Ill with My Frightening Condition, OTC Deficiency

Updated February, 16, 2021

I have been ill and frightened as I’ve suffered an episode of OTC deficiency symptoms in January. Mind you, these can be life threatening. So January has been a blur for me. I’ve been too ill to know what has happened this month. In fact, I think I lost touch with the real world a little before Christmas. So, a while back I did talk about that fact that I have a rare genetic condition called OTC deficiency. I also mentioned that my husband and I had made the decision to have a baby and I am currently eleven weeks pregnant. This was such as happy discovery for us! I am 40, and I didn’t know how easy it would be for someone my age to conceive, but we got lucky on the first try.

And at first, my pregnancy was great. No morning sickness, nothing to complain of at all. For the entire first month or so, I was great. And then around Christmas time, I started not sleeping so well. And I remember Christmas Eve and Christmas Day I was just miserable because I was so tired. Like, fall down tired. And the smell of anything cooking made me sick to my stomach. I suddenly did not want to eat anything at all. All I could seem to stomach was chips and fruit. Ah, the joys of pregnancy right?

I Wasn’t Myself Because I was Ill With OTC Deficiency Symptoms

It got worse. I developed severe insomnia. I couldn’t sleep. I was uncomfortable in my own body. Small moles I had never noticed bothered me, my hair was driving me nuts, the house was freezing no matter how many layers of clothes I put on. I started talking nonsense–literally. My husband patiently listened and consoled, but he was reaching a breaking point too since I was keeping him up all night. I felt utterly alone from morning till night, and I was awake for all of it. I couldn’t do the simplest of tasks–I couldn’t type out a text message, I couldn’t read, I couldn’t even colour.

My mind and body were all over the place, unfocused, confused, and I lost the most basic of abilities. I couldn’t do anything that I could normally do, and I didn’t know why. I felt like I was losing my mind, and to be quite honest I was having fragmenting thoughts. Thoughts that one doesn’t normally have. The next thing I knew I was in hospital, with no idea how I got there but thankful my husband was with me. My genetic condition and the pregnancy did not agree with each other. My blood ammonia spiked a lot, and I had to be admitted to hospital for treatment. I always ate a low protein diet because of this condition (animal based proteins make me want to heave on an average day) and my body had begun to break down its own proteins, making me catabolic.

My local hospital consulted with the specialist team from Toronto General under whose general care I am, and did their best, but I could tell they were out of their league. They got my blood ammonia down, but it was rising again after a few days, and they didn’t know why. I questioned the food being served to me, but the dietician was doing her best (and I think she was out of her league as well even with the dietician from the genetic metablolic team guiding her) and I was upset because the plan had been to discharge me and they were talking about keeping me longer.

Discharged from Hospital but Still Ill with OTC Deficiency Symptoms

And I left there angry, but better, with instructions from my specialist on how to take care of myself at home. Once home, I consulted with my team again, and was assured that everything should be fine now, that I had had a few things going on that likely led to my hospitalization and high blood ammonia levels, and that what had happened to be was the result of a “perfect storm” and would not likely happen again. However, a few days later my husband drove me down to Toronto General because I was not doing well, and I was admitted there with high blood ammonia.

Because we are in the middle of a lockdown (will Covid never end?) I had to stay in the hospital alone. My anxiety was high, I was crying, scared, alone, feeling trapped but I was getting the help I needed. And my doctors were constantly on the phone with me and the internal medicine team whose care I was under while admitted. I was discharged five days later off of all the IV meds (I had three IVs in me pumping in all the meds I needed to bring down my blood ammonia) and with normal blood ammonia with a very strict and confusing plan of care to keep me out of the hospital. My husband has been my nurse, administering meds when needed, making sure I eat because I have been confused about what my plan of care is. It’s much clearer in my mind now, but then, I am finally back to being myself. I can think again. I can read. I can write. I am sleeping normally for the first time in weeks.

I am so very glad to be home. I am so glad I can think clearly, that I can do simple tasks like text a friend, and that I can start living normally again. I felt such despair in the hospital, with all those IVs in me, and the constant blood work they needed from me and I must have kept my husband up on the phone at least two nights because I couldn’t sleep and was afraid and crying and just was a mess. But the more I recovered, the better my mind became and I was able to read and eventually even sleep. Now, at home, I am slowly doing more and more for myself.

Getting Back to Me

Recovery from being ill with OTC deficiency is going well, and I am feeling less vulnerable than I was even yesterday. I feel more in control, more aware, less confused. I’m sure several night’s good sleep has helped with this enormously. I am sure that a normal blood ammonia level for about a week now has also helped with my mental well being. I am sure that being with loved ones has made all the difference. I am slowly getting back to me.

I feel disappointed that I was just getting this blog on a roll when all of this hit. I’m back down to practically no views a day. But I know I can turn this around. I have so much I want to share with you all–on minimalism, on pregnancy, on being a teacher, on self care–I have a freebie library I had been working on that I am ready to launch soon. I had so many ideas I wanted to blog about–all now forgotten in the haze of this this hell that has been January. But you know what? I know I can still do this. I know I can do all those things I had been working on. I am strong, I survived this strange month and my pregnancy is safe and I am well again. I can get this blog back on the map again. This was just a strange de-tour. I had felt confused and hopeless, but hope is always there and she’s fluttering by me now telling me not to give up, not to despair. And I won’t. I’m back. And I’ll do my best to bring you the very best of Tidbits of Care just as I always did.

Questions? Please share in the comments section. I am happy to share more.