tag:blogger.com,1999:blog-7647112008052174649.post1385274075714670720..comments2024-02-24T20:45:18.066-05:00Comments on POTSgrrl: Saline Therapy for POTSies?Unknownnoreply@blogger.comBlogger3125tag:blogger.com,1999:blog-7647112008052174649.post-55215368107078281942011-08-30T18:02:43.783-04:002011-08-30T18:02:43.783-04:00Another update from POTS Grrl...
I have tinkered w...Another update from POTS Grrl...<br />I have tinkered with my saline dosing and timing for months. I have finally found the best regime for me. I have a little battery operated pump the size of an old Nintendo Gameboy. I hook up to the IV tubing everynight before bed, and set it to run at 100mL per hour, so that a 1 liter bag atkes 10 hours to finish. That gives me plenty of time to sleep without getting awakened by beeping IV alarms when the infusion is done. When I wake up and the infusion is complete, I flush with 10 mL saline and 5mL pediatric strength heparin. This leaves me unconnected to IV tubes during the day, so I can try to live as normal as possible. Since I leave the needle in and only change it once a week, I just tuck the few inches of tubing attached to my needle into my bra or tank top. Most people do not notice it. If I wear a skimpy shirt, like when it's really hot out, I usually bring a sheer or gauzy fabric shawl with me, so I can cover the port if I want to. I now have like 20 shawls in every color.<br /><br />Yay saline!!!!!POTSgrrlhttps://www.blogger.com/profile/00965527248154225467noreply@blogger.comtag:blogger.com,1999:blog-7647112008052174649.post-78313525324225530702011-04-17T17:55:49.214-04:002011-04-17T17:55:49.214-04:00An update from POTS Grrl on the chest port/saline ...An update from POTS Grrl on the chest port/saline therapy: <br />So I've had the chest port for a few weeks now. The pain from the surgery to install it is totally gone. I usually forget that the port is even there. I only remember it when I have to shower, because I have to cover it since I have a needle in it 24/7. I also notice it when I sleep on my right side, but it isn't very painful, just uncomfortable.<br /><br />The scar on my neck is a little weird, but you can always have that fixed by a good plastic surgeon if it really bothers you. Mine doesn't bother me enough to have plastic surgery, and I figure they may have to cut the same spot again when they eventually take the chest port out of my chest, so hopefully that can make it prettier when they sew me up a second time.<br /><br />I am getting 1 liter of saline every night, at a rate of 75 ml/hr for just over 13 hours. I flush the line with pediatric heparin and clamp it off in the morning so I don't have to carry an annoying IV bag around with me all day.<br /><br />And I am feeling so much better than I was at this time last year, before we knew I had POTS, and before I was on the saline therapy. I am still not back to "normal" but my quality of life is much improved since I've finally figured out the right dosing on the saline. I was getting 50ml and hour all day long (1.8 liters per day) at first, which I think was too much. By the end of the day I would get all flushed and seemed to be having blood pressure spikes. Getting just 1 liter per day seems to be the best dose we found so far.<br /><br />I have tried to wean myself off the saline, but unfortunately, I can't drink enough fluids to properly hydrate myself. I start choking even after one little sip of water. Throughout the day, I try my best to eat "wet" foods like yogurt, fruits and veggies. For some reason, it is easier for me to swallow food that drinks, although I'm choking on food pretty often too, which is kind of scary. I think it's because of the reflux or maybe some nerve damage in my swallowing mechanism. I really don't know, but I wish it would go away so I could drink and eat normally.<br /><br />So if you have POTS, I would definitely talk to your doctor about trying out some saline therapy. It has changed my life for the better. I'm hoping it is the thing that helps me push myself to the next level, to hopefully get strong enough and build up enough endurance that I can start to function normally again.POTSgrrlhttps://www.blogger.com/profile/00965527248154225467noreply@blogger.comtag:blogger.com,1999:blog-7647112008052174649.post-78946380839300096442011-04-15T23:22:34.812-04:002011-04-15T23:22:34.812-04:00Hello-- I am 19 years old and I also suffer from P...Hello-- I am 19 years old and I also suffer from POTS. I have been hospitilzed many times for reasons similar to yours. I remember last year, I was in the hospital for GI issues,I recieved 2 liters of saline and I looked at my mother and said "Mom I feel alive. I actually feel like I have life in me for the first time in years" I am currently doing a lot of research on saline therapy and POTS to present to my doctor.<br />If you could please please please contact me I would greatly appreciate it!!<br />My email address is krylee@my.centenary.eduAnonymousnoreply@blogger.com