Many people have asked me how and why my cardio decided to do IV fluid therapy. I will preface this with I have a very specific set of circumstances so what works and doesn't work for me will not be the same as for others.
We have known for as long as I have had Dysautonomia symptoms that IV fluids made a huge difference. When I first fainted during my hospital admission in July the doctors immediately upped my fluid rate from 100ml/hour to 150ml/hour during the day and I had no more issues. Furthermore any time I have been put on IV fluids my heart rate stabilizes and doesn't jump when I stand. During my hospital admission in November I was actually kept an extra night for fluids because my body just couldn't seem to wean off them. In the recent months I have been in the ER about every other week for fluids. So while I never did a trial run like some people have ask, we knew IV fluids would help me.
Fluids was not the first treatment option I tried and is not the only treatment I am currently receiving. I start with midodrine, which clogged my feeding tube twice. After the second time it clogged my tube we stopped it. We have since added it as needed when I feel good enough to take it orally. This medication also just helped a bit, not enough. Next we tried Florinef, which has also helped but even after I had seemed to max out of benefits I was still fainting. Finally my cardio wanted to try epogen, which has a fantastic success rate but my insurance wouldn't cover.
I also have my feeding tube running 24/7 with pedialyte or formula. That plus my oral intake equals almost 4 liters of fluid a day!
IV fluids are not ideal. I am quickly losing veins and my cardiologist is totally against ports so I am not just what we will do next which is scary. It also means going to an infusion center once a week and not leaving Philly for more than a week at a time. IV fluids definitely should not be used as the first line of treatment.
This blog post will be part of a series on my experiences with IV fluid therapy since I have been asked about it so much. If you have a question or topic you would like me to discuss please comment!
On an unrelated note, today marks 2 years since my right hip surgery! Since it is doing so well I did not think I needed to make a separate post to update on my hip.
We have known for as long as I have had Dysautonomia symptoms that IV fluids made a huge difference. When I first fainted during my hospital admission in July the doctors immediately upped my fluid rate from 100ml/hour to 150ml/hour during the day and I had no more issues. Furthermore any time I have been put on IV fluids my heart rate stabilizes and doesn't jump when I stand. During my hospital admission in November I was actually kept an extra night for fluids because my body just couldn't seem to wean off them. In the recent months I have been in the ER about every other week for fluids. So while I never did a trial run like some people have ask, we knew IV fluids would help me.
Fluids was not the first treatment option I tried and is not the only treatment I am currently receiving. I start with midodrine, which clogged my feeding tube twice. After the second time it clogged my tube we stopped it. We have since added it as needed when I feel good enough to take it orally. This medication also just helped a bit, not enough. Next we tried Florinef, which has also helped but even after I had seemed to max out of benefits I was still fainting. Finally my cardio wanted to try epogen, which has a fantastic success rate but my insurance wouldn't cover.
I also have my feeding tube running 24/7 with pedialyte or formula. That plus my oral intake equals almost 4 liters of fluid a day!
IV fluids are not ideal. I am quickly losing veins and my cardiologist is totally against ports so I am not just what we will do next which is scary. It also means going to an infusion center once a week and not leaving Philly for more than a week at a time. IV fluids definitely should not be used as the first line of treatment.
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| At my 1st infusion! Quite the upgrade from the ER! |
This blog post will be part of a series on my experiences with IV fluid therapy since I have been asked about it so much. If you have a question or topic you would like me to discuss please comment!
On an unrelated note, today marks 2 years since my right hip surgery! Since it is doing so well I did not think I needed to make a separate post to update on my hip.
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