Need some positive vibes
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Road Warrior
Joined: Feb 2007
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RE: Need some positive vibes
Thanks or all the kind words of support. After posting that long diatribe, I arrived at the hospital today to find out that for the third day in a row his platelet level is up. Only by a couple of points, but it is "trending upward" as they like to say, which is a positive sign. The first time since he's been dealing with this that it has happened. It was a huge relief for both my wife & I. Our little guy (well, not so little anymore, but still our "baby"...lol) is just getting choked he's still in the hospital, which I guess is a good sign too. The last few days he was hurting too much to care. We're just keeping our fingers crossed this will continue, and the long promised return to normal levels is only a few days away. We're hoping to a release from the hospital by this weekend. He'll probably be off school for another week, to fully recover from the splenectomy, but then hopefully will be pretty much good as new. Again, thanks to all of you.
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Joe Kucinski
Road Master
Joined: May 2007
Posts: 993
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From: Southern California
RE: Need some positive vibes
I was diagnosed with Thrombocytopenia when I was about 5 years old. I never felt sick but was denied playground recess because of the bleeding issue. My Mom moved us to Southern California so I could go to Childrens Hospital in LA. She took me every week for 5 years. Medication did not work. Splenectomy did. Been healthy ever since....Oh, just turned 56 a couple of days ago.
Former Sponsor
Joined: Jun 2007
Posts: 401
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From: Murrieta, CA
RE: Need some positive vibes
My son had TTP at the age of 12 months. When he got this in 1979 he was the first person under the age 18 to ever get this disease. At that time 80% of the people that got it died. He was in a comma in intensive care for 6 weeks and they told us everyday that he was going to die. He hadpurpura fulmina in his legs and they wanted to amputate both feet above the ankles if he did live.
That's where we started. They absolutely could not stop the drop in platelets, his platelet count was 30 and he was fading. We prayed and keep the faith. They continued to try everything and nothing worked. Eventually they flew in a Hematologist from the east coast. He gave my son plasma and after a few days and a complete blood transfusion he was out of the the comma and the disease had subsided. He did end up losing his toes on both feet but he is 29 years old and a great kid, he runs my manufacturing business.
I know what your going through. You think the nightmare will never be over but God has a purpose for everything and everyone. When my son was sick I signed releases to try several experimental treatments one saved his feet. Do yourself a favor and read all you can about this condition and talk to the doctors and make sure they explain eveything to you. If your not content with the results move him to another facility. May God bless and our prays are with you.
That's where we started. They absolutely could not stop the drop in platelets, his platelet count was 30 and he was fading. We prayed and keep the faith. They continued to try everything and nothing worked. Eventually they flew in a Hematologist from the east coast. He gave my son plasma and after a few days and a complete blood transfusion he was out of the the comma and the disease had subsided. He did end up losing his toes on both feet but he is 29 years old and a great kid, he runs my manufacturing business.
I know what your going through. You think the nightmare will never be over but God has a purpose for everything and everyone. When my son was sick I signed releases to try several experimental treatments one saved his feet. Do yourself a favor and read all you can about this condition and talk to the doctors and make sure they explain eveything to you. If your not content with the results move him to another facility. May God bless and our prays are with you.