In Search of a Special Kind of General Practitioner

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by Annie Dixon |

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Living with a rare disease creates a need for medical specialists. But a good general practitioner plays an important role, too. Rather than simple checkups, a patient with a chronic condition needs reality checks with a GP, while striving to live the healthiest life possible. And the physician needs to be realistic about what is possible or practical.

Personable and pragmatic

My husband had seen the same doctor since we moved to town, a smart, attentive fellow who was encouraging but accepting. Over the years, he nudged his patient to lose a bit of weight and get a little more exercise, but he couldn’t find fault with my husband’s energy and attitude. Our pescatarian diet, he noted, did result in great cholesterol numbers. And as a fellow Hibernian, he acknowledged Irish whiskey as the original anti-anxiety medication.

Most importantly, following the initial episode of aHUS, this doctor-patient relationship provided a 12-year baseline, both physically and emotionally. This general practitioner was able to interpret the diagnosis and integrate its limitations within his patient’s life and lifestyle.

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Starting over

When my husband’s doctor left private practice for a dream job in sports medicine, we obviously did not fit the demographic of his new and very fit clientele. So, we asked our sedentary contemporaries for recommendations. We heard of a well-respected gentleman nearby who was taking new patients. He seemed pleasant enough, reviewed the records, used all the right words, and suggested we schedule an initial “wellness visit” to establish a baseline and some “health goals.”

At the appointment, the nurse took the usual weights, measures, and bodily fluids. The doctor pointed out the normal ranges on the age, body mass index, and blood pressure charts. We pointed out the unusual disease we live with and the “new normal” we are pleased to maintain since its onset. The doctor peeked and poked a bit more and sent us home with short and long range target weights and a date for a follow-up appointment.

Little progress

We did not make much progress on the initial weight loss. In fact, we found the ultimate goal kind of depressing. Not only was it many pounds and months away, but also the only time I had seen my husband at that weight was when he was at his sickest and weakest. I had viewed his subsequent weight gain as a healthy sign. Besides, he is an excellent cook, and if he has the energy and enthusiasm to make dinner, that is a good thing on many levels. Surely, a second helping or dessert is even better.

On our return visit, we expressed our satisfaction with our unimpressive diet results. A reminder that our insurance plan included free gym access did not change our minds. We explained that my husband’s main concern, due to aHUS, is fatigue and irregular sleep cycles, a common problem in older patients, the doctor assured us. He prescribed vitamin B12 tablets, noting that he could administer it in a shot if a stronger dose were required.

The cure can be worse than the disease

We added the new vitamin to the morning pill packs and waited with great anticipation for energetic days and dreamy nights. Instead, my husband’s random insomnia got progressively worse, resulting in even more fatigue during the day. It was affecting his stamina at work, which made him worry more at night, which made the cycle ever more vicious. We puzzled over his anxiety and his diet, what he worried about and why, what he ate and when. After making little adjustments to less effect, we thought perhaps it was time for a B12 shot.

Then, it suddenly hit us: The insomnia had increased steadily and significantly since introducing the vitamin tablets. I checked the label and discovered they were the 24-hour time-release variety. So, even though he took them in the morning, they were affecting him all day and night. That is probably a fine formula for average patients with normal work schedules — the sort of patient this doctor can coax into the correct columns on his charts.

But this simple supplement was interrupting my husband’s unique sleep rhythms. He relies on a good night’s sleep and power naps to get through his very productive but irregular and part-time work with a low platelet count.

Starting over again

Rather than return for a shot, we decided it was time to find a new general practitioner. No hard feelings, this just was not the right fit. Demands of diet and exercise only make us grumpy and we have accepted the need to work around the fatigue, with little hope of curing it. While we didn’t need another specialist, we were in search of a certain sort of general practitioner who could take into account our special concerns.


Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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