Apparently some are in withdrawal from my nonsensical ranting and social commentary. I therefore present an update.
I have nothing to update.
I read some of the old posts and it's like a fog. Last year sucked, no doubt about it, but it's all different now.
Erik is doing great. You would never know what he went through…unless you have the memories scratched in your retinas, which I do, but that's what wine and vacations are for.
Cancun was fabulous and exactly what we needed. I laid on the beach and did nothing. For hours on end. I spent the rest of the trip saying things like "would your kidney doctor approve of this zip line" and "i'm telling your nurse that you jumped backwards off a cliff." I was ignored but I got over it.
Erik still gets blood work every other week and has a clinic visit every few months but it's sort of a non issue. Translation: I don't even pay attention anymore. I even gave up my meds obsession. I'm assuming he is taking them.
This week Erik is going on a man trip to Gatlinburg with John and a bunch of boys. I'm thinking fast food, no laundry and activities that involve dirt and boats. He was supposed to go on this trip last year and had to back out because of dialysis. So the fact that he is going on this trip without a second though is kind of cool. Laura and I are trying to figure out what we are going to do with all of this free time being home alone and all. Just kidding, we will be sitting on the deck with a pretty drink doing nothing and enjoying it.
Speaking of amazing things that Laura and I do…we are headed off for a girls weekend on crack, or two weeks but whatever, in 38 days. Italy, Greece and Croatia. We have convinced ourselves we deserve it.
Erik and John get their own trip too, lest you think we are still making this kidney nightmare all about us. They are flying into San Francisco and hitting every major golf course from there down to San Diego. Yeh, we'll pass.
The original goal was to have a big fun group vacation but with kids, and sports, and life we couldn't make it work so separate vacations it is.
Erik is in the process of some big backyard project. I dictate directions. He tells me what ideas of mine are totally delusional. It's life as normal.
Since my last update we survived another season of Rugby, Stephanie's MBA graduation and job search and apartment hunt, a graduation party with Karaoke naturally, Nick's return for the summer, Nick getting rear ended and ending up with a new car, moving right from Rugby into Baseball, and the end of another school year. All is well.
Erik got the ok on Friday to leave the country. The only restriction? Don't drink the water. Again I say really? People need to be told this information? Whatever. Bottled water it is.
By Sunday I had a trip planned to Cancun. As Jack says: Mom doesn't mess around. Lest you think I am slacking please know that I had it all planned and ready to book on Saturday and was just awaiting confirmation that Jack's friend could join us. I guess hanging out with just your parents isn't as cool as it used to be.
Last year we took a spring break vacation that we probably should have cancelled. Erik wasn't feeling well, we were trying to hold off on dialysis, but we figured it was our last chance for a few years while Erik served his time on the transplant list. This year? My bags are already packed. Bathing suit, tooth brush, sun screen, done.
It seems dumb to complain about winter when you live in the arctic snow belt, by choice, but seriously people enough is enough.
Today is the 3 month anniversary of the transplant.
Were told that the 3 month mark was some magic time frame to measure success.
The last 3 months, or really 12 months, are sort of a blur but I can say that things are just plain normal now. Looking at Erik now you would just never know what he went through. It really is sort of amazing.
Sadly, this also means I have no funny stories to share. Normal life is not that entertaining, except I do seem to attract the freak shows everywhere I go so I am never without commentary.
I never got a when can Erik leave the country answer so I did what any reasonable person would do and I booked a trip with Laura. I can only be so patient. She had a long few months too and we were were sort of over waiting around to see when we could plan a group trip. We are all set for a fabulous summer trip to Italy, Greece and Croatia. Just the girls. Like a girls night out on crack.
The boys are still trying to figure out how they went through the transplant and we got a trip out of the deal. Again, it's like they never met us sometimes.
John is doing great, Erik is doing great, life is back to normal.
Erik had a monthly post transplant visit today and all is well. Perfect actually. I'm also happy to report that not only did I decline to attend with him today I didn't even know he had an appointment until he was leaving.
He has one more month of seclusion…which, let's be honest, is not really happening anyway…but today they admitted that really he just needs to "be careful" - avoid sick people or gross places as a precaution. Yeh, twist my arm to make me avoid gross places. Really? They have to tell people this?
After another month his blood work goes down to once a week, clinic visits become more spread out, he can go out, and he will be off exercise restrictions, blah blah blah.
Under the not to ashamed to admit it and keeping it real files…Jack informed me of some head ache and dizziness this morning. After I fully cross examined him - did you finish your homework, do you have a test, you know this means you can't go to wrestling, right - I concluded that I really wasn't sure he was sick but what the heck he's a good kid and everyone deserves a break so a sick day it is. Plus he thinks only losers skip a sports practice so I figured maybe just maybe he didn't feel good. He returned to bed and I went about my morning routine and started to work.
I forgot he was home.
I forgot my child was home sick.
I went to check on him at 1:00 p.m. when I remembered he was home and realized he had been sleeping for 6 hours.
I forgot my child was home sick from 7 a.m. to 1 p.m. people.
And now he is burning up.
So if child services comes knocking I'm going to ask them to bring along some hazmat gear and an isolation bubble.
Things are normal. Nothing is going on. And I'm happy to say that is just fine with me.
Erik seems to be back to his normal old self. Today he told Jack that we were running late because "American women are neither timely nor obedient." Jack wisely held back his laugh. Mind you I spent the last year waiting on his slow self so the fact that he was ready to go and waiting for me? Fabulous.
I had my first work trip in months this week. I was a little freaked out at first but it was just fine. Except the house was messy and the puppy had been sleeping in Jack's bed while I was gone but whatever. It could be worse.
As I was waiting in the airport last night I got an update on Jack's wrestling match. From Erik. Who was not supposed to be there. He claims he didn't touch anyone and used the anti bacterial gel I have in every corner of the house. I think Jack was pretty excited since Erik hasn't been able to see him wrestle at all this year.
Erik has started talking about the laundry room redo. Either he is feeling really good and into actually engaging in a project or he is simply talking about it to make me think it will happen soon so I don't go running out and hiring people to do it tomorrow. That kind of stuff is basic normal life around here.
All is well, all tubes are removed, all dialysis equipment and accessories are going back, he can drive, I'm getting a new laundry room sink, and I'm not even aware of his next medical appointment. Amazing stuff I think.
Erik was supposed to have outpatient surgery on Tuesday to remove his various tubes and hardware.
It was rescheduled for today.
I'm not blaming anyone for the scheduling change that wasted a few hours of my time, I'm just saying that one of us forgot about no eating before surgery and had cereal for breakfast. And let me tell you what no one gave a crap what I ate so, you know. In his defense he didn't have to be there until 2:00 so he "forgot" since usually surgery is first thing in the morning, and plus they drilled in his head that he has to eat something with his meds. So today it is on for late afternoon and don't think I haven't reminded him not to eat about two times, or five.
Once this stuff is removed that is sort of the end of the drama phase of these games. Basically things just go back to normal. He will have basic check ups but no more twice weekly blood draws or weekly appointments. Maybe once a month? All I know is he can drive now so I stopped paying attention to his schedule.
He is still under instruction to avoid large crowds in enclosed spaces until the end of February. I told him the grocery store has really high ceilings so I'm sure it's fine and seriously, please, I can't go to the grocery store one more time this week.
I am not prepared to affirmatively state that I have issues with control, I'm just willing to admit that sometimes it is a possibility. And plus it's not my fault if people don't do things right.
I have been in charge of Erik's overabundance of meds for almost 7 weeks. Every Sunday I go through the check list, double check, fill up the little pill holder boxes, and get him all ready for the week. I have also memorized all doses, times and multiple names for each pill. Yes, the doctor calls it one name and there is another name listed on the prescription chart and yet another name typed up on the bottle. I am friends with his personal specialty care pharmacist. I have mastered this. I have a system here people.
Tonight I went into the kitchen for my weekly pill party and it was already done.
I freaked out.
I interrogated him about three times. If i'm honest then five.
Did you remember this one changed to 2 not 3?
Yes I can read
Did you know that this name on the list is actually this pill?
Yes I'm not an idiot
Did you double check the times because it has to be exact times?
No, I did it wrong and didn't really read the paper but I arranged them in such a way that I can tell if you try to double check.
Ass.
I guess he is feeling better now. No pain, normal walking (remember this just means at a normal pace and not holding me up), driving, laundry (love this one), took the garbage out (really love this one). Basically it's just pretty normal now. I'm guessing he will get a work release at his next appointment. It's time. He has really been up in my business lately with all of this free time.
I think the twice weekly labs stop after 8 weeks and then he just has a monthly check up.
Sounds like vacation time to me! I'm researching spring break options while waiting for him to fall asleep so I can double check the pill box.
