Customer Service

So I decided to let Dana-Farber know about my missing PCR test from December. I sent a letter to the head of the Quality Improvement and Patient Safety committee at the hospital. I received an immediate response and apology with indications that further investigations would be under way. The following day, I received a call from another person on the committee apologizing again. Yesterday, I received a letter reporting the findings of their investigation. My blood was drawn in December, sent to the laboratory at Brigham and Women's Hospital, but disappeared from there. Based on my complaint, they are implementing a performance enhancement regarding blood specimen tracking. What is amazing is that the hospital seems to have an extremely updated system. At my last blood draw, the phlebotomist used a wireless machine to scan my ID bracelet and another wireless device to print out the appropriate labels. Despite technology, there is always room for human error.

On another note, I spoke to my doctor today and he reported that my PCR test was still undetectable.

My Letter to Dana-Farber

This is the letter I sent to Dana-Farber following my missing PCR test from December.

Dear Dr. Weingart,

I am not sure if I should be sending this letter to you, so please feel free to pass it on to the appropriate person. I have been a patient at Dana-Farber four 4 years now. I have had an excellent experience being treated for CML. As part of my protocol, I have routine PCR blood tests every 3 months.

I came in yesterday for a checkup with my oncologist and to have a new PCR test completed. I was stunned to find out that my last test, which took place in December, was never completed. I had come in on a Saturday in December to have my blood drawn. Since it is hard for me to come during the week, I often go to the infusion room that is open on the weekend. After the blood was drawn, I did call my oncologist to check on the results. He reported undetectable findings which I was quite pleased about.

When I spoke with my oncologist yesterday at our meeting, I asked for a printout of the labs from December. He could not find any other tests for that date except for  a CBC. Under the PCR test, it said “Pending”. Upon further investigation from the oncologist and his nurse practitioner, the laboratory did not know what happened, but my blood and test results were not processed appropriately.

It is unclear to me who might be at fault for this error. It certainly could have been the nurse who took my blood or potentially the laboratory. Of course, my doctor should also have noticed that the information he provided me was inaccurate as well. Upon speaking to another CML patient who receives treatment at Dana-Farber, she reported that the same thing had happened to her.

I wanted to make someone aware of this issue in case this is a systemic or computer problem. Fortunately for me, my blood work has been excellent so I was not overly worried about my results. I would imagine, however, that if I were newly diagnosed, I would be extremely upset.

I appreciate your time.

Sincerely,

Jon Gershon

These are not a few of my favorite things

I had my 6 month visit to Dana-Farber today. I really dislike (perhaps hate) going up there. I like my doctor, but it is possibly one of the most depressing and crowded places I have been. It is a good thing I am not claustrophobic. Aside from the 2 hour ride to get there, I also learned that my last PCR test was actually not done. I had blood drawn in December and I called two weeks later to find out the results. The doctor told me it was undetectable, but he was reading my test result from September and not December. I am pretty upset about this for several reasons. On a practical level, I was mad because we drove up to the hospital on a Saturday. I waited two hours for a nurse to draw my blood. Apparently, that same nurse also forgot to send my blood for the test. Also, now I have not had a PCR test for 6 months despite the fact that this is supposed to happen every 3 months. There is nothing I can do about it now.

At today's visit, I had my blood drawn again and it was definitely sent for the PCR test today. My wife also asked about an H1N1 test, since I never had one. Thinking this would be a fast and simple process, I agreed to have this done. I was then told to go to the infusion room. I then waited a half hour. When I got in to have the shot, a nurse comes over with the needle. Guess who it was? The same nurse who lost my blood. I did not say anything because I am sure she has seen hundreds of patients since she saw me last.

Anyway, the waiting game begins again. I will have results in a couple of weeks. In May, back to Portland for a more pleasant oncology appointment.

4 Years

I just looked at my watch and noticed that date. It has been 4 years since I was diagnosed with CML. It is sort of amazing to me how little I think of this anymore. I do have to go to Dana-Farber next week. Four years ago, I could only imagine myself as a cancer patient. Now, cancer plays only a minor role in my life play. Thank you Gleevec!

I am grateful that I have had such luck in this fight and that CML has not become my life. I owe a lot to my family and friends who have supported me through this whole process. This diagnosis was probably a lot harder on them than it was on me.

I vividly recall that awful night 4 years ago when I got the call about my white blood count. I had just walked into the house with Chinese food. I never did get to eat that soup.