RecipeForDisaster

I have a script for infusion 3x weekly too. I do 1500-2000mL of saline. Nothing helps as much as an infusion... but the effect is gone within two days. The only things that restrain my use are acting to keep my veins usable, and time to run the fluids slowly" good luck! So, I wouldn't say that I get permanent results, but it's vital to me.

Oh, a cold will knock me way down, and I'm the same, my autonomic crap flares before I have any idea I'm getting a cold. I'm talking about a little temporary allergy issue, the tiniest little itchy thorat thing. That's just silly that that's enough to set us off.

I haven't been certain, but it has seemed like my usual seasonal allergies have set me off many times. It's like I'm in a big unexplained flare, but then I realize my throat is sore, I'm sneezing, etc. it's really annoying that something so minor can give us such issues,

Fluids normally help my chest discomfort a lot. If I could afford the oxygen I was prescribed , I thought it would be a good experiment to see if that helped the chest discomfort, too. I've had the same suspicious radiating pain with nausea, etc. I haven't had a cath but was cleared by cardiology for angina type issues, sigh. Of course things can change! These weeks of discomfort were different. The quality wasn't the same, the persistence was unusual... I think DDAVP may have helped, so my guess is that it was due to especially bad perfusion. I am always hesitant to look like a hypochondriac, which is dumb, I know.

I'm really hesitant to look like a demanding or neurotic patient after my 30 day monitor and stress test several years ago ("my heart is fine"). It's a tough balance... I see a cardiologist next month, and I am still around, so it can probably wait.

Right, I'm taking about temporary lowering of the head, like I did last week when I passed out. This time I actually still lost consciousness, but it would usually help.

I wonder if you could prevent clots somewhat with aspirin or clopidogrel. I'm allergic to aspirin and NSAIDs which doesn't help.bFor me, I have increased risk, so I can't even consider permanent access. Also, for me, I don't see fluids as a bridge... I'm already quite fit and force myself to stay upright and active, even though I'm really not doing well enough for those. I use fluids for rescue but I suppose I'd use them before a big event or something. @pistol my infusion company was recently bought by option care. My company is good... it's just my insurance that's dictating the copay. I get the supplies and fluids I need delivered by a driver. I have no idea how I'd recognize an MI, PE, even sepsis. I feel like those conditions 24/7. I actually wondered whether I should have a 12 lead recently because of really unrelenting chest discomfort for weeks, but I bet I'd be disregarded l

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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!

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?

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.