Don’t Hold Your Breath!
7:30 am on October 12th was a big day because I had a really informative virtual appointment with my autonomic neurologist about all things not GI related and what to do next.
I had brought up my breathing issues and the new development of my neck swelling which they took action to send me to other specialists to examine this further.
It already states in my diagnostic report that two doctors have a significant suspicion that I have costochondritis on top of my other issues. This was thought to be the culprit of my rib cage inflammation however, after a trial of high dose Ibuprofen leading to no change, results remain inconclusive (more on this in the story, “New Year, New Tubing”). My doctor mentioned to try pressing on my rib cage next time I had a breathing flare to see what happens.
I got a referral to pulmonology- a lung specialist to see what the breathing issues were (appointment is in February).
They also wanted to start me on a new medication since my dysautonomia issues were still disabling and medication didn’t seem to be making much of an impact. I was going to be put on a new medication called “Midodrine” which acted as a ‘full body compression sock’ to help get more blood to my brain. It had an odd dose cycle through the day since I was told to skip doses if I ever ended up laying down because it could raise my blood pressure too much.
I also got a referral to a geneticist to be tested for connective tissue disease since that is what I personally believe is causing these breathing issues (since it’s fluid inflammation in my torso making it hard and painful to breathe).
I was told we’d repeat autonomic testing the following year (since the booking is so far) to redo nerve fiber biopsies to see if my body shows a neuropathy yet.
My autonomic medical team has a strong suspicion that I am part of the small percentage of patients that my neuropathy has not spread to my peripherals yet and is still proximal. The biopsies they do are only 80% sensitive, and we have a lot of hard evidence to point to me having a small fiber neuropathy, but it just can’t be seen yet in this biopsy.
Since all of this inflammation is still so present after so many months to no avail, my doctor proposed a possible treatment I could try called IVIg. IVIg is a relatively new type of IV treatment which stands for IV immunoglobulins. It takes 80 different people’s donated immunoglobulins and has them in one bag to be injected into someone dealing with severe inflammation. Immunoglobulins get rid of inflammation and clearly my own body’s immunoglobulins aren’t doing a great job.
The IVIg, if it works, can “cure” you in the sense that it can teach your body how to make proper immunoglobulins to handle inflammation (that’s why there’s 80 different types, in the hopes that your body takes to one of them). The infusion is for 1-2 years but there is still a chance that it doesn’t work, and the body is unable to learn how to make proper immunoglobulin proteins.
The other challenge with this is that IVIg is really hard to get approved by insurance. Since I don’t have the nerve fiber biopsy to back up the reasoning for needing IVIg to my insurance, I was asked if I wanted the hospital to proceed with this treatment plan and begin building a case to my insurance.
I chose yes.
We are using other testing (inflammation blood tests, etc.) and how much my condition is disabling my life, to make a case to get this approved by my insurance.
Cross our fingers!
On October 13th, I woke up early in preparation for my virtual appointment with my new dietician. As I logged onto the portal for the visit, I received a phone call by the same person who had called me previously asking ‘who had told me that my dietician had left from my care’. I informed them that they did-they called me. They told me they messed up and that my appointment was cancelled for the day and that even though my previous dietician is no longer at the hospital, they are still on my case (since it's something with them being unable to leave my case due to the life-or-death nature of it). I was told the dietician would call the following week-great.
I had begun prepping what I wanted to talk about in my discussion with my dietician which was to ask what the “weight goal” was since I surpassed the initial weight, I was at prior to being sick. I wanted to also see if anything could be done within the TPN formula to help with these “stomach grumblings/pangs” since I had evidence to believe it was because I wasn’t getting enough calories.
My cold/flu/whatever was going on, was still happening and my abdomen was quite upset about it. Because of the large amount of mucus and postnasal drip being “digested”, my abdomen was super swollen, and it felt like a balloon that was about to pop. I constantly felt super full and I’m sure my gastroparesis was hating having so much to digest all the time. Also I had taken a COVID test on the 16th which all came back negative.
On October 18th I had a phone call with my dietician so I could address the questions I had. We decided that it was time to move me from a “weight gaining formula” to a “maintenance formula” for my TPN!! – I had no idea that we weren’t already in maintenance mode, so this felt super celebratory to me.
They also mentioned that with the maintenance formula, it’d be a reduced volume (from 2 liters to 1750mL) and we wanted to try having all lipid bags instead of the switch off since my liver enzymes are no longer looking horrendous.
That news made my week, and I was feeling much more prepared to enter into my appointment with my GI doctor with the news that we were moving to a maintenance mode.
As the big day (my GI appointment) was coming closer (*since being MOVED after I had prepped for it the month prior) I kept preparing my big speech.
I had practiced it over and over again and had even timed it! I knew that this appointment was going to be the day that I turned the tables and got to advocate for my health and my future.
Read what happens in the GI appointment in, “Victory!! On the Same Page!”