It seems hard to believe that we've been doing dialysis for a year now. We have never regretted the decision to do peritoneal dialysis at home. While it was a bit overwhelming at first, it has definitely become more of a routine. Jason continues to feel great, and is consistently happy and content. Our goal is still transplant, but have been struggling to get Jason to the required weight. Because the dialysis solution contains dextrose, it can add 1000 calories per day. We plan to be even more aggressive in the next few months with diet and exercise. Thankfully, because of his lack of short-term memory, he doesn't realize he should already be weary of chicken breasts and salads. We are also attending an information session on Sunday afternoon regarding bariatric surgery. This would be a last resort.
We have learned much in the last year.
1. It Takes A Village. Truly.
We haven't done this alone. Even before starting dialysis, we were armed with information. While researching our options, I came across a blog entry written by a man who started peritoneal dialysis while in his early 30's. He painted a realistic picture of dialysis from a personal point of view. He literally hit the ground running after receiving a transplant, and is currently making plans to participate in his second Ironman triathlon. He recently traveled to Cambodia as part of his campaign to raise money for a charity that helps with literacy and education. He is an inspiration, and gives us hope.
My sister and our friend Keith attended training with us, and have graciously stepped in to help. Our dad was diagnosed with cancer right before we started dialysis. I felt such panic, wondering how I would be able to travel and visit him. I'm truly grateful that I've already been able to make two trips to Houston, and feel confident that I can return. I was able to fully focus on spending time with Dad, knowing they were taking such careful care of Jason.
We are surrounded by a strong support system. We have grown extremely close to the nurses at the dialysis center. They never make me feel silly when I call with questions. They clearly adore Jason, and genuinely want the best for him. I've been incredibly grateful for the support I receive from other members on Caregiving.com. Our family and friends also supply unwavering encouragement.
"How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?" (I Thessalonians 3:9)
2. Humor Is Essential. And In Abundance.
The past year has not been without stress. The learning process of dialysis was rather hairy. Thankfully, we were able to add laughter to our days...and long nights. Since Jason is on the machine for 10 1/2 hours overnight, I'm constantly doing the math to figure how late he can stay on the couch before being banished to the bedroom. We often still cut it close in the mornings before school. The machine has three cycles: drain, fill, and dwell. I scramble to help get Eli ready, while Jason keeps me apprised of the progress of the machine. Lately I've been asking if he's Dwayne or Phil (we're still trying to think of a clever name for dwell).
"A joyful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22)
3. God Always Always Provides. Always.
We honestly remain in awe of the ways God has provided for our every need. This is not the first year we have received blessing after blessing. In the six years since Jason's brain injury, we have been astonished at the kindness of others. We surely have been given more anonymous gifts than anyone else in the whole wide world. Even people we've never met have shown tremendous generosity and thoughtfulness. God's timing is impeccable.
"Many, Lord my God, are the wonders you have done, the things you planned for us. None can compare with you; were I to speak and tell of your deeds, they would be too many to declare." (Psalm 40:5)
4. God Sustains. So Does My Sister.
My sister must quietly chuckle when people tell me I'm strong. She knows the real story. She's on the receiving end of tearful phone calls, and is an unfortunate witness to my unravelings. Her strength and patience are boundless. I have run out of ways to thank her for holding me up.
"For it is you who light my lamp; the Lord my God lightens my darkness." (Psalm 18:28)
