Ports, Scheduled Iv Fluids, And Low Blood Volume

[trice125]

Does anyone on this board get scheduled IV fluids? If so, what has been your experience with them and have they made any difference for you? Also, anyone got a port placed to get them through? Due to have really bad veins my electrophysiologist has suggested a port and that I start off getting IV fluids once a month increasing as needed. FYI- we have test results that I have really low blood volume and more conservative measures have not helped, if anything I am only getting worse.

[Chaos]

I have gotten them and they made a big difference. I was getting them 3 x a week however. For me, the benefits lasted 24-36 hours. If you get a port, I would think you would be getting them daily to make it worthwhile. There is a significant infection risk with a port so my docs have discouraged me from getting one, but I also have ok veins for the most part. You would have to weigh the various risks and benefits in your particular case.

There have been some other discussions on this topic fairly recently on here. I know one person has a port and does daily infusions and it sounded like it totally changed her life around. Hopefully she'll jump in here. You can also search the site perhaps and find them.

[trice125]

Thanks Chaos. I raised my concern about infection risk to my doctor and he told me that the risk is there but it's more risky to no do anything. I have an consult appointment with a general surgeon that I've seen in the past and my doctor told me that I can talk in detail with him about the risks/benefits of getting a port which I plan to do.

[CarrieJessica]

I have a port and receive 6 to 8 liters of saline a week and 2 of them are infused with vitamins.

I went in thinking IV therapy would be the fix it button, it hasn't been. I will say I pass out less frequently and that in itself keeps me doing IV therapy but I am still fatigued, have an irregular heart rate, tachy and bradycardia, gastroparesis etc.. I think if you have had IV therapy and it works for you a port is the way to go for the long term. I wish I had been more realistic with my expectations.

Here is a blog post from my first week with my port. http://justmildlymedicated.com/injectable-power-port-for-iv-therapy-to-treat-dysautonomia/

and a follow up a month in http://justmildlymedicated.com/injectable-power-port-to-treat-dysautonomia-the-first-month/

[Dustbunni]

I also have a chest port and get 1 liter of fluid daily. It has been wonderful for me. I think I've reached my "new" baseline with it. I can say my orthostatic symptoms are significantly improved. I can be upright again! My temperature regulation is the closest to normal I can remember (it's been a long time since "normal"). My brain fog is so much better. I still have heart irregularities, though my heart rate spikes when upright are not nearly as drastic now. I have to mention that I have issues with energy production (carnitine deficiency and possible mitochondrial issue) and that plays a huge part in how I feel each day. The IV fluids don't really fix this. However, the fluids work miracles in my recovery time. If it would have taken a week for my muscles to recover from overexertion before, I can usually recover in a day or two now. Best, even when I feel like a low-energy slug, I don't feel ridiculously flu-like sick on top of that. Hopefully, with some gradually increasing physical activity and exercise I can rebuild some muscle strength and improve further.

Personally, I need the IV fluids every single day to be effective. At least for now. When we tried every-other day, it didn't end well. I plug myself into the fluids for 4 hours each morning right after I get up. By the afternoon of the day I skip fluids, I'll start noticeably declining. By the evening I'm back to being curled up in bed responding to, "How are you?" with "I think I'm dying." The next morning when I get the IV fluids again, I immediately begin to improve. However, my improvement didn't fully happen the first day I started IV saline, it happened over many weeks. When I don't take the fluid daily, I lose blood volume and have to start the fluids with a deficit again. It takes a couple days until I feel like I've recovered from missing that 1 day of fluid.

I have horrible, tiny veins and I estimate IV sticks have about a 25-30% success rate with me. I've lost count of the number of golf-ball sized blown veins I've had with IV sticks. I've thought about this and even if I miraculously recover completely tomorrow, I think I want to keep the port for a while. Just in case I need an IV for any reason... LOL Now that it's healed, I frequently completely forget it's there, even when the needle is in. (The trick there is a smaller profile huber needle and careful positioning of the appropriate gauze from the dressing kit under the needle's wings to prevent it from rocking to the side with movement. Then make sure the Tegaderm dressing is relatively taut over the needle.)

Of course, there are downsides as well. Most of the medical risks once the port is in place can be avoided by using sterile, proper techniques when using the port. The other biggy is physical appearance. The elevated area where it is implanted can be noticeable, obviously more so if the port is accessed. How noticeable will largely depend on the location it's implanted and your weight. Also you'll have 2 scars from the procedure. I have a couple scarfs to hide the area for when I actually care if it's hidden or not - mostly I don't care. Oh and even if you are not using the port, you will have to access it once a month to flush the line.

Hope this helps and good luck!

[trice125]

I see the surgeon in the morning to discuss getting the port. Are there any particular questions I should ask him?