I really need help in finding a good hematologist or doctor who specializes in ITP. I live on Kauai, Hawaii, but will travel if I am able. Here on Kauai, we have very limited choices as it relates to medical care, to the best of my knowledge there is only two hematologist that currently fly in to see patients. I am seeing one of the two. He is very abrupt, does not seem to know much about ITP, and refuses to provide any real dialogue. I guess the other guy must be better, it is really hard to get in to see him and he only travels here once a month.
I was diagnosed about one year ago with having ITP. At that time my count was 36. Looking back at my blood test going back to 2005, showed that I already had a low platelet count of 96, which was not caught by any of my doctors at that time.
For about a year my platelet count remained in the 30s. I was told my the hematologist that I really didn't need to see him again unless it dropped below 20, but that I should have my count periodically (monthly) monitored by by GP. About two weeks ago, after feeling really ill and finding that my blood pressure was 152/105, I needed to get checked out. I was feeling really ill, had a fogginess, high blood pressure, and generally just did not feel right. My GP noted that since we haven't had a count in a while, it was time to have it checked. My count returned at 23, My GP seemed alarmed, as she had always told me previously that ITP was not a big deal and that many people get it, go on a dose of prednisone and are pretty much cured. According to her, she treats about five or six people with ITP. She immediately made an appointment for me to go in and see the hematologist. I saw him about two days later. Another count was taken and it seemed to go back to 27. As I expected, he was not concerned and in his words, "there are a lot of others who are worst off then you, you don't have cancer, and you probably won't die from this". In the next five minutes he refused to answer any questions we had and simply deferred back to our GP. When we asked him about the high blood pressure meds I was recently prescribed, of which we noted that after looking it up, we found that it could also result in low platelets. He dismissed our question and simply stated "I have no opinion on that". He then asked me if I were sick lately, I explained besides the high blood pressure, I was generally not feeling well, and kind of feeling funky and in a fog for the last few days. He then dismissed us, and said that he needed to investigate this further, but that he didn't feel like we should go on treatment yet, because he suspected that I may have a virus which caused my platelets to drop, and that they may go back up.
About a week later, while at my GP office we received a call on my cell. It was the hematologist, he wanted to talk with me, he was on island so we went over to his office following our GP visit. The hematologist brazenly informed us that my count was now 20 (my heart sank). He then stated that it is time to treat you. I was stunned and my wife tried to get some of our concerns addressed by asking questions relative to my illness, which were not answered.
That visit was two days ago, of which I was prescribed 100 mg prednisone of which he stated I would probably be on for a month. My wife was concerned and wanted to know what other options we had. After pulling out what appeared to be his iphone and tinkering with it for a minute, he said that this is the standard of treatment that is widely accepted and that is what we needed to follow. My wife informed him that we recently found a mold in our home and were going to have it extracted and if this could possibly be the cause. He informed us that again he has no opinion on that, and that if we wanted to explore that we could get a referral to a infectious disease doctor, but that we should not put off treatment. We then asked about my recent bout with high blood pressure, he waved it off and said that the prednisone would not be a problem.
I picked up the medication but have been holding off. I want to get well, but I fear all the side effects, not to mention that the research I have done indicates that as little as 10-30% get a lasting benefit. Yesterday, we were scrambling to get as much information as possible about ITP, treatments, and research local doctors here in Hawaii, as well as, through the US. Many of the names I was able to get, we can't get past the person answering the phone. Thus far, none of the hematologist here specialize in ITP.
This is a really stressful time. I know other people have it worse then I do, and I am truly sorry for their struggles. However, I am scared and equally frustrated. I could truly use some help and guidance.
Some brief background: Life has not been easy, but I believe that I have been blessed. I am just an average person striving daily to be good to others, provide for my family, and live the life that God intends and purposes for me. Although, my faith has been wavering lately, I believe that even this too, will be used by God to show His glory. The problem is that I am human, even though God doesn't want me to worry, I do, I want to continue to be that protector and provider for my loved ones.
If anyone could give me some good insight as to a good hematologist or doctor that specializes in ITP in the Hawaii area, or even on the west coast, I would greatly appreciate it.
God bless,
Harry
