There seem to be no words to describe the roller coaster we have been on this week. How 48 hours can throw you around so much, so intensely, up and down and all around.
I think John and I could each tell a much different story of the emotions and thoughts that we railed around in this week.
But, I will try to explain.
Dialysis Thursday started out like any other treatment time. Hop in the chair, get hooked up, and figure out how to kill 4 hours of your life without going brain dead from too much TV. Or maybe it's all those commercial.s Since getting DVR a few years back, our house has been a commercial-free zone.
But I digress.
The nurse in charge of the unit brought over my most recent blood results. She stated that my kidney has all but given up, only processing fluids but not the toxins, so hemo is the only option, and needs to be a "permanent" option.
This means getting a fistula, and coming to terms with the fact that this is now my life. Going to the clinic three days a week for an extended time of four and a half hours.
Add to that the 2 hours of round trip driving from the house, and let's just say the three days of my week are shot to, well, you know.
The biggest issue is that the more I questioned the results, the more she seemed to:
a) get defensive that I was even asking anything and
b) Make up what seemed to be odd answers to justify her statements regarding the results I was questioning.
I called John from the clinic to have him get us an "ASAP" appointment with my doctor, and unfortunately only had a few minutes to talk to him so he was left with a pretty nice sense of panic. With no way to talk to me again for 4 hours when he picked me up.
However? He was able to get the appointment for the next morning. He. rocks.
We spent alot of time talking on the way home Thursday, about all the options and my concern about the results. Our end game was "When (Dr.) Feldman tells us to panic, we'll panic. Until then, NO panicking."
We talked to the kids a little about things that night, and reiterated we wouldn't know the full extent until the next morning.
And then? We watched several episode of Gilmore Girls and West Wing on the DVR.
In another life, I would be Lorelai.
But that is a whole 'nother post.
Friday found John and I driving over to see Dr. Feldman. Neither of us had slept much the night before, but we trundled on.
Feldman came in and happy and cherry, so that we good.
Then, he dropped the bomb.
Back to dialysis while I sleep.
You could have heard a pin drop in that room when he said that.
Then came the jumping and yelling and chest bumping.
Ok, so there was no chest bumping, but you get the picture.
We. were. ecstatic.
Three weeks ago, I had my abdominal PD Catheter removed from my stomach because of infection. At the time, we discussed it would be at least six weeks before we could talk about getting a new one inserted surgically.
And now, after only three weeks (not to mention the hell the nurse had put us through the day before) he was talking about getting me off hemo. Permanently.
Can I get a Hallelujah, and an Amen!
So, here's the current plan.
We meet with the surgeon on Thursday. we're hoping he has an opening to do surgery on Friday.
Then we wait two weeks before we can start using the catheter again.
Hopefully, hopefully, in three weeks maximum I Will be back at home full time, doing dialysis at night while I sleep, and th catheter in my left shoulder will be removed by Feldman in the office.
(I do believe i became abit pale when he said "Sure, I remove it here in the office. Just put my foot in your armpit and give it a good yank!". But you know? At this point, he can do that while whistling Dixie and I won't care. As long as the only time I go to the Hemo unit is to say Hello.)
In transplant news, we are still working with OHSU. They are way too specific about needing so many, many tests before I can even go in for evaluation. More than Mayo, Denver or Legacy asked for. It's honestly getting redundant and frustrating (we've been in process with them for three months now and still no face to face visit).
Now, I need to see a Hepatologist about the fact my liver is slightly enlarged. Sigh.
Feldman ordered a gallon of blood worth of tests I will have done Tuesday, which I will get the results of when I see the Hepotoloist later in April. So, long story short, We are looking at May at the earliest for the face to face (where we will have to stay two days for even more tests, ugh) and being listed and ready to start testing living donors in June.
Again, these are "best case scenario" dates. The way they are spinning s around, who really knows.
But, at least I'm going back on PD and coming home.
For the moment, that will be my rainbow.