Life After Cancer: Difficult Disease With A Difficult Doctor

When you are diagnosed with a difficult disease the last thing you want to have to deal with is a difficult doctor.

I currently have a doctor who is a cardiologist and is the worse doctor I have ever had, and that is really saying something since I have had many doctors, some that I did not like but did their job well. However, this one I do not like and does not do her job well, at least in my case. Yet, she is still my doctor. Why?

Upon many requests for another doctor, she remains to be my cardiologist.

The last time I was there for my follow-up visit and requested another doctor I got the same story, she is the only one who is qualified. Except this time after asking about getting a different cardiologist the intern studying under her decided to voice that it made her uncomfortable and that it felt awkward being asked this. As if it was not uncomfortable for me and awkward asking for a new doctor because I could not stand going to my appointments with her. She also responded with the fact that I only have to see her twice a year. I do not think that should matter. If my doctor is not providing the best care, or what I feel is the best care, should I not express that concern?

Do I not deserve to have a doctor that cares about my case enough to remember my history rather than telling me each time how important it is that I not become pregnant because it would be too dangerous for me, thus having me explain for the umpteenth time that I have already been through menopause due to complications from chemotherapy? More than that, do I not deserve a doctor that respects my time as I do theirs so that I do not spend 4-8 hours just sitting in a clinic waiting room unable to go anywhere because no one knows when she might get to my appointment?

I understand that things happen that make doctors run behind on their appointments, but I do not think that it is alright to make your patients waste their time sitting in a waiting room waiting for you to get to their appointment if it is going to be multiple hours. Update them so that they can do something with that time, such as finding something to eat. The worst part about waiting all those hours is that I maybe spend 20 minutes with the doctor before leaving. Yikes, that is a terrible ratio!

Why has it been so difficult to find a new cardiologist?

Complications from my stem cell transplant left me with a very rare and progressive heart and lung disease. At the time of my diagnosis there were only 5 people in the world who shared the disease, Pulmonary Veno-Occlusive Disease. It is a form of hypertension and is the occlusion or narrowing of the pulmonary veins and venules, similar to Pulmonary Arterial Hypertension. Due to the narrow, oxygenated blood is unable to circulate at a regular pace and can leave a person short of breath with the simplest amount of physical activity. Because of the pathology and lack of response to PAH therapy it gets its own classification. The prognosis for PVOD is not something that people like to hear. For most, the disease progresses very fast and patients are reported dying within 2 years of diagnosis.

I have been living with it for more than 2 years now and for the time being, or at least the last time I was able to see my doctor, the disease has not progressed a great deal. This has not been reported in other patients with the same diagnosis. What can I say, I am truly one of a kind. :)

Since the disease has so many unknowns, I have been a human guinea pig since being diagnosed.

This makes finding a new doctor even more difficult. Because the disease is so rare there are not a lot of doctors who know anything about it or how to deal with everything involved. But this doctor is so arrogant that she does not believe there to be anyone else available that can follow my case in any sort of way.

However, she is not doing a very good job of following my case either. Along with the large amounts of wasted time, she is also incredibly difficult to get a hold of. I am still waiting to get an appointment with her for my 6 month follow up visit; it has been 5 month since that visit was suppose to happen.

Why not make more waves? Demand a new doctor? Complain about the lack of response to phone calls. Don’t I deserve more? I know I deserve quality care, and I do not believe that I am getting that care. 

I had a nurse during my transplant that was so rude that I refused to let her back into my room and talked to the nurse manager that night about it, and actions were taken right away to ensure that she not be my nurse in the future. It takes a lot for me to request for someone to not come into contact with me, if that gives you any idea of how rude she was. However, replacing a doctor is not so easy, at least not in this case.

So how do I go about finding a new doctor? Even more, how do I find one that I can afford to visit. The other hard part about my current cardiologist is that she is several hours away, and now after moving even further from Minneapolis it is a longer distance. The costs of driving there, paying for parking, and eating meals adds up, especially since she is not the only doctor I have to visit down there and they can never coordinate the schedule so that the appointments line up.

There has got to be a way for long distance care, right? All the tests can be done closer to home and results sent to “the expert”, especially since the time spent with the cardiologist, or any of the others in her group, is very short and not worth the cost. If I felt like I was actually receiving care, then I might be more inclined to feel better about the situation However, upon leaving I know nothing more than I did before the appointment.

Have I been too nice? Not demanding enough? I try to be polite and respectful when asking about a new doctor, maybe I should be more demanding and less polite. This nice girl attitude has not gotten me anywhere with this group of cardiologists. But how do I advocate for myself, for my health, when I do not feel like I am being heard in the first place? I should not have to be someone I am not in order to have my voice heard.

How do you deal with difficult doctors? How do you make them see you as more than just a patient, but as a person who deserves their full attention? How do you get them to realize that they are not providing their best care even after telling them and asking for a new doctor because they do not seem to have your best interests in mind?

I guess it is time to roar a little bit louder.