Rapid Blogging - Blog #3: Rob's Health

Rob is still dialyzing 3 times a week at the nocturnal clinic. It works for us. Unfortunately, it didn't work out so well for our dialysis friend, who recently transferred out of the nocturnal clinic to an afternoon shift at a nearby clinic. I'm glad to hear that he is at least a little bit happier at the new clinic and dialyzing at a different time. But I sure do miss being able to say hi and catch up with him whenever I went to visit the nocturnal clinic!

Rob has good days and some bad days. His good days are great, and his bad days are awful. The in-between kind of days are best described as "meh". For those of you who have never heard the term "meh" before, here is the Wikipedia definition of it:

"Meh" is an interjection, often an expression of apathy, indifference, or boredom. However, it can also be used to indicate agreement or disagreement. It can also be an adjective, meaning mediocre or boring.

Well, that definition sure doesn't hit it on the head. How about this definition, from the characters who created it (the Simpson's):

"It was actually spelled out in The Simpsons when Homer is trying to pry the kids away from the TV with a suggestion for a day trip. They both just reply 'meh' and keep watching TV; he asks again and Lisa says 'We said MEH! M-E-H, meh!' "

There, now that one is better. Life on dialysis is a lot like that kind of "meh". Anyone reading this who is or ever was on dialysis at some point in their life (or who is a caretaker or spouse to someone who is/was) will understand that.

Back in the early days of dialysis, way back in 2008, Rob actually did feel better after a session of dialysis. His blood was cleaned out and there weren't a bunch of toxins floating around his body. But as dialysis has continued, and Rob had his double nephrectomy, and the wait on the transplant list continued to click 1 day closer every day, things have gotten tougher.

There are more bad/awful and "meh" days than there are good days. Rob still continues to struggle with low blood pressure. Every time he gets up from the couch, the bed, or stands up from bending over, he has to lean against a wall or a door frame for 10-15 seconds until the dizziness goes away. He sometimes also gets ringing in his ears and his eyesight is affected (gets blurry or shadowy). It does worry me, but what is worry?

Worry is just an emotion. Everyone has worried about something in their life before. Wikipedia (again) says that "Worry is the state of engaging in chains of thoughts and images of a negative and an uncontrollable nature in which mental attempts are made to avoid anticipated potential threats." Worry can sometimes lead to fear, but I have not allowed it to go that far. Most of the time, I try to turn my worry into thoughts and images of a POSITIVE and ever-lasting love that is promised to us from God. Everyday is a gift from God. We are not promised a new day, and there's nothing we can do or say or think that will prove otherwise. If the Lord wills, I will wake up tomorrow and thank Him for the continued breath of life. If the Lord wills, Rob will wake up tomorrow, connected to his dialysis machine, and thank God for His creation, His continued sustainability from a machine that sucks life out of him and pumps it back in, continuously for 8 hours. We have nothing to fear when we learn to put our trust in God. I do trust God every day. I trust that His plan is better than any plan I could create in my mind. And this trust is part of my faith. Faith in God for all the things that have happened in the past, present and those that will happen in the future.

Speaking of the future, faith about the future is usually called "hope". I hope for many things. I hope to have a healthy baby next March. I hope that Rob gets a kidney transplant. Actually, I hope he gets one soon. I hope that our dialysis friend gets a kidney transplant, too. I hope that our church will continue to grow and bring more people to the saving knowledge of Christ, changing their lives and the community around them for the better. I hope for... well, I could go on, but I'll spare you.

What do you hope for?

Rob has been on the transplant list now for around 1130 days. That's about 3 years and 1 month.

In other health related news, Rob had a minor surgery last month for an unrelated-to-dialysis condition. I won't go into details because we don't really want to talk about it. But it's nothing scary, so don't worry!

The most recent "bad" day that Rob had was this past Tuesday. As he was coming off of the machine after treatment all night, the dialysis tech made a mistake. Instead of having Rob's blood pumped back into him with saline (when the machine is turned off at the end of treatment, there is still blood in the tubes and inside the filter/machine, and that has to be returned to Rob's body), the blood was pumped further OUT of him and into the bag of saline. Yeah, backwards... not the right direction. Then, when the needles were being taken out of his arm, I don't know exactly what happened, but there was a blood spill which resulted in more of Rob's blood going where it shouldn't: on to his bed sheets and on the floor. Ugh. Groan. Sigh.

We know accidents happen. That's why Rob isn't holding a grudge on this certain dialysis tech who made the mistake. But mistakes do have consequences. Unfortunately, the consequences aren't paid by the person who made the mistake. Rob felt so horrible due to the amount of blood that wasn't returned to his body, that he took the day off from work. He had zero energy that day. We spent the day on the couch watching multiple movies and eating leftovers from dinner the night before.

Oh, and lately, part of why Rob has been feeling so yucky and low-energy is because his hemoglobin levels are too low. Normal hemoglobin levels should fall somewhere in between 12 and 14 g/dL. Patients with kidney failure have reduced hemoglobin levels (just like cancer patients who are undergoing chemotherapy do, too). That's why they give him EPO during his dialysis treatments. Well, recently, someone at the National Institute for Kidney Whatever decided to lower the acceptable limit for "normal" hemoglobin for patients on dialysis. It used to be 12-14. Now it is acceptable for Rob's hemo to drop into the 10-12 range and be okay. So Rob's last lab results showed that his hemoglobin level is 10.2, which means, "all is good". News flash: no, it's not! Whoever is responsible for lowering this acceptable level should feel shame. Yes, your decision to lower the level is probably saving dialysis companies MILLIONS of dollars every month, because it means they use less Epogen and therefore pay less money to Amgen, the creator of this miracle drug. Woo-hoo. Good for you. I hope you sleep better.

We asked the dialysis nurse if they could give Rob more EPO, since his last hemoglobin level was only 10.2. You can guess what the answer was.

I guess that about sums up Rob's health. I feel bad for ending on such a negative note. But, it's life, and it's our life, and I am compelled to share it with whoever reads it.

Thanks for reading!