Wednesday, May 15, 2013

Kidney day +16

It’s been 16 days since the transplant and I am so thankful for how well my recovery has been going. I think I took pain meds once after coming home, but really didn’t need it after that. Of course, I have been and am still very sore where the incisions are, but the first few weeks of dialysis were way worse than any pain I have felt since the transplant. Each day, there is something new I can do like stand up straight, sleep on one side, then the other, cough or sneeze without holding a pillow to my stomach, etc.

On the day of surgery, I got to my own room at about 5:00PM and 48 hours later, I was home. Compared to my 12 day hospital stay in Nicaragua in January of 2011, I felt like I was barely even there, especially since the entire time was filled with visits from friends, nurses, doctors, pharmacists, and social workers, all with important, detailed information about life with a transplant. I even left the hospital the day before Amy, my donor, which I think is pretty rare.

Life with a transplant is very different from life with kidney failure. It’s amazing how much a working kidney can change your life. The first thing I noticed was that it looked like I had gotten a tan during surgery! My skin was a few shades darker than it had been on the morning of April 29th. The next (and most major) thing was that I have not vomited (or even felt nauseous) once since the surgery. This was pretty much a daily part of life for me for a few weeks leading up to the transplant, and really it’s just been pretty normal for the last 2 1/2 years,  so it is a very welcome change, to say the least. Before the transplant, whenever I would get hungry, it was more of a hungry-nauseous feeling, frequently followed by vomiting. Last week, I felt hungry for the first time (because I can’t eat breakfast before I do lab work), and I was shocked and excited to remember what it felt like to feel just plain old hungry. Enough about that topic, though – the next thing I noticed was that I was hot (and sometimes even sweaty!) Since we arrived in the States last August, most of my time has been spent in long sleeves and under a blanket. If you’ve spent any time around me since then, you’ve probably heard me say more than once “It’s okay – I’m always cold!” because people always feel bad if I immediately ask for a blanket when I arrive at their house. Since the transplant, I have woken up a few times sweating and I think I am going to have to start wiping down the treadmill at the gym after using it now. Bummer.

Anyway, my most favorite thing (and Chase’s too!) is that RLS (Restless Leg Syndrome) is finally gone! This one took 4 or 5 days to go away, but I can finally go to sleep without kicking Chase 137 times first (or giving up and going to the couch!) A good night of sleep is a glorious thing. Speaking of sleep, I’ve been meaning to ask Amy if she is a morning person and my doctors if it’s possible for this trait to be passed on through a kidney. I have never enjoyed being awake until about 10:00am, but for the past few weeks, I have been waking up at 6:45 feeling wide awake. Sometimes I try to go back to sleep until around 8:00 or so, but it takes me a least 30 minutes to get back to sleep, so I am considering just giving up and officially becoming a morning person.

Since the surgery, I have been getting lab work twice a week and having a Doctor’s appointment once a week. I am currently taking 12 different medications, which works out to be 53 pills per day. Yes, I wrote 53. This number frequently changes though, as my doctors are trying to get the right level of Prograf (one of the immunosuppressants that helps prevent organ rejection), find the right combo of blood pressure meds, which is high from the other medications I am taking, and raise my phosphorous level.

The phosphorous part is actually kind of enjoyable. Before the transplant, my phosphorous was high because my kidneys could not filter out the phosphorous I was eating, so I had to eat about 12 Tums a day, which acted as a Phosphorous binder, allowing it to pass through my system. Once Amy’s kidney moved in, I assume she looked around inside and said “What the heck is all of this? Get to work!” and started frantically cleaning house where my kidneys had been lazy on the job for over two years. In all the fuss, she cleaned out almost all of the phosphorous that had been cluttering up my system for so long. So my doctors have told me “All those foods we’ve been telling you to avoid…we need you to eat all of those right now. You can have all the Dr. Pepper, cheese, and chocolate shakes that you want. You cannot eat enough phosphorous right now.” Thus, I also take 6 Phosphorous pills a day. While Chase and I have enjoyed an excuse to eat queso for an entire meal or the necessity to pull out the large bag of chocolates each afternoon, I am really in quite the predicament. You see, I have to eat all of these incredibly unhealthy foods in large quantities, I am on house arrest and cannot work out, and I am no longer throwing up. I really don’t want to gain back those 30 pounds that the kidney diet (aka lack of appetite) helped me lose, so I’m praying that my phosphorous stores replenish soon so I can get back to normal eating habits!

As for house arrest, it has not been as bad as I feared. Chase bought a puzzle, which he, my mom and I finished in week 1. I’ve also read 2 books so far and become addicted to the show Prison Break. Plus, due to the incredible generosity of people who have brought us meals, bought me gifts for the hospital and donated to our transplant fund, I have about 60 thank you notes to write, so that has been keeping me busy. And I’ve probably enjoyed a game or two of Sudoku. Besides these things, I have been busy doing my “new kidney homework”: taking my blood pressure, weighing myself, taking my temperature, making sure I’m drinking 3 liters of fluid per day, keeping track of my output, getting lab work done, eating chocolate, calling the transplant coordinator to discuss meds, going to the doctor, drinking a lot of Dr. Pepper, napping (due to one of my blood pressure meds that causes my eyes to close almost immediately), eating more protein and a little less potassium, and more recently walking a few miles a day to ward off the unwanted 30 pounds.

Since I’m in week 3, I’ve graduated from complete house arrest to being able to go to non-busy, non-crowded public places. So after going to the gym (and walking very slowly on the treadmill so it wouldn’t be classified as exercise since I’m not technically cleared for that yet), Chase and I went to the donut shop. Ironic, but necessary, sort of. (Donuts are also high phosphorous.) I can’t drive until week 4 though so I think I will celebrate that by making a trip to Target at 11 on a Thursday or something (to avoid the crowd).

Well, this is not a short blog post, and I applaud you for making it this far. I hope I didn’t bore you with post-kidney transplant details. If you have been praying for me – thank you. God has heard and answered your prayers and mine, as the surgery and recovery have both been very smooth for me, and for my donor Amy. I will never forget the kindness we have been shown by hundreds of people from the day I found out my kidneys were failing all the way up until the transplant and after. God has never left us. He is faithful and good and has been at work through you and in me throughout the entire process. I hope that you are praising Him with us for who He is and all that He has done.

4 comments:

  1. I really liked hearing all these details of post-transplant life! I think it is hilarious that you were able to eat queso for an entire meal, if that is indeed true. Also, Chris and I just finished off a bag of dark chocolate we bought for ourselves that has nothing to do with a need for phosphorous. :p

    I'm excited you've been able to feel normal and do those deliciously normal things lately (like sleeping on whatever side you feel like). It reminds be to be thankful for them, too!

    Love you guys! Miss you, too!

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  2. i enjoyed all the details! miss you lots!

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  3. So excited and praising God with you for His faithfulness! We are continuing to pray for you guys- thank you for posting and keeping us updated on how you're doing :)

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  4. so awesome julie...I also enjoyed reading all of your details...praying for continued victory with your new kidney...

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