Sad News

This blog has been an important vehicle for Ed to share his progress with his family.  I am Ed's girlfriend, Lisa and I wanted to pass on to anyone currently reading this blog or anyone in the future what has happened with Ed.  We lost him last week to a hemorrhagic stroke.  The bleed in his brain first caused him problems in Sept of 2012.  It was discovered then that on top of the ITP he had a cavernous malformation in the pontine area of his brain stem.  The cat scans showed that there had been   a small amount of bleeding in this area prior to the Sept stroke but because his platelet count was higher that the current typical 2,000 range it was able to heal itself and not cause any serious issues.  In Sept with the low platelets added in it caused the stroke.  He was able to recover from this but it made us both painfully aware that the two competing conditions where deadly.  I will be honest I have been scared ever since.  The week of the 7th of Jan was a rough week.  You can read back and see that his hemoglobin dropped to 5.2 and his white cells where lower than normal.  He was going to the hospital daily for either platelets which stayed around 2,000 or hemoglobin.  On Thursday we went to the hospital for hemoglobin.  Everything seemed somewhat routine as any other day of transfusions however, Ed wasn't feeling well and he was very eager to get home.  He was scheduled to go in Friday for his platelets.  We left the hospital and when we arrived home Ed said he felt like he might be able to go to the bathroom.  A few minutes later he was calling me, he was throwing up and thought he was having an allergic reaction to the transfusion.  I very quickly realized something else was going on and called the ambulance.  Ed had suffered another much worse hemorrhagic stroke and even though they gave him platelets the bleed was so significant that this time we lost him to it.  The doctors said that the throwing up was most likely caused by the stroke itself.  I did some research and this does seem to be true.  The throwing up more than likely also increased the significance of the bleed.  I want to be able to  give advise to others that may be in this situation but I don't know that I can.  I guess the best thing to do is to stay close and ask the person throwing up questions.  This was how I recognized that he wasn't simply throwing up but that something more serious was going on.  He was talking and fine one second and the next he didn't know what month it was.  The moment you notice that call 911.

I just want to give you a quick summary of Ed's other condition that contributed to the stroke, ITP.  This condition has been our life for the last three years, starting with me noticing some unusual petechiae around his ankles.  That led him to asking his doctor about it and from there the diagnoses of ITP was given.  At that point his platelets where anywhere from 20,000 to 80,000 dipping down below 10,000 as time went on.  Ed actually kept a spreadsheet that tracked his blood counts from the beginning.  We looked for something to correlate but nothing really stood out.  This year was rough because his platelets stayed below 10,000 and mostly were right around 2,000.  Just last month, after the 4th bone marrow biopsy I believe, they saw that the bone marrow had depleted to 1% and that discovery led them to diagnose Ed with Aplastic Anemia.  He wrote about the multiple day treatment that we hoped would make a difference in Dec.   The treatment did not show any positive results so the next step was a bone marrow transplant.  We were walking down that path when his life was cut short from the stroke.  I pray that no one has to suffer from these conditions but I know it's out there.  There is not enough research into any of these conditions and somehow we need to keep pushing the medical community to find a better way to treat ITP and associated conditions.   The problem is that ITP really is not a condition but a symptom.  Finding that underlying condition proved to be difficult in Ed's case.  If they could have identified earlier would the outcome of all this been different.  For me it's hard to say but I do know if they had he would not have had to go through the treatments that were unnecessary, like the removal of his spleen.  If you have this or any condition please remember you are your own best advocate.  Push your doctors for answers.  I wish you the best of luck.  Thank you so much to Ed's family and friends for all your love and support to Ed and to me.  ~ Lisa