Hope Floats... NOT

Those who know me would say that it takes a lot to frustrate me. I have learned to handle bad news like a pro but I am a human who has feelings..just like the rest of us and I felt like I needed to write to the doctor who is treating me at John's Hopkins one last time to let him know from his patient's point of view what it's like to have hope taken away. Below is my letter to him and his quick response back to me. We will see if it goes anywhere. As they say... "Hope floats..." NOT!

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Dear Dr. Sack,

When I came back home to New Jersey from the trip to John's Hopkins, this past July, and reported to my family and friends how the appointments went with Dr. Hucheons (GI) and you..I was filled with hope that a doctor had wanted to take on the challenge of "Stacy." That there was a chance that I would not have to have a Hickman port in my chest for the rest of life or give myself painful Lovenox injections 2xs a day indefinitely.

Words cannot explain how disappointed and hopeless I feel in the 6 months that have elapsed since my appointments with you and I have not heard a word about the results of the fancy CT Enterography that you requested I undergo (and you confirmed you received ) or what the plan will be, if any.

I always wish that my doctors would be open and honest with me. If they feel they cannot offer me help that they tell me up front that their services are not for me.It is so upsetting ,for me and my family, that I took 2 trips to your facility looking for help... and I left each time with that hope of finding help, to actually finding nothing at all.

I just thought you would want to know how upset and disappointed I am.

Your Patient,
Stacy Hirschberg

Below is a message from my blog The Light at the End of the MRI :
2009
"I must say that I've been to hundreds of doctors offices through the 20 years of my "medical life" and I have never ever encountered such kind, caring staff who love their job, do the maximum, and are out for the patent's benefit. We were quickly ushered into a private waiting area, vitals we're taken and we were waiting for the doctor .. not 2 minutes later he walked (more like bounced) into the room and immediately we knew-- this is a good guy. He made us feel at ease, talking about our lives, baseball and our trip down . He took us into a medical room-- hanging Uncle Mickey's jacket for him, offering him coffee, and had us sit down to start the visit. We were in there for 2 hours and 20 minutes. He eased into the medical review and since Uncle Mickey accompanies me to most of my important doctors appointments, he's quite familiar with my history and the two of us make a great team. (for those of you who don't know-- Uncle Mickey is also a doctor) Dr. Sack, gave me the most thorough evaluation that I've ever had.. He didn't leave any stones unturned and was so grateful that I came to see him we kept saying "no, we thank you !" To make a long story short (if that's possible... ) He thinks that he can help me.. He feels confident that he's going to research me and come up with an answer ... either he'll figure out a way to fix me, or I'll be like this forever... but I will get an answer (which is worth so much !) I currently feel like a ticking time bomb.. and I may always be but at least we'll know. He does studies on mice .. that have my problem, does it get any better than that?? This man has seen what I have (in lab mice ) but still.. he's worked with it .. So we're confident that I'll get answers. "


Dr. Sack's Response:

Dear Stacy,

Thank you for your note. I certainly understand your frustration. Unfortunately, your follow-up has not gone smoothly and this has many explanations but no excuses. I’ll check again today to see how to get things back on track for you.

GHS