Checking Back in After My Long Hospitalizations

Wow, I've lost count of the days. Somewhere around 45-50 I realized that, gee, I had been hospitalized for a long time. I didn't even know hospitals kept you that long anymore; then just about that time that my reality became clear, I got transferred to another hospital which focused on rehab and short-term IV care. Then finally -- and I mean finally -- I went home. October is about to begin. When I entered the hospitals we were in August.

A lot can change in this amount of time. My little puppy Bailey who came to visit me at the rehab hospital this past week didn't even recognize me. It took her a while to realize that I was Mom and she was mine and then it sunk in and then she went wild with recognition and excitement.

The one thing I can confidently express is that everyone should have something or someone to love -- I'm a big believer in pets and even learned a lot about pet therapy as I was fortunate to be hospitalized in a place that offered such services several times a week as well as music therapy. The volunteer services at UCLA Santa Monica are top notch.

I was hospitalized initially because my HIV doctor and I had decided to place a g-tube so that I would be able to crush and deliver my HIV drugs enterally and we would get both guaranteed compliance and a good delivery system. However, the g-tube got infected and then I had many complications including numerous drug reactions and rashes and fevers. Finally my digestive system stopped working. I was unable to digest anything properly and had to go on total parenteral nutrition, also known as TPN.

It was a long haul and I'm still not done yet with complications but my new HIV regimen is working and we can tell that because my platelets have increased significantly. It's nice to know that somewhere something is working even though we haven't yet run the regular tests like CD4 or viral load; for once I'm not really expecting any surprises and am trying to just deal with the side effects.

I have to say that my bad memory has not failed me and most of my hospitalization has been an absolute blur. There was one point, however, that I was really sick. My fevers were high, my pain was intense and I was doped and hallucinating. It was scary and probably the first time in my HIV "career" that I was truly afraid that I wasn't gonna get better. That feeling will probably never leave me. I have been affected for life by that scare.

However, all the professionals I met went above and beyond the call of duty and I have a newfound respect for what used to be my profession. Everyone throughout my hospital stays came to know my story and we had open dialogues about HIV, AIDS, transmission, prevention; and many even reminded me that I used to be an R.N. There was a level of respect I was given and I don't remember getting that before as a patient. I chalked it up to my extensive stays and the fact that my nurses, CNAs, rehab therapists and physicians somehow got to know me better as a person, as a professional, as a mother, as a wife and as a retired healthcare worker.

It's scary being that sick and a little bit Pollyanna-ish to come out of it, spend a total of approximately 50 days in facilities and expect your body to just bounce back to normal. It's a process, a journey, one that really can't be rushed. One that knows its own timeline. Psychologically it helps to have a bright can-do attitude and to trust the process and learn to be less anxious. It's a holistic approach that works best and allows both your body and mind to heal. If the members of your team can't be on board with optimism and creative strategic thinking then it's time to supplement your team or even switch them out.

I realized that we only get one life -- one pass through -- and God, it has to count. I've spent a lot of time wasting, worrying, complaining and circumventing my own healthcare. It's got to stop and I need to live as best as I can -- yes accepting my limitations, but working with my providers to ease the remaining burdens and struggles in recovery I may face.

The rehab therapist taught me a breathing statement that I think I'll apply to my life. Breathe in the roses and blow out the candles. Dance when you get the chance. The truth is, it could be too late; don't let them count you out just yet. Fight for your life and fight for your recovery. I think in the end you'll find it worth it. I know I did and I'm glad to be back.

Until next time,
Lynda