Hi All,
This is my first posting to this ITP website partly because I have been in denial and the other part of me has had a tough time wrapping my head around this. I will give you a brief history and then cover my recent month and a half. For most of my adult life I had been a blood donor and in fact, I became an apheresis donor. That's right, I donated platelets and often was asked to be a double bag donor because of my blood type and the number of platelets I produced. So you can imagine what went through my mind in July 2009 when I was being worked my for knee surgery. My pre-surgical testing had me with a platelet count of 57K, the orthopedist wanted me checked out. I saw my PMD, and my platelets were some 48K. Off to a hematologist. I was placed on a Prednisone taper starting at 80mg/day and received my first infusion of WinRho. This gave me a nice boost up to 152K in my platelets and I had my knee surgery.
Three months after surgery and my platelets were in the 180K range so I was very happy. My yearly physical had good results for 2010 provided me with good results, so ITP was out of sight and thus out of mind. However, in May 2011, while doing lawn work, I slightly banged the leaf blower off my left ankle. Nothing painful, bearly an ouch. However 3 days later the ankle was some 4 times too big and turning purple all the way around. Now I am realizing that my platelets must be low so a trip to my PMD and the hematologist and I received a call at 11:15pm on a Thursday evening, your platelet count is only 14,000. This was an all time low. ITP was back. Instead of going to the Emergency Department that night, being married to a Critical Care Nurse has it's perks, I had to see my hematologist that very next morning. In his office my platelet count was 19,000. Once again, a Prednisone taper and a long taper at that, over 3.5 months, starting at 80mg/day. I also was given 3 infusions of WinRho over the next 3 weeks. I had a great response to this in July 2009, however, this time I was slow to respond. My counts went from 19,000 to 24,000 to 39,000 to 55,000. Though they were trending up, nothing like my initial response. Now the discussions of further ITP treatments - Splenectomy vs. Rituxan. However, we decided to hold off while I was on the steroid taper. My counts definitely came up so by September 2011 my platelet count was 188,000 and by January 2012 my counts were back to 212,000. This is where I lived when I was a platelet donor but my donating days are long since over because you never know what may happen.
Now for my recent history, not wanting to believe that I now have an autoimmune disease process going on, I didn't want to think about it. You know one thing that I have come to realize about this, I do think one's peace of mind and outside stressors can play a part in this disease process. When I first learned of ITP in July 2009, I lost my brother, 45 years old to a cardiac arrest, and though life goes on, I think that this had an affect on me that I did not realize. In December 2011, we had to put my Dad on home hospice and he lived until this past September 22. It was during his last week when we had to move him into an inpatient hospice facility that I started to see random bruising. After he passed away, I checked my platelet count out. Now mind you in January 2012, I was at 212,000 and feeling great. In September 27, 2012, still feeling rather well except for bruises on my legs, nothing else bothered me. Another late night call from my PMD on a Thursday night at 11:20pm - bad news- my platelet count was 2,000, now an all time low and even my Critical Care Nurse would not allow me to stay home. Off to the emergency room and a 3 day stay in the hospital. I received a transfusion of platelets, and was put on 120mg./day of Prednisone. I am now down to 80mg/day of Prednisone. After leaving the hospital and seeing my hematologist, my platelet count was 199,000. A great response. However, short lived. Yesterday's count was 97,000.
Yesterday was my first Rituxan treatment, a 6-hour infusion. In researching all the treatment options, there really does not seem to be one real great one. The best thing I can say is try to get as much information as you can get and ask questions. Spend time with your doctor and ask the questions. Treatment options are all individualized as well. I chose Rituxan, not because I want to put medications in my system that may and can have side effects but because I am a 54 yo male who has had several abdominal surgeries in the past, I am over-weight, and the idea of taking out the spleen without reassuring odds that ITP goes away, led me to try this treatment option. I planned for the worst and yesterday made out alright. They pre-medicated me with Tylenol, Benadryl, and Hydrocortisone. I tolerated the infusion well and slept through most of the infusion. Today,the day after I have a headache and feel sluggish, tired. If this is the worst of this, I can accept it. However, a positive mind will also be a friend. I still have 3 more weeks of infusions so I will be posting weekly to share my experiences.
If I can help anyone while going through this, I will do my best. We are not alone but there appears that there are not many of us in the general population. I am very grateful that I found this PDSA website.
To all who travel this journey, please know you are not alone, there are others who share your fears, thoughts, and concerns. Stay well and look for that peace of mind whether it be in your child's smile, that special someone, your spouse, parent, friend, doctor, spiritual person, or just in a song, hobby, etc.
ITP doesn't have to be a death sentence, I know I will not let it get the best of me.
Thank you for letting me share my story.
Topic Author
.