AJVDK

Welcome Liz!

Rachel, Thank you for keeping my in you thoughts. I the done side of the PICC is that I can not get it wet. But I would not be up in moinvg at all with out the fluids so I will take it any way I can get it. I will enjoy getting to see my son have fun!

Well I am off to an LLMD. I am worried that this end in a dead end, but I also worry this is it. Does that make any since at all? I just don't want to get my hope that theres going to be a treatment that is finally going to help. ........ ok I was just worried. So we are leaving this afternoon. The LLMD is 300 miles away, so I hope I do ok on the drive down, but we did get a hotel for a few days as we did not know how i would do, plus it like a vaction for our son as the hotel has a pool! Funny how that all kids need, the are so carefree to be that way again will be get. Well I will be back hopfully on Saturday with hopfully a treatment plan! Have a great rest of the week!

Wow! Sounds like they are putting you though everything! I will say Mayo was good to me. Hope the get to the bottom of things for you! Hope oz starts coming with a yellow brick road to the land of the right treatments......... ( sorry my mind is not working they best) Keep us posted! Amy

Hello Heather, Welcome! I wanted to let you know understand where you are. I could relate to about everything you said. I also use oxygen as needed, and due IV treatment at home every other day. IV treatment is the best treatment I have found so far. The done side of it is that it doesn?t last very long, and the risk of infection. When I first found out I had POTS, and didn?t know anything about it, I felt so alone, as now one could relate. But the good news is everyone here at Dinet can relate. This is a great place to find support. Also there is a meet other program here too, you might find it helpful to be able to talk on the phone, or even meet other close to you. http://dinet.org/join.php. One other thing that helped me a lot when I first got sick was to read about others personal stories, you can find those here: http://dinet.org/personal_stories.htm Again Welcome!

Sound like the migraines I have. Do you have a nero doctor? Have you had a work up yet? I would to make sure it is nothing more then a migraine. Once they know it is one there are many drugs the can use from once to help with the pain to meds that prevent them coming one. Also I have had Duodenal Ulcers for years. SO I take a med for them, and then take the med for the migraine. To me even if my stomach gets up set I will take it over the migraine. I hope you get some relief soon!

I agree with Nina. I have a pacemaker and my heart rate never goes below 70 bmp. When the turn my pacer off when testing in the office it goes down right away in the 30's. I would be sick, if my pacer was not pace where it is. It does casue problems with my pots, but i can deal with it. I know that with all the problems I have had, I keep pushing for a docotr that will listen. If you think there is more going on, you know your body better then anyone else keep pushing for answers. If you don't think you are getting what you need keep going. Good luck, I hope they get to the bottom of whats going on soon for you!

I tried Lyrica for migraines, and it man my pots worse. I am not sure why. No my grandma is on it and it works great. I think is person to person of this drug. For people that it works for thought it seems to really help. I hope it works for you. ( I just got but on Depakot for migraines two weeks ago, I am hoping this will help me, they said it could take 6 weeks before I know. I hope it works!) I wish you the best, and soon some pain free days ahead!

Hello, I take procrit to help increase my blood volume, and to keep my hematocrit up. I have been on it for about six months now. Not sure if this helps! Have a great day!

I am glad you got them! Also for all of you still wanting to order, don't forget to place your orders for T-shirts soon suppiles are limted! Amy

Happy B-day!

Dr. Fouad at the Ceveland Clinic did my test as well.

Donna, First off I am sorry to hear you where in the hospital. I my self just got out last week after being in for 7 days its not fun. One thing I can say is never give up! There got to be something, somewhere that can help. I know the feeling things are getting really bad for be as well. I just got a new PICC for fluids at home, but as well my b/p it too low. They keep changing meds as well. Mayo might me a great idea, or Cleveland Clinic, Dr. Grubb, EP doctor, and one that could help put a light on what?s going on. I can say one thing there is a great support here at Dinet.org. We are all here for you! I wish you the best and will keep you in my thoughts and prayers!

Hello All, Well I said I would post when I was feeling a little better. Why is it, all you want to do is come home, and yet when you get home you can not sleep. Anyway, I went to my doctor appointment today and found out the reason it was so hard to treat the sepsis, was because I ended up having two different bugs in my blood. I had one that was a gram negative, and one that was gram positive. Also my blood work is still showing I am low in potassium, and that my electrolytes are still off. So hopefully everything will get back to normal soon. They started me on Levaquin to keep fighting the sepsis, to make sure it doesn?t come back. Also now that I have a new PICC I can get back to the fluids at home. I am afraid of getting sepsis, but I am more afraid of not having a life. While I was in the hospital I got a spinal tap, and lots of blood work, also the good news is I finally have a Neurologist to follow my case. So he also started me on meds and will be following up with me and keeping an eye on things. I am hoping that we can get the headaches under control along with all the vision changes! Also While I was in the hospital an opening finally came avabilty to see a LLMD. So I am going to an appointment finally with an LLMD on 2/8/07! I am hoping they will be able to shine a light on things, but who knows maybe after all the abx I had in the hospital maybe be killed it off! (Wouldn?t that be nice). So that?s a little up date to what?s been going on here. Hope all is well with you. Thanks for all the prayers and support over the last week! I going back off to bed, O can not believe how tired this makes me! Talk to you all soon! Amy

Melissa, You will be in my thoughts and prayers. Sorry I am just getting to this, I just got out of the hospital on wedesday. You are a fightrt, and I look up to you, I hope you find a doctor, and hosptial to take you. I am wishing you the best! Amy

Hello All, I wanted to thank everyone for there thoughts and prayers. As most of you know I ended up in the hospital with sepsis. I had to spent 7 days in the hospital . I just got home and am very tired and worn out but I wanted to post that I am finally home! The doctors said it could take 3-4 more week to get back to where I was when I got sick. It's kind of depressing as that wasn't a great place. ( But it could always be worse, and I will get keep going and betting this.) I finally got a new PICC, so I will be able to due fiulds again at home. This was a hard one as many of the doctors didn't want one placed again as I got sepsis. SO they did a test the held fluids, other the the antibiotics, and I ended up on the bathroom floor by noon, so they started me back on fluids. ( I guess they learned a little about POTS!) Well I am off the hook up to fluids, and take my antibiotic! Again thank you all for your support! Amy

Rita, Sorry to hear about your appointment. If you beleive this is your best option getting the IV, then keep pushing, it took my a year to get the doctor to listen, but now after they are see the difference they are keeping the orders. Listen to you body, and you know whats best, if a doctor will not listen go to another. It's sad that we have to do the work, and fight for treatment, but it seems that the only way to get things done. I wish you the best and keep us posted! Amy

So your club is it going to be BYOT (Bring your own tubing)..... No really if nothing else has worked I would really look into a picc and fliuds at home. To me doing at home know on has to know, plus no one seem to know about pots, so you don't have to explain it every time. For me I have the same nruse every week, and she is really nice, the rest if the time I am no my own, plus I get to pick the time I do the fluids, I like to do them at night, ad then I am already laying in bed, wacth tv, so I am not feeling like I am missing too much. ( Just my thought) Anyways wish you all the best! Talk to you later...... may be at the club!

Congrats! I am still waiting for my hearing now! ( its going to take 18-24 months for a court date!) I am happy for you!

Be carfill with thinking about a pacemaker. I was told I had SVT, and that the only way to take care of the problem, due to meds not working was an abltion. So now two abltions later, my heart rate was too low, and now had to have a pacer placed. Two months after having the place place I was still having problems in fact felt worse after the pacer was placed so I went to Mayo for a 2nd option, that when I found out I had POTS, and they said one of the worse thigs you can do it you have POTS is to have a pacer. I beleive it as I have never felt good since it was placed. ( This is just my option, but please becarefull when thing about on, get a second option before jumping in, if I could go back I would had never had the first abliton.)

My cardio wrote the orders for the Saline (9% Sodium Chloride), heparin, and the PICC line. Now my family doctor does the orders. I get fliuds every other day, and a health care nurse comes once a week to clean the dressing on the PICC, makes sure I am doing ok and bring supples. It took almost a year for me to finally get my doctors to right the orders. We tryied everything before going to fluids, from drinking not stop, to drug tht make you retain water, compression stockings, ans so on. Finally as we last try I was started on the IV Fliuds. It does help alot, but I would only do if nothing else has worked. There is a high risk of infection, ( more if you have a pacer, like I do), plus all the lost time being hooked to an IV pole, and having to travel with extra stuff, and the cost of the PICC line, and supplies, nursing care. I know it has helpped me alot, but I want you to know the down side too. I wish you the best!

I am glad to hear your update. I hope thing keep getting better! Plus it gives me hope!

Michelle, Thanks for letting us know! Melissa, You are in my thoughts and prayers, and hope you are able to come home soon, and back to the fish tank! (I got to give you a tank so you have room for the dinet gang.) Amy

I am wautung right now for my hearing. I wish you the best.

Hello All, I wanted to drop a line and thank you all for all the support, prayers, thoughts, and emails I received while Blake was getting ready, and then going thought surgery. Blake is doing great now. The doctors said this will the last surgery!!! Yeah! We are so happy. Blake will always sound wheeze, and may not we able to run fast, or play sports, but I am going to finally have a healthy son, who is going to have long life now! Two years ago I didn?t now what to think when the found the mass, but things are great now. We are truly blessed! As for are Christmas, we went home, and spent the holidays with my family. It was nice to see everyone. (I felt kind of dumb going home with an IV pole, pump, a drug box full of supplies, but o?well I guess) Although one of the family members had the flu, so needed less to say I got sick, so I was down 4 days with the flu. I was kind of funny though, my husband kept saying, I not going to get it, I never get sick, guess what he got sick. (Why is it too that men are so whiney when they get sick?.) I hope you all had a Great Christmas and wishing you all a Happy New Year! Also Thanks again for all the support thought everything going on with my son! Amy