I started my blog out faithfully updating my 2013 Flashback: Road to my Kidney Transplant, and got sidetracted with too much deliciousness to share! I have really loved sharing all my craving creations with you and always love your comments! Thank you for all your love and support! Now, let’s get personal!
To catch up on previous chapters, click here.
June 2013 Flashback
In June 2013, my older brother, Spencer, came to visit San Diego after graduating medical School – Congratulations Spencer! At this point in June 2013, with Stage 5 Kidney Disease, I was in no position to fly to his graduation across the country so I was grateful we could celebrate in San Diego!
We celebrated by having more fun in Coronado! (an island in San Diego)
Enjoying the beach…
Riding our bikes with our pups to dog beach and around town…
Going out to eat…
And paddle boarding to the Coronado bridge
We love Coronado! And even though my legs were crazy swollen, it couldn’t stop me from going! When Patrick and I had played in Coronado the previous month, I could prevent severe swelling in my legs (due to my kidney failure) by keeping them elevated whenever possible – I propped them up on the couch, on towels at dog beach, on the neighboring chair at restaurants, etc. This time, however, they were swollen no matter what I did!
During my regular workweek, if I started the day wearing flared jeans (the only ones that still fit over my extra water weight) they would slowly mutate into skinny jeans as my legs swelled throughout the day to the point of completely filling out my flared jean hem! Even though swelling had become my new normal, I was still in awe every night after prying my jeans off. Often I’d exclaim to Patrick, “Check this out!” as I stood gawking at my ballooned legs, still shocked that they were my own. Jeans finally became so uncomfortable that I gave them up completely and invested in a rainbow of long skirts. My feet also became so permanently swollen, that I had to give up wearing all of my shoes except the only pair that would still fit (out of many 🙂), a silver pair of sandals.
During the day, I was able to ignore the appearance of my legs and feet because they were mostly concealed beneath my long skirts. But apparently my feet were still noticeable to others (a surprise to me because I never pay attention to people’s feet!) as I was questioned at the hospital, at the grocery store and in the elevator at work, “What happened to your feet?!” Wide eyes would blink in surprise as I would explained I was in renal failure and waiting for a kidney transplant. These questions never bothered me but were a reminder of how little we really know about the stranger or friend standing next to us and how readily we are to pass judgments.
As Mother Teresa said, “If you judge someone, you have no time to love the.” And as one of my favorite quotes that I’ve shared before reminds us, ”Treat everyone as if they are in serious trouble, and you will be right more than half the time.” (Henry B. Eyring) I try and remember these quotes in my daily life because everyone I meet is in need of and deserves my understanding heart and uplifting words.
As my kidney function continued to plummet, so did my energy. I started going to work less and working from home more and on rare occasion, I would stay in bed almost the entire day. I learned I was severely anemic (anemia in woman is hemoglobin less than 12, I was in the 7s) and started receiving EPO (Erythropoietin) shots. EPO is a hormone made in the kidneys that helps make red blood cells. When a person has chronic kidney disease, their cells that usually make EPO become damaged and therefore little or no red blood cells are produced, leading to anemia. I didn’t seem to notice a difference with the EPO shots, but I was told it would take some time.
Kidney Transplant Update
In mid June, after waiting weeks after all my testing had been completed to be listed for a kidney transplant, I finally received the exciting news that I had officially been listed for a kidney transplant! This meant my mom could begin her testing to become a donor. Although my mom and sister, Kimberly, were both my same blood type, my mom wanted to be the first donor because she surmised that in 15 years or so when I would need another kidney transplant (average lifespan of a kidney transplant), Kimberly would still be young enough to donate. Kim, however, said she was more than happy to donate now because in 15 years, her kids would be able to donate. LOL! Little do my nieces and nephews know they have been volunteered! I need to start giving them more gifts :)! I feel so blessed to have both a mother and sister “fighting” over who would donate their kidney to me! Incredible, selfless women.
Later in June 2013, I was honored to speak at a church young woman’s camp whose camp theme was “Home Run to Heaven,” and my subtheme was “Team Unity.” I emphasized loving and supporting each other using a variety of adorable animal pictures of unlikely friends.
The week after speaking at the the girl’s camp, an emergency laparoscopic appendectomy culminated my month of June.
It was around 6:30 pm when piercing pain began stabbing my lower abdomen. I thought maybe I had food poisoning and it would go away in time. Over three hours later, I was doubled over on top of our bed with clenched fists pushing into my stomach. The intermittent pain would strike in sharp, engulfing bursts, so excruciating I had to pant through them.
Patrick repeatedly pleaded, “This isn’t normal, let me take you in.”
I insisted I was fine. Finally at 2:30 a.m., I woke Patrick and said, “Okay, let’s go.”
“Finally!” he exclaimed. He made it to the hospital in record time.
The doctors weren’t 100% sure I had appendicitis, so I had 2 choices: First, I had the option of having my appendix removed and being placed on strong medications and anesthesia that could potentially deliver the last blow to my kidneys and require immediate or near future dialysis. (We had been trying to avoid dialysis completely because: a) statistics show kidney transplants last years longer on recipients who were never on dialysis and b) dialysis would require a port which was a potential source for infection because I was already immune suppressed). My second option was to not remove my appendix immediately and continue with further, more conclusive testing to identify the cause of the pain. This was risky, however, because if it was appendicitis, the appendix would eventually burst, spilling bacteria into my abdominal cavity that could be fatal, especially because I was immune-suppressed (due to my double lung transplant in 1999 due to cystic fibrosis).
We decided to risk damaging the kidneys and to remove my appendix. I was to go into emergency surgery. The surgery was to be done laparoscopically, meaning 3-4 small incisions would be made in my abdomen (about 1/2”-1 1/2” each) in which a miniature camera and surgical instruments would be inserted (instead of one larger incision). I already boasted 4 quarter size chest tube holes (2 on each side), and my long incision from my lung transplant, and now with the imminent addition of 3-4 more holes, I was beginning to look like a pin cushion! (a GRATEFUL pin cushion, I might add! Bring on the needles!)
As I met with the nurses and anesthesiologist, they questioned why my face was so swollen?! I had learned the extra fluid in my body (that my kidneys weren’t able to flush out) followed gravity. In fact, I had become accustomed to sleeping practically upright so the fluid would collect in my stomach and not my face, particularly my eyelids, in order to be presentable the next day. One time I accidentally slipped from my sitting sleeping position to my side and the next morning the side of my face I slept on was so swollen I could barely open my eye. After having spent much of the previous night in the fetal position, fluid had collected in my face. I am pretty sure I looked about as bad as I felt!
With the briefing behind me, the nurse began rolling my gurney out of the pre-op room and away from my family. As we exchanged “good bye” “I love you’s,” it was immediately reminiscent of almost 14 years earlier when I was rolled away to receive my double lung transplant. My family again right by my side, exchanging words of love that were too limited for the feelings of the heart.
I didn’t feel great peace but I also didn’t feel great fear. More often than not in life, we just have to move forward in faith. As Jeffrey R. Holland said of faith, “When those moments come and issues surface, the resolution of which is not immediately forthcoming, hold fast to what you already know and stand strong until additional knowledge comes.” And it always comes.
After my surgery, I was relieved to find Patrick by my side…and no dialysis machine! The surgeon reported that everything went well and in addition to removing my appendix (they confirmed I did have appendicitis), they removed 1 1/2 liters of fluid from my stomach; the fluid had just been hanging out with nowhere else to go…1 1/2 liters!
I was supposed to speak in church that Sunday and so before surgery, I had asked Patrick not to cancel my talk yet. After uttering a few words post surgery, however, my voice was so hoarse from intubation that I knew I was going to have to cancel…again (but thankfully this time, unlike last time, the reason wasn’t almost fatal!). I was beginning to feel very unreliable!
The timing of my appendicitis proved to be a another tender mercy because my new kidney was to be placed directly in front of where my appendix had been (kidney transplants are placed in the front right lower abdomen area). Had I experienced appendicitis after my transplant, the pain could have been confused as rejection or a number of other complications. In addition, removing the appendix would have been more difficult and probably more painful, because the surgeon would have to maneuver around the new kidney (or move it) or come at the appendix from a completely different angle. And who wants to deal with having their appendix out after having a kidney transplant?! The appendectomy was my “dry run” for my kidney transplant surgery and allowed me to not be apprehensive at all about the kidney surgery.
I am always amazed how everything seems to “unfold” according to God’s plan. We may not understand the “whys” and “hows” in life, but He does, and to me, that’s all that matters! Because of my faith and trust in Him, I am able to live by Joseph B Wirthlin’s motto:
Thanks for joining me on my journey!