Breathing Deeply: My Life With Cystic Fibrosis

Let me start by saying that this week in general has been something of a pain in the rear when it comes to doctors appointments and so forth. For the last few days I have been back and forth on the phone between my CF Clinic and my ENT's office trying to get everything straightened out so that I could have sinus surgery today. I did EVERYTHING I was asked to do. I called every phone number and department that needed confirmation. I made sure that the ENT knew that I was not a pediatric patient but an adult CFer. There's plenty more to the story, but it's not pretty so I'll leave it out.

Well, after all of that we finally got my surgery scheduled. Yesterday morning I got a call from the surgeon saying my surgery was confirmed for 5pm. 3 hours later I got a phone call from the same people saying my surgery had been canceled because they never got the paperwork from my doctor who was ordering the surgery. I called the CF clinic to chew them out and say "what the heck?" Hours later surgery was back on, but I was going to have to have it as an inpatient basis and have the hemotology/oncology clinic run some tests. (I'm a bit of a bleeder and my doctors wanted to run all the necessary tests to see what they might be up against.) In my opinion, those tests were all things that should have been run MONTHS ago when they first said I needed sinus surgery.

Well, today was the day scheduled for surgery. Or rather, today was the day that surgery got unscheduled. Brad dropped me off at the hospital around 8:30 where I waited by the admissions office for them to tell me I could be checked in. I waited. I waited. I waited. They came out to tell me there wasn't a bed for me in the hospital (an situation that has and will continue to absolutely baffle the heck out of me) but they were working on finding one. I waited and waited some more.
No bed. Also, by that time it was too late for the hematology folks to run their tests and have the answers in time for a 5pm surgery time, so I was sent home. No surgery. No tests. Just one big crabby CFer who had been NPO (i.e., abstaining from food) since 4:30 yesterday. All in all, not a good situation.

I know it's not entirely the fault of my CF clinic that this happened, but there are things they could have done much earlier in the game to get this smoothed out. Also, the hospital administration continued to mystify me. Whenever I'm told I need to be hospitalized, I have to wait a minimum of 2 days for a bed to magically become available. Part of this is because I have cepacia and need to be in a private room. Having cepacia makes me feel like I am the bottom of the food chain.

Another thing I have a real problem with is why our CF Adult Clinic is so short staffed. We recently lost another nurse, and we only have 1 doctor for over 120 patients. In my opinion the Cystic Fibrosis Foundation should really step it up and work on making sure that their accredited clinics can provide decent quality of care for its patients.

I think they should reexamine the way they allocate funding and spend more of it on adult clinics, and maybe back on on therapies for now. After all, the new drug therapies are really only targeted at the younger population of CFers. Adults like me get left in the dust, struggling to find out place. I know I'm not alone in my thinking. Adult CF care is miserably behind the times when compared to the pediatric clinics. My hospital is, according to the US News and World Report, one of the top 10 hospitals; but you wouldn't know it based on how the CF clinic looks and operates. We have clinic once a week in the evenings. Patients who need to be put on IVs are deferred for a few days until they can be admitted to the hospital. In many cases, we're just started on home IVs and brought into the hospital later. It's stressful, exhausting and hardly conducive to living a normal life in spite of CF.

My experience today with the sinus surgery getting canceled was just a symptom of a much bigger wrong that's going on in the medical community. I shudder to think what my experience would be like if I were less of a self-advocate or had lesser insurance coverage.