For Those Who Have Tried Iv Fluids - What About Subcutaneous Hydration?

[Tobiano]

Hi,

It's been a while since I've posted here. I'm at another turning point and am interested in everyone's thoughts.

I'm currently on several meds (midodrine, mestinon, florinef, bisoprolol, NaCl tabs) and drink 3 litres of water per day and wear compression stockings. The meds and lifestyle measures definitely help however I still tend to crash up to several times per week when only these measures are in place.

From May to August I did a 4 month period of receiving routine IV hydration (1L over 2 hr, 1-3 times per week as needed). Magic bullet! The litre of saline could get me out of a crash very quickly. I also learned how to judge my symptoms and get the saline in advance to prevent crashes. I was nearly back to my pre-dysautonomia self in terms of functioning. Until...my veins were exhausted by all of the peripheral IVs.

In Sept. I got a PICC line and had reliable venous access for several weeks. Things were going well until it became infected and had to come out. Scary experience. Back to square one regarding my venous access...

My GP has suggested trying subQ hydration as a safer alternative (having a much slower infusion over the entire night, perhaps every night, rather than faster infusions during a few days per week). At first, I was thinking there was no way it would work. When I'm crashing, I only feel better near the very end of the relatively quick 1L infusion and then the magic wears off within a day to a few days. I doubt that having an extremely slow infusion would give enough of a hydration 'boost' to get out of a symptomatic period. But then my thinking kind of flipped. What if the nightly subQ infusions were put in place more for prevention rather than for getting me out of crashes? Sort of a similar principle to drinking the 3L per day orally (if I don't drink this much I feel horrible and am way more likely to crash and unfortunately I can't tolerate drinking any more - I already have to pee at least once an hour, sorry if TMI). Perhaps the subQ fluids overnight could give me a head start and, in combination with the 3L of fluids taken orally during the day, could be used to keep me as hydrated as possible in general. Maybe I wouldn't crash so much? Then I could save getting the peripheral IVs for only when I really, really, really need it - hopefully prolonging my veins?

Perhaps this is a shot in the dark due to desperation but I thought it was worth throwing the idea out there. Any experience with this or thoughts?

[Becia]

Can't answer for the subQ stuff, but I have a PICC and do 1 liter every other day. I know I get the most benefit from running it slow, about 8-10 hours (although depending on when I do start it, sometimes I will run for 13 hours, or I can speed it to 4 hrs). Running slow for me gives my body a chance to absorb the hydration better and its effects stay with me, rather than peeing them all out an hour later because its ran straight to my kidneys. I also have major issues taking in all the sodium we require, so for me this is another way of getting that in me.

i guess its all in your body's absorption rate and such. I never knew mine was so different via oral liquds to intravenous until I was in the hospital one time needing major hydration, and comparing how that went to how I manage at home. Night and day.

[valiz]

TOBIONO, this method is called hypodermoclysis. You will find info on the internet. When I was in nurses training in 1970, we had a

Dr. that would order this method for fluids. You can not use dextrose but normal saline, which is what us potsies need. No meds can be added. You don't need a pump. I hope this helps. liz

[Tobiano]

Thanks Becia and Liz. It might be worth a try just to see... if it helps great, if not I'm really no further behind.

Has this been suggested to anyone else?

[bellgirl]

Are you on enough Florinef or is blood pressure or headaches an issue? If you urinate every hour, it sounds that all the fluid you're drinking is just coming right back out, and not doing a lot of good either way. That's how they hydrate dogs with subcutaneous IV's, when they need extra fluids actually, so I don't see why it wouldn't help.

[Tobiano]

Hi Bellgirl,

Thanks for your thoughts. I'm on 0.2 mg florinef per day. It's the max my doctor felt was safe. You're the second person to mention hydrating dogs to me in the past few days! Life with dysautonomia is always 'interesting' for sure, to say the least.

[Tobiano]

Got a phone call today that the order is in. I'll start the subQ hydration tomorrow. It feels like a bit of a science experiment but my Dr. thinks it will help. Worth a try I suppose. I'll keep you updated.

[valiz]

Tobiano, do keep us updated. praying that it will be beneficial for you. liz

[Tobiano]

Thanks Liz

[corina]

Hope this will help you! I'm very interested to learn if and how it works for you Tobiano!

[Tobiano]

Thanks Corina. I'm getting my first dose right now as I type. I'll let you all know how it goes (I think there will probably be some trial and error with this and only time will tell if it's useful). Hope you are doing well.

[bellgirl]

I'm interested to see as well,Tobiano, so don't forget to keep us updated!! Healing prayers with Living Water!

[Becia]

I'm curious too, seeing as my PICC line has decided to get a bit temperamental as of late. It would be nice to have this as a back up method, seeing as today my doc extended my every other day schedule for another month.

[Tobiano]

An update....

I've been getting subQ infusions for a while. It took a lot of trial and error before finding what would work for me.

Right now I get 1L of N/S over 10 hours every night. I get 500ml simultaneously through 2 sites since the max rate is 50ml/hour. I have Cleo infusion sets placed in my leg and stomach, which are changed every 5 days at a clinic. I hook up the infusions myself each night. It's slightly inconvenient because I need 2 ambulatory infusion pumps and 2 lines running at the same time but I have worked out how to keep everything organized in a backpack.

I find that the SubQ infusions aren't as effective as the IV infusions. So, I need them every night. If I miss one I get dehydrated and start feeling crappy and if I miss two I'm toast. I still have to take all my meds (mido, bisoprolol, florinef), pace myself, wear compression stockings, and drink 3L of water during the day. However, they definitely help! I did wean off for a while to see what would happen and I started having pretty bad pre-syncopal episodes again. Also, I still have an order for IV infusions prn for times when I'm really not feeling well and need an extra boost. But, with the nightly SQ infusions I'm having approx. 2-4 IVs per month rather than the x3 per week I was getting before.

I don't know of anyone else who has SQ infusions as part of their treatment plan so I'm not sure if this would work for anyone else. It's definitely not 'standard' but seems to be working for me for now. Also, it's a lot more convenient and safer than a central line or continuing to ruin my veins.

Thought I would share if anyone else was interested.

How is everyone else doing?

[bellgirl]

This is great news!! I'm glad it seems to be helping you. I think they gave my dog a half liter in an afternoon, 50 ml/10 pounds/in one site. She had a hump on her back for awhile, but it all absorbed quite well. I just read that they can give medications this way, as well, so that if for some reason someone can't take a med orally, it can be given this way; like when a patient is nauseated, for example. They also call it interstitial infusion, and said 1 ml/minute/site, so it sounds like they are following protocol. Thanks for sharing your update, and I'm glad it is working so well for you! My 3 liters a day orally with Florinef seems to be working pretty well for me, but I'd probably do better with an IV every now and then. When I have a procedure, I always ask for the whole bag of fluids and it works very well for me on the day they do that for me. I almost feel "normal". What's that anyway...

[Tobiano]

Thanks Bellgirl! Glad your treatment plan seems to be working too.

[Stace915]

I googled it and I am still a little unclear. It looks like it is a tiny IV, do you do this yourself at home?

[goodnuff77]

I've had 4 port a caths and many picc lines. I received 3 liters of normal saline daily. Due to sepsis on many occasions and long term hospital stays my Drs came up with a alternative. I can't tolerate many meds or even salt tabs without side effects but we needed something safer. I now get my 3 liters of saline through a g tube. ( stomach feeding tube). With a slow drip I can get my fluids without any side effects. The chance of is very low but very easy to treat if it does get infected. Usually just antibiotics and some ointment. Now it doesn't work as well as iv treatment but still works well with less risk. I a small pump that also had battery power and fits right in a backpack with a bag of saline. So your not stuck leashed to a iv pole for long periods of time. Even though it's a feeding tube I'm still able to eat and drink normally. Not sure if something like this is a interest to anyone. For me it was a great safer alternative. Also it's needs to less sterile so I mix my fluid as needed just using tap water and salt.

[Stace915]

Thanks for explaining @goodnuff77!