Get Back to Where You Once Belonged

Yesterday I made an appointment for a consultation at the CF clinic where I used to be a patient. When I was diagnosed in 1984, the average age for a patient was 19, which happened to be my exact age at that time. Because the majority of people didn't live into adulthood patients were treated at children's hospitals. I thought nothing of this: CF was, after all, considered to be a pediatric disease.

I received top quality care from doctors who were pediatricians, and since many had quite a bit of adult experience as their CF patients got older this really wasn't a huge issue. Sure, it was a bit uncomfortable being treated at a pediatric institution. I had to explain that I, not my son, was the patient. There were times that the doctors were pretty much out to lunch on some of the adult issues such as employment, families, the social implications of the disease and what it was like as a "grown-up" to live with this chronic disease.

Fast forward 20 years. With the many advances made in research, drug development, and prevention the average age is now 37. As the age of patients started increasing there became a trend to transition the adults into adult clinics or to adult hospitals affiliated with the pediatric institutions. My hospital, Children's Hospital in Boston, was one such place.

Any transition is difficult, but in particular it is difficult for patients to leave a place where they have been treated their entire lives. With a disease such as CF patients form very tight bonds with their care providers. They are seen in clinic every 3 months and often treated inpatient for weeks at a time with IV antibiotics to keep the infections at bay. For many, the hospital is a home away from home.

From the hospital's perspective, I'm sure it was incredibly difficult to write the policy and move patients to another, albeit nearby, institution. A relationship was being formed between Children's and Brigham and Women's hospital in which patients would be treated up until they were 18 at the pediatric institution, then move over to the adult care setting for their adult care.

At the time of the change over of adults to The Brigham (as it is referred to in Boston) there were many different and conflicting stories, the new hospital wasn't up to speed on cystic fibrosis and it was, in my opinion, quite chaotic. I didn't feel good about moving over to the Brigham.

For this reason, along with several others, I decided to move my care to Mass General Hospital, the biggest hospital in the city, which had both pediatric and adult care. There was no need for their younger patients to leave the hospital once they became adults. I loved the adult care providers, the physician and nurse practitioner, and they seemed to be building a solid clinic in which the patients would receive excellent care. There was also a lung transplant program at the hospital (something Children's didn't offer at the time, the adults were transplanted at The Brigham) which was appealing as an option for me should I decide to take that route further down the road.

After a year at MGH the CF physician decided to leave to pursue her career elsewhere. The NP stayed behind and was the main care provider for over a year as they searched for a replacement physician. Once one was hired, the NP also left. So much for stable, consistent care!

Since then, there have been several more staff changes. The team that is currently in place is good. I particularly like the NP who has many years of clinical experience and is great at prioritizing. She knows her stuff. The doctor is good, I've been impressed after some appointments and disappointed at others. I think the bottom line is that he is very overwhelmed and the hospital is reluctant to pay for a second CF physician, which is crucial. There are over 150 adult CF patients for one doctor, who also covers in the ICU and has regular pulmonary patients. On top of that, the transplant program at MGH appears to be sputtering.

The clinic has grown in my time there with the addition of a nutritionist, an excellent physical therapist and a social worker. The thing that I find to be lacking is a passionate physician, one who is up to date on the latest developments, drugs and research, who will guide the clinic to be one that people seek out for excellent care. The care is adequate, but not outstanding. After a conversation with a dear friend, whose husband has had experience with both MGH and the Children's/Brigham clinic, I started thinking about giving the latter another look. Her description of the care providers at the Brigham as being "passionate about CF" really struck me. That's the main thing I find lacking at my current hospital: passion! I'm going to consult with a physician at the Children's/Brigham CF clinic and see how I feel about switching back.

I don't consider my time at MGH to have been a failure or a waste. My PFTs haven't slipped more than a couple percentage points in the 6 years I've been there, which is better than the 2% average that CF patients lose per year. I can't afford to lose much more without a drastic decrease in quality of life. For the past 12 years I've been super-compliant and willing to stick to a tough regimen of daily care; I want my providers to be the best they can be. It doesn't make sense to be doing hours worth of treatments per day and not be using the latest data/treatments to optimize my time and the results.

I'm not agonizing over the decision as I did last time when I moved over to MGH. I'm going in with an open mind: I want to check the clinic out, see how it is run, how the relationship with the adult hospital works, what research is being conducted, what the adult doc is like. If I do decide to leave MGH, it's nothing personal, just that I'm looking for a clinic that will best fit my needs and give me the best care possible. I won't have any problem explaining that to my care providers. Boy, do I love being in my 40s!