Becia

Yesterday they placed a midline catheter in my arm, which is kinda like the picc, but it doesn't go all the way to the top of the heart. I chose to go this way, because since my doctor isn't sure how long or how effective this will be, this is a 30 day line, which should give him plenty of time to realize how helpful the fluids this way is for me. At the end of the 30 day period, the tech who placed my line said he could put a picc using the same line, just by adjusting the catheter in me, and exchanging out the end which I hook myself to the IV, thus eliminating another torturous procedure, and then that could tide me over until I get a port placed, because my insurance it could take a few weeks to get approved. He also said with this catheter there's a slightly less chance of risk of infection like endocarditis,because the catheter for this one only goes to the top of my shoulder, not around to the top of my heart. The tech totally gets that I will be back in, and already has me on the schedule, lol. A couple things from yesterday's ordeal... I already knew I don't handle pain well, and I didn't handle it well at all yesterday. They numbed me, and said they would wait for me to give them a sign to proceed. Well, the numbing shot of lidocaine burns of course, and that set off a heart rate of about 150, and me in a slight panic. When I thought I was numbed, I wasn't, because he started doing everything, I started crying, it was so painful. So he stopped, re numbed the area, made sure my hand stopped twitching (I think he may have hit a nerve, because my hand felt funny and every time he touched me, I twitched), and then we went back along. After the second shot, it wasn't too bad at all, still had some pressure/uncomfortable moments, but nothing like the sharp stabbing pain beforehand. And I guess this is a good thing I decided to go the route of getting Iv hydration, because he was talking to me about my blood work before the procedure, and my kidney function isn't the greatest in the world at the moment, no doubt from being constantly dehydrated not only from just being potsy, but also from dealing with my stomach issues the past 6 months. He believes I will rebound once I start getting properly hydrated, which is a good thing, but if not, it's something to take to my doctor. I haven't had any fluids yet, home health had to wait for me to get the line, and then they had to submit to my insurance, but hopefully in the next couple days they will be here and it will start. In the meantime though, if I have to go to the er for fluids and meds, they can do everything through this line, labs and all. That alone is a miracle I'm very grateful for, because the hr spikes under pain and touch, and with the fact I haven't gotten it below 100 in the past five days, I can't take much more. Will keep y'all updated on how things go

Sending prayers and positive energy your way.

I believe picc lines have to be covered,and ports do if they are currently accessed, but I could be wrong. They are placing a picc tomorrow morning in me. My hr in the past three days hasn't gone below 100, it's currently 136, and they are hoping that the fluids will start bringing it down. I told my insurance it's either this at home, or I'm in the er every week if not multiple times, you take a pick of what to pay... $600 a liter for fluids in er, or $20.

Yeah, the vascular surgeon didn't want anything to do with me, he kept telling me he only did chemo ports with a def in and out time, and said interventional radiology would be the area I need to see about having the line. I see my gp today for a physical, and I guess we are discussing this all further, because by the time I leave, I should have a date for when whatever is getting put in. I'm taking posts from this line with me for information, and I'm still battling for a port, because it won't restrict my arm as much (I interpret for the deaf, and have been told if I have a picc in, it could possibly affect my signing while it's there), and with my history in the last year of needing fluids so often (every couple weeks is the longest I've managed to go), I can see a port being very helpful over a picc, which is a temporary fix to me.

Again though, in this last hospital stay, my hr was going to 180 just sitting up, so they were freaked by that, and would come running in in pairs...

Um... Maybe I'm a horrible patient, but you still have the right to get up and move. And if you're on a monitor, they will see something going on. Call them, then exhert yourself. You gotta advocate for your care, and sometimes showing doing so is risky, but it gets you the care you need. And believe me, they told me the "you gotta have someone with you" part too, but I finally told them if I need to pee, I don't have 20 minutes to wait for someone to come in and walk me. Put me in a monitor, you will know what I'm doing and when, and when my hr would spike, they knew I was getting up, and would start coming to the door. Sometimes they made it before I crawled into the bathroom, sometimes they didn't, but they did learn to listen to me, and to trust me that I wouldn't put myself at risk... I just had to pee.

Yep, on 0.2 of florinef, with a lot of adverse reactions:(

I have a lot if issues with my stomach and esophagus due to recurrent bouts of refeeding syndrome, according to my gp at least, I have moments where I'm able to get food in me, but it promptly comes back up because my body just can't handle solid foods sometimes, and all that happens if I'm just able to swallow anything. I do much better with fluids, soft foods, but one can only eat so many bananas, lol. Today we went to a Japanese steakhouse where we did the hibachi table (total fun, but total trigger for me, I basically went to the bathroom for the 20 minutes it took to do the clanging and clinking), and while what I had was noodles, stir fried veggies (soft), and he cut my chicken very small and seasoned very bland, I still had struggles swallowing the few bites I ate, and about 20 minutes later, while I was in the middle of lowes getting seeds, I still had to rush off and throw up. Pain intense in stomach, never ending nausea, nothing helped my headache that's for sure. My housemate pointed out that I love miso soup, and had a cup there. Miso is a total sodium bomb to my body and stomach, and while it was sooooooo good, that is possibly what my stomach started revolting at. I can't handle tons of sodium at all through my digestive system, and I may have just done myself in just enjoying my cup of soup. The same thing happens here at the house if I have something salty to eat or drink too. It takes so much out of me physically with all the high runs of tachy (today I woke up with it at 125, and it just got higher and higher with everything), the nausea/attempts to swallow food and keep it down, and in the end, the sweats from throwing up and shakes while all of this is affecting me.

How long did everyone port last? I know you gotta flush it at least once a month from your post, but did they keep them in you for years? My docs want a time line for me needing this type of care, and I know I can't give one, and im willing to give the picc a trial run, but I have a feeling I'm gonna need this therapy for longer than the 6-8 weeks at the initial start, and I'm terrified of the complications, but oh so ready to be less symptomatic, and able to focus on my swallowing and stomach issues.

And talking about weird Iv placements, I remember when I worked as a phlebotomist in the hospital in my home town, and how there were some people that we all would draw straws about who was gonna go draw them. There was the diabetic who basically had dust for veins when she would be admitted, and was always needing 5 tubes of blood taken, and then there was this end stage renal patient that had just nothing. I would rather have stuck the one gentleman who had a vein on to of his finger than this poor lady... One time, the only place she could get an Iv was a surface vein on her chest, and she got mad and yanked it one, blowing it. I always wondered why they didn't place a central line in her, but she wouldn't let them. She would rather be stuck 10+ times, which now makes me cringe, because I can't handle being stuck twice for ivs and blood draws. Sends my entire autonomic system into overdrive.

Yeah, I was begging for port over picc line, and may still go in and argue the same thing on Tuesday when I have to have a physical for the line (they want to know I'm "healthy" enough to handle this), just because the infection rate thing scares the fire outta me. I think I can handle it, but I'm still a bit fearful. I saw a surgeon that my gp wanted to put a port in me, and he said he couldn't do anything until we had a timeline set up, he wasn't comfortable just putting one in without knowing how long it may go. Right now, anything is better than nothing though. Just trying to focus on the therapy, and getting my body back in halfway decent shape... Or at least be able to stand and walk a bit without kissing the floor after 25 feet or 1-1/2 minutes (yep, still passing out within that much time). If this will start to help lower my heart rate as well, this could save me from another painful procedure for a pacemaker to control the tachy.

Mine was pretty easy... I asked for it. The doctor asked why I felt I needed one, and given how I've had to use a wheelchair for distances past 25 feet or so, my explanation was "they frown upon laying down in the walmart parking lot." Hr wrote me a script for it, and took it to the dmv. Cost $25 at the drivers license department, but I have two tags for different vehicles until 2017.

For the past six months I've struggled with swallowing issues, vomiting issues, and just basically getting what I need out if the nutrition I try to take in. High salt diet has made me even sicker, it's like my stomach just doesn't want any of it. Looks like next week may be the day, either Wednesday if they really expedite it, or Friday. If they can't get it done then, it will be early the next week. Will let you know here how I do... Not looking forward to the pain of it, but am looking to feeling more of have i feel when I get hydrated correctly for my body.

I'm about to get a picc line for a trial run of hydration therapy, with a port happening if successful. I def do better with Iv hydration than drinking, but have only one vein left, and with the numerous neuropathy issues I have, it's very painful and sets my heart rate really high if I'm touched or poked too much. I'm wishing they would do the port instead of a picc because of the infection rate issue, but if it doesn't work like he wants it too, I'd rather have it easy to remove than have surgery to place it first (and my doctors are considering this a type of surgery).

Starving. I think I'm coming to your place for dinner, lol.

Diagnosed a year next month, started showing major symptoms a year ago this month, and according to one doctor, I've probably suffered with this for about 7 years, but it wasn't until I had two heart ablations for PVCs that it reared it's ugly head. In the year since it has though, I've gotten completely debilitated, was bedridden for a bit, but am slowly gaining strength back, even though I'm still symptomatic. My bp seems to be under control now, but my tachycardia still makes it very hard to live. Hoping that changes soon.

No clue what's gluten free for syrup, but I have to giggle... When they give me zofran for my stomach in Iv form, I get instantly hungry (probably because I haven't been eating solid food in a long time without severe issues), and pancakes is one of the things I literally crave. I feel I could eat a million of them, and hashbrowns too. I begged my dad to go to mcdonalds at 3 am coming home from the er one night for pancakes... He didn't stop, because I turned around and passed out in the car (they didn't hydrate me very well, and I was still very triggered from being poked).... I still haven't gotten my pancakes lately, lol.

I go from one extreme to the other with temperature. It was very warm outside and I was sick, but then shivering three minutes later in the same heat, and wore long sleeves and a hoodie in church today. Just way out there with temp regulating. I go tomorrow to have a meeting with a surgeon about a mediport for Iv therapy to help me hydrate better (because I can only get about 48oz in me a day, and then I end up vomiting up most of it if I try to eat). Good luck on your interview! I just finished my schooling for transcription, and have a six month course to go with it, including a job search. I'm hoping this is something I can do, because working outside the home isn't doable right now.

You know you have POTS when... ...You scream in excitement when you notice that the pretzel M&M's have 200mg of sodium per serving, thus allowing you to have chocolate. I know its not much, but its better than nothing, and sometimes you just need chocolate, lol. ...when you salt your water in the restaurant, thus causing the people around you to gag. For what its worth, I usually get a lot of lemons with my water, so I don't really taste the salt. I got asked "if you're eating so much salt already, why do that, why not have plain water?" Any little bit helps, and given how my stomach may be doing that day, I may not be eating, so drinking my sodium it is.

Can someone walk me through how you came to have yours, and how you got into Iv therapy? I meet with a vascular surgeon in regards of one on the 2nd, and my gp and I both think this is a big step in the right direction, especially with the summer and the fact I cannot regulate my temperature, and stay hydrated in this heat on top of the usual struggle with it. While my stomach has been calmer later, any day I try to drink the recommended amount for me, it leads to throwing up, swallowing issues with anything not liquified, and just general more "blah" for me. Usually I have to end up in the er for a liter once or twice a week, so I'm cautiously excited to be doing this at home now after it's all said and done. I feel so much better after a treatment. When I was in the hospital for a few days, I was able to stand and walk a bit before I got too symptomatic, so it felt like just that much made such a difference. I'm ready for that feeling again. I'm just curious of how others do this, either port, or PICC line, and how the procedures went to insert these, and the access to them for your therapy. I made the mistake of watching a YouTube video of in plantation, and went "YIKES!"

I cant see straight either, but I'm just loopy enough with a headache and current crash, my attention span is nil. We have a jigsaw puzzle we've all been working on, and yesterday I sat down at it, gave it about 5 minutes, and went "yeah, I can't focus on this mess", went back to bed. Last night was better, but today, I'm back to the same ol' "squirrel!" moments. ADD at it's finest right now, lol.

I'm in the same situation of sorts. I was asked by my friend Clark to participate in a competition choir at the local welsh festival. Singing is very important to me, and one of the first things I had to give up at my diagnosis. I tried, but it is very physically taxing. I said yes, because I wanted to see if I could do it, I wanted to be with my friend, whom I love dearly, and has supported me in so many ways since I've been ill. Yesterday was the competition, and while I was very sick for most of it, and came home and totally crashed, I managed it, and we came out on top. We got first place, and a standing ovation, the only choir to do so. I don't think I'd seen Clark this happy in ages, and I was so grateful he thought of me to do this with him. It took him and my friend Corey to get me on stage (still in wheelchair, was very triggered, and already had had a seizure that morning, so they were being very careful with me), and Clark's dad and another gentleman to get me off stage, but I managed to sit up in my chair surrounded by the alto section (and I'm a first soprano, so that made it so fun, lol), sing a beautiful version of an E.E. Cummings poem (I Carry Your Heart With Me), and got to see Clark really in his element for the first time in ages. When I finally got home yesterday, after having the most amazing talk with Clark, accidentally getting sunburned on my neck (Corey didn't stay behind me blocking the sun, I didn't think much of it, but I'm guessing I'm very sensitive to the sun now because it was only just a few minutes), I had several seizures, just from my body being super taxed and stressed. I ended up sicker than a dog. But man... It was all so worth it. For a few hours of being outside this house, in the fresh air, with friends... I will feel like this for a few days more, but man... Memories were made. I tackled that competition like a boss. I've got bumps and bruises in many different ways, mentally, emotionally, physically... But I'm straighting my crown, and owning them, like a boss. Never headed off a crash, but honestly for me, just embracing the fact you know it's coming, try to hydrate and do your usual thing, and allowing yourself to rest, makes them easier. The crashes that are the worst for me, are the ones that you try to ignore.

I play on my iPad a lot, mostly bingo games, scrabble, words with friends, and my newest favoritest game, Flutter. I play flutter when I need to calm down, as the goal of the game is to raise butterflies in a rain forest. You breed them, raise them, feed them, play some simple games (such as find the leaf bug, feed the frog, missions where you send a butterfly off for a few hours). The music is calming, and you learn a bit too (I like butterflies, so its great for me, lol). Not fast paced, there are no real effects...

I reacted horribly to Paxil and Celexa, to the point I was in the hospital both times. I shook like I had parkinsons, couldn't focus, headache was horrible, just horrible. The celexa I was on for only a few weeks, but the Paxil I was on for several months, each getting worse. I kept asking should I be feeling like this, and my doctor just told me "its not in your system enough, up the dose". Well, I did, and it got worse and worse. I think the hospital finally diagnosed it as a "paxil crisis", and I've made the decision of no more SSRI's because of it. They tried to put me on zoloft last time I was admitted, but I had to remind them that's an SSRI, and they don't seem to work with me. I do hope you feel better soon

I have big bang theory on the brain... I read this as Dr. Leonard Hoffsteader at first. *facepalm*