"I believe in Christianity as I believe the sun has risen, not only because I see it, but because by it I see everything else." ~ C. S. Lewis (Yes, even politics)
In loving memory of Mr. Z
Tuesday, October 20, 2009
Mr. Z had AMYLOIDOSIS.....this is not to scare, just to educate
Weakness
Weight loss
Shortness of breath
Numbness or tingling in the hands or feet
Diarrhea
Severe fatigue
An enlarged tongue
Feeling full after eating smaller amounts of food than usual
Dizziness upon standing
Swelling of the ankles or legs
Also, porphyria-like symptoms on his hands....THAT was his first symptom about 4 years ago, and it had gone away long before he was feeling full, dizziness upon standing (caused by low blood pressure typical in this disease), and had a slight shortness of breath. His cardiac involvement is what caused his sudden, early, and unexpected death.......... If this saves one life, Mr. Z would think it's worth my sharing this information. If you haven't already, please read his LAST POST, I think you'll be blessed.....thanks so much. God bless you all and keep you healthy and happy. Z
Thanks, everyone. Joe, I just want to make some sense of losing my sweet man. If his death could help someone..if people can just cherish their spouse a bit more ..
Ducky, if the pill chemo he'd been on for 3 weeks hadn't brought numbers down, I'm not sure how long the doc would have kept him on them but the next step would have been infusion chemo...again hoping it helped bring the proteins down...that apparently could have gone quite a few months, even up to a year. It's a race for the drugs to work faster than the amyloid's working against you. If it had brought the proteins down, THEN, there would have been a heart transplant so he'd be strong enough to have the pretty effective bone marrow stem cell transplant that has had some success. This is why some other types, amyloid in the kidney, for example, is easier to 'cure'(tho, really, they refer to it as 'regression')....there are those who've survived 15 years with that one.......but the heart's having been thickened by the proteins was our big problem.
Maggie....someone recently said this disease, or any rare one but particularly this one, has a kind of phrase doctors use "If it sounds like hooves, it's a horse........but it could be a zebra"
They don't look for a zebra, usually, because shortness of breath, dizziness, etc., can all be heart things...porphyria can come and go......the symptoms are very attributable to many other diseases; this one hitting approx 8 in a million makes it difficult for doctors to know much about it. Mr Z was so impressed that our docs were good enough to know when they'd run out of inspiration and brought in the bigger guns, who did diagnose him finally...but it took a month for the definitive answer even after they suspected this one...tissue biopsies, bone marrow biopsies (which he did with no anesthesia)...
Z, thanks for that informative respose. It is a blessing to feel and know that you have good doctors. Many people never have that comfort. I can see how difficult this would be to diagnose. At least you know that, under the circumstances, all that could be done, was done.
Z, it's good of you to post this. I can see how this disease could be missed. So many of the symptoms seem to be in common with other conditions or diseases.
Thanks Z, we can never have too much information, and this disease was so under the radar, because of it's rarity.
Thanks for the information. Since some blood types contain more proteins than others, I wonder if there is some connection with amyloidosis and blood type. Just curious.
Z - thanks for the info. 15 years of medicine and I have never seen nor heard of a case (until now). Studied it, of course, but wouldn't know it if it bit me. Thanks for the education.
Thanks, Z. Hopefully they'll find a cure to this disease and/or it will stay rare. Let me know when you feel ready to meet up. I'll make sure we're available.
Sounds like one of those conditions where the cure can be worse than the disease itself -- at least in the advanced stages. What an ordeal he -- and you -- would have had to go through. That must be some consolation at least for his early death.
Thank you for putting up that video. You are very noble for doing that to honor your husband. I am so sorry for what you are dealing with right now. I do say we must always count our blessings indeed. Always look towards the light.
Thank you for this information, Z! Those of us in the healthcare field always need to be educated in rare diseases.
I know that my experience with Stephens-Johnson Syndrome taught me that most doctors don't know about rare diseases until faced with diagnosing them. That is frightening!
This post and video were incredibly informative - and will surely become valuable resources for those people who will sadly go in search of this disease, or its symptoms, in the future. You are courageous, beyond words, to think of others during this difficult time in your life.
Your desire to help others is a beautiful legacy to the life of Mr. Z.
"Freedom is never more than one generation away from extinction. We didn't pass it to our children in the bloodstream. It must be fought for, protected, and handed on for them to do the same, or one day we will spend our sunset years telling our children and our children's children what it was once like in the United States where men were free." -- Ronald Reagan
remember
Andrew Breitbart...American Hero
Mac 'n GeeeZis my food blog...enjoy! Sorry I haven't added to it in a long while.
President Obama has done such a horrible job with the economy and foreign policy that now Kenyans are accusing him of being born in the United States :-)
important reminders:
We are surrounded by IDIOTS...Mr. Z
“Barack Obama's political genius is his ability to say things that will sound good to people who have not followed the issues in any detail —regardless of how obviously fraudulent what he says may be to those who have. Shameless effrontery can be a huge political asset, especially if uninformed voters outnumber those who are informed.” Thomas Sowell.........AMEN Tolerance is the last virtue of a dying society. (doesn't matter who wrote it, it's true and it's here)
The modern definition of 'racist' is someone who is winning an argument with a liberal.... Peter Brimelow
The difference between golf and government is that in golf you can't improve your lie. ~George Deukmejian
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27 comments:
Is this the season of rare afflictions, or what?
One of my family members is being treated for a rare disease, though not as rare as the disease Mr. Z had.
Oh Z, I'm so sorry .. Bless you and yours..
I'm curious, z. How is this treated?
It sounds as if Mr. Z experienced the protein buildup around his heart.
What would the preventative measures have been? Diet? Medication?
Thanks for the info. Hopefully it will protect others.
WOW! What an informative video! Thank you for sharing it.
I wonder how many physicians need to see that video compared to how many already have.
You are a special blessing. We continue to pray for you during your adjustment period.
Thanks for this informative post, Z. I know it must be difficult to share this right now.
I did not know about Amyloidosis, and had to look-up porphyria-like symptoms. Gosh, how sad that alone did not clue the doctors.
Still thinking about you, praying for you.
Thanks, everyone.
Joe, I just want to make some sense of losing my sweet man. If his death could help someone..if people can just cherish their spouse a bit more ..
Ducky, if the pill chemo he'd been on for 3 weeks hadn't brought numbers down, I'm not sure how long the doc would have kept him on them but the next step would have been infusion chemo...again hoping it helped bring the proteins down...that apparently could have gone quite a few months, even up to a year. It's a race for the drugs to work faster than the amyloid's working against you.
If it had brought the proteins down, THEN, there would have been a heart transplant so he'd be strong enough to have the pretty effective bone marrow stem cell transplant that has had some success.
This is why some other types, amyloid in the kidney, for example, is easier to 'cure'(tho, really, they refer to it as 'regression')....there are those who've survived 15 years with that one.......but the heart's having been thickened by the proteins was our big problem.
Maggie....someone recently said this disease, or any rare one but particularly this one, has a kind of phrase doctors use "If it sounds like hooves, it's a horse........but it could be a zebra"
They don't look for a zebra, usually, because shortness of breath, dizziness, etc., can all be heart things...porphyria can come and go......the symptoms are very attributable to many other diseases; this one hitting approx 8 in a million makes it difficult for doctors to know much about it.
Mr Z was so impressed that our docs were good enough to know when they'd run out of inspiration and brought in the bigger guns, who did diagnose him finally...but it took a month for the definitive answer even after they suspected this one...tissue biopsies, bone marrow biopsies (which he did with no anesthesia)...
Z, thanks for that informative respose. It is a blessing to feel and know that you have good doctors. Many people never have that comfort. I can see how difficult this would be to diagnose. At least you know that, under the circumstances, all that could be done, was done.
The information could indeed save lives. Than you for sharing it and may He Who Is God grant you joy.
Z, it's good of you to post this. I can see how this disease could be missed. So many of the symptoms seem to be in common with other conditions or diseases.
Thanks Z, we can never have too much information, and this disease was so under the radar, because of it's rarity.
Pris
What a horrid and painful disease. I am truly sorry for Mr. Z and anyone who is afflicted with this terribl illness.
Thank you for sharing, it is very important to get the word out.
Thank you for the education.
thanks for this info, z. i pray you are well. i know THIS is now the tough part, beginning your life in a new way. God bless.
Dear Z, Thank you for sending this, I've passed this information on to as many people as possible.
I remember how proud you were of Mr Z when he had his bone marrow biopsy with no anesthesia. He was so brave.
Praying for you! Me!
Thanks for the information. Since some blood types contain more proteins than others, I wonder if there is some connection with amyloidosis and blood type. Just curious.
Z - thanks for the info. 15 years of medicine and I have never seen nor heard of a case (until now). Studied it, of course, but wouldn't know it if it bit me. Thanks for the education.
Thanks, Z. Hopefully they'll find a cure to this disease and/or it will stay rare.
Let me know when you feel ready to meet up. I'll make sure we're available.
Z, good job educating people. Your right, this is a good memorial to him, trying to save soemone else. Hang in there my friend.
z - Thank you for sharing that information, even though it must be a hard.
I hope all the prayers and support from your friends are helping you to go on.
Thanks for sharing that Z. Will keep it in mind.
Sounds like one of those conditions where the cure can be worse than the disease itself -- at least in the advanced stages. What an ordeal he -- and you -- would have had to go through. That must be some consolation at least for his early death.
With so much hitting so many dear people in our world, it is good to be armed with the information for early detection. Thank you Z for doing this.
I add my thanks to the comments above mine, Z. This is important information for sure! I don't believe most of us have even heard of it before this.
God bless you!
Thank you for putting up that video. You are very noble for doing that to honor your husband. I am so sorry for what you are dealing with right now. I do say we must always count our blessings indeed.
Always look towards the light.
Thank you for this information, Z!
Those of us in the healthcare field always need to be educated in rare diseases.
I know that my experience with Stephens-Johnson Syndrome taught me that most doctors don't know about rare diseases until faced with diagnosing them. That is frightening!
This post and video were incredibly informative - and will surely become valuable resources for those people who will sadly go in search of this disease, or its symptoms, in the future. You are courageous, beyond words, to think of others during this difficult time in your life.
Your desire to help others is a beautiful legacy to the life of Mr. Z.
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