surfgirl14

I signed a paper saying that I can't talk about it but I can say though it is really hard and takes a lot of dedication. If you are ready to fully dedicate yourself and feel like crap then go for it! LOL it has been proven to help many recover from pots but I have had lots of flares and have been really sick since starting the program. I don't believe the program works but my doctor who referred me insist that i stick with it. He told me it will only get worse before it gets better. So I am trying to push through. I do think you have to have a doctor refer you though i could be wrong though. Wish u all the best

thanks guys. It is just hard to understand.

Hey guys. So I have heard here and there that you pots is life-threatning and that it isn't..... my doctor has said that it doesn't but I find that hard to believe. As time has passed I came across a rememberance video of someone who died who had POTS and also gastroperisis..... so that kinda scares me a lil. My question is does anyone know if it is life threatning? I think it is but my doctors beg to differ. I mean how can our heart rates go to 160 or more , fainting , sometimes not being able to eat , loosing lots of weight , and so on not be life-threatning? It frustartes me. Expecially when I am in a flare and am scared to death. But when I call the doc they say "yep thts pots for you , dont worry about it" I just wana scream , and say "are you kidding me"? grrrr Does anyone else feel this way?

OMG this is one of the worst things i get , that I absolutely hate! I look like im pregnant from how bad I bloat. I have tried diff. things too and it doesn't help. In the morning I will have no bloating but once I eat I am bloated. And it's not a little bit like most ppl get after, its a lot. LIke my entire stomach is decended after. ughh I hate being bloated all them time. ! I hope it gets better for you. One thing I noticed is the only thing that helps me is to not eat a big meal in one sitting. Eat small meals thoruout the day and it helped.

ok cool thax So is it counted as a actually surgery? Like where I am going to have it done is Duke Childrens Radiology. So you don't go to the recovery room after or anything? I find that weird

Hey Guys. So I have bee doing the IV fluids and of course as I thought and my doctor , they are woring! Hurray So anyways my doctor wants my mom to go ahead and set up the surgery for me to get a Port. So my question is doesn anyone have any experiences with the Port Surgery? Like if anyone has gotten the surgery for the Port , how did it go? What should I expect? How long in the recovery room? Any responses will be much appreciated. Thanks. ... Also I have never had surgery b4 ( I know this one is minor though). I have had a endoscopy done under general anthesia but that's it. I have never been cut open so kinda scared.

Hey Guys. So my doctor perscibed me this new medication that is supposed to keep my heart rate low. So this morning I took my first dose of it and I have been feeling dizzy and a weird every since. I feel like I am going to faint and jsut really dizzy. So I took a nap from about 1:0-0-3:30. When I woke up I still felt the same if not worse. So I took my BP laying down which was 74/50 so yea that worried me becuz it is never that low. Then I stood up and took it again and it came up a little but still low 88/60. My BP's are usually 90/64 somewhere in there to about 94/62. So that not the norm for me. Should I be concerned? I am a bit worried.

OMG that happened to me the first time last night i started freaking out ... was very scary!

oh gosh that doesn't sound good. Lucky for me the chairs were comfy and the blankets were warm and the nurses were nice. So that's good. I just didn't like how u didnt have any privacy. So yea but thanx.

Hey guys. So the fluids were amzingg, lets just say they are magic! lol... but the atmosphere was not the greatst. I was supposed to be going to my local childrens hospital infusion center but my doctors don't have permessions there or w/ever they want to call it so I had to be refered to this cancer center that is for adults. So it was scary and there was no kids just me. ahh so me and my mom found out that their is a pediatric cancer center just for kids that has an infusion center up the road from there so we are gona call on MOnday and find out if I can get in there. So yea i am hoping I will be able to! Anyways other then the atomosphere the infusion went great ... which is what really matters!

thanks girl

Hey guys. My first infusion is tomm , wish me luck! Any tips would be awesome for those who have experienced this. I am getting saline infusions

oh wow! That is really cool, I have never met anyone from there lol.... yea it is awesome! And yes i am pretty sure it is very diff how they do it thre. Wish u the best of luck!

yes! In fact mine got so bad I was admitted into the hospital for 5 days. Everytime I swallowed liquid or tried to eat food i felt like i was choking and sometimes i did. It was so bad that i refused to eat or drink. Oviously with us potsies we get easily dehydrated and of course i got so dehydrated and it put me in a bad flare. My HR ended up being 120 just resting at the hospital and my blood work came back with very low hyrdration levels. So i got admitted. They never figured out what was wrong. It *****! Eventually it went away and from time to time the feeling comes back (but not as nearly as bad as it was the first time i experienced it) hopefully that will never happen as bad as it did ! Wish you luck!

dani- yea my nxt appt with my doc is feb2nd and he is already talking about putting in a port. So yea im pretty sure will set up the surgery for the port then and talk more about it. ramkentesh- oh ok yea it's awesome and im happy for u ! do u go to a infusion center? and if u do , do u have to go through patient registartion and all that jazz?

Hey Guys. So in a recent post i told you how I got approved for IV fluids. I am going for my frist infusion this friday. My doctor is having me start out at 2 bags once a week. I am going to a infusion center that is located inside the hospital. Has anyone else gone to a infusion center for their infusions, and if so what was it like the first time you went? Also to you have to go through registration everytime you go (like get a armband and all that) or do you just go up to the infusion center on your assigned floor? The infusion center is located in the hospital on a certain floor. So I am trying to figure out if you have to go thorugh pateint registration and get a armaband and all that jazz. lol.... So yea any replys would be greatly appreciated Thanks!

Hey guys. So my new doctor I have had for a couple months now at Duke Childrens has approved me for regular treatment with IV Fluids ... I am really excited becuz IV saline Fluids work really well with me. This doctor is amazing and truly cares for what his patient need and want. He is willing to try anything and everything for us. If the IV fluids are working for me and my next appt on Feb 2nd we are going to discuss surgery for putting in a Port. I don't mind that , I know some ppl who have ports and say the are not that bad. I am just really looking foward to getting the infusions and not having side effects with great relief from symptoms... Lets just say this is my "magic potion" to helping me dramtically reduce my pots symptoms.

oh ok. well I have local childrens hospital that said they will accept me as a patient to do infusions. We are waiting to hear back from my doc

Yea I am looking to just get plain saline unless my doc thinks that he wants to add others to it like (potassium) ... He has said he will let me do it if I am not improving but is hesitant. I am planning on asking this week and if I don't get a response ima ask at my next appt on the 2nd of Feb but i dnt wana wait tht long .... When we were discussing it though he had mentioned a port. He works with many POTS patients around my age and he has patients who do the IV saline therapy and I think some have ports as well.

Hey guys. So I am really wanting to start being able to do IV fluids on a regular basis. I body is really weak and feels like it is just shutting down. My doc is always upping the dossages on my meds but my body just keeps getting used to it and rejects them meds now and not to mention I have horrible side effects from them. I asked him about doing IV fluids at my last appt and he said that he was willing to let me do them (he has other patients that do IV fluids) but he was hesitant .... he told me he was going to up my meds to 5mg and then to 10mg if tht was not working. I am currently at 5mg but i really dnt wnt him to up it to 10mg i just want him to let me do the IV fluids. I have proof tht they work for me and they greatly improve the quaility of my life. I know some ppl on here do the IV fluids. Could somoene please tell me how they got them , how they persauded their doctor? I am really desperate.... I really want to do them on a regular basis. My mom is hesitant to it too , although she is going to ask the doctor tomm if I can have a IV fluid session to get me up and running again that is not enough for me. I am really sick of doing trails of the fluids , I just want to start them as a treatment on a regular basis. Any tips on how to get the doctor to let me do it? Any info or tips will be greatly appreciated. Sorry about the lengethiness of this

Thanks Yea I will follow up with my primary if i am not getting better def

oh ok thanks guys.. I am feeling a bit better I just think I am either relpasing or flaring again, idk really the diff. but anyways i just havent been feeling all that good

Hey guys. So I just got back from the ER. I have been having really bad back pain for the past 2 days diff then the back pain i usually have. But today it was way worse and accompanied by nausea. When I went to the bathroom around afternoonish tday I had passed wat my mom and I think was a kindey stone and some blood in my urine. I called my doc and they told me to go to the ER. So oviously I went and they didn't do a ultrasound or anything. (Not to mention kidney stones run in our family) .... They told me that I did have prescence of blood cells in my urine but not enough to make them worried... So they sent me home with vikoden for pain...... So I am a bit frustrated and confused? I dnt understand how they could just send me home w/out any testing. grrr.... Has anyone else had kidney stones? Thanks.

ok thanks. Yes PEDS is kinda contraverseral these days some so pediatric ages are to 18 and some say to 21. So just checking. Thanks.

What ages do they do? Like wat are considered teen ages? I am 18