It's been a couple of weeks since I was around, and I'm so sorry! I've missed y'all so much, but haven't had it in me to sit and write about our recent adventures. The times I've sat down and tried to write are countless, but I just couldn't do it.
It's been a time of setbacks.
But overall, it's been plain exhausting.
First off, you know Kati started homeschooling in February. Well, the great news is Jonathan started back home three weeks ago. I cannot tell you in words the sheer happiness with having them both home. John and I are over the moon. For some reason, with all that is going on it's a great source of comfort to have our family all together. And considering that Kati will be gone in a year and a half, and Jonathan another year behind her,we are trying to soak up every moment we have with them.
So, to recap, Jonathan came home three weeks ago.
We had one blessed week of normal, then it all changed.
I woke up two weeks ago Wednesday with a severe pain on my right side. Right where my one remaining kidney is. We spent the day thinking kidney infection. Not good, but treatable- play wait and see, and get the blood work done Thursday at dialysis.
By late night, the pain had moved to the lower right side of my abdomen, then spread across so that moving was nearly impossible.
Dad. Flipping. Gum. It.
We ran a bag of fluid in my belly to check (standard SOP for peritonitis- put ot in, let it sit a few minutes and drain. If it comes out looking like thick goop, you know it's bad.)
Bag won't drain.
Congrats- you'e won a free trip to the ER!!!!
So, we go to town (30 minutes away) and do the ER Thing You know. explain about PD Dialysis to the Dr and nurse wo have no idea. Blah, blah, blah.
Then, we get the IV, give blood and by 6am they send you home.
I had to be back and hemo at 11am, so it was a sleepless one for us.
I do believe I slept through hemo though. And John swears he doesn't remember the drive home after dropping me off.
We tried for three days to put in a bag of fluid, and get it to drain to no avail,. By Saturday, I had absorbed 8 liters of fluid, and felt like the Stay Puff Marshmallow Person.
And then came the anesthesia.
Yes, boys and girls, more surgery was in store.
That Saturday I went to the hospital for a 4 hour hemo session, then went under the knife. They removed my PD catheter, and drained as much of the remaining fluid from the peritoneum as they could. Which they said was not much.
Did I mention that this all happened the very same week I was supposed to be ending my hemo run? You know, I was going back to home dialysis again?
Timing. Is. Everything.
To top off the loveliness's, I have had an issue with hair loss since starting hemo. I mean, handfuls of hair every time I brush it. On the one hand, I have had really thick hair, so it looks thin now, rather than all gone.
To take the strain off my hair, I had to cut it. 8 inches. It's now just at my shoulders.
Cried for the six more weeks of hemo I now have, before we can even think about another surgery to reinsert another PD catheter. Cried for the hair that I'm losing, and the fact that all the tests are normal- so they are saying it's a byproduct of the stress that hemo is having on me.
So, in six weeks, I will be healthier, and hairless.
Somehow, I'm having trouble reconciling the two.
So, thank you to everyone who has muddled through this all so far. And to say Thank you, I will now share so hope that we have been blessed with.
We went to the DMV a week ago to get my license renewed (only a month and a half late) and pick up a new handicap sign for the car. After waiting a really long time, we were finally called to the counter by a sweet bear of a man named TJ.
While he was processing things, he asked me about the walker I was using. I told him about the dialysis, and his face lit up.
It turns out his mom was n dialysis, and he gave her a kidney back in 1997. He was so excited to tell us how great she was doing, and gave us a ton of insight into the process from both sides.
It was amazing.
Then, I received the following post to my Facebook page:
Kelli: Believe it or not I know what you are going through. I was on dialysis in 2007. My wife donated her kidney to me and everything is going pretty well. Keep the faith...
This is from a guy I went to high school with and just reconnected with.
We have been working with OHSU to get a transplant evaluation done, but they keep sending us more tests to have completed here before we can go to Portland for the final eval. It's been two months of back and forth, and hopefully we got the last test done today.
Our goal is to be ready to start testing living donor candidates again by May. Everyone who was sweet enough to be tested in Denver are welcome to test in Portland, if that would still be something you are interested in.
With the new IVIG protocol that OHSU will follow (using a living donor) our chances of finding a match are so much better. Someone turned down by Denver may very well be accepted by OHSU! Woohoo!
Well, it's been long and wordy, but that is where we are at.
Thanks for your prayers on this, everyone. Truly!