and fewer has not improved my strength and has increased my overall pain). My regimen has slowed things down but I'm still declining. I dream of getting back to my baseline but would happily accept the status quo if it would stay like this indefinitely.
I've found another fine physician who sees me, the patient, and I'm thankful for this. Yes, he gave me quite a bruise and it's beautiful.

Another new doc

Today I had a consultation with a physician who specializes in mitochondrial disease and other neuromuscular illnesses. Mitochondria are the energy powerhouses of the cell and it was suggested that I may have a disease of this type, there are lots of them. Ralph and I brought selected notes from my medical record for this doc to review. He also took my history and did an exam. I'm always impressed by how physicians approach this task. Each brings his biases into the room with him, as do I when I'm with patients. Thankfully, he liked my response to his query about why Ralph and I have different last names because that set the tone of the meeting. Things might have gone differently if he had missed my humor or been more traditional about married couples sharing a name. I am so cognizant that much in medicine turns on the interaction between patient and physician. This is especially true when the patient presents with unusual symptoms or has an uncommon illness. Today I lucked out.
He noticed that the muscles of my left hand have atrophied, first neuro to comment to me about this. We believe he gained some sense of how much I've lost in terms of function and how hard I've worked at getting better. If he really reads the records I've brought him then that will become more obvious. He is not sure if I have a mitochondrial problem or not so I'll have a muscle biopsy on Friday. It can take 6 weeks for the tests to come back. He also did a few blood tests that hadn't been done. He did convey his belief that something was amiss with me. His other diagnostic consideration was chronic Lyme's. I mentioned that I was tested for that but he told us that conventional tests are for acute Lyme's and miss the chronic form. Only a few centers can do tests for the latter. We'll head down that path if need be.
Medicine is growing increasing complicated and our current system is inadequate in ensuring that new knowledge is disseminated quickly to those on the frontline of medical care. I always score very well on my boards and process information quickly yet my own illness has shown me how much there is to master. I had never heard of POTS or mitochondrial cytopathies before I became ill. No one can learn all of medicine; we need to develop information networks that point physicians to references which are easily accessed and well indexed by disease and symptoms. We also need a referral system that gets patients to the right specialist. We found today's doc thru a combination of old connections and pure chance. Most patients rely on their primary care physician to find the right specialist yet their doc might not even be aware of the availability of many subspecialists. Changes in this process are needed to ensure that patients reach the specialist who is most able to help them. Who'll take responsibility for moving this forward? Maybe it'll take docs like me who have been on both sides of the exam table to get things going. I can think of worse ways to spend my time.

PS I'm going to edit out the typing errors as they bother me and might keep people from reading my blogs.

Hope in the New year

I've had much to think about in the past few weeks. It was suggested that I may have a mitochondrial cytopathy and I was referred to Dr. Cohen in Cleveland. While I worked on that lead my husband found a local consultant. This came about in a strange way. Ralph was doing a labor induction at a hospital where he trained and ran into a former colleague from the ER. That doc is now a VP in our health system and when my husband informed him of my situation he gave Ralph the name of a pathologist who is interested in this group of illnesses. That person referred us to a physician who is actually based in Colorado Springs but he also works out of Gillette hospital a few days each month. Ralph tracked him down and spoke with him about my case. I'm now slated to see him on the 12th with possible muscle biopsy on the 14th.
This is quite a break for me but it demonstrates that the health care system often leaves it to patients to find the right contacts. I have advantages that others lack because my husband and I are players in this set-up. I'm not sure how others break through the walls that can keep patients out. As I visit web sites I sense many patients are taking advice and making contacts through medical chat rooms. There has got to be a better way to organize this process.
After being rebuffed by so many neurologists I'm actually nervous about the appointment. I worry that he won't think I need a muscle biopsy. I wonder how biopsy sites are chosen; I'm hoping he chooses the site based on physical exam findings. I, and my therapists, know which muscles are weak. Will he listen carefully to my observations or rely solely on his exam or will any muscle do?
If I have a mitochondrial cytopathy I wonder if he has any advice that will help direct my therapy. I've been trying so hard to get stronger and regain function. I am frustrated because I'm not seeing better results. I've been trying heavier weights with fewer reps but I'm not making much progress and am getting injured a lot. My left shoulder and upper back muscles hurt all the time, sometimes to the point that I need to take tylenol #3 and/or wear my clavicular brace. Working my right leg harder at leg presses has led to days where I can't fully extend my right knee. I'm aware of the "no pain, no gain" philosophy but I seem to be getting the pain without the gain. Bummer for me.
Well, it's a new year. I hope it brings me a diagnosis and a treatment plan that is truly helpful.