Iv Therapy Update

[Becia]

So a week ago yesterday I had a midline port placed, and a week ago today, I had my first at home IV treatment. Right now they are just doing normal saline, and I'm allowed to run it in as fast or as slow as I desire. I have chosen to run it over 8-10 hours normally, and so far, have done two treatments (one last week, and one yesterday after they changed my orders from 1x a week to 3x a week, and I received my extra supplies).

While having the midline port has been painful and something that has kinda freaked me out, how I feel at this moment makes me glad I pushed for this type of help. I've been able to walk a little more around the house (sometimes pushing my wheelchair to keep steady and close in case I need it), wake up a bit easier, and for the first time in several weeks (actually since my last hospitalization) I was able to get a standing BP reading on my machine here at the house. It took a few tries because my BP bottoms out severely before popping back up very slowly, but I got the reading.

So far, it looks like my doctor is willing to try this for at least the summer, and then reevaluate. But I'm cautiously optimistic that doing this will help me heal in a few different areas, such as being able to work on eating solid foods and swallowing (because swallowing so much fluid to try and hydrate has been torture, because then I don't eat, or I can't swallow anything not liquid). I can regain my strength. Perhaps the medications now have a better chance of working too? I guess we shall see.

Just thought I would let you know. This place has been awesome, and I'm really glad I found it when I did.

[valiz]

So happy for you. You have been through a lot, and am glad the saline is helping you. I have felt better when receiving IV saline after fainting episodes took me to the ER, but haven't attempted to have it on a regular basis. I never felt it helped me more than 24 hours...but even that is a big improvement. Best wishes as you continue with saline IV's. liz

[corina]

Happy for you Becia!

[E Soskis]

Wonderful! The IV port will continue to heal in and after a little longer, won't be painful anymore. The first few times it is accessed after insertion, it can be somewhat painful because it wiggles around a bit - this will get better and better. Just keep everything very sterile when accessing it - be sure and flush it well after the infusion using the heparin solution. Mine lasted a long, long time and the only reason it got infected was because I also had other central lines inserted near the port. I hope you keep feeling better and the saline continues to work well for you.

[Becia]

Unfortunately it's a temporary line in my arm called a midline catheter port, but there is a possibility of actual port implantation at a later time.

I did an infusion Wednesday, was able to get out of the house for a few hours yesterday to visit with a friend and her kids (2 years, and 1 year old twins, all girls, lol), and we ended up going to Goodwill. Today I have a horrible headache, and really need to be doing my infusion now, but instead have to travel an hour away to a doctor who's supposed to evaluate me for my insurance. He could say I still qualify for it and I keep it and keep the therapy, or he could say I don't anymore, and pull all of my stuff. Praying he realizes how bad this is, and I can come home and do my infusion with peace knowing it will continue. If he deems me not disabled enough for my Medicaid, it all has to go back, and the line will be pulled.

But I tell you what, the slow decrease of a headache on Wednesday as I was doing my treatment, was amazing. A lot of these problems, including my speeding heart apparently, are tied to my hydration. I watched my hr slow, my headache ease up, my appetite come back. It's truly amazing.

[SarahA33]

Becia,

I hope you catch a break with the IV's. I often check into your posts to see how you are progressing. It's great that the port has helped and that you were willing to go through the pain and hesitation to get to your end result. Sounds like you are on the right path and surrounding yourself with doctors who want to help you a great deal.

This isnt related to your original post here, but I was wondering how you are doing with your seizures now that your IV saline has started. They Dx'ed me with Generalized Convulsive Epilepsy but are also thinking migralepsy also. Have fun at your amusement park and take it easy! Small breaks in the shade!

Also -- hoping the meeting you had went well for your insurance.

Sarah

[Becia]

Seizure wise, I'm still having them, sadly. Currently depends on how triggered I am, how tired I am, how hydrated I am. It seems the worse the migraine I have, the more apt I am to having them because my body literally can't handle much more, and even when I'm downed, I have to get up and use the bathroom, and that little bit of exertion is enough for me. With the dehydration, I do have them often, and am hoping that at least getting the 3 liters a week in me helps aid in this. Currently I think it's too early to tell; I had one this evening on the way home from church. I perpetually live dehydrated at the moment, hoping the treatments help bring me up a bit. My fear is that the dehydration will never be resolved. I can barely eat most of the time, much less eat and drink 3 liters of fluids per day.

I too have filed for disability, and am now in a yearlong wait to see a judge about it. There are days I feel I could work, but on the days I try to hold "office hours" in working on school stuff, or my jewelry making (I've started making jewelry again after several years of not, just to keep myself busy, and sell a few pieces here and there for some money... While I get food assistance and medical card, I don't receive cash assistance for anything else, so my hobby helps buy things like shampoo, lol), the next day or two are a disaster. I'm in a crash now, because I have three appointments a week, plus church... I just physically cannot do this anymore.

And I feel you on the brain fog and confusion too... I was glad to let my lawyer handle mine, and my friends as well... I can't keep up with anything. I finally made a file on my computer that lists every hospitalization, doctor, diagnosis, med start and termination, different therapy, anything and everything, and it gets added to each time things change. I had so many visits with specialists and such that I couldn't keep up, and neither could my power of attorney (I opted to go ahead and have one, because they couldn't keep me conscious enough to answer questions in the start, and recently with my headaches, they effect my speech something horrible.), so the file came to fruition.

[SarahA33]

While you were in Cleveland did they do a long term inpatient monitoring video EEG? They have an epilesy division dont they? Curious to see what your pots doc's say about your seizures.. do they think they are related? My doctors don't feel the POTS and Seizures are related.

I understand not physically being able to do this for much longer also. It's so difficult, I never saw this one coming. I'm sorry your SS is taking so long, that's crazy. I know some cases take a long time, but with all that you have going on it should be approved. I'll keep you in my thoughts and hope that the process speeds up for you.

Hang in there, every day I tell myself "This too shall pass", even if I know it's only for 5 minutes or 5 hours..(it always comes back, but it passes momentarily ) I'm always here to listen

Sarah

[Becia]

Nope, CC didn't do much with me at all really. I obviously wasn't fine, because it's still been a long crazy struggle since, and all my tests came back with "yeah, she's got issues." I've had one neuro tell me they aren't, but my current neuro thinks they may be to an extent. I hadn't heard of migralepsy, but might look into it as well, because these never ending migraines are for the birds, and everything they put me on, makes them worse. They keep treating the headaches with triptans, but they make mine worse.

Yeah, I have a lot of anxiety about doing things around the house, outside the house, everywhere. Last week when I went to a friends house for a few hours, it was great,but all I could think was "please don't have a problem here, she's got three little kids, I can't scare them or her like that." There are very few people I trust myself being around because of the problems. I don't even like being around my real family if I have problems, because they just don't understand. My restrictions are "do what you want, within reason, knowing how your outcome may be." I've stabbed myself with knives trying to cook, I've broke glasses passing out and falling in them (that wasn't fun, little shards of glass in sensitive hands, ouch), fallen down the stairs because I was trying to do my laundry when the house was gone, hurt myself in and out of the shower, and the list can go on and on... I have a hard time realizing my limitations. I have asked a friend of mine who went to nursing school to be my personal aide at this point when I go out, because she's the only one around me other than those I live with or have seen me have one and know the routine, that will remain calm and keep them from calling 911.

My friends and doctors encourage me to go out of the house as I feel, and sometimes it's okay, sometimes it's overkill. If there's people here at the house, I'm okay being here,but the past week when everyone was out on vacation and at camp, it was extremely lonely, and upsetting to me. A friend came over a few times, but it was just me and the dogs. Talk about stressed... One of the dogs has seizures too, so we were both peas and a pod... She stresses when I have them, I stress when she has them, lol.

In the end, it's all gotta work out, right? Something has to give, the world has to be okay. And someday, you'll get to use that pink mixer (I'm jealous if that by the way, pink is my favorite color, I wear something pink everyday because it cheers me up).

Right now, I just wanna focus on Thursday. Come on amusement park... Mama needs a change of scenery.

[SarahA33]

I'm not able to take triptans because they affect my cardiovascular system so much.. chest pain, rash, BP spikes.. not fun. The sad thing is that the Nasal spray Imitrex helped the migraine.

I cannot believe they havent suggested any long term epilepsy monitoring. Maybe that could really help you? Atleast they could try to pin point where they are coming from and make the best medication plan to control them. Take a quick look at this if you are able to, just for some info about what they can do with inpatient monitoring.. http://urmc.rochester.edu/strong-epilepsy-center/

Sounds like you'll have fun Thursday! Just a few more days to go... Hopefully you can take a cooler packed with fluids so you don't spend a fortune there, lol.

take really good care of yourself,

Sarah

[Becia]

Nope, no long term epilepsy treatment either. I've had a couple this week, one that had me apparently fall and I ended up with a sprained hip again (except being the hip that normally does this, it was the opposite side). From what I get from everyone, they think its the Tramadol they prescribe for pain control for major issues, giving me more seizures than anything. Anytime I'm on it for a week or so, they really pick up a lot. If I can keep my migraines and such down, and not have to rely on it, they aren't that bad. More like the focal seizures, where you're kinda just out of it, instead of the bad grand mal's I've had lately. Of course, the more stressed my body gets with flares or triggers, and the grand mal's pick up, but lately I've done fairly well with keeping them down.

I still think the triptans make my pain worse. I can kinda deal with the cardio issues I have with the imitrex shots, but if I have those and increased pain, I have increased issues.

I had a blast at the theme park. I did manage to ride two coasters, very mild ones compared to what I truly wanted to go on, but after passing out on the second (it was more movement than the first was), I called it quits, and window shopped, kicked my feet up while the kids swam at the water park, and talked with friends. The extra hydration therapy i've been doing with my picc here at home has been a godsend... its really helped in my crashes and such lately, I'm very glad I have it, and I hope I get to continue it for a bit.

Doing the therapy at home has given my body a chance to try and eat and equalize a bit, which has been good. Its kept me a bit perkier than usual, and has made the current crash I'm in a lot easier to manage.

[SarahA33]

*Heads up: I was taking a nausea medication called Compazine for the migraines. 1 pills 3x a day. My epilepepsy specialist told me to throw it out and anything else RXed for Nausea. Apparently if you already have a low threshold for seizures this can actually increase seizure activity.

His suggestion was toast..which I'm way passed toast. Then he mentioned something his wife took when she was pregnant called Emetrol.. its OTC, grape and cherry flavor. I do really well with it.

So glad you that you had a good time at the park! Hopefully your 4th of July was peaceful.. i think thats what we all want, peace.

nice to hear you had a nice time, becia. Did you have fried dough? thats my weakness. I'm sick 3 days later but i JUST LOVE it

[Becia]

Oh yeah, compazine and reglan both set me off something fierce! Seizure and tachycardia out the windows, lol. They are both on my "give this to me, and you will seriously regret it" list. I use phennergan and zofran medication wise, and peppermint oil and tea herbally to help. Sometimes it works, sometimes not. I might look into the emetrol.

4th was a bit crazy with an er visit for spraining/dislocating my right hip, headache and just being tired, but I got to have a bubble bath, which was awesome. Of course, I was so crashed from it, it took about 3 hours to crawl back through the basement back up the stairs to my wheelchair, but luxurious bubbles of spearmint and eucalyptus made it worth it.

Nope, no fried dough, I fact, I didn't eat much at all at the park (kinda wanted Graeters ice cream, but was so afraid to overload my stomach, that I held off). Next time though, the fair is coming up, and I'm craving funnel cake, lol.