Life Update – Staying Hopeful in the Midst of Uncertainty

I apologize for not posting for a while. I have been going through a lot medically and emotionally as I try to adjust to a change in my life that I did not expect to face.

For those new to Vegan Kitchen Magick, I have something called Congenital Central Hypoventilation Syndrome or CCHS for short. This makes my brain not tell my body to breathe. I can breathe if I think about it, but I don’t breathe deeply enough or often enough if I stop thinking about breathing. So, I have a trach and use a ventilator when sleeping, and a breathing pacemaker when awake. I wanted to be able to pace 24/7 and get my trach out, but my old pacers were making my vocal cords close with every breath. This kept air from getting in or out of my nose or mouth and meant the trach was my only airway when the pacers were on.

So, I had surgery to implant new diaphragm pacers in May. (See New York City – Part 1 and New York City – Part 3 for the details.) The surgery did not go as planned, however, and the left side of the new pacers has never worked. My surgeon initially thought my phrenic nerve had slipped off the electrode, but testing has shown that my left diaphragm is paralyzed. This means that my left phrenic nerve is damaged. It also means that I can no longer be off my ventilator for several hours at a time like I used to be able to do before the surgery. I can use the right side of the pacer by itself, but it means breathing with only my right lung and it is making my vocal cords shut like the last pacers did. I can only tolerate that combination of 50% lung capacity and my vocal cords shutting with each breath for short times.

Before I found out that my left diaphragm is paralyzed, I was trying to be off my vent as usual and that didn’t go well. I fell several times and cut my hand because I was getting so foggy from not getting enough oxygen and from too much carbon dioxide building up in my body. It wasn’t until I had gained 15 pounds of fluid and fell quite badly on some stairs that I realized something was very wrong and had the testing that showed my left phrenic nerve is damaged. The falls were due to the fogginess off my vent and the swelling of my legs was due to the strain on my heart from not breathing enough off the vent. The treatment for both is to stay on my vent 24/7 and that made it hard to be in the kitchen! I have already lost 8 of those 15 pounds of fluid, though, so staying on my vent is really helping.

I was going stir crazy so my mom and I made a cart for my ventilator so I don’t have to stay in my room all day. It is still very hard to be tethered to my vent, but I am getting better at maneuvering the cart with one hand and carrying things with the other! We used a crate, a luggage carrier, and some zip ties to make my vent cart:

In addition to staying on my vent 24/7, I also had to go on a low sodium diet to help get the extra fluid off. That meant figuring out how to adjust my seasoning blends to have very little salt. I will be sharing those new low sodium versions with you very soon, and I hope they will be helpful to others on a sodium restricted diet.

The uncertainty in the title of this post comes from not knowing if the electrode needs to be removed, if my nerve will eventually recover even if nothing is done, or if my nerve will never recover even if the electrode were removed. My doctors are trying to determine what testing can be done to try to figure this out, but the testing may not give us a definitive answer. My hope is that my phrenic nerve will recover fully, and that I will be able to get new pacers that work without making my vocal cords shut. It is only a very faint hope at this point, but it is there. It is really hard, though, to balance the commitment needed to fully adjust to being on my vent 24/7 with the hope of improving so I can get new pacers and not need the vent at all. To cope, this has become my new plan of action:

The past few weeks have been an emotional roller coaster, and I am still hurting from that last fall. I won’t give up, though, and will have lots of new recipe posts coming soon.


2 thoughts on “Life Update – Staying Hopeful in the Midst of Uncertainty”

  1. Gaaaaaaa! What a brave warrior you are and at times I’m sure a worrier. Thank you for opening your life to us Please tell your mom that I think she is awesome too! I for one look forward to mixing up your new magical low sodium mixes. I send armful of sunlight and empathy.

    “Hope is the thing with feathers
    That perches in the soul,
    And sings the tune without the words,
    And never stops at all”
    -Emily Dickinson

    1. Thank you, Hanne! I am really trying hard not to worry! Negative thoughts still pop up, but I remind myself that I am doing everything I can to help myself at this moment and that keeps the time spent worrying to a minimum. I’ll be sure that my mom reads your sweet comment and I should have the low sodium Magickal Seasoning Blend post up tonight!

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