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Everything posted by RecipeForDisaster

  1. Hmm interesting idea. It's raised about 6". It did happen before, though. I don't find it uncomfortable, at least. However, I don't usually get hot when presyncopal. Somehow the waking thing feels different than my usual stuff. Does anyone else feel multiple distinct types of nausea? I have tried to sleep with my legs elevated but my back hurt a lot. That was an idea from one of my doctors. I guess one could switch their head to the foot end to kind of lower the head below the heart.
  2. I have the head of my bed elevated on stands, because it's supposed to help your kidneys retain fluid better. I'm doing so badly, I don't know if it has helped or not. I usually wake up blazing hot, nauseous, and tachycardic at about 2-3am. I despise it.... it makes it so hard to fall back asleep.
  3. Here we have those valved ends to add onto any kind of catheter. They are never open to air. I believe that any kind of catheter or port can use a pump, gravity/dial a flow, any administration method. I've never heard of the type of access restricting how infusions are delivered (infusion pharmacy is my career-I'm also a patient, at a different company for privacy ). Maybe they'd let you access your own port because you're a physician. Once in a while, we see people who do that, if they sign a waiver. I don't think people are so leery of liability there, though, right? That's crazy that you're on your own. I pay 30% of everything for my infusions, but there is a "per diem" that's a set fee for a day of therapy. That covers all the supplies, delivery, fluid, etc. I could get one gauze square or a big bag of stuff and the cost would be the same.
  4. I suppose I'm not strictly resting for 5 minutes because I pump with the other hand a minute before deflating. The actual deflation doesn't require anything on my cuff, it's just a loosened screw and I let it deflate at the same rate, I don't speed it up or slow it down. So, I don't move at all while I'm taking the reading, just listening. I'm guessing and - hoping - that my BP isn't artificially high from this activity, when I am getting readings I need the low 70s!
  5. Most people don't get systemic anticoagulant, just daily heparin in the line itself (not enough to reach the bloodstream, really, it just fills the catheter). In a port it'd be a monthly heparin flush. Longer term usually equals a port. PICCS can last but not usually as long. They can migrate, get pulled out, clot off... there are drugs to de-clot if it's just the catheter blocked, but they are very expensive.
  6. I meant I don't fit the demographic for sleep apnea I actually don't have POTS... we don't know what, but it isn't POTS.
  7. I take my own BP manually too. It works well and is very accurate compared to a nurse's readings. The pressure from the cuff holds the stethoscope in place and I don't need to move that arm, it rests on a counter or table. I have almost never had an accurate reading from an automatic BP machine. I find they always read high on me. I had an excellent one and gave it away... the manual readings are the only way to go for my body.
  8. Yes, this is true. Patients with ports can hook themselves up when the Huber needle is left in. It can stay in for a week before it needs to be changed. Otherwise, if no needle is in, a nurse needs to come and access the patient. Ports need to be flushed monthly if not in use, and other types of access like Groshongs, PICCs (probably the most common, hangs out of the arm), and Hickmans need to be flushed daily. You can swim with a port if not accessed but not with the others. But, you can connect your own infusion with everything but a port.
  9. I'm so happy for you!! Nursing copay would be $95 a day for me (but I have my own nurse, my husband), and my copay for fluids is $30, so yes, it can be expensive (not as much as the ER!). I run mine through a peripheral IV, usually 1500mL normal saline over about 8 hours. The slower the better. I've used up to 2L before... it used to be that 1L made q good difference, but I've gotten worse. I find that the benefits last about 36 hours at most. I am happier, sleep better, have a better appetite, less pounding heart, much less dizzy/presyncopal/weak/blacking out starting about halfway through a liter. Good luck!! I run my infusions when needed only because I need to preserve my veins. I'd do it for maintenance (and would function much better) about 3 times weekly if I could keep an IV available. Most people can leave one peripheral in and maintain it for those 5 days, but I clot too well.
  10. I don't fit the demographic at all myself... young thin female, very light drinker, never smoker. I actually look forward to putting my mask on at night. It was not hard to get used to and there are so many mask options now! I have both central and obstructive apnea and was diagnosed via a home test.
  11. Funny, I've been having nightmares and waking blazing hot, tachycardic and nauseous lately. I do have sleep apnea but it's well treated with CPAP.
  12. Me too. I feel like I could pass out most all the time, and it used to be that I could have nice vital signs and still feel horrible. My output is okay on echo, but who knows about my blood volume!
  13. You know, I'm not sure compression is good for my terrible circulation either-my extremities are cold and gray or purple. I've never had amazing results from even waist high compression, so I don't believe it'd be worth it. I just layer tight spandex pants over my knee high ones. the SCDs seem fairly easy to get on and since they inflate and pump... they seem more helpful.
  14. I take licorice with it (florinef gave me frequent migraines ) and a ton of salt. Good to know, I'll alert the doctor today. I totally get heat you're saying-I don't want to scare them. I tried not taking any DDAVP today as I won't be upright much. Interesting idea on the butterfly IV set! That does sound pretty easy one handed... but yes a long time to leave the needle in.
  15. I'm taking it in the daytime. He has prescribed 0.2mg twice daily! He is a hematologist so totally winging it. He asked ME what dose I should take-I can't fault him, at least he is trying to help. He ran tons of labs (including sodium) on Thursday, but I don't have results yet, and my sodium does tend to stay on the very low end of the range. He's an hour from here so I can't get there for labs anyway-not even to his hospital system-and he hasn't ordered follow up labs. Yesterday I took 0.025mg and this morning I took 0.05mg. I passed out for the first time in a long time, yesterday, BEFORE I got my hands on it, so I wanted to get a boost to avoid IV saline. My plan, approved by another doctor (who didn't have the guts to prescribe this, sigh) , is to take it when I need it, for now. I just don't know the dose yet as I'm trying the tiniest amount. I haven't noticed a big difference, but I'm certainly not hypERtensive! I don't get thirsty, so it's easy for me not to drink too much. I'm probably taking 1500mL fluids these days. I did wake with a headache, but I often do.
  16. That's the thing-compression helps, but not much, which is why I don't bother with taller or more compressive stockings. I've tried them... I'm using knee high 30mmHgs for now because they're not that awful to put on, and they help almost as much as the taller ones. If I can get SCDs covered by insurance, and use them while seated (with my feet up?), and they're helpful... I also use a weighted blanket covering as much of my body as I can. That seems to compress some of my body!
  17. In Boston... I have two referrals! Dr. Systrom (cardiologist), my doctor says, likes to run some really invasive tests... I hadn't heard of Dr. Farhad but he seems to be at Mass General and is a neurologist. Any experience with these doctors?
  18. I normally am okay with clot risk-I am determined to stay pretty active, so unless I'm immobile or otherwise at extra risk, I'm not on any treatment/preventative for clotting. I do think maybe the clot risk would get these covered. Just curious about at home use. I can't use them while seated? I do love putting my feet up. Good to know about the ACE wraps. Makes sense. Compression hose are just too exhausting to put on if they are tall enough and high enough pressure.
  19. One of my doctors, desperately trying to find a way to help, wants me to get sequential compression devices for my legs. These are the pumps that cycle inflation to avoid blood clots in your legs... usually used after surgery. It's a novel idea-I really can't get tight enough/tall enough compression stockings on, it's too exhausting, and it's not worth it to pass out in order to get them on! Another doctor said to try ACE wraps around my legs, too. Has anyone tried anything like these? The pump is quite expensive, and it does deflate, so I'm not sure how helpful it'll be. I found a study on the use of SCDs for hypotension during dialysis and also one for hypotension from spinal anesthesia. My one idea is to see if they'll be covered insurance due to my clotting disorders. If I get much worse, I'll be bedridden and at great risk for clots anyway. EECP is another interesting modality.
  20. So, one of my doctors felt so bad for me, and so worried, that he prescribed the DDAVP even though it's way outside his expertise. He wrote for 0.2mg twice daily, ouch! I tried 0.025mg last night to start with.... I think I felt a bit better afterwards, although my BP actually fell a little. I woke up with a headache but that's not that unusual. Today I'll try 0.05 and see how I do. The doctor told me to take it regularly, but all the studies I've read say that's not safe long term... I'm not sure when I should get my sodium rechecked-I don't have Thursday's results yet. I had tons of labs run.
  21. Welcome-there's plenty more like you, with inconclusive TTTs and few answers, but daily symptoms. Good luck and hang in there!
  22. 2:30-3am is my classic awakening time, too. It's terrible-too early to get up, but too close to 6am wake up time to get a decent 3 hours sleep beforehand ... I'm sure there's something behind this-it's too consistent time wise.
  23. I have sleep apnea which is well treated, but most of my problem is very light sleep and discomfort. It's either pain, noise, some stupid thing, etc. waking me up, and then I don't feel good enough to fall asleep again. If not for my beta blocker, I wouldn't sleep at all. My pounding heart alone would make sleep nearly impossible. I very rarely wake refreshed and I follow sleep hygiene to a T. I am in bed plenty of time to get "enough" sleep, but with all the awakenings, it doesn't add up to nearly enough. I suspect my sleep quality is crap too. I use Benadryl, melatonin, Valerian, theanine, magnesium threonate, etc. alternating with an extra half metoprolol (I can take an extra whole one by my Rx). They help somewhat... not always enough! Benadryl is most likely to get me to sleep when I feel extra bad.
  24. I wrote to both of you privately. I also waited more than a year to see Dr. Novak and have had a mediocre experience with him, although I do still see him. My biggest issue was when he did my SFN biopsies DURING my TTT and then wondered why it was inconclusive!! I was so scared and in pain.... I hate making a 90 minute trip to see him and spending 3 minutes in the exam room with no new ideas, I know we are frustrating by design, but that's not our fault!
  25. Yes, it varies, though. If I'm doing okay (BP generally above 95) I have really nice veins, maybe too distended if anything. The more shocky I am, the less they present themselves... not good!
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