Recent Hospitalization Due to Fluid Retention

 At the beginning of the month, I got Botox injections in my neck again. I’ve talked about getting it in the past, and how it’s benefited me. I do feel a difference once they give me the injections. My muscles get looser, I’m able to move my head more and I don’t have as much pain as usual. The downside to getting Botox is that I need to get it every three months for it to be effective. Also, for me, my neck gets tight so quickly that it only really lasts about a month.

A few Thursdays ago, I had a video appointment with a nephrologist. Over the past couple of years, I’ve been talking to several different doctors with all types of specialties, trying to figure out why I have so much edema (fluid retention). Most of them have narrowed it down to one problem, low albumin. Here’s a definition of how low albumin causes edema. 

“Proteins in the blood tend to pull water into our blood vessels (acting like a "water magnet"). When the level of protein in the blood is low, water may leave the blood vessels and collect in the tissues. Water in the tissues is called "edema".” I’ve done multiple tests that look at where I might be losing protein, since I eat enough of it and also drink a protein shake a day. There is medication that you can take to help raise it, but I haven’t gotten to the point yet.

One way to shed the water from my tissues and help with edema is to take potassium-sparring diuretics. They are designed to help reduce fluid levels in your body, without causing you to lose potassium, an important nutrient. Although one side effect to going on a diuretic (otherwise known as Lasix) is that it can cause low blood pressure. In fact, many people take it to lower their blood pressure as they cause your blood vessels to relax.

Unfortunately, due to my spinal cord injury, I have low blood pressure. I’m actually on a medication to help raise my blood pressure, so going on Lasix is a huge risk to me. Although the nephrologist that I spoke to said that since I basically tried everything to help get rid of my edema, she would want to see how my body would react to me going on some sort of diuretic. In order to do so, she wanted me to go into the hospital electively and they would be able to monitor me closely while attempting to shed all the fluid in my body using diuretics through an IV.

They happened to have availability a week after my video appointment for me to go in and I would spend at least three days, if not more, to help achieve this. Afterwards, it would almost be like starting fresh, with little to no edema and she could see if I gain it back, how long it takes, and then figure out an action plan from there. I’m excited but nervous at the same; I want it to work, but I don’t know what side effects I’m going to endure. 

**The beginning post was written the day that I went into the hospital, but I never got a chance to post it. Here is an update after being in the hospital.

Upon arriving, I was admitted to a floor that specializes in nephrology. I also met with neurology, cardiology, internal medicine, endocrinology, infectious disease, pulmonology, urology, and the general doctors on the floor. Each doctor looked at different parts of my situation to try to rule out what could be causing the swelling.

As each day was passing, they became closer to narrowing it down to what it wasn’t and what it could be. I spent a total of 12 days in the hospital, more than I expected, but enough for them to narrow the problem down to two reasons. One would involve neurology, and due to one of my seizure meds and the other involve cardiology, and due to a rare condition.

They took me off one of my seizure medications called Depakote and wanted to follow-up with me after a few weeks. This would be to see if it would help with me losing some of the water weight. After being off it for a few days now, I think it’s helped a little bit. I noticed that I’ve been peeing a lot more, which is a sign that I’m losing fluids.

If this doesn’t work, then the only other thing they narrowed it down to is a rare condition called capillary leakage otherwise known as Systemic Capillary Leak Syndrome. It’s when fluids or plasma leaks out of your capillaries into your tissues. It results in low blood pressure and can be dangerous, if not treated. The reason why it’s so rare is because there are not very many known cases of it and there is no known cure.

I’m hoping that it’s just my seizure medication and not the latter. Although since being off the medication, I have seen an improvement in my weight, so that’s a good sign already. I will keep you updated as time goes by.

Jenni