August 18, 2020
author
Mike McGregor - Founder of Janesi Comfort
Patient age
31-50
Author age
31-50
Instagram/Facebook Handle

Cirrhotic Liver Failure

1st thing I wish I had known

Janesi Comfort was conceived during a hospitalization. I was longing for a way to provide comfort for my loved one. The thing about illness is that there are universal truths that bridge all patients but there are also an infinite amount of situational peculiarities that make each case unique. We started this forum to give both patients and their loved ones a place to share their earned knowledge. Some are large truths that apply universally and others will be very specific to certain ailments. We hope you can find a few nuggets of truth and also see that you are not alone regardless of how scary or manageable the road ahead may prove.
I will go first.
I wish I knew it could be a long long haul without reprieve. Jolene got sick one morning with a distended stomach and we went to the hospital. That morning I had no clue that both her ALT and AST liver numbers would come back exceedingly high and that we were going to be in a hospital for two straight months. As a spouse my first reaction to this was “What can I do to make her life here better” followed by "what do we do to get her out" and there was not an answer to either. I always thought she would be getting out soon and thus didn't prioritize the little things. In hind sight those little things could have really added up. I created Janesi Comfort after this experience to solve one of those little problems for others.

2nd thing I wish I had known

Hepatic Encephalopathy comes on slowly but incessantly. When your liver cannot process toxins they go back in your blood and eventually make it to your brain. Everyone's thoughts get confused and fuzzy. For Jo it happened over the course of weeks so a once razor sharp person got progressively more confused and struggled to process basic thoughts. A month in focusing on where we were and what we needed to do was a struggle. The doctors said these symptoms likely would have retreated if she had been able to make it to her transplant. In hindsight I would have had more pointed important conversations earlier after diagnosis.

3rd thing I wish I had known (plus any bonus thoughts)

It is in a hospitals best interest to have happy patients and thus they generally make personal accommodations as long as they don't get in the way. One of the only physical things that patients can really control in this setting is the material on their skin. I realize that this seams obvious coming from someone who owns a hospital robe company but it is important to know why I got here. I likely don't need to convince you that hospitals are horrible. Everything about them is about efficiency in the name of getting the most people healed which is good. The problem is that efficiency does not jive with personality. Looking back, the one thing that could have put a consistent smile on Jo's face would have been to be able to rub up against a fabric that possesses the same light silky feeling our daughter's hair gave off while watching a family movie in her lap. Something familiar and comfortable. It would have mattered.

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