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About ANCY

  • Rank
    Advanced Member
  • Birthday 12/04/1991

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  • Gender
  • Location
    Peyton Co
  • Interests
    The Bible, Church, playing musical instruments,Cooking, Research

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  1. Hi, been a while since I've posted. Curious if anyone else has had a sudden change from hypotension to hypertension? Beginning of This year I started Northera which really helped stabilize my blood pressure and got off the Florinef. Also used Midodrine and clonidine as needed but rarely needed the clonidine. Over this past summer was able to see a lot of improvement and was down from avg 10 pass outs a day to 10-15 a week roughly. Due to my central line bursting ended up with sepsis beginning of November. Spent 12 days in ICU fighting to get blood pressures up out of 50s/20s. The e
  2. I actually have a groshong now. Have had 3 ports previously that all got infected, as well as other central lines... Went with the groshong on recommendation from infectious disease because we can use ethanol in it to try and prevent infections. I've had sepsis 10 times now so would be ideal not to have/need a central line but the difference iv fluids make in my case is indisputable, even for Infectious Disease. I also deal with a lot of gastric issues and so have a feeding tube but still unable to get enough fluids in that way. So there's really two reasons why iv fluids are so helpful for m
  3. I have lows and highs but have seen a drastic change this year with a switch from florinef to Northera, I'm a bit more stable. I take clonide for a sustained bp of 155/100 per cardiologist. (I bounce around a lot and frequently the hoghs come down on their own after a while.) I also take Midodrine if im running 110/60 or under with already taken my Northera. My bp drops really low, especially with standing, I pass out somewhere around 65/40 and have had readings as low as 42/20s while unconscious. My mid avg though is around 130/80 so can get symptoms with a drop under 100 systolic. In the be
  4. Yes! Just about every time I'm outside, which isn't very much. I also literally feel like I'm burning on any exposed skin. Ive always had photosensetivity even as a child. Do you wear a hat? It helps me a little bit, still get the headache but not so immediate. Do you squint? I know I do a lot, even with shades on, which makes the headache worse... This summer I've been working on overcoming obstacles that keep me indoors so very interested to see what others say!
  5. Well, plans are on hold again temporarily. Ended up on the hospital... Hope to get back to standing amd "riding" soon. I will have to look into the local places and see if they have a saddle I could use.
  6. Congratulations!! This week's achievement include standing for 30 seconds without passing out and sitting on a saddle, not on a horse, with a final goal to ride by end of summer. Slowly but surely!
  7. Dysmotility of the esophagus can cause trouble with swallowing. That is tested by esophageal manometry usually done in conjunction with an endoscopy. I've also had trouble after a surgery when according to ENT they temporarily paralyzed my vocal chords when they intubated me. I lost my voice as well that time though.
  8. I was on Florinef .2-.5 a day for many years, along with midodrine. Almost always needed some amount of potassium supplementation. End of last year was on .1 3 x a day with 20meq potassium supplementation. The dosing of my Florinef and potassium has always fluctuated depending on what my blood pressure and other things were doing. I have severe gastroperesis so even off florinef i am still on 15 mEq potassium, at one point I was on 40 mEq a day but that meant I had to be monitored more closely. The goal my Drs had with using florinef was to bring up my baseline blood pressure, then use the mi
  9. I'm on xeralto now. I was on Eliquis but insurance was giving me a lot of grief so switched to xeralto. At one point I was doing lovonox injections, glad i don't have to do that any more! Lovonox can be reversed and is shorter acting which is why they tried me on it. My stomach was inflamed and bleeding on the last EGD. It's been almost a year since then so if I drop really low again they want to do another EGD. They suspect that with the last bleed I had a spontaneous ulceration from the sepsis in combination with some possible hemolytic anemia from the iv rosefen. Last year I also h
  10. Got to go sit on a saddle! Not on a horse, but working toward that goal by end of summer. We named the "riding stump" woody and thoroughly confused the horse. Lol! Only passed out once so we call it a success.
  11. I pass out almost every day and some days more than 8. I do stay alone but stay in bed most of the time and use my wheelchair with a seatbelt when up. My biggest asset is i keep my service dog with me because she can worn me if I'm not safe and going to pass out. It took us months to find what works for me to be safe alone and a couple years before my service dog were pretty hard. You can do it though, just have to think outside the box and definitely good to start with small increments of time. You will get there eventually!
  12. The groshong is definitely more low profile and nothing sharp/hard so I can lay on my side without discomfort. (I'm a side sleeper) with ports if i layed on my side where the needle penetrates my skin would hurt. Same with clothing sometimes. It was nice with the port to have the ability to deaccess and not have it constantly hanging out. I was accessed all the time though so didn't have much opportunity to enjoy that. Groshongs are designed to not need any dressing after 9 months, my Drs and I will probably never feel safe doing that though. The dacron cuff on the groshong is supposed to keep
  13. Well late comer here but wanted to see if i could answer any other questions you might have. I've had piccs several times, 3 ports, 2 groshong and several other temp central lines. Currenty have a groshong because my Infectious Disease dr has me use an ethanol lock to decrease infection risk. I was told that it can only be used in a groshong. I have had sepsis 10 times now and central lines are always a touchy subject but the difference iv fluids make for me is undeniable. It cut my syncope episodes by 2/3 and I'm able to do so much more with them. Over the last year I've been running fluids 2
  14. They are doing well, almost a month old now. Have to say goodbye soon when they leave for new homes. 😢 Can't be too much of a crazy goat lady! VID-20190411-WA0008.mp4 VID-20190411-WA0013.mp4 VID-20190402-WA0004.mp4
  15. A few highlights... Hematology, after i passed out in front of him, well, you REALLY have POTS. As if people can't have POTS if they don't pass out? A New Surgeon's reaction after I pass out is to tell me he ran out in the hall with his hands in the air screaming for help! Of course that's not what he did, he was just lightening the mood. My sister was with me so there was no cause for alarm. Not really a statement, but, too funny. So went on a trip from Colorado to Ohio to visit family and ended up going to the ER because I needed blood. I have a habit of sitting on my legs an
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