You Are Never Alone!

Do you remember how you felt when first diagnosed with ITP?

Were you afraid, confused and felt all alone?

Bobbie Scott was given the bad news when she went to the emergency room for an eye infection. A CBC showed a platelet count of 16 and she wound up staying in the hospital for three days getting IVIG infusions.

What a shock!!! I'll let Bobbie tell you the rest of the story....

After receiving the IVIG for 3 days my platelets increased to 344 on July 31st. That was the first time I went to see a hematologist in Owen Sound, and he was going to perform a bone marrow biopsy and aspiration on me, but decided against it since my platelet level was high, and in the normal range. I was told I had to get bloodwork done weekly, just to monitor my platelet level.. and they are as follows.

August 8 - 208 
August 15 - 88
August 22 - 92
August 28 - 137   

At this time, since my platelet count had decreased and had been all over the place, the hematologist decided to perform a bone marrow biopsy and aspiration on me. I was given about a 5 minutes notice about it, and I'm so thankful that my husband was with me. We were cramped into the smallest room ever, it was me, my husband, the doctor, his nurse, and the man who was collecting the specimens. The localization freezing needle was such a burning pain and since I was so nervous as well, I was crying and moaning in pain. The whole procedure was awful. The doctor tried to make me feel comfortable by talking to me about other topics but I was in pain.  My husband, Derek, held my hand the entire time, and when it was all over he nearly fainted and had to be sat down on the floor. Seeing a loved one in pain can be very upsetting, and I think that is what caused him to nearly faint. -- Thankfully , the results of the bone marrow and aspiration came back with normal results and no cancer in my bones. 

September 6 - 74
September 13 - 81
September 18 - 54   

The hematologist decided that he would now try me on prednisone. Normally it's a dosage of 1mg/kg that a person weighs, and I weigh 60 kg. However, he started me on half of the dose at 30mg prednisone for a week, and then decreasing by 5 mg each week following.

September 25 - 158
October 2 - 110
October 11 - 100 

 The hematologist decided that he wanted my platelets to stay in the normal range for multiple weeks in a row, so he increased my dosage back to 30 mg. He stated that he wanted me to take the 30 mg continuously for 3 weeks.

October 16 - 166
October 23 - 122
October 30 - 94  

Now, the hematologist has decided to increase my dosage to 50mg prednisone for 2 weeks, and then 40 mg for 2 weeks. When I went to see him on this date, I waited a total of 2.5 hours to see the doctor and only saw him for about 10 minutes. He stated that if I had come in originally with a platelet count of what I had at this time, he wouldn't have started me on prednisone. However, since my platelet count is all over the place, he needed to treat me.
 
The next day, October 31st,  I was at work when I got a phone call from the hematologist's nurse on my work phone line. She stated that she wanted to make sure I was up to date on my immunizations, especially streptococcus, haemophilus, and Neisseria, because they may perform a splenectomy on me eventually if needed. 

What a way to get news ! The hematologist did not once mention this to me when I saw him the day before! I was very upset to get news like that over the phone with no warning, and I cried in front of my boss and my co-workers. I don't want them to take my spleen. It is the one thing in my body that fights off illness, and I don't want to lose it. I said to the nurse on the phone "what if I don't want him to take it?" and the nurse said "there are plenty of people in this world walking around without a spleen". 

Yes, this may be, but I don't even know how long I was living with low platelets, and I felt FINE! I don't know when my platelets started going low. I have no idea. I'm so completely frustrated because I can't control what my blood is doing. Is there something I can do to change my diet? Exercise? I want to do everything I can to not let them take my spleen at this point in time. I'm struggling with getting advice from my sisters, and my mom, and my husband, and my dad. I just don't know what to do at this point. I've also stopped taking my birth control (since it was the only thing I was ingesting into my body that could affect my blood possibly) to see if that will help or not. 

If anyone has any advice for me, it would be greatly appreciated. My tear ducts have almost completely dried up, because there's nothing left there anymore. I just need a positive, uplifting thing to happen because I don't know if I can take reading on my bloodwork -- platelets (LO).

Since Bobbie sent me this email, she has joined an ITP support group on Facebook and has received wonderfully encouraging support from fellow ITPers. 

I was also able to connect her with Margie Doman who also lives in Owen Sound and Dale Paynter who heads a support group in that area. The amazing thing is that Bobbie works in the same office as Margie's doctor and Bobbie's mom and Margie were classmates in school!!!

Lesson learned.....No matter where you are, how you are diagnosed, or what you (don't) know about ITP.... Help is right around the corner. Maybe not in the same town but with the ITP Support Groups - you are never alone!