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A wonderful experience


Ernie
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Hi everyone,

I have been resting since Saturday and now I feel up to sharing my experience.

I went to give support to my niece who was giving birth on Saturday. She also has POTS and NCS and she just found out last Tuesday. Since she did not know much about the disorder she told her doctor to ask me the questions. So, I ended up talking to the obtetrician and anesthesist about the etiology of our disorder and discussing plan of treatment in case of C-section.

The anesthesist did some research and came back in the room with the document. So we discussed again the "case" and agreed on a plan of action. I think I spend about 30 minutes with both doctors. I had to stand up for my niece because they wanted to give her a medication, which made me crash 4 years ago. I did not want my niece to become disabled so I really had to insist on not giving her that medication.

I am really glad that I have learned enough during the past 2 years to be able to talk medical treatment with doctors, otherwise my niece would have crashed. I am also glad that the doctors believed my niece and me and did not think that we were psychogenic or just wanted some attention.

That's a very different experience for me because as many of you know I went from being diagnosed as Munchaussen, Psychogenic syncope, conversion disorder and finally to POTS and NCS. Now I am starting to be the medical advisor to the doctors for my family. What an ego boost!!!!!!!!!!!!

I think there is still hope for all of us.

Ernie

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Ernie, that's so cool. I always say that there really are some good docs out there...you just have to keep hunting. Your relative is very lucky to have one of the good ones caring for her. Kudos! Nina :)

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Guest tearose

It so nice to hear that good things happen!

Your niece is also lucky to have you for a relative!

Are you going to send a consulting fee to the doctors? :)

Keep the good news coming, tearose

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Thanks everyone for sharing my joy and excitement.

My niece got a little boy, 7 lbs, 2oz. He has long hair and is very strong.

My niece did not need a c-section but she ripped off from one end to the other.

She did not feel that pain and was just so proud to finally have her baby.

The anesthesiologist respected what I told her about aggravating medication so she changed her plan of action.

My niece pushed for 40 minutes and the baby came out in one shot liike a bomb. The obstetrician just had time to catch him because he would have fallen on the floor.

My niece started to have symptoms when she was a child but nobody paid attention to it because more than half of my family are fainters and we thought that everyone fainted regularly. So after I came back from NIH last year I told my niece about our having a family disorder. She was already pregnant but wanted to find out. So she got the result 4 days before giving birth.

Tearose, I had so much personal satisfaction after the anesthesiologist figured out the medication strategy when I explained to her which medication are aggravating and why and which medication we can handle and why and she believed me! The anesthesiologist later told me that she found our case very interesting. I thanked her for taking the time to do research for my niece and to take good care of her.

Ernie

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Guest tearose

Ernie, this story is very special!

I think you should write this one down and put in a special folder when you need some positive reinforcement!

Because of you and your knowledge, you made a big difference in the lives of:

your niece

her unborn son

an obstetrician

an anesthesiologist

the delivery room staff

and others that will now follow

You also made all of us very proud!

Way to go auntie! tearose

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Ernie

Congratulations to your niece on a most wonderul accomplishment, and for her new joy.

Just curious how she got diagnosed during pregnancy. I didn't think a tilt table test, for example, was really a good idea or even used as a diagnostic tool during pregnancy. Also, when I was really sick with POTS during my pregnancy, my doctors kept saying that it was really impossible to diagnose me with anything b/c of all the variables that occur with pregnancy. This was so frustrating to me!

Katherine

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:) Ernie You are the man!!!! I am married to a physician (30 years). Ehen I started having problems, they were individually treated. My husband suspected that it was a dysautonomia, but .... I truly believe that you should present the information to local medical societys and residencies if you are near any. The association has wonderful handouts, and if your doc is there you could do from both perspectives!!!!!! I have walked into ER's in different states to get an IV and people have just believed me. Then complimented me for knowing my body. You have a gift--rock on

p.s. Igo to Mayo Mon--but didn't know this was genetic?????

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Miriam, I'm sure Ernie will tell you herself ... she's the woman :P and you're not the first to make that error--I've done it too! :) And good for you for being able to get what you need out of the medical system.

I'm a bit spoiled to with my own personal live in medical professional--helps me have a bit of info ahead of time so that I have fewer lousy doctor visits. On occasion, though, I still have a doctor who fails to meet my exepectations.

Nina :)

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Hi,

Thanks again everyone for you encouragement. Tearose, you made me see things from another perspective. I really appreciate that.

Katherine,

When my niece had her TTT she did not know she was pregnant (2 weeks).

It was not difficult to diagnose her because POTS and NCS runs in my family and my niece went to my specialist. She has had symptoms all her life so she was easy to diagnose. It was more like, ..... my aunt has POTS and NCS, I have so and so symptoms can you confirm the diagnosis? It's not like for me who has been looking around for a diagnosis for 30 years before getting it. I am the first in my family to be diagnosed so I am opening to doors to the other members.

Miriam,

Just in case "you are the man" means you think I am a man ..... I am a woman! Don't worry about it. I know it's very confusing in English. In French, Ernie is short of Ernestine.

Yes, mine is genetic.

It's funny that you talk about informing doctors because this is something that interests me. Do you have any idea how I could go about it? ie Do I have to call the hospital administration or cardiology. I would even be willing to give conferences to doctors and ambulance personnel. I live in a university city and we have many teaching hospitals. I prefer to inform doctors while I am still coherent compared to waiting until I get rushed to the ER. I would like to be proactive.

Could you also explain "my gift"? I am sorry if I am asking you so many questions but you got me interested in doing more for dysautonomia and you seem to have know how that could help me. So if you don't mind helping me out!

Good luck at Mayo.

Thanks

Ernie

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Guest Julia59

Ernie that is excellent! Out of all the bad and GOOD things you have had to go through in the last few years, you have learned a lot.

And now you were able to take that wisdom and help your niece----& her baby.

I had the pleasure of a couple of new Docs in my life taking my seriously. They were willing to listen and LEARN about dysautonomia---and chiari. I went a couple of rounds with my PCP----but I finally won his respect on the continuing ignorance of dysautonomia.

He agreed that it should be handled a different way when they don't know about the subject---------basically, not blame the patient and then tell them they need psychological help. I told him in most cases any psychological issues that develop are almost always secondary to the dysautonomia. And then it's usually bacause of the very ignorance we talked about. It was so nice to see him smile and nod his head with approval.

I'm so proud of you that you were able to help so many at once. Bravo for you!

I once heard a wise person say that "it's all the little glimmers that add up to sunshine".

Congratulations,

Julie :0)

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Ernie,

That is a wonderful thing you did for your niece and for future patients of those physicians!!

If you would please pardon my ignorance and educate me on the effects of anesthesia and C-sections in someone with POTS. I have had 2 C-sections, both prior to being dx'd. My first was because he was a big baby and I have a small pelvis. I believe they called it Celopelvic dysportion. Anyway, he was a conehead when he came out! My second was because my water broke and I never dialated. Not even fingertip. I had a harder time bouncing back after the second. Even though I don't plan on having anymore children, knowledge is power!

Congratulations on your new nephew!!

Jill

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Hi,

I just got to look at the video I did last week! Wow, I am surely glad to have it because this time I could really see my nephew being born. I was so excited last week that I was wondering if my camera was set properly. It was! I'll make a copy for my niece as a souvenir.

I would have liked to have a movie when I was born. I am curious to know how my mother did!

Ernie

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Guest tearose

I'm not sure Ernie, but my mom was probably drugged and totally unaware! Women were so "prudent" in my baby days. I think my mom would have been unwilling to be filmed.

regards, tearose

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