It was a long day and a long evening at the library, but here I am eager to write to all of you about something that has been on my mind.
Last week I was feeling very sad about my dad's passing. This journey of grief is definitely a rollercoaster. There are days that I feel so good and there are days that I feel so low. I think about my dad almost everyday, but doing this blog has given me some discontent about the situation. Even though it feels like just yesterday, my dad passed away 8 months ago now. I will never completely jump over this hurdle of missing my dad, but I'm slowly coming out of the stage of unconsciousness. Before it was all just a bad dream and now, the dark clouds are starting to clear and give way to light.
So the more I sit down to investigate about CJD with this blog the more I feel like my dad was lost between the cracks. I do believe that this was God's plan for my dad, but I also believe that He gave us free will. This free will can lead us to make decisions that don't come from God and therefore, perpetuate death and destruction in the world. This is clearly represented with war, pollution, murder and among many others, disease. This is my own personal belief.
With this in mind, I've been feeling trapped behind all the unknown and conflicting information about CJD. This especially hit close to home, when I got to thinking about how we still haven't received my dad's autopsy results. My step-mom is the power of attorney so really the whole thing is out of my hands. However, I went ahead and did some investigation on my own. Several sources that I found stated that autopsy results and testing for CJD should take no more than 10 weeks. It has obviously been way longer than that and that makes me feel uneasy and confused.
I called my step-mom to discuss with her about my feelings and she filled me in on the situation. It turns out that the CJD survelliance center and my dad's doctor have been sending her through hoops. When she contacted the surveillance center they said that the autopsy results can only be given to the patient's doctor. From there, my step-mom understood that the results would be faxed to my dad's doctor. She went several weeks and never heard a word from Dr. Hill. She called him and he stated that he never received a fax. She then called the surveillance center and they supposedly said that they don't fax the results; they only send them by mail. Can you believe this run around? This was my dad's life; it should've been handled with the utmost care!
My step-mom realized after talking to us that this all didn't add up and it wasn't fair. She pressed the issue more and finally, recieved some confirmed information this Monday. He stated that my dad's autopsy and test results were finished back in March, but the fax that the surveillance center supposedly sent never made its way to his office. Can you believe this?? Well, he confirmed that my dad was diagnosed with Sporadic CJD. This calmed my worries and at the same time, made me feel very suspicious. I'm beyond thankful that it is not the familial variant, but now I'm full of many questions.
Why did this whole autopsy take so long? This is a rare disease and this was a person's life, you think they would have been more careful. This just frustrates me. Being that he passed away from the Sporadic variant of CJD means that there is basically no hard core fact as to why it happened (Just like some people suddenly acquire cancer or have a heart attack for no apparent reason). However, all of this talk about Mad Cow's disease and how it has been found in animals here, but there are no confirmed cases of this variant in humans definitely fills me with doubt. It just doesn't make sense. My dad was an avid hunter and ate all sorts of meat, including deer, elk, buffalo, etc. You name it, he ate it.
Are they hiding something from us? (They being the USDA or the government) Are they just saying that it is sporadic so that we don't question about Mad Cow's disease?
We need to know more!! If there is more than just what we see on the surface, than we all are at risk for CJD.
Please continue to spread the word!
-Lacy
Ps. I had the radio on as I was writing this and one of my dad's songs was played "Listen to the music". I totally felt him here with me at that moment. Is he telling me that I'm heading in the right direction with all of this?
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3 comments:
Wow!! I will comment more tonight. You moved me Lac.
Love you,
Ellie
Lacy, way to go to ask these questions. Keep pushing for answers!! I agree with you! I don't think the centers for disease control have a good handle on this disease and they don't want to create a media nightmare so it is just easier to label it sporadic and just not look into it further. There is a high incidence with this disease in meat eaters and hunters.
All I know is when I told my doctor that my brother died of CJD the first thing out of her mouth was "was he a hunter?"
In my gut I believe Larry got this from eating some animal meat/brain at some time and we may never know when or where as his exposure was so high and it lay dormant until the all the right stressers occured(age, flu and then the death of my dad). Thanks for getting the answers about the autopsy, the whole family appreciates it. However I could have guessed what they would say.
You keep up the fight!!
Love, aunt Monica
I truely believe because there is confirmed BSE (Mad Cow) and CWD (Chronic Wasting) found in Deer and Cows in the US that there has to be people out there that have died from the nvCJD (New Variant CJD). How can it be in animals, humans eat these animals that are infected and no one has had that variant? And now that Dad has been tested there is no going back. If it comes out that the CDC and USDA/FDA have been hiding things there is now way to retest Dad's Brain Tissue. It has all been used for this "sporadic" variant. And speaking of the manner that the "Autopsy" was performed. The Tests were supposedly completed and sent to 3Doctors March 21. And yet no one called the family. My poor Father suffered through this aweful disease to have no one give a damn about the Autopsy. So frustrating. Dad would say "They're snowing us, just snowing us." Iknow that we as individuals can't do much. We can donate money which is great for the CJD foundation to have for more research, etc. And the more money the better. But maybe if we stopped enjoying the Beef that could be (if hidden from the Citizens of the USA) a huge reason people come down with disease. I don't know it all so overwhelming that people suffer and die from CJD and if the Government is hiding this from us... what can we do?
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