I'm not actually sure what I'm going to say here. I've been pondering writing this post for about three months now. I'm really, really annoyed at certain organizations posting obituaries and saying "died from complications of Addison's" and giving no specific information. It terrifies me to think I could die from "Addison's complications" and not have any idea what these complications might be or how to avoid them.
I feel like the organizations and families of people who have died from "Addison's complications" are doing the Addison's community a HUGE disservice by frightening us when they could be enlightening and educating us, sparing other Addisonian's from untimely death or being frightened of these "complications".
A brief digression, I was on an Addison's Yahoo board and saw this quote,
"When I was first diagnosed with AD, my boss (a woman) said, "So you've got a disease that makes you tan and lose weight. And you want to fix this?""I immediately emailed the poster, Fran Segerson, for permission to use the quote and wrote this post. I could tell she was a spunky, fun woman from our exchange!
Later in the summer, I read Frans obituary in an newsletter. When I eventually put together that the quote was from her and she was dead, I contacted her family to ask what had happened. Her daughter was kind enough to respond with the information below (she gave me permission to share the information) that helped clear up the ambiguous "complications" explanation.
"It appears Mom passed from Addison's complications. She was fine and then got a stomach bug while on vacation in Spain and i think she knew she needed to go to the hospital but didn't want to get in the way with the rest of her travelling party so she stayed back and probably just got really dehydrated. We unfortunately aren't going to know exactly what happened until they finish the results of her autopsy. They say it will take at least 2 years. It's so hard to not know but after discussion with her traveling companions and from living with her- i think it was what i stated. Sorry for your loss- i know mom was a great friend to everyone and a resource for lots of other Addisonians. Best of luck. Patti Wohl"Also from Patti: Absolutely , use whatever is helpful... I moved back in about 5 years ago because when she did need help it seemed to be escalating faster than when she was younger. In fact the last few times she needed to go to the ER she got so dehydrated so quickly she started to lose her rational thought and it became a struggle to get her there, once hydrated she would thank me for getting her there and she would be back to her 30 year old energy and atitude for life( she was 63 but no one could have told her that)! My sister never saw her in distress and had no idea it could get that bad. Her doctor here is convinced that she passed from a coronary event brought on by dehydration. She had no heart issues at all. My mother would be so proud of you for doing what you are doing. She had said several times early on that she felt so alone with the Addisons but since the email groups ect.... She felt like an important part of a vital community.
April 22nd is the first anniversary of Fran's death. I think there's something that all Addisonian's can learn from her death, dehydration is dangerous and can kill you, go to the hospital when you need to, keep your injection kit in working order and don't be afraid to use it because too much cortisol is better than too little in an emergency (that's my contribution to the lesson).
Some info to let you know what a great woman Fran was and how well respected she was
- http://www.dot.state.ri.us/documents/news/interchg/Fall2009.pdf page 20
- http://www.wtsinternational.org/uploadedFiles/Chapters_-_Community/Rhode_island/Document_Library/WTS-Rhode%20Island%20-%20Newsletter%20Summer%202009.pdf page 4, bottom right
- http://www.seapubs.com/eBulletin5-21-09/obituaries.htm
- A bike guide dedicated to her memory: http://www.dot.ri.gov/bikeri/
6 comments:
I totally agree with you, Dusty, that it would be so helpful to know what the "complications" were--otherwise, how are the rest of us going to learn from what happened?
Dehydration seems like such a benign symptom, like, "I was a little dehydrated..." but it IS a matter of life and death in the life of an Addisonian, and it can quickly escalate. Family members need to be able to quickly identify symptoms of dehydration--because, like Fran, the Addisonian may not be able to help themselves if they become disoriented or combative.
And DON'T expect anyone at the hospital to be able to assess and treat as fast as you might need them to. Like you said, use the injection and ask questions later.
I totally agree with you, Dusty, that it would be so helpful to know what the "complications" were--otherwise, how are the rest of us going to learn from what happened?
Dehydration seems like such a benign symptom, like, "I was a little dehydrated..." but it IS a matter of life and death in the life of an Addisonian, and it can quickly escalate. Family members need to be able to quickly identify symptoms of dehydration--because, like Fran, the Addisonian may not be able to help themselves if they become disoriented or combative.
And DON'T expect anyone at the hospital to be able to assess and treat as fast as you might need them to. Like you said, use the injection and ask questions later.
So do you Addison's folks think these "stomach bugs" people get are actually bugs/viruses? Or are they triggered/originate from heading into an Addison's crisis? I've done a ton of reading about people's experiences with crisis, and "stomach bug" seems to be the most common beginning of a crisis. Just wondering if it's actually a bug, or if it's just the first symptom of the crisis.
Erin,
Great question!
My perception is that there is ALWAYS something that precipitates a crisis. A crisis looks like a stomach bug so it's probably hard to tease out if a stomach bug caused a crisis or if something else caused a crisis which caused vomiting. One thing is for certain. Vomit twice and inject with solucortef then transport to the hospital for fluids.
I don't necessarily thing that the "stomach bug" symptoms are the first sign of crisis either. I think so many of us IGNORE the first symptoms of crisis: increasing fatigue, "heavy" arms and legs, cold to the bone, nausea, shaking, low blood pressure. I think vomiting almost never comes before the first symptoms (listed above) of crisis.
Completely OPINION.
:) Dusty
I stumbled on your blog after searching for causes for my increase in crisis/near-crisis experiences this year.
In February, my adrenal crisis began with a little dehydration and what felt like a "stomach bug." This crisis put me in the hospital for several days and out of commission for weeks. I avoided the second potential crisis a few weeks later by recognizing my symptoms and just TAKING the extra hydrocortisone (like you said, it's hard, but necessary, to overcome steroid guilt).
I've had several adrenal crises and potential crises over the past 6+ years. For me, many of them begin with nausea. Always, though, the first symptom is muscle cramping, especially throughout my hands and feet, and dizziness. In the crises that sent me to the E.R., dehydration was also always an issue.
I am a bit different in that I have Secondary Adrenal Insufficiency due to an ACTH deficiency with no cause--my pituitary just quit doing its job. But my lack of ACTH means that my adrenals don't produce cortisol, and all of this leads to adrenal crisis just as with Addison's. I'm glad to have found your blog--good luck with your training. Exercise has been difficult for me in the past few months, and with the fatigue, hunger, weight loss, and nausea that I feel every time I get back into my fitness routine, I feel like my body is on strike. I'll continue to check up on your blog to see how others' experiences might help me. Thanks!
Jenny-Celeste,
Welcome to my blog! I am supposedly secondary also, who knows really though...
Please check out my Addison's Support forum www.addisonssupport.com There are lots of really smart, active people who love answering questions there.
"Exercise has been difficult for me in the past few months, and with the fatigue, hunger, weight loss, and nausea that I feel every time I get back into my fitness routine, I feel like my body is on strike."
Sounds like you need to increase your steroid or optimize timing and dosing for exercise. You are describing symptoms of under replacement. Just my .02.
Thanks for your comment!
:) Dusty
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