Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Emergency Protocols and Information >> Emergency Protocols and Information >> Binder of medical information http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1294184104 Message started by Starflower on 01/04/11 at 11:35:04

Title: Binder of medical information
Post by Starflower on 01/04/11 at 11:35:04

I just put my binder together this week! After looking at Ramona's list as well as the pdf from TMS...

http://www.tmsforacure.org/documents/Binder1.pdf

Here's the table of contents I came up with:

1. Diagnoses and symptoms
2. Protocols for ER and surgery
3. Contact information (for me, doctors, family)
4. Insurance information
5. Current list of medications
6. Allergies and triggers
7. Personal medical history
8. Family medical history
9. Drugs to avoid
10. FceRI antibody test results (the key to my disorder)
11. Other recent lab results
12. Article about mast cell activation disorders
13. Article about FceRI antibodies
14. Article about histamine intolerance
15. Article about mast cell patient experiences

You can find links to ER/surgery protocols elsewhere on this site. The pdf from TMS includes a list of drugs to avoid. The articles I included are the ones that have been the most useful to me... it really depends on your specific type of mast cell disorder. Here are links to the articles (or at least abstracts) in case you're interested:

12. http://www.ncbi.nlm.nih.gov/pubmed/21035176 (this is about more than MCAS... it outlines all the different types of MCAD)

13. http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=article

14. http://www.ncbi.nlm.nih.gov/pubmed/17490952

15. https://tspace.library.utoronto.ca/bitstream/1807/17688/1/sever_sibbald_d'arville.pdf

I put all of this information in a 1" binder with my name on the cover and a big caduceus symbol... with number divider tabs so anyone can flip through easily to find what they want.

Heather

Title: Re: Binder of medical information
Post by Lisa on 01/06/11 at 14:14:03

Looks Great, Heather!

Good Job!!!

[smiley=thumbsup.gif]

Title: Re: Binder of medical information
Post by Riverwn on 01/29/11 at 04:19:14

GREAT list Heather :) Im gonna add recent labs to mine and more to educate medical staff--theyre asking for it!
Hugs,
Ramona

Title: IMPORTANT REGARDING: Binder of medical information!!!!!
Post by Joan on 02/03/11 at 17:38:54

[size=14] My doctor was writing me a letter (from the TMS "Emergency Room Protocol" documents) to carry with me to the E.R., when she discovered a contradiction about muscle relaxants. The text on page 19 regarding tolerated muscle relaxants and ones to avoid is the reverse of the chart on page 22 regarding muscle relaxants.

Does anyone know which are really the muscle relaxant "Drugs to Avoid" and which are the muscle relaxant "Drugs Typically Tolerated"? Be sure to mark this problem in your packet.

Title: Re: Binder of medical information
Post by Lisa on 02/04/11 at 01:01:15

Joan,

Take a look at the REMA protocols. They're considered the best out there and they have Dr. Castell's involvement too.

Title: IMPORTANT CORRECTED MUSCLE RELAXANT INFO
Post by Joan on 02/04/11 at 04:31:05

I heard back from Valerie Slee at TMS. She said to please change the chart on page 22 of your TMS Emergency Protocol packet to say:

Pancuronium and vercuronium are typically well tolerated.[/font]

AVOID Atracurium, Doxacurium, D-tubocurarine, Metocurine, Mivacurium, and Succinylcholine.

These were mistakenly reversed!! They will change their posted version as soon as they can.

Title: Re: Binder of medical information
Post by Riverwn on 02/13/11 at 16:04:22

The only thing I would like to point out here is. some people with notebooks are still having problems because ER staff wont take the time to read all the info during an emergency (they might later)... The first page is extremely important--it tells them what to do with your care that might be different than other people... my example;

--------------------------------------
ANAPHYLAXIS DISORDER !
multiple allergies

EMTS; I skip throat swelling and go into cardio vascular collapse so get an IV line in as quickly as you can, or you will have trouble getting one period. I will need Benadryl 50 mg IV and SoluMedrol IV, I may need epi depending on my BP and the severity of the episode.

ER STAFF; I will need SoluMedrol IV if I havent had it yet, I will also need Zantac IV, and if the episode is severe and I am having diarrhea, please place a bedside commode next to my bed and do not leave me alone--I may pass out. Please draw a Tryptase level within 2 hours.
---------------------------------

From my experience, I find that emergency personal really need direction from us--quickly, in simple terms and direct. We can give them extended information after the emergency has passed. Thats when they take the time to read our notebooks.

I am also adding more info about what mastocytosis is.,. print outs of good articles... they are asking for them!

Hugs
Ramona

Title: Re: Binder of medical information
Post by Riverwn on 02/13/11 at 16:10:05

I wouild also like to mention an other thing we should all do that will help us during an emergency. An EMT told me to do this!! I called our local 911 EMT call center and gave them information about me as a "patient with special needs". Now, if I call 911, this will pop up immediately and they have my information before they arrive :)

I also called our local electric company and let them know I am in a life threatening situation if the power goes off (In summer , the AC) so if there is a power outage, they will put my residence at the top of the list for repair.
Hugs,
Ramona

Title: Re: Binder of medical information
Post by Joan on 02/25/11 at 12:22:40

Great ideas, Ramona! I could use some info at the EMT service. The last time they came, and I understand why, because my bp was 170 over ?? and my heart rate was 165. But, the conversation went like this, "I think I need epi." "Do you want epi?" "Do you think I need epi?" "Do you want epi?" "Yes, I think I need it. It will bring my bp and heart rate down.(Explained about mast cell disease)" "Are you sure you want it?" "Yes." "What if we transport you to the hospital and you can get it there?" At the hospital, "I think I need epi." "Do you want epi?"...... :-X ARRRRGH!

Title: Re: Binder of medical information
Post by Riverwn on 02/26/11 at 15:03:53

It would be funny if it werent so serious LOL..The EMTs and Hospital staff are recognizing me and remembering me--that helps.. and they grab the notebook to pass around.. I love it that they are learning.. and it helps my episodes be less severe with their knowledge base growing. Thats the best part.
Hugs
me

Title: Re: Binder of medical information
Post by summerfields on 03/01/11 at 11:54:39

Quote:

It will bring my bp and heart rate down.

Please forgive me for what may be a dumb question, but I still haven't understood yet how this works.

I've hesitated in the past to use an Epi Pen just because my reactions nearly always include tachycardia (I call it "machine-gunning": too fast to count) and feeling like I'm fainting, with blackness coming over me in repeated waves, among other cardio-vascular effects. Luckily, I've always lived past these episodes.

How DO I know if I need Epi then, or if it would be bad for me? The doctor had warned me that it was bad for heart and brain, but she didn't explain anything further as to what I DO need in times of emergency.

I've always figured I shouldn't have anything that speeds up my heart even faster. It doesn't work that way?

So far, I don't really know what I should put on my ER protocols, since I may be different than others here, although I am now carrying the sheets from the Emergency Protocol book.

How can Epi bring down a racing heart? I had always assumed it was for jumpstarting a failing heart.

Title: Re: Binder of medical information
Post by Joan on 03/01/11 at 15:25:34

In the case of a SM episode, Epi stabilizes your mast cells so they aren't dumping mediators into your bloodstream that cause the tachy in the first place. Actually, I do notice an initial "buzz" with the epi, but it very quickly slows everything down and shuts down the episode. After using epi, you must lie down and remain quiet for a while, which will reduce the chances of a heart problem.

Now, this is all assuming that what you have is SM or MCAD/IA. If carcinoid syndrome and other similar problems haven't been ruled out, then you might not want to take epi, as it could cause worse problems if you have carcinoid. If you have been diagnosed SM or MCAD/IA, other things have been ruled out, and you feel like you're going to pass out, the epi can save your life.

If you have a good mast cell expert doctor, you might want him/her to explain more about epi when you're in there. Of course, it's a trade-off because passing out isn't so good for you either. There are several other things you can do if you feel faint. One is to squeeze your knees together. It raises the blood pressure. You can also lie down with your feet elevated, or you can sit down and put your head between your knees.

When you first feel the episode coming on, take extra H1 and H2 histamine blockers with a glass of water, and then sit down. You might head off the faint feelings. I know what you mean about symptoms coming in "waves." It's really awful! I usually take 1/2 mg. Ativan if I feel afraid of what's happening. Of course, check with your doctor before trying anything new.

Title: Re: Binder of medical information
Post by fuchsia1 on 05/24/11 at 14:03:33

Heather, thanks for the helpful list that you are including in a medical notebook. I wanted to ask you about # 13. Article about FceRI antibodies. Which article do you use? Marie

Title: Re: Binder of medical information
Post by Starflower on 05/24/11 at 16:07:10

Here's the best one I've found:

http://www.nejm.org/doi/full/10.1056/NEJM199306033282204#t=articleTop

Although this article is from 1993, there hasn't been a lot of research about this antibody! I've seen one article about asthma... nothing about anaphylaxis. It also shows up in some people with lupus and scleroderma (two other systemic autoimmune disorders), but nobody is sure why or exactly how this antibody functions in the human body.

Heather

Title: Re: Binder of medical information
Post by fuchsia1 on 05/25/11 at 02:26:03

Thanks, Heather, I think I will make a copy for my folder as well. Have to think if I should give a copy to the rheumatologist or if it might offend her. She is pretty accepting of what info I bring her though.

Unlike you, I have a lot of organization left to do for my medical tests and info. I have made a chronological list of what I consider important doctor visits and tests which has come in very handy. Good luck on your upcoming visit to the mast cell specialist, Marie