If this is your first time visiting my blog and wondering what is going on, here is the first 3 parts. part 1, part 2, part 3.
At the end of part 3, I mentioned my mother-in-law and how she started searching for a specialist who can help me. I needed to have a mini-interview with her to get more details to write this post. When I started asking her questions, she brought out little black note book. She showed me the inside of the notebook and to my astonishment; the pages were covered with information. I mean, names of organizations, doctors, phone numbers, dates with some events... it was the path and proof of how she found the doctors who can help me. She told me she carried that notebook everywhere she went. I knew she searched for specialists for me, and I have always been grateful for that, but looking at the notebook brought to me a new sense of gratitude towards her...
The first person she called was Dr. H. He was her Chiropractic/Homeopathic doctor in Maryland. She told him about me and what is going on and hoping that he would know somebody who could help me.
He knew three doctors who dealt with Kasabach-Merritt Syndrome. Mom contacted Dr. S in Minnesota first. He had experience with treating a boy with the same Syndrome with Interferon Alpha 2B (I guess that is a medicine to treat cancer patients). He was willing to come to where we are and treat me himself or talk to Dr. T.
She was very excited and told Mr.TRH and I about the doctor who might be the answer to our prayers. We talk to Dr. T about Dr. S and asked him to contact him. We all thought that Dr. T could learn more about my syndrome from Dr. S and they can work together since Dr. T doesn't know anything about my syndrome (as he admitted at first).
Mom also told Dr. T about Interferon Alpha 2B, and how Dr. S treated a patient with the syndrome with it.
I can't remember exactly how long it took, but I would say it was probably a week or two, we kept asking him to contact Dr .S. But he never did. His excuse was he was too busy or he has been trying but Dr. S never answers the phone, etc., etc... Whenever we went to talk to Dr. S we were able to get hold of him though, hmm...
Then, one day Dr. T told us that he will treat me with Interferon Alpha 2B. Mr. TRH and I thought "What?" He has never contacted Dr. S nor treated a patient with my syndrome with that medicine. Although, he was saying that he is familiar with the medicine and he is confident that he can do it.
We had so many questions and at the same time my suspicion of Dr. T grew more and more. Also there was an incident that happened while we were asking him questions. I still think about that moment sometimes, that was the moment that made me realize that I really don't care for Dr. T as a person. So wait, that might sound mean or harsh, but here is what happened:
Please try to picture the situation in your mind as I describe it to you...
So, we were asking him questions and told him our concerns. Dr. T seemed irritated... all of a sudden Dr. T put down the chart on his lap, closed his eyes and pinched the top of his nose between his eyes with his index finger and thumb.
Then, he opened his eyes looked at Mr. TRH and said;
"What do you do for living?"
For a second that question caught Mr. TRH and I off guard. What? Why is he asking that question? Does he think that we are not smart enough to understand what he is saying?
Mr. TRH answered "I am a software engineer." Then Dr. T only said, "oh." Then he went on talking...
Seriously, what kind of a question was that? It was totally out of context, no flow of conversation whatsoever. If his job was something that doesn't require intelligence according to Dr. T's standard then what was he going to say?
I didn't feel up to it, but at the time, I felt like I had no option. Either get an amputation, or give the treatment with Dr. T a shot. I agreed to do the treatment with Interferon Alpha 2B. The medicine is used for a wide range of indications, including cancer. Dr. T said that I might have a reaction to the medicine afterwards, and that is normal. I had at least two treatments, and each time I had chills, fever and felt sick afterwards. As I was shivering my gut kept telling me something is not right. I need to stop this.
I told Mr. TRH and mom about it too. She called Dr. S and told him that Dr. T started his own treatment, also the dose he was injecting me. Guess what Dr. S has said, "She needs to stop that treatment immediately, he is killing her."
The day I was supposed to have another treatment, the three of us went to Dr. T's office. Since mom is the one who found the doctors and was mainly talking to them, we wanted her to be there and tell Dr. T exactly what Dr. S said.
We expressed our concerns, and asked him why he is not contacting Dr. S and believe me we were very calm and nice when we were talking to him.
I could tell Dr. T was starting to get irritated and upset. He asked us "So what do you want me to do?" (I was thinking to myself; well, we have been asking you to contact Dr. S haven't we?). I can't remember the exact conversation word for word but basically he told us that if we can't trust him or what he is doing he doesn't want us to come back, ever. With that, we left the office.
I didn't know what was going to happen next, but I knew he wasn't the doctor who could help me and I didn't want to come back to see him.
As I mentioned before, most of the doctors I have met over the years were nice, and I could tell they were really trying to help. I have great respect for them.
Still to this day I wonder why it was so hard for Dr. T to contact Dr. S. Is it so hard to admit that you don't know something and ask for guidance? Protecting his own ego seemed more important than saving someone’s life? I don't know. I am not Dr. T.
Meanwhile, Dr. S told mom that Dr. E in Massachusetts General Hospital might know more than him. So, mom gathered all the medical records and sent them to Dr. E. At the time, he was out of the country, and we were eagerly waiting to hear from him...
To be continued...