Fiercely Independent Pam

Tag: Invisible diseases

  • Home Again and it Feels So Good!

    Success! I’ve been home for almost 48 hours, which these days is a record for me! I am absolutely exhausted but getting back into a routine and good sleep are helping. The true test will be tomorrow when I resume my technology offerings here in my community.

    I find routine the number one thing I can do to stay healthy and on track. I try to get to bed around the same time each night, an early 9ish and get up around 6:30 or so. Sometimes I need to go back to bed in the morning and restart again, but I try to stay out of my bed during the day.

    One of the greatest purchases I have made for the purpose of good sleep habits at home is my light/fan fixture. It’s an enclosed ceiling fan and led light combination. I have several light modes such as night, casual, reading, and work. In the morning I usually set it for work, which is quite bright, during the day if I need it on, I set it for casual. While getting ready for bed, I set it on night, which helps a lot.

    Other things that help set the mood include blue blocking readers (I use during the day as well as getting ready for bed). Trying to stay off my phone(this one is hard) and using audio books or meditations to listen to that help me fall asleep. I’ve been doing better about not waking up in the middle of the night and being so awake that I try to get things done. Usually, I am able to simply go to the bathroom and hop back in bed.

    Being home means that I am able to complete tasks and errands like grocery shopping, prescription pick up, and just grabbing a snack or drink. It’s a sense of independence and freedom that you never feel in the hospital. I long for independence and being restricted means I get more frustrated easier. How do you deal with frustration? What works for you to stay calm and collected the whole time you are hospitalized?

  • Finally, Good News- Shunt Updates…

    Well, previously I posted about my shunt/IIH/high pressure symptoms and issues. I had to wait a week to get the lumbar puncture (LP) done because of being on blood thinners and dealing with the weekend. Interventional radiology (IR) performed the LP on Tuesday and the opening pressure was indeed high. I knew it was! Also, they found high levels of protein in the spinal fluid (CSF).

    My local neurosurgeon was in this morning and developed a plan. The shunt is going to be readjusted to a lower setting so it drains more and go back on diamox (ick!). I need to follow up with ophthalmology asap and setup a new ct and appointment with neurosurgery.

    Not sure what is happening about the high protein levels, but it might just be an incidental finding, although I’ve had it before. I am just beyond ecstatic that the shunt doesn’t have to be replaced at this time. I really couldn’t wrap my head around another surgery at this point and/or the impact it would have on my hairstyle!

    Now I just wait… for neurosurgery to readjust my shunt, which can be done bedside with a cool magnet thingy, and for the final word on discharge. I am so looking forward to being home and in my community. I have more follow up appointments than I’d like, but that okay by mean if it means I can sleep in my own bed and do my “thing.”

    My bed at home, waiting for me!

  • Shunt troubles or just fear?

    So I have been both blessed and cursed with a VP shunt. Since 2021, I have had a codman certias shunt that drains excess spinal fluid from my brain to my abdomen area. It is adjustable by a specialized magnet and can be great or act up at times. There is a constant risk of severe infections and simply malfunctions. It is hard to evaluate either of these complications, as usually, a lumbar puncture is required. If you’ve ever had a LP, or spinal tap, you know that it’s definitely not the easiest and can be quite painful and definitely stressful. I am not sure how many I have done, but it is at least 35!

    In my world, I have an extra complication of needing to be on blood thinners, currently warfarin and Plavix. Doctors tend to panic and require you to be off of these for a good 5 days before they will attempt. This creates a hostage situation requiring patience and support when your hospital stay is extended this long.

    Then comes that actual procedure, this time it will be done by Interventional Radiology or IR. I have found this unique group of doctors to be highly undervalued and they do not get the credit these deserve. IR doctors often are able to fix things or get information that other’s can’t and in a matter that is neither a panic nor a dragged out ordeal. Their staff members tend to be pretty knowledgeable as well. I’ll spare you the nitty gritty parts of the process, but sometimes its easy and not too painful, and other times I have been left in so much pain, I required another procedure to place a “blood patch.” I’ve been told my anatomy doesn’t make it easy for anyone to be super successful.

    I’m currently dealing with symptoms, of high pressure. This means an intense headache that comes out of nowhere and gets worse when coughing or bending over. Rest helps, but mornings tend to be bad. I also have eye pain and vision issues. Then there is the super brain fog issues- not being able to remember things, especially names of common items like medications or procedures. It’s more of problem for me right now than usual. The lumbar puncture will determine if my pressure is high (and how high) which will help determine if the shunt needs to be adjusted. The very act of draining fluid also allows for some relief.

    The eye pain/difficulties and headache are also indicators of something called papilledema, which is the swelling of the optic disc, the area where the optic nerve enters the eye. Without treatment , this will lead to permanent vision loss. I have had three different battles with papilledema in one or both eyes. Luckily, most of the damage was reversible. Treatment usually requires high power diuretics, I usually end up on Diamox, which has a lot of side effects. I need to see an ophthalmologist to diagnose the papilldema and judge its severity. Ophthalmologists are hard if not impossible to find in a hospital and bed exams aren’t always the most helpful.

    So for now, I wait, for the lumbar puncture, as well as for help from ophthalmology. I wish there was a spell to lower my INR so that the wait time could be reduced and I could get back to my “regular life”