One month post-op today… sitting on the couch on a “slow day” with fatigue and dizziness and pain at my incision site… nothing else to do but reflect on the journey so far.
1.When you got public, you REALLY go public
When I found out I was a match for Cheryl in early 2016, I wanted to keep quiet about my donation. I didn’t want attention on myself and I didn’t want people all up in my biz about my health. But after a chat with God and talking it over with Cheryl, we both decided this unique story was the chance to raise awareness about living donation to help the almost 3,000 more people on the waiting list. Since then, we’ve been on FOX 17 and our story has gone international. We were interviewed for a national talk show and I just got word today that a German news magazine wants to interview me. Here’s what it’s about: If just one person overcame their apprehension about donation after hearing/seeing Cheryl’s and my story, then it was worth ugly crying on TV.
2. Build up strength/elasticity before surgery
I did 50 sit ups every day for two weeks before surgery to strengthen my core, but I wish I would have done some extra deep stretching before surgery and specifically strengthened my back. Because my core has been so weak, simple things like sitting up and driving have caused irritation and muscle spasms and pain in my back. Here are some good exercises to try. (consult your doctor first)
3. Emphasize personal needs to all hospital care takers
I personally hate being needy. Whether it’s asking a friend or family member to give me a ride to the airport or telling my server that my fries are cold or asking for more attention from the nurses. I learned that it’s very important to be vocal with your doctors, surgeons, nurses, CNA’s etc about your medical history and your needs. Over the course of 4 days I came in contact with dozens of medical care takers on different shifts. I repeatedly told them about my allergy to Vicodin and my concern for nausea from the anesthesia. Unfortunately, I didn’t think to tell them about my sensitive bowels. In hindsight I would have asked my doctor to give me stool softeners before surgery. The pain meds and anesthesia wreaked havoc on my intestines and it cause blockage and pain for 6 straight days. I also got really itchy from the pain meds and had a bit of a scary overdose on benedryl, so the lesson is that you can’t overshare your medical history or your needs with your caretakers.
4. Moving, breathing, prayer and meditation
Doctors will encourage you to start walking right away… despite the pain. I had so much pain from gas they put in during laparoscopic surgery that I wanted to walk to work it out. I started doing squats in the hallway in the hospital to build my leg strength and “move things along” in my bowels. I recommend doing this with the supervision of a nurse or family member. For someone who is very active, coming to terms with the fatigue has been hard. I think movement and prayer have helped my mental health. Get outside once or twice a day, even if it’s only to go get the mail. Stretches along with deep yoga breathing can help with everything from easing pain, to helping with bowel movements. While laying around all day, it’s easy to forget deep breathing. It feels awkward at first, but keep practicing. While you need to protect your abdomen immediately following surgery, I started lifting 3 pound weights starting 2 weeks post-op. Many of my friends have compared the way I talk about recovery to post-natal recovery. This exercise below is a great way to take baby steps in building strength around week 3. Always, always listen to your body.
5. The kidney pillow is your best friend
While in the hospital the kidney pillow is used as a splint for getting out of bed, coughing, breathing, walking etc. but after I got home, I used it to prop up my side in bed, padding between me and the seat belt, a brace for when my back gets sore and everything in between. I learned to embrace the pillow… even in public when I got stares.
6. Stock up on loose clothing
One month after surgery, my incision site is still sensitive to snug clothing rubbing against my skin. In addition, the bloating has lasted 3-4 weeks. I had 3 loose dresses and a couple of night gowns, but I had to borrow a big t-shirt of my husbands to wear to bed and go out and by new extra large dresses for when I went back to work, let me tell you, work appropriate mumus are hard to find! Positive note: I now have a maternity wardrobe.
7. Document the experience
Not everyone may want to go public like I did, but journaling has been a therapeutic way to process all of the emotions I’ve experienced throughout the process. I’ve felt everything from fear and doubt to joy and inspiration. I cried a lot of happy tears after surgery (thank God my husband is used to my random cries.) Sorry if you have a weak stomach, but below is a look at my abdomen a few days after surgery and one month after surgery.
8. Setting goals helps
I’m on the move all the time, so the scariest thought of the recovery process for me was being stuck inside the house and having my mind rot in front of the TV or aimlessly scrolling through Facebook all day. I set small goals that helped exercise my mind, body and spirit. I got on a routine of reading Jesus Calling each morning and I also read three books while recovering. This made me feel productive while I was stuck inside during a beautiful, hot summer and over my birthday. I also set goals to walk a bit farther every day down my road. I couldn’t walk fast, but I listened to some inspirational music and sang while I walked (sorry neighbors). Singing and walking built up my stamina. Small things like grocery shopping or going to church felt like running a marathon, and I usually needed a day to recover, but it was great to have interactions outside of just my hubby and my TV.
9. Don’t be discouraged by set backs
I’ve been back to work for 2 weeks now and after a full energetic day of work yesterday, I ended up almost fainting in a public place. I had to stay home from work today because the fatigue and headache and dizziness continued and I didn’t feel comfortable driving. Sometimes it’s not always a flat road to recovery. Now and then there will be some bumps. Everyone keeps telling me to “listen to my body.” I’ve learned to start respecting it.
Update on Cheryl: Her new kidney is still working like a charm! She is now able to go out in public without a mask and we will be celebrating with a ‘Second Chance’ dinner party with family and friends in September.