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!

A Voice for ITPers

Dale Paynter is our special guest today. He has been very instrumental in getting the word out about ITP.

Dale started an ITP Support Group for the Toronto area in Canada and has done a number of interviews with the local media. He has also participated in the PDSA conferences here in the USA.

Hats off to this wonderful man and all the great work  he has done for all ITPers.

I guess it is my chance to add my mild little story to Greta’s wonderful blog – should be doing something while we are sitting here at the Hospital getting IVIg. Those who know me agree I can ramble on, so you might need to grab a drink and/or a snack to get through this….sorry.

My low platelet condition was discovered in the spring 2010 in an annual company medical (70 at the time).  My numbers continued to drop into the 30s and I was referred to a hematologist that same fall. We tried Dexamethasone to see if that would raise my numbers to no avail. She then conducted bone marrow tests and specifically found I have a protein clone that is attacking my platelets.  It is a bit unsettling when the first time you hear of a rare condition, you are told you have it. A great deal of time was spent scouring the internet to find absolutely everything about ITP.

Before my referral, I did a lot of thinking about a specific cause of my numbers. Looking back at old medical records showed 400 in 2007 and 150 in 2009. I had a bruising from a hockey injury about the same time as my 2010 medical – was this a cause or a symptom?  I had a large weight loss three years ago; did this trigger something?  I was a chronic worrier - is ITP stress induced? I have done a lot of youth volunteering with some tasks requiring long, late hours at certain times of year – did I burn myself out?   I may never know if it is one thing or a combination of things; many of us never will.

My numbers were somewhat stable in the 30 range without treatment, but I was concerned about an upcoming winter golf vacation in South Carolina with my 20 year old son. To be in another country (even the United States) with a different medical system was a concern should something happen. My hematologist suggested that we try IVIg to see how that would work, even short term. This was covered here in Canada, so we gave it a try. Four days put me back over 350 – did we the find the silver bullet first time? As we all know, IVIg is only temporary, but still we had something that worked if we needed.  That took so much off of my mind.

My haematologist has suggested that I would be a good candidate for a splenectomy, but that talk has been less recently.  I visited a friend who is a local naturopath about a year ago - we found a number of food allergies and also diagnosed Candida.  We successfully conducted several treatments to eliminate these, but this did not improve my platelet levels.

Over the past 20 months, I have had CBCs every two to three weeks, and IVIg for two mornings every four to six weeks when my numbers have been below 30 (lowest test ever 15). I have zero side effects from the treatments, and get really strange looks from all of the nurses when I say I am heading back to work.  Sometimes I wonder about trying some of the other treatments, but many are not available, approved or covered here in Canada.  We will be working on changing those kind of things up over time.

There are some things that we can obviously no longer do (play hockey) and we need to pay attention to tasks at work and home, but we are still active. I am volunteering with kids hockey (managing…off the ice), biking in the summer and curling in the winter (it is Canada).  I own golf clubs, but they aren’t very good.

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Back when I was first diagnosed two years ago, my hematologist gave me a small brochure that has ultimately changed everything and given me direction now that my sons are grown and off to university.  Many of you know of my deepening interest and involvement with the Platelet Disorder Support Association in the US.  Without being on a soapbox here, I can’t say enough about how PDSA and the people there have helped many of us with ITP.  My first conference in Boston in 2011 was magic. It was just so great to for the first time meet and talk with people live who have the same condition. 

I now facilitate one of two PDSA support groups in Canada, drawing attendees from all over the Greater Toronto Area. I have completed television, video and newspaper interviews in Canada and the US, as well as had the opportunity to speak at the 2012 Conference in Denver. My sights are set on establishing a ‘new’ regional fundraising event, and getting charitable donation status here in Canada.

Social networking has been a godsend in learning how many others really have this, and how other people have been treated and how they have responded, favourably or unfavourably.  I can’t imagine how difficult it would have been to be alone with this. I can’t say thank you enough to my worldwide ITP family.

Once again this is not about me. I have been able to manage all of this; I am fortunate that I have few (if any) of the other physical symptoms or medication requirements of a great number of the people I have met worldwide who have ITP.  It is SO important to get our word out, so our numbers know they are anything but alone.

My wife and I consider it lucky to have found this when we did and that I am being looked after before it could have been much worse or even too late. It has corrected some priorities.  

See you in Washington in July.

DP