And now... we wait.


Well, the transplant testing is now complete!  I am officially listed!  And now...we wait.


Mike and I enjoyed a celebration dinner last night. Sushi, of course. Post-transplant, I'll have to avoid sushi and buffets. Sushi is my favorite food, so I'm filling up on tuna nigiri while I can. 

Now that I'm listed, they'll start testing my living donor. Mike goes in for his blood work on Monday, so they haven't wasted any time getting him started.  They estimate that his testing will take 4-6 weeks.  They also told me 4-6 weeks, and I started in mid-April. The entire process for me wrapped up yesterday, so that was more like 10 1/2 weeks. Therefore, I'm taking the time estimate that they gave him with a grain of salt. 

If Mike is the donor, we'll have the luxury of scheduling the surgery. That would allow me to prepare for a long-term sub at work and consider recovery time.  Of course, it's still possible that I could be offered a cadaver kidney anytime in the process. The phone could ring any moment!  Right now, there are just so many unknowns. 

Last week, I got a call to come in and see the endocrinologist. My mom and I went to see the doctor, where we discussed my history of weight management. They gave me some nutritional advice and prescribed a medication to help supress my appetite. Even though I've had weight issues my entire life, they did have some new information for me. 

These are some of the highlights:
- There's no such thing as a fat-burner or metabolism-booster. For real. And he encouraged me to stay away from "Susie who sells Plexus from her trunk." Essentially, it's all a sham. 
- Surprisingly, he prefers the free My Fitness Pal app for tracking over programs like Weight Watchers. The reason?  Because WW "hides" the nutrition in Points. So I had no idea how many carbs, fat, and protein I was eating everyday. With My Fitness Pal, you can easily see the macronutrients so you can make wise choices using consistent vocabulary. 
- He wants me to eat 1000-1200 calories a day (closer to 1000 since I get about 200 calories from dialysis). Of that, 30% should come from protein, 35% from carbs, and 35% from fat. Now that I've been tracking for a week, I realize that I wasn't getting nearly enough protein. For "normal folks," he recommends 30% carbs, 35% protein, and 35% fat, but since my kidneys don't function well, he wants me to avoid too much protein. 
- The medication he prescribed is CRAZY expensive. Like $1200 a month, not covered by insurance expensive.  He gave me a three-week supply.  This injection medication is supposed to replicate the protein released by our bodies to signal to our brains that we're full.  I used the sample for a week, and it definitely worked.  I felt super-full all the time. However, I also couldn't keep any food down, and I got weak, light-headed, nauseous, and dizzy. My blood pressure also started falling too low, making the symptoms worse. In the end, I decided to discontinue the medication and rely on the calorie restrictions and tracking.
- I also learned that, when eating a meal, they recommend that you eat protein first, then veggies, and end with carbs. This is so your blood sugar rises more gradually. Interesting!
- Always, always eat at a table. Not standing or sitting in front of the couch or computer. No more working lunches!
- I need to add at least three 30-minute strength-training workouts a week. Kidney failure causes muscle wasting, and I've lost some muscle over the years. I need to rebuild a bit more of that. Mike's been a HUGE help with this, especially with the Beachbody online workouts we've been doing. 21DayFix is no joke!
- He wants me to get my steps in each day, which is much easier when I'm working. The dogs and I have been going for walks each evening at sundown. It's helping me get my steps in, and it's mentally cleansing. Plus, by sunset, the stupid Texas heat is taking a break.

Overall, it was a great visit. I've realized that I have quite a few issues and negative emotions surrounding food, so I decided that - along with the diet and exercise plans - I'll work with my therapist on how I often misdirect my emotional hunger for physical hunger.  I'm spending a lot of time journaling and reflecting, trying to shift my perspective. My therapist recommended an awesome book called Eating in the Light of the Moon. It's helping me evaluate the relationship I have with diet and exercise.

Other than that, I'm just chilling and relaxing...reading and enjoying my summer. I'm so grateful to have the time to back away from work so I can withdraw into my introvert shell, do some reflection, and build strength. This journey moves in fits and starts, so now that the first stage, testing, is complete, I have time to take a breather and get my mind and body right before starting the next round. 

Thank you for your continued support and love, and I promise to keep you all updated as we move through the next phase. 

#teamkidney

Comments

Post a Comment

Popular posts from this blog

#kickingsick

Image
The other day during a diversity training at work, we were asked to make a bubble map of all the different groups in which we see ourselves. Among terms like woman, wife, friend, teacher, and childfree was one word that seemed to jump out - sick . The colleague sitting next to me was my shoulder-partner for sharing time.  She looked over my paper, nodding gently as she read each word.  When her eyes fell upon that word, she paused and looked up at me.  "Do you really see yourself this way?"  Her finger hovered over the word. Her expression conveyed gentle curiosity without an ounce of judgment. At that moment, I realized that yes...I do see myself that way. She nodded slowly, and the training continued. Although nothing else was mentioned about that word that day, my mind has been circling around this concept of sickness. For the last thirteen years, a large percentage of my time has been spent diagnosing, treating, and managing chronic illness. At times when I f...
Read more

Catching Up....

I haven't blogged in a while, so it's definitely time to catch up. I just reread my last post, and I can tell that I was NOT in a good place then. I struggled to finish the school year, but with the help of my amazing friends and colleagues, I made it to the finish line. Unfortunately, just a few days after the last day of school, I crashed and burned. The Friday of the last week of school, June 10, I had what I call my "loopy day". Before then, I had had a few little episodes where I would be standing in the kitchen about to give myself insulin or take meds, and I would freeze. It's hard to describe, but it felt like I couldn't separate what was real from fantasy. I couldn't get my body to move. I would feel "stuck". I could usually get myself walking, and it would clear up, but driving was difficult, and I couldn't concentrate or focus on anything. On Friday morning, I got up and got ready for inservice for SIGS, but I was froze...
Read more

Just call me Pollyanna

I suppose I should begin this entry with some clever look back to 2011, or perhaps some insight into all that I've learned about myself in the last year. Or maybe some new resolutions. But that all feels so trite. So, here it is... Jan. 1, 2012... and I do feel that inherent sense of optimism that comes with the new year. But I also feel fear, dread, peace, and hope. It's an interesting blend of emotions. The last few weeks have brought some big changes in my medical journey. I've switched doctors and am taking all of my care to UT Southwestern now. Mike and I are slowly but surely digging our way out of the medical bill mountain, and my journey continues. Last week, I had my long-awaited meeting with the nutritionist at UTSW. It was WONDERFUL. There were a couple of things that became very clear: 1) The first nutritionist I saw almost a year ago was soooo off-base. She had told me to only eat 15 mg. of protein a day, which is darn near impossible. Turns ou...
Read more