Thursday, November 10, 2011

Untold Story of My Medical History Part 4

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...


  1. oh my gosh, this could be a movie... I can't believe you lived it! Have you thought about writing a full memoir? Thank you for sharing such a personal story.

  2. Ack! Your story is so frustrating to read about with that doctor! I'm so's amazing how some doctors really get it and some just don't. Like being humble.

  3. I am sure you know how fortunate you are to have your mother. I have a few medical conditions that my doctors are unfamiliar with. I ended up having to learn about them on my own and teaching my doctors. They are very busy and don't really have the time to learn on their own or to even remember what I have given them. It is an ordeal every time I have to see them. At least they respected me enough to listen to me. I am glad Dr T "fired" you as a patient. Please listen to your gut when it comes to the medical profession. You must be your own advocate and if your doctor does not accept you as part of the team-fire him and find one that will. They are not perfect and if unwilling to work with you don't deserve your money or time.

  4. I'm so glad you followed your gut.

  5. I've been reading your story with great interest, as I used to work in the medical field (as a med tech in a hospital lab). Unfortunately, as you know, there are good doctors, and bad ones, just as in any profession. I'm SOOO sorry you had to learn this the hard way! I WISH we had a better system here to report things like this. Good for you for making others aware that they need to trust their gut, and to do their own research! It's hard to walk away from an incompetent doctor, but necessary. So glad you did. It pains me that you had to do this twice (so far).

  6. Sachiko, I have just caught up with your personal story. Thank goodness for those people in our lives who step up when life gets tough.

    It is disheartening and, in some cases like yours, devastating when you work out that a professional person is not capable. As a veterinarian, I know that we are all human beings and that we are all fallible but I remember that I felt like I had reached a certain level of achievement when I could say "I don't know the answer" to a client and then work through it, instead of bluffing and blustering through.

  7. Your story continues to keep me on the edge of my seat...luckily for me I haven't had to see too many doctors and no where close to as many as you have had to deal with. These doctors seem so egotistical!

  8. wow! First of all: you have such a GREAT husband! Mr. TRH is SO nice and he seems so loving. And your mother in law is great! I can't believe that she had to go and do the research instead of the actual doctor. Thank God she was so proactive! It's great learning about your story. Thanks for sharing!

  9. That's just downright scary. Glad you trusted your gut and kept looking for a better doctor.

  10. I want the whole story right now ;) keeps me coming back each week to find out what happens next!

  11. Thank you for sharing your story. I am so mad at the doctors. It makes me sad because I've had so many good doctors, I can't imagine such horrible men out there.

  12. I am so sorry that you're having to go through all of this. I really hope that it all works out well and quickly. Thank goodness for loving family.

  13. I work in a profession where I have contact with physicians for my clients' sakes. Many of them are ego-maniacs. Every once in a while I find one who sincerely just wants what is going to help their patients. You are one of my heroes. You are so full of positive energy, gratitude, and creativity. I will daily pray for you.

  14. I had a doctor who wouldn't refer me to a specialist for my problems. I had seen a specialist where we lived when I first had the problems, but when we moved I had to find new doctors. I honestly believe it is that they want the money. If another doctor treats you then they don't get paid. If he had to work with another doctor he wouldn't get paid as much. That, and some doctors think they know everything, or are some kind of god. It is very frustrating. There are good doctors out there, but sometimes they can be hard to find. It is so wonderful that your mother in law was so helpful in finding a good doctor for you!

  15. I am following your story with great interest. After caring for my mother with dementia for 13 yrs, I learned the hard way to be my own advocate. Dr.s are not God and do not have all the answers. I began to educate myself and be knowledgeable when talking with the Dr.'s. I learned a lot about who to trust and who NOT to trust.
    I can't wait for the rest of your story.
    Gmama Jane
    Stop by for a visit at my blog


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