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Everything posted by surfgirl14

  1. I have had burning pain before in my stomach, never found out what it was from but it just subsides on it's own. Hope it gets better. I take zofran for nausea and have nausea patches tool. Maybe try some pepto for your stomach it might coat your stomach so it will sooth it.
  2. Thanks everyone And I will let you guys know how it goes pupplove
  3. yea funny you say that because I am extra sensitive to medicines... you just reminded me to tell my doc tht .. thanks lol
  4. Hey Guys. So I have a couple questions but also wanted to give you guys an update on things. So I am out of the hospital I got out the 28th of May but haven't had a chance to get on in a while... hope everyone is well So I was in the hospital for about 2week after the first week i got transferred to duke childrens to get better care and to be under the supervision of my cardiologist. Anyways things are slowely getting better but it's gona take a little while before I can get my stomach issues taken care of. I am waiting to get into nationwide childrens hospital in ohio but oviously as you gu
  5. Hey guys. So I don't really know how to explain this so i'll try to explain it to the best of my ability. I keep on having this really weird feeling in my head kinda like a brain fog, out of body, not feeling fully there. ugh its really hard to explain to people so I am not sure how to describe it. During the epidosdes I also get shaky and feel just so out of it , and that it's hard to have a conversation. Also I feel tired during the episodes. One thought I had was could it be problems with blood sugar? ex. diabeties, hypoglycemia etc? I have thought about purchasing a blood sugar monitor a
  6. It was the best feeling! I loved being able to meet kayleigh and you.
  7. Thak you all. I appreciate the all replies, responses, etc. TPN really hasn't been bad at all I am getting blood sugar levels checked every 6 hrs and blood work I got done at 4am this morning. I haven't heard anything back yet about the bloood workd or sugar leveles hoping they were just good. They have gotten a diatecian to consult after she overheard that I was vomitting she came into my room and started to find out what was going on. So now her and my doctor have been working on the right amount of TPN to give me and diet stuff. My heart rate did change though last night like I have never s
  8. Hey. I totally understand how you feel about this. This is too one of the symptoms and issues that scare me the most (apart from GI issues lol ). But anyways yes when I get like this I just try to drink lots and lots of gatorade/water and increase my salt and rest , rest, rest! Just remember POTS is NOT life-threatning although it is life-altering and scary at times. Hearing that it wasn't life-threatning was the hardest for me to hear becuz I didn't belive it and and times I still don't. But my cardiologist tries to reassure me that I am not going to die from this and to just try to stay calm
  9. Mestinon did very weird things to me but nothing like you describe. It was mainly like extreme dizziness, and light headedness etc. I am sorry to hear that you are having these problems :/ Hope they get better, hang in there! ... If it doesn't get better its always best and makes you feel more at ease if you consult with your doctor. Hugs
  10. No they really havent looked into much. I guess cuz the know I have pots and was diagnosed with gatroperisis so they feel like testing isn't necessary? idk thats my guess. They can't consult with my GI doc becuz for some reason becuz the hospital i am at and the one my GI doc practices at they don't communicate or can't for that matter. I don't understand taht at all but its just frustrating. It may be becuz I have had a upper endoscopy before like less then a year ago and it did not show anything. Soo yea I got sick last night again and the nurse came runnin in my room this morning concerned
  11. Thanks everyone. I will def take everyones suggestions into consideration
  12. Thank you. I am really frustrated because now my mom is giving up on me and I Just dont understand why they are not consulting with my GI doctor about these issues. I am frustrated to the max! My heart issues have decreased much but my GI symptoms are still there. Terribly nauteous and then get my nausea meds and try to eat i just either A. throw it up or B. suffer for hours untill the next nausea dose. I just dont understand why they are not doing anything about it and why the havent contacted my stomach doctor. Like I want to leave the hospital and im itching to get outa here but I dont want
  13. goodnuff- thanks that makes me feel so much better
  14. Hey Guys. so im was admitted last night for cardiac, dehydration, and GI issues. So wats not going away is the GI issues. I forced myself to eat a turkey sandwhich last night and threw it up. I am so nauteous its really hard to eat. I have chest port and all so they could give me artificial nutrition through that. But that scares me and stuff. I really feel as though everyryone aroud me including doctors are just thinking im faking it. Which you all know is not true and pots is so hard to show when mostly its invisible expecially the GI issues. I really dont wana force myself to eat it make me
  15. Hey Everyone. I got everything figured out my doctor direct admitted me and so here I am now in the hospital. Hopefully these fluids will help and i am also on a cardiac monitor becuz my vitals were unstable which should clear up soon. Now the problem i need to overcome is being able to eat and drink.. due to extreme nausea it is hard to do tht!
  16. They called me in some IV fluids to the infusion center I got too so that should help!
  17. Hey guys. So I am any the middle of a bad flare up.. and a very uncomfortable one too. It came along with my period which always seem to flare up symptoms but not as bad as this time. It started last night and I felt like my entire body was completley drained of all its energy and just lifting my arm hurt or my mom rubbing my arms hurt me. Every part of my body hurt and my body felt so heavy. It was a feeling that is just really hard to describe. On top of all of that I was having bad diarrhea and extreme nausea. I can't drink anything w/out running to the bathroom to throw up (which I havent
  18. Hey. Umm well I have had my PORT in since March 2nd of this year and was fine up until a couple weeks ago. I just started having some pain. But it flushes fine, and I get great blood return. No feveres etc. I am pretty sure if it was a infection it would of showed itself by now. Ive had a pain a little over a month now. I am very tiny so my port is really visible under my skin ... they say the more skinnier you are the more pain youll have. sorry to hear about you guys experience with ports and what your freinds endured. I am not really scared by wat u said lol its fine, my doctors have reassu
  19. Hey Guys. Yes I found a lawyer that said exactly what you guys said. He doesnt charge unless I win but only then does he take 20% I tried to tell my mom but she doesn't even want to pay the 20% its hard when your still a teen being only 18 (well a young adult lol) so I still have to rely on my mom and such.
  20. yay!!! Glad to hear that I was too denied but mom can't afford a lawyer to help apeal that case so we are not gona appeal it sadly But I am very happy for you I am sure its gona help you help a lot! I know the financial burder it can put on families being the kid in the family and watching my mom struggle to pay bills. Soo Very Very Happy for you
  21. aww well im sorry to hear that you have hard times acessing it some times :/ Hope that gets better I am actually seeing a childlife specialist i think tday or sometime next week for port education. I am going to ask her about the random pains and see if she has every had anyone experience that... and wat to do when I do experience tht. Cuz my pain like get so bad tht i want pain meds. Hope all is well. Hugs.
  22. ChristyD.- did yall see her at the childrens hospital of winsconsin, i am pretty sure tht is where she practices now. What was your appt like? Did it take a long time? Was there a lot of test ordered? Thanks.
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