Tuesday, October 20, 2009

Mr. Z had AMYLOIDOSIS.....this is not to scare, just to educate

Amyloidosis is the disease Mr Z passed away from. He was diagnosed approximately 3 months ago but they figure he had it for quite some time, though he only started feeling really unwell about six months ago. Please watch this video clearly explaining the disease, especially if you're in health care. If you don't care to watch the video, please see the early signs of amyloidosis listed below. Early detection can save your life.

Amyloidosis Awareness from Cartoon Medicine on Vimeo.

Symptoms:
  • 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

27 comments:

Always On Watch said...

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.

What Was I Thinking? said...

Oh Z, I'm so sorry .. Bless you and yours..

Ducky's here said...

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?

Linda said...

Thanks for the info. Hopefully it will protect others.

Joe said...

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.

Maggie M. Thornton said...

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.

Z said...

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.

Z said...

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)...

Maggie M. Thornton said...

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.

shoprat said...

The information could indeed save lives. Than you for sharing it and may He Who Is God grant you joy.

Anonymous said...

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

Leticia said...

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.

Brooke said...

Thank you for the education.

namaste said...

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.

Martha said...

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!

cube said...

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.

Dr. John said...

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.

FrogBurger said...

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.

Chuck said...

Z, good job educating people. Your right, this is a good memorial to him, trying to save soemone else. Hang in there my friend.

sue said...

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.

MK said...

Thanks for sharing that Z. Will keep it in mind.

Faith said...

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.

HoosierArmyMom said...

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.

RaDena said...

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!

lisa said...

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.

Jen said...

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!

Miradena said...

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.