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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. Low Blood Pressure

    Thanks Kate for the prayers! I'm glad you are able to do IV fluids and find them helpful. It's nice when you can do them at home, at least it doesn't interrupt your day quite as much lol! We live 55 minutes away from the hospital where we do my infusions so getting fluids is a 4 hour ordeal most days. Because of my history of infection another PICC or Port is not a good option for me. I do love living in the country though, especially the peace and beauty we are surrounded with at our house, makes it worth it, most of the time anyway lol! Why is your cardio wanting a feeding tube? Is it for fluid's sake? I have a love hate relationship with mine, really couldn't do without it right now though. The balloon that holds the tube in place is always migrating to the surface and I only get about 6 weeks until it's trying to push through the stoma, and then I have to go in to IR and get it replaced. They did try and pull it before when I had a short period of doing better but a year later they had to place another one. My current GI does not want it pulled until I'm stable for a year without needing it at all. I'm not sure on the florinef... I have been on it for years and don't think I'd do well without it. I do have trouble catching things going around, I'm probably not exposed to as much as you though. My family, especially my mom, guard over me to protect from exposure when I'm at church and my family is super careful not to pass germs on to me when they are sick. Doctor's offices and hospitals are probably where I get exposed the most as my outings are limited to appointments and church. I still do get sick frequently unfortunately, but I also have an IgA deficiency and an undetermined autoimmune something going on. So I am not sure that the florinef is really the culprit of my getting sick. It is, after all, a pretty minute dose comparatively. I hope you start feeling a little better soon and find some answers too. Good luck with the stockings! I find they help but I don't put them on myself, I have to have my sister help me because of my back infection.
  2. Low Blood Pressure

    Mine goes that low and lower frequently. Although other times I have issues with hypertension, my body is wacky lol! On days I am sitting at 80s/40s laying down then I tend to bounce around more drastically with my blood pressure when I'm sitting or standing, which causes me to loose consciousness. When I'm unconscious a typical reading is around 50/30. My cardiologist does not like to see me that sitting that low, or unconscious with it at 50s/30s but... I still have trouble despite using Florinef, midodrine at 20mg 5 x a day, IV fluids, pacemaker and of course salt and as much fluid as I can through my feeding tube. So there's not a whole lot more we can do at this point... He has told me that as long as I'm not out for a long period of time it's not super risky in terms of a stroke but of course it's not good either. Recently though times have been longer, some greater than 10 minutes unconscious. We have only recently started the IV fluids as a treatment for my blood pressure and it does look promising however still does not fix 100% of the problem. Obviously each person is Diffrent and then there are changes throughout a life that make it difficult to always come to a good treatment plan. I don't really have an answer, obviously still pursuing options myself, just wanted you to know you're not alone! Hang in there and hope you find answers soon.
  3. Getting a Rollator/walker

    I have two walkers, one the typical gray front wheeled walker and the other a rollator. Insurance purchased the Grey one for me and I got the other off of Craigslist. The Grey one was good for me when I needed something with in home PT to practice standing g to sitting and sitting to standing exercises as well as standing in place. I did not like when I walked with it on uneven ground it would catch, because of the small wheels, and it wouod jerk and I'd loose my balance. My rollator worked much better for me with walking once I adjusted to its ease of movment and learning to use the brakes appropriately. It also opened more opurtunities for me to walk s I had a seat to sit down if I felt presyncope coming on. Some varieties also have baskets under the seat which could hold a back pack or purse, or other small to medium item. Unfortunately I have yet to progress out of my wheelchair to independently walking with the walker... still hopeful in the future though.
  4. IV Saline and POTS

    My cardiologist just started using iv saline as a treatment for POTS. I get them through the hospital he's affiliated with right now. Hoping later on to be able to do them closer or at home. So far I have responded well, the day of and day after are when I see the most benefit. It seems to help more with my blood pressure than heart rate. I do have a pacemaker which corrects my bradycardia and does what it can to compensate for BP drops as well as tachycardia. These 2 treatments together have made a big difference in my quality of life.
  5. No experience with hip surgery, just with dysautonomia, surgery, rehab, and Drs who don't take everything into consideration. I too have difficulty with blood pressure drops, and sometimes over 100 points like you. Also takes me a while to find a Dr willing to risk in surgery. I Had a hernia repair surgery in January, which went well overall, but when I got up to the floor I learned that, to my dismay, my dr would not be rounding on me, just the team. They would not give me the time of day nor consider that I had underlying problems that were stirred up by anesthesia. Culminated in them forcing PT, my passing out, and almost reopening the surgical wound in the process, what I was most afraid of. (I have problems with dehiscence and we had planned bed rest for 5 days post op to prevent it. Obviously he didn't discuss that with his team...) I did end up with more pain and displaced the drainage tube. While I agree PT is a good thing, it should have been done differently and EVERYTHING should have been taken into consideration. I also developed sepsis 3 days out from surgery and they still were pushing PT and rehab or a nursing home that provided therapy, when most of all my body needed rest. I still can't believe they wanted to send me to a nursing home, I'm only 25! So all that to say, make sure you know who will be involved in post op care and that they don't treat you just as any other patient. Something I've found helpful is to have an expert's pertinent advice written in my records and also in my possession. So if I run into trouble I can ask the individual to read the note and take it into consideration before deciding on a treatment plan. By doing this I don't sound like the fussy patient that doesn't want to cooperate. Expert opinion can mean a lot to some physicians and caregivers. If I'm feeling really unwell I'll try and have one of my family mwmbers stay with me so they can advocate for my needs. Good luck with your surgery, I pray it, and recovery, go well!
  6. Hi, I've been on fludrocortisone for 4 years now. Currently taking 0.1 mg twice a day, for a period of about 2 years I was on 0.15 three times a day. It is a steroid which takes a little time to reach a level in the blood that is therapeutic. For me it took about 14 days, sounds like maybe it was a week for you. As it is a steroid it can also affect mood and emotions. When I first started it I was a real basket case and rather distraught at times, thankfully the intensity of this effect diminished over time. I still have some difficulty with it intensifying my emotions, especially around that time of the month. For me I would rather deal with the emotional outbursts and anxiety than have my blood pressure lower. I already pass out, I don't want to pass out more which is what would happen if I stopped the medication. Without it my over all blood pressure drops and even midodrine will not bring it up. (My midodrine is 10-20 mg 5 x a day) That said, several months ago I started having episodes of high blood pressures, greater than 150/110. My cardiologist did not want to stop the Florinef because he felt we would loose what little control we had with my blood pressure. Therefore I am also prescribed clonidine to lower my bp when I'm over 155 systolic. (0.1 mg 3 x a day as needed) He felt this was a safer route as clonidine, like midodrine, is fast acting. So if it brought me down too much than it would only be for a few hours. Florinef works by causing the body to retain extra salt and wastes potassium. The extra salt in turn means your body holds on to more water, higher blood volume will usually give you a higher blood pressure. Because it's purpose is water retention, it can cause edema, especially in the lower extremities. It also makes it hard, for me at least, to loose weight. Sorry this is so long, I hope you find something helpful!
  7. How to stay positive

    There is a book called "God Needs Me" written by a lady named Lynn Foxx Adams. She suffers from dysautonomia and was diagnosed when hardly anything was known about it or how to treat it. Obviously not everyone's cup of tea, but I think could still be beneficial as she talks about dealings with family, raising her children, trying to to "act normal", going to court and lots of other things. The book was helpful on a personal level but more so for my family, and our relationship. It was very healing for my mom and I, our relationship was a bit rocky in the begining. So I would recommend it to anyone, and have, even my non-christian friends. My faith in God is a big part of who I am and trusting God has brought me peace and Joy, that's how I stay positive. I have also found that serving others helps to shift my mindset and when I'm not focused solely on myself it's easier to remain cheerful. That is just what works for me, obviously everyone is different.
  8. Physiatrist

    I'm Soooo sorry! I can relate to almost all of what you said, I wish I had some great words of wisdom but haven't figured it all out myself. Something that did come to mind is, did you have a fever when they drew the blood cultures. I've had sepsis many times and twice they took quite a while to show up positive on blood cultures. Almost pointless to run without a fever, in my case anyway.... is there any other reason for you to have a fever? What about a flu or cold or something? Last time I had strep I had all the begining symptoms of sepsis, while we were contemplating hospital admission strep cultures came back positive. Praying you figure something out because I know you're miserable!
  9. What's for Lunch Today?

    Elecare Jr formula, via feeding tube, a few sips of water, and meds lol! Not to complain, just thought I'd share my every day "meal" lol! We joke about it a lot at our house, I love cooking but rarely eat anything I cook.
  10. Feeding Tube Question

    Sure! He is going to look into other tube option, he's not sure if the button would be the best choice for me. He said he'd speak with the IR DR to get his opinion of what kind could be used effectively. He did agree that something needs to change so I don't have to keep going in every 4-8 weeks to have it replaced. He burned off some of the granulation tissue and sinched down the bumper to essentially plug the hole. ( gives me a little compassion for our horses lol!) It has decreased the amount of drainage for now at least, we'll see how it looks tomorrow. That is one of the things he said you wouldn't be able to do with a button. Also discussed the frequent "tube explosions" that happen when the back pressure builds up so much that it forces the feed tube off. He thinks that my bowel may be kinked and not working well because of adhesions from all the abdominal surgeries that didn't heal right. If it continues he said there's a possibility a surgeon would have to go in and excise some of the bowel thats affected by the scar tissue. He is concerned about how little I'm getting in (around 750 calories and only about a litter of fluid) and then vomiting and diarrhea on top of that... He is glad that cardio is starting iv fluids, said he has seen success with it as a treatment with his other POTS patients.
  11. Feeding Tube Question

    Thanks plaxico6, I think mine is a bit different, they placed it surgically the first time and have only been using the balloon tube to avoid surgery. I see my GI Dr tomorrow and will ask about the kind that are done during an EGD. They did replace my tube yesterday, stoma is stretched from the balloon, bUT otherwise ok for now, they just placed a guide wire and exchanged the tubes over it.
  12. High and low blood pressure

    Thanks Angell oz for your support, I'm hoping my current ID will follow her plan, I guess time will tell. Hope you are having a wonderful morning.
  13. Hi! Wanted to ask if anyone has ideas for handling feeding tube displacement?(Mine is for nutrition and hydration because I don't get enough orally due to gastroperesis.) For the umpteenth time my feeding tube has shifted towards the surface and this time the balloon popped through the stoma. I Have it taped down for now but can't use it, obviously, until it's fixed. Hopefully my GI Dr will be able to get me in with IR quickly. Problem is that this is an almost monthly occurrence. So my question is Are there other options for jejunal feeding tubes? Other ways to troubleshoot? What ideas could I bring to my GI Dr? Im thinking maybe a button but that still has a balloon... Thank you so much for sharing any ideas or input!
  14. High and low blood pressure

    An update for those who are interested: I apologize in advance for the length of this post... Saw my cardiologist again about 2 weeks ago and he is happy that the clonidine is still working, not changing that. I have been using some doses of 20 mg of midodrine per neurologist which cardio said is an awful lot 5 times a day but ok for short period. Pacemaker is doing well, not seeing anything new so that's good. I've been passing out more so he wants to try iv hydration once a week to see if there's any improvement with that. Especially because with ongoing antibiotics, They're causing lots of vomiting and diarrhea. Neurologist PA I saw today was happy to hear they are going to try the iv fluids, but also wants to see me off some of the meds I'm on. Going through the list though she couldn't find any to discontinue at this point so just have to juggle. Finally got in for a second opinion with a new Infectious disease doctor about the osteomylitis. The Dr wants me to add another antibiotic so that ALL of the bacteria from the blood infections are covered, and keep on them until the end of September. She Also wants me to see a Neuro surgeon and find out if they have anything to offer for the pain. Which she thinks is partly structural and putting a "cement" in the area would help with the pain. End of September she wants an MRI and if it's the same then just keep on with the antibiotics till we reach 3 months or more, she's not sure yet. If it's worse she wants the neurosurgeons to do an open biopsy to see if they can identify the pathogen with a larger specimen of bone and tissue. While she didn't change anything, or disagree with what my previous ID Dr has done, it's nice to at least have a plan, unlike before. She also said that chronic osteomylitis is harder to treat than the acute form. If the next MRI is worse there is also a possibility they will try removing some of the bone tissue, which is extreme, but She does not think IV antibiotics will reach the area well, if its still progressing. I would just like to be done with the whole thing, it's had control of my life for long enough. Well that pretty much sums it up... If you've made it to the end, thank you for listening, means a lot to be heard. If anyone has ideas I'm open to them! Thanks so much!
  15. Don, I also have a diagnosis of autonomic Neuropathy it is not med induced however. After 5 years my neuro is still unsure weather mine is progressive. This year it looks like it may be but I have to many other things going on to say for sure. I'm so sorry you are dealing with all of this! Hang in there, it can take a really long time to figure these things out, and sometimes it seems like you do and then something else pops up. You are not alone and you are in my prayers.