Aquadiva Posted September 18, 2010 Report Share Posted September 18, 2010 How much and how often? How great and immediate are the improvements? Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted September 18, 2010 Report Share Posted September 18, 2010 How much and how often? How great and immediate are the improvements?Not so much success with 0.9 saline, but dramatic improvements with 3.0 hypertonic solution. Results are noticeable within an hour if the bag is infused over 3 hours. It's a little hard to get it infused that quickly though because getting it as an outpatient sends off all kinds of flags in the pharmacy. Kits Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 20, 2010 Report Share Posted September 20, 2010 I don't have any details on infusion time or amount. I just know that saline always makes me feel better. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 20, 2010 Report Share Posted September 20, 2010 I would love to know the answer to the OP's question, too.The last time I felt "good" was when I was last November when I was in the recovery room after a myelogram to check for a CSF leak. After having had a needle in my spinal column, my family expected me to look like I was on death's door, instead my face was rosey and I was chatty.The only thing I was on was IV fluid. It was like a brief miracle. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted September 20, 2010 Report Share Posted September 20, 2010 I use IV fluids. In the summer I would get them once a week over 4 hours. Now that it's cooler they are every 2 weeks. It helps. But it only helps for about 3-4 days. I have to have them go over a long period of time or else the fluid just goes through me and it does no good for my heart. I also have to make sure that I eat salt while I'm being infused, that helps the fluids last longer. I usually sit there eating pretzels. I think I do need them once a week, especially before my period. Was seriously dehydrated this week. Glupping water doesn't help nearly as much as IV fluids do.Sara Quote Link to comment Share on other sites More sharing options...
PotsMom Posted September 20, 2010 Report Share Posted September 20, 2010 We have experimented with IVs just a bit and it is the only thing that has had any noticeable benefit for my son! The downside is it is very transient and cost can be prohibitive. We would really like to experiment more with this but it is very expensive. I have not given up, however, on finding a way to be able to use them, if nothing else during big crashes. One of my son's secondary issues relative to the most debilitaing ones is that apetite-wise there are not a lot of things that are appealing to him. Also he generally hates the thought of eating until later in the day. Each time he has had an IV, not only has he felt much better overall afterwards, but he immediately wants to go get something to eat and often requests a hamburger, which he has no desire for normally. This in and of itself is remarkable for him. Kitsakatsa, interesting about the difference for you with the hypertonic solution. Also, are you saying that when infused more slowly the benefits are greater? Just curious about that. I too would love to hear from others about your experiences with this. I would also be interested in the kind of pricing you have encountered with this. What I have found for the most part has been $200-plus per infusion. Is this in line with others experiences? Thanks for all input. Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted September 21, 2010 Report Share Posted September 21, 2010 Where do you go and how do you get someone to prescribe the IV's? I have always wanted to do this at least every once in a while, but don't know how to get it accomplished. I know it makes me feel better as when I was in the ER after a week and a half of adrenaline surges and major tachycardia it immediately brought my heartrate down 20 bpm and I slept better that night than I had in weeks. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 21, 2010 Report Share Posted September 21, 2010 Where do you go and how do you get someone to prescribe the IV's? I have always wanted to do this at least every once in a while, but don't know how to get it accomplished. I know it makes me feel better as when I was in the ER after a week and a half of adrenaline surges and major tachycardia it immediately brought my heartrate down 20 bpm and I slept better that night than I had in weeks.I am hoping someone has it in their treatment plan and can quote it. I think that there is something that they are putting in the IVs now, but I can't remember what nor how I know that. I wish I understood the mechanics of why the IVs work better than all the Gatorade, water, salt, V8 etc. that I drink. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 22, 2010 Report Share Posted September 22, 2010 Gosh, I have such brain fog!! It drives me crazy not remembering stuff. I just remembered that it was TXPOTS that told me about the other thing in IVs that helps it last longer.TXPOTS -- if you see this thread will you tell us what you learned aboout IVs? Thanks!! Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted September 23, 2010 Report Share Posted September 23, 2010 I was on at home iv treatment for `18 months and it really helped my quality of life. I had a bag or two a day every day of lactated ringers which contain saline and a high dose of sodium. At the time, I had a port and I really loved having access to fluids as often as I needed them. However, the port became infected and I nearly died from sepsis so it is a not something to take likely. My expenses were paid by my private insurance. Hope this helps a little.Carmen Quote Link to comment Share on other sites More sharing options...
McBlonde Posted September 23, 2010 Report Share Posted September 23, 2010 I was reading (is it Dr. Rowe?)at Johns Hopkins treatment plans last night and he stated that some patients get help with IV therapy once a week.Do you have to have a port put in for that? I was thinking if I could get the IV therapy it might give me the boast I need to get over the "hump" of the latest severe flare. Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted September 27, 2010 Report Share Posted September 27, 2010 In answer to a few questions: I have noticed that infusing more quickly (when I can get the hypertonic over 3 hours) means that the effect is quicker and the misery turns around pretty dramatically. However, a longer infusion (12 hours) has more staying power and there is less of a likelyhood of peeing out the whole thing. Also a quicker infusion has a vicious thirst that comes with it. This causes me to down a bunch of fluid and just washes the hypertonic out of the system faster. Make sense? Somewhere in the middle around 6 hours is nice and there is less of a risk of pulmonary effusion (that is- if you can infuse in the comfort of your own home. If you are at an IV center, 6 hours I find can actually make you sicker due to the sound, motion and **** TVs in the center)To the person who asked about how to get IV fluids- your doctor prescribes them and then you can take that to an IV center in the hospital, or you can have them fax it to a home health service and they can rent you a pump and deliver the solution to your house with the supplies. I get both NS and Hypertonic for infusion at home. Hope this helps, Kits Quote Link to comment Share on other sites More sharing options...
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