Recovery at Home

Coming Home

Sometimes I just have to marvel at how advanced medical care has become. I was only in the hospital for 3 days before I was discharged to go home. My father picked me up around 3:00 P.M., and with traffic, it took us about 90 minutes to get home. 

Now, because my new kidney was working really well, and my bladder not being used to so much activity (while I was on dialysis, I only drained my bladder 2-3 times a day), I had to go to the bathroom a lot! Starting out, I had to frequent the bathroom every 30-60 minutes. Also, since I had a catheter, until the day of my discharge, my bladder was slow in recognizing that the catheter had been removed. This made holding my pee very difficult at first. All these factors made the 90-minute drive home quite agonizing.

Thankfully, I made it home and to the bathroom before I had an accident. It was not the "welcome home" I wanted as I had to blow past my family to make it to the bathroom in time. Afterwards, the hugging and greetings commenced.

The first major challenge of coming home was sorting out my medications. There were a LOT of medications between anti-rejection drugs, antibiotics, a steroid, insulin, and medications to treat my CIDP symptoms. Plus, with the CIDP running rampant, making my hands and grip quite weak, it was slow going putting the various pills in my pill organizer. I eventually got it done, and as the days progressed, it did get easier.

The second major issue I dealt with (and it's still an issue to this day) was trying to sleep at night. Between becoming a human sauna and feelings of extreme restlessness, it was difficult to fall asleep. Again, it didn't help that my overactive bladder woke me up every hour or so, which required getting out of bed and making the trek to the bathroom.

 

When Recovery is Going Well

For the first week and a half of my recovery I felt great. I had all this newfound energy, I was cheerful, my diet was on track, and I was losing weight. Kristin and I even went on some 45-minute walks here and there. I even felt good enough to cook Christmas Eve dinner (clam chowder, a Johnson family tradition!) and Christmas morning brunch. I also baked Christmas cookies with my oldest daughter.

The family and I had a nice, quiet Christmas. We ate a delicious dinner, had some Christmas cookies for dessert, and then we gathered together to livestream Christmas Eve worship on our TV. Afterwards we opened some presents.

Christmas Day began with the girls opening their presents and stockings from Santa. This was followed by Christmas brunch, playing the new board games that we got as gifts, and having a simple but tasty dinner. Like I said, it was a nice, quiet Christmas.

One of the requirements post-transplants is that I must travel down to UCLA medical Center twice a week for clinic. Being a new patient, I had to arrive by 6 A.M. for labs. The point of these clinical visits is to make sure the new kidney is functioning properly; that there are no signs of rejection or infection; and to adjust medications as needed. 

Thankfully, to this day, I can say that my kidney is working extremely well. So well, in fact, that it has created some other issues with medication side effects.

One other benefit to my recovery is that I am once again working with a physical therapist and an occupational therapist.  The best part, they come to the house! I have high hopes that they will be able to assist me in regaining strength and balance. 

 

When Recovery is Challenging

On Thursday, December 29th, I went to clinic as usual, but I ended up in the ER where I spent most of the day. One of the unfortunate consequences of a new kidney that works a little too well is the fact that it was doing too good of a job of breaking down the phosphorus in my body. One of the reasons I ended up in the ER was because my phosphorus levels were dangerously low. The other factor that caused my sudden trip to the ER was that one of my medications was causing my potassium levels to rise to dangerous levels.  Thankfully, while I was there most of the day, they were able to get my levels stabilized and I got to go home.

Let me back up a little. For the first week and a half, I was feeling great. Then, the medication side effects started to kick in, and they were nasty. One of the medications I am on causes me to become very shaky, especially after I wake up from a nap or from sleeping at night. 

Then there's the steroid. I hate the steroid with the passion of a thousand suns! Unfortunately, I will need to remain on this steroid for the rest of my life. This steroid is just the worst for several reasons. 1) It causes my blood sugar to remain high, which is one of the reasons why I have had to go back on insulin post-transplant. It also doesn't help that, according to the doctor, my new kidney is doing a little too good of a job at breaking down the insulin in my body, which makes the insulin I inject not as effective.

2) The steroid causes me to become a human sauna at night. Yes, the steroid is the culprit behind my discomfort as a human heating pad!

3) The steroid caused me to become restless and agitated. It makes my body feel like it is going through withdrawal symptoms (something I experienced back in the Fall of 2020 when I was on Oxycodone for severe nerve pain). It's hard to describe the sensation, but it feels awful; brought me to tears a few times.

4) This steroid causes psychosis. What I am talking about is a drastic change in my mood. Lately, I have felt sadness, frustration, grief, easily annoyed, and I get snippy with my family. Physically, I'm feeling great, but mentally I am not in a good place right now (don't worry, I don't feel suicidal or the feeling of wanting to hurt myself or others). Thankfully, I asked for a referral to see a psychiatrist, so hopefully UCLA will hook me up with one soon.

Now you know why I hate having to be on this steroid.

The other challenging thing about recovery at this time is that my Neurologist put a hold on my IVIG treatments. It took some effort to get them started back up again, but it has now been 3 weeks since my transplant and I have yet to receive a single treatment. This is frustrating because, each day I grow weaker and more fatigued. As of right now, I'm told that I won't be able to schedule my next infusion until after January 10th.

Recovery at home started out with things going well, but then things took a turn. While my kidney is working well and is healthy, the rest of me is struggling right now. I know I'm only 3 weeks into my recovery, but I would be lying if I didn't admit that I'm currently in despair. This is not how I imagined my recovery would go. 

It just feels like, when one problem is resolved, some other health concern appears. It is very discouraging because I have been working on improving my health since October of 2020. Yet, it seems like every move forward comes with setbacks.  

Yet, I endure this suffering because I know that it will ultimately lead to a better, more fulfilling life. I trust my transplant team to make the necessary adjustments that will help lessen the side effects that are tormenting me right now. I also endure because I know that I have so many people praying for me. I am constantly reminded of their support, which keeps me going, even on really bad days.  I also know that God has got my back and is present with me every step of the journey.