coloredblood

I WAS ABOUT TO ASK THE SAME QUESTION! I am 22 weeks pregnant. Also my first baby. I have met with cardiologists and maternal fetal medicine (MFM), high risk OB/GYNs and my Ob/Gyn whom I have been seeing for years and years. MFM is who everyone is looking to for answers. I have been given a plan A and a plan B. I wanted to see what other women have gone though and how it went.

Plan A is get to the hospital early in labor and put in an epidural really soon into things. Lots of monitoring and keeping me laying back the whole time. Delivering vaginally.

Plan B is get to the hospital early in labor and put in an epidural really soon into things. If anything doesn't look right or if I'm not doing well or if baby is not doing well, do a C-section.

Most of the doctors are on board for this, but I have found some are worried about me going into labor at all. It is a lot better for the baby (as I've been told) to go into labor naturally and then go with plan A if possible. It's exciting and scary!

I'd love any input too!

I have been drooling and spitting all over the place. I can't seem to stop. I have no idea why but all of a sudden there is a huge increase in my saliva. Any one else experienced this? I don't expect there is anything to do about it, just curious.

Thanks.

I am Atlanta based and would love to join in too!

Thank you SO very much for all of your stories, comments, and advise. You have giving me a lot more to think about and make me feel inspired. Keep it coming! It's the biggest decision I've ever thought about.

I am 24 and have had POTS for about 4 years now. I am stating to think about long term life. I'm not sure if I can even have children (I have endometriosis) but I want to hear if anyone has decided to try to have kids after getting sick. I know some of you have had second and third children after being sick, but I really want to hear if anyone decided to have the first child sick. I would love to hear about your experience. I'm trying to gather information. I also want to know How do you raise young children when you are sick and symptomatic? Please share anything and everything!

It took me a year and 4 months. You can't hold your breath waiting for them. I wish you luck. I hope you get in with them sooner than I did!

~Coloredblood

I've had 5 surgeries. With open heart there were complications with my heart rate being all over the place both way too high and was too low. It was harder to breath after being under so long. but I came through ok.

I talked with my Dad about this today. He and I have been wondering the same kind of thing. I'm 23. He brought up that older people may have just had to live with it. POTS is a relatively new thing. As far as I know it's only really been looked at for about 20 years. I imagine that people who have been sick for 30 years or so have given up on finding out what is wrong, so they haven't been labeled and haven't found their way here. It's just a though, but seemed logical to me.

~nancy

I had open heard surgery a year ago. I was under for 6 hours. My bp dropped to 2o BPm and the doc hit me with some Atropine and I came right back. Besides that It all went smoothly. Make sure you tell your anesthesiologist and your doc. I think all will be well.

<3 Nancy

I do that all the time. All the time. I hate it!!!!

For about 2 weeks now i can't stop shaking. my hands are almost out of control. I can't really hold onto things because I keep dropping them or tossing them by accident. I always have a little bit of a hand tremor. But what did I do? any ideas? any ideas on how to make it better?

~Coloredblood

I am out of surgery and out of the hospital. I did well. It went mosty smoothly. I am hurt6ing a lot but i'm hoping to get better from the surgery fast.

~nancy

I had open heart surgery 4 months ago. I didn't post it here because they only tole me 12 hours before. I had 2 huge masses in my heart that turned out to be clots. I'm 22 years old. This was hard to take. As I recovered and am still recovering i still had really bad chest pain. But not in my heart. SO the docs have said it's the wires holding my sternum together that are rubbing my nerves and hurting the tissue. Tomorrow they go back in and take them out. I crashed last time. They got me back with some atrapine. (sp?) but I find myself hurting a bit tonight that this is my life. I'm 22 years old. I'm really tired of wondering if this is all my life will be, all I'll ever be. Wish me luck tomorrow. I'll be out fo the hospital in a short time frame hopefully.

~nancy

My GYN is pushing for me to get an IUD because I did fertility testing and my egg count is high. She doesn't want me to end up pregnant when my cardiologist said I really shouldn't be/ couldn't handle it for about 3 years. (I had open heart surgery from clots from a complication from a port 4 months ago....ain't it grand) I am doing shockingly well recovering but I really don't know if an IUD is a good idea. My body rejected a port...why not an IUD. I was on Nuva Ring for about 5 years. 3 years without POTS. I then got sick and it was still alright. My cardiologist forced me to stop is because of the hypo coagulation concern. Turns out that was brilliant. My GYN said if he (cardio) will let me she would like me on Mirana. My PCP agrees. If I can't do that then Para guard. I really would like to hear some opinions and experiences. I've heard a REALLY bad one. and 2 good ones from friends and family...none of them have POTS. any comment is helpful!

~nancy

sending lots of love and prayers.

Most boys get better. The girls are not so lucky. the split is huge between female and male recovery.

Hey!

I've had one for a year. I love it. My veins are impossible. Think long and hard about it. It's different for most people. It hurts less than getting 3 Iv sticks to get a vein, but the Port access isn't painless. It is still a big needle and it's in your arm or your chest. I have a power port in my chest. It's got about the same risk of infection. of you DO get an infection they tend to be a bit more serious. I haven't had one. I think it's easyer to take care of. In the hospital it's great. You have to get them flushed ever month so no matter weather you use it or not it has to be flushed. Also check with your labs. not all labs will use them. i still have to have blood draws done without my port at one of my main labs because they just don't do Ports. I hope that helps a little.

~nancy

GO YOU! That's wonderful. And dancing sounds like so much fun!

~nancy

It was from lack of blood to the organ. It was found with Blood work, X-ray, and CT scan.

So apparently almost 40% of my spleen died and all my Doc will say is that is was related to POTS. I want more info. I now have to keep my body from freaking out with a lot of a dead organ. It's supposed to regrow, however infection risk is high. Anyone have anything to help me understand?

~Nancy

I do both also. but I'm pale more often then red. I'm adrenaline.

I have 2 holes. Found them in testing to see what was up in the 1st place. The docs at Emory in GA and at Vanderbilt in Tenn both don't think that has anything to do with it, but I hope you are lucky and that's it!

~nancy

Yesterday was like this for me too. i've been sick for a year and some change too. I'm angry, i'm hurt. and I hear you! I haven't tried to get pregnat yet but it's a life dream for me. I also can't work. I am so mad that I feel lost and like i'm just kinda hear dealing with my daily problems. All I know is. You aren't alone. I'm not alone. and we can get through this together. we have gotten this far, eh?

~nancy

Born with Gi illness that went away after a year. Had GI issues all my life.

~nancy

SO! My hair is falling out. Not just a little. A whole lot.

I asked my new doc who doesn't know pots and she said it's because i just had surgery under General anesthesia. I've had 7 surgeries under general and never has my hair fallen out. I also don't think this doctor knows me of cares that much (she is temporary).

Anyway, has this ever happened to any of you? Any ideas as to what is causing it?

I haven't changed products. No more stress than normal. I checked my meds and they aren't the cause.

~nancy