Wednesday, October 7, 2015

September Miracles

Hello, fans!  Sorry it's been so long.  Lots of things have changed and I've been putting off explaining it all.

Last I wrote, I was dreading the possibility of having to do emergency hemodialysis through a central line.  Well, shortly thereafter, I began having pain with breathing. After a few days it got pretty acute, so I went to the ER to make sure it wasn't a heart attack or pulmonary embolism or something. They did several tests and concluded that it was probably an esophageal spasm, so they sent me home.

A few days later, the pain was getting really severe, so I went to my primary care doctor.  He prescribed me some steroids -- I don't remember why -- and told me that if the pain got worse I should go straight to the ER. The pain was increasing even as we left his office, so I just asked Jacob to drive right to the hospital.

At the ER, they were having a busy day, so they stuck me in a triage room. The pain continued to increase until I could barely breathe; I was taking very shallow, quick gasps as I wrapped my arms around Jacob's waist and buried my head in his chest. After more than an hour, they finally gave me something for pain, which ended up not doing much. They tried a couple of different things, and the only one that helped at all was fentanyl.

After an EKG, chest x-rays, blood tests, and more, they decided to admit me overnight. My brother kindly made the hour-and-forty-minute drive up to stay with me so that Mr. T could take Sunbeam home to sleep.

One night turned to eight as the doctors struggled to first diagnose my problem, secondly treat it, and thirdly get my pain under control. Various family members came to see me, some staying overnight, and Sunbeam spent two weekends with grandparents (one with each side) so that Mr. T could spend more time with me. My dad gave me a priesthood blessing, in which he mentioned that there were many miracles yet to come for me. I have already seen that coming true, as follows.



After ruling out basically every other possibility, the doctors concluded that I had a rare infection called uremic pleuritis: basically, my dialysis wasn't adequately cleaning my blood, so the toxicity had created an environment that fostered a bacterial infection of the lining of the lungs. They gave me a course of IV antibiotics and told me that I needed to switch permanently to hemodialysis. They did the surgery to put the central line in, and it went much better than last time. I had two rounds of hemodialysis in the hospital and got added to the regular schedule at the dialysis center beginning the day after I went home.

As much as I had been dreading and trying to avoid the switch, the results have been too beneficial to argue with. I've had a clearer head, felt generally less yucky, had more energy, and lost about 20 lbs. of water weight. Peritoneal dialysis is a better option for many people, but I just happen to have the body type that doesn't perform well under that method.  It's also nice to not have to worry about dialysis when I'm at home: no stress about getting the fluid warmed on time, no worries about finishing errands in time to be home for my exchange, no packing 50 lbs. worth of supplies for a weekend trip. I do have to spend 13 hours a week sitting at the dialysis center, but I can use that time to read, write, do puzzles, or catch up on sleep.

The only real downsides in comparison with the other dialysis are that I have to be more careful about my potassium and phosphorus intake again, which is no fun, and all of the time spent sitting without being able to move around is hard on my back -- leading to headaches -- and sometimes my bowels. Also, I wasn't given a choice as to scheduling, so I dialyze on MWF evenings, which conflicts with most social events (school picnics, Relief Society activities, FHE, even weekend trips) as well as dinner.

The other big change was that the transplant center called me to say that the doctor had been reviewing the genetic testing results, and concluded that I can have live donors, after all. I don't know if he got new information, or just got a better understanding of the old, but there it is regardless. My dad and brother have both submitted their requests to be considered, so it's possible that I could get a transplant in a matter of months instead of years.

Thank you to the many, many people who have been praying for me, asking after me, sending letters, and giving me gifts. I love them all! It means a lot to me to know that others are thinking of me.