Thursday, January 26, 2017

Post-Op Visit

I was scheduled for my post-op visit with the transplant donor team last Thursday.  All my helpers had left by Monday night and I had asked my sister to come back Wednesday evening and stay over so she could drive me in early Thursday morning.  Well, we had horrible heavy rain Tuesday and Wednesday, so I told her I could make it on my own.

I made it fine; there wasn't any rain so the normal awful traffic wasn't made any worse.  The extra person for the carpool lane would have helped but the trip wasn't too bad.  Then the keystone cops  part of the visit started.  Normally, the clinic days at the transplant center work on schedule.  You go for labs, you go to your appointments.  They put you into a room and the doctor, nurse, coordinator, pharmacist, etc. comes to you.  It's kind of a round robin experience.

Something was mixed up last week, though, and I had to wait quite a long time and then my appointments were mixed up.  The funny thing was that Pat arrived early for his check up, hoping to see me, and they called him right in.  So we spent the next couple of hours going between rooms to check in with each other while staff was coming to get us and bringing us back.  It reminded me of one of those old cartoons where there's a long hallway with closed doors and people dart across in and out of the doors.  The lucky thing is that, although I'm not on any medication now, I still feel as if I'm surrounded by a bubble or a ball of cotton most of the time.  So I don't really get impatient.  I know; enjoy it while it lasts!

My labs were good.  One major test of kidney function is creatinine level.  This has been a major topic of conversation in our house since Pat's kidney function got really low a couple of years ago.  Normal creatinine level should be about 0.6-1.2 mg/dl and Pat's was close to 5.  I think when he started dialysis it was actually near 7.  Not good.

My kidneys, of course, were healthy, and the pre-surgery creatinine was about 0.68.  Right after surgery the level was 1.13, reflecting the loss of half of the filtering mechanism in my body.  Two weeks later the level was down to 0.89.  My remaining little kidney is already picking up the slack.  It will increase in size and function over time until it is handling 85-90% of the work that both kidneys did previously, which is plenty to keep me healthy.  Amazing stuff.  Public service announcement for today:  Drink Lots of Water!  It keeps your kidneys healthy.

The other interesting fact I learned that day was that my energy level, which has been low, might not be back to close to normal for 6 months.  That's a little longer than I had expected.  I can still do what I want, but one walk or outing a day is pretty much it.  For example, after my long day last week where I left at 6:45 am and got home about 2:00 pm, I wasn't able to get myself off the sofa for more than the time it took to make a dinner and eat it.  Then I went back and dozed until bed time.  Not how I'm used to feeling at all.  Both Pat and I have a lifting restriction of about 8 pounds for another 5 weeks or so, which is kind of hard to remember.  We went to Costco yesterday and just bought things that we could lift one at a time.  No cases of cans or bottles!

So everything is good.  Pat came home on Monday afternoon and he's doing well.  We just have to be very careful about exposure to possible infection, so it's mask, rubber gloves, hand washing, being careful about food contamination, etc.  I expect this will improve over time as his immune system comes back to a higher level.  A little change in lifestyle but so worth it!

My prize for donating my kidney:




And.....I did some spinning last night.  So nice to get back to my wheel!




Sunday, January 22, 2017

We interrupt our previously scheduled surgery updates...

for a little bit of knitting which is also political commentary.

You probably noticed that I mentioned knitting Pussyhats in the last couple of weeks.  I know I was knitting one before I went into surgery and worked on it some more afterwards.  Note:  I'm sure this was the hat that I messed up and had to do over but that probably would have happened without simultaneous drugs and pain.  Anyway, I ended up with four hats.  The process of knitting them was interesting and I tweaked the pattern every time, so kept a little bit of interest up.  They also came out totally different sizes due to adjustments in needle size and how much yarn I had.  Whatever!  I finally finished.



My sister planned to go to the Womxn's March in Seattle so I managed to finish up the hats in time to meet up with her following my post-op appointment on Thursday.  I'll tell you how that went next time.  See how I keep you coming back?

I, of course, wasn't able to go to the march, although I really I wish I could have.  History being made!  My pathetically low energy level right now wouldn't have seen me through the probably 6-7 hours on my feet.  So my four hats marched proudly on my sister and three strangers, who rocked them!



These photos were taken at the bus stop, where folks were patiently waiting as they tried to get to the march gathering spot.  As an estimated three times the expected 50,000 people were all trying to get to the same place, buses were few and far between and crowded when they arrived.  I couldn't find a really representative photo of the crowd, but like this one.  Our iconic Smith Tower is in the background and the amazing blue sky shows up.  Our pretty much constant rain of the last few days took Saturday off.



I was so happy to be represented in even a tiny way on such a momentous day.  My heart, my handiwork, and my lovingly-collected wool were all there.

I am proud to personally know so many women who marched in multiple cities, including London!  We must stand up for our rights and everyone's rights and these beautiful, peaceful, pink marches were a wonderful start and a total inspiration.

I love the contrast photos of the Capitol Mall.  Relatively empty during the Inauguration and full and lively during the Women's March.  March on! Stand up for what you believe!







Monday, January 16, 2017

Exciting Weekend!

Good Monday to everyone!  I'm feeling better every day although I had  a rough day last week, but decided that it was the pain medication/laxative combo to blame and I cut those out.  I still, of course, have a long way to go to heal up, but bruises are fading and I'm feeling stronger.  The areas around the incisions are still sensitive but getting better all the time.

Saturday the Princess and I planned for a few visitors, but were mostly planning to watch the Seahawks (lose, boo!) and nap, which was working fine for us most days.  Instead, we had Grandma, Grandpa, Julie, Robin, and our local kids with the grandbaby, who kindly provided lunch.  The nice little visit was progressing when the front door opened and in walked Mr Hollywood, which was a total surprise.  I've been so blessed to have the great company and care of my sister and my Princess, but having all the kids here together to see me was such a boost!  The out-of-towners are leaving today but we've had the nicest time.  Getting a few heavier/awkward chores done by the taller one was an added bonus.

Grandma and Grandpa don't get to see these two very often.



All the kiddos plus grandbaby (whose parents don't want his face online).  He's totally rocking his Gramps cardigan, though!



Ma and her little chicks.




We drove into town for a surprise visit to Pat, who I hadn't seen since leaving the hospital.  He's doing well and looking good.



The mask is for protection against any and all unwanted germs and seems to be working well so far.  He's walking a mile or so at a time and progressing nicely in his recovery.  I have to step up my game to keep up with him.  I keep thinking that a walk around the lake will happen, but so far I haven't made that distance.  Maybe today, before it starts to rain later.

It was still frozen and beautiful at sunrise today.



All in all, good spirits, good care, good progress.  Back to knitting PussyHats.  I still have at least two more to make.

Thanks again for your interest and good wishes and donations so far to the NW Kidney Center.  The page is still up if you've been meaning to but haven't gotten to it yet.




Monday, January 9, 2017

Musings - Day 5 Out

I am not known for my patience. Like most, I want to do what I want when I want to. Waiting, although made tolerable by knitting, isn't high on my list of favorite things. Sitting back and enjoying a journey, while sometimes amazing, isn't my usual preference.

That brings us to the current situation. My right kidney, as far as I know, is comfortably ensconced in its new home and working away as always. My good old left kidney is wrapped up in business as usual, cradled in its usual spot. The rest of my abdominal cavity is pretty much a wreck.  I don't want it to be a wreck. I want to be back to normal. That being said, every day my improvement is stellar.  For a few days before surgery, every time I got out of bed, propped myself up, or rolled over, I thought "I won't be doing this again for a long time."  But I am!  A little gingerly, but better every day.  I even slept on my side for awhile last night.  It had been too painful before to even turn over there but I could stay for awhile.  Success!

So my expectations vs my reality so far:  I spoke to a couple of other donors who pretty much said that the recovery wasn't that big of a deal...you'd be extra tired for awhile, no lifting, pain quite manageable.  On the other hand, the Transplant Nurse told me I'd feel like I'd been hit by a truck on the day after surgery.  So optimistic me decided I'd be great.  Up until yesterday the truck theory was closer but not exactly true.

I think the problem was that I had a lot of pains that I didn't expect and probably was told about but chose to forget.  My whole abdomen from groins to ribs felt like it had been pounded with something.  Sides hurt, hips hurt, neck hurt, shoulders hurt too.  Some of this was probably from whatever equipment they use to stabilize you on the operating table and it must be medieval torture equipment. Whatever it was left bruises and marks all over the place. Some of it was from the gas they use during the laparoscopic procedure to make space to see inside.  It doesn't all come out and it's very "uncomfortable."  Torturous.  The weird pain like someone was stabbing needles into my shoulders was apparently "referred pain from the diaphragm"...who knows what that means?  So in addition to not being able to move around very well I also couldn't take a deep breath because it felt like my chest was being compressed by something.

I have four incisions, three small and one about 3" or so.  Each is painful but not overly so.  My lower abdomen is numb which makes it weird when it feels itchy but you can't feel it when you try to scratch.  Hopefully the itchiness is the nerves waking up.  Then there's the swelling.  Intellectually I know that trauma induces swelling and the big giant belly I now have will eventually go back to the medium sized belly I had before but I'm not quite convinced of that.

Without going into too much detail, bowel function is returning, gas pain is lessening, and my daily moving around the house isn't much different than it was before.  Thanks to all of my great yoga teachers over the years, I know how to protect some areas of my body and use others, and right now my abs are taking a rest...arms and legs and glutes are doing their share.  I can't lift anything over 8 lbs for a couple of months and it's hard to remember that...until I come close to doing something wrong.  Those muscles protest!  Thanks to you, Riley, I have super strong abs and they'll take this rest in stride and be back no problem.

I guess in my convoluted way, I am trying to explain that you never can quite be prepared for something as major as this.  Everyone's experience is different and the doctors can't fully prepare you for how it will feel if they haven't been through it themselves.  I thank my healthy, strong body for getting me this far and trust that it will continue to do the same for many years to come.

Now I need to take a nap.




Saturday, January 7, 2017

Home

I talked the doctors into letting me come home last night. My insides aren't yet fully awake but I convinced them that I can manage that here in the comfort of my own house. Everyone at the hospital (with maybe one exception) was kind and caring and great but it was a hospital after all. It turned out to be lucky that we had to wait an extra hour or so for my meds since there was a fire in a house down the road from us and our driveway was blocked by fire hoses until shortly before we drove in.  Small mercies! I don't think it resulted in any casualties so could have been worse.

I'm glad this is over and everyone is on the mend. Thanks for all the thoughts, good wishes and prayers. I appreciate my sister's help and care more than she will ever know and apologize in advance for how cranky I'm going to be. 

That being said, I really do feel like shit. 


Thursday, January 5, 2017

We're Still Alive And Kicking

Wednesday was the longest day ever, but we're both here to tell about it. We left the house at 5:30 am to drive to the hospital. My dear sister spent the night, drove us in, then fetched, carried and accompanied us through the long hours. Pat's son was here as well.

When we arrived, we had a short interview with the hospital's media guy. This is the first time a local, four person transplant exchange has been done at this hospital and there'll be some publicity about it after we all recover. Then it was hurry up and wait. My surgery was first so I was taken to the pre-op area and prepared. We looked pretty good to start with.




The next thing I knew, I was in recovery minus one kidney. My sister accompanied me to my regular room when it was time. I tend to get very nauseated from anesthesia and/or pain meds and this was no exception. I didn't feel too bad on the whole. 


We waited a long time to hear about Pat. The donor kidney wasn't ready for him until around 3:00 and then the procedure just took a long time. He didn't get up to his room until around 10 pm. All procedures went well and the donor kidneys are working fine. 

I do have quite a lot of pain and most of it seems to be residual gas from the laparoscopy. Not pleasant at all. I'm getting up and moving around, though, and looking forward to easier days ahead. 


I managed to knit a little today but slowly. The first Pussyhat will probably not be finished here. 


Tuesday, January 3, 2017

T Minus One and Counting

Check in time for me is 6:45 am.  And here I am at 10:30 pm drinking water.  I'm supposed to drink 2 liters of fluid between 8pm and midnight and it takes a long time to do that.  Plus I'm not really worried about sleeping; after all that liquid, who will be able to stay in bed?

Surgery is imminent, we are ready.  There are some nerves and worry about the aftermath of the surgery but on the whole I'm very optimistic and ready to be done.  The medical and surgical teams are great, the hospital is excellent, we are in good hands.

Today was cold and sunny and we got to go for a walk.  Life is good and going to be better.  I appreciate all the support and encouragement we've received and the help we'll get for the next couple of weeks.  See you on the flip side!


Sunday, January 1, 2017

Happy New Year!

The first day of 2017 and it's now just a hop, skip, and a jump to surgery.  We are excited but nervous; hoping that the advice of "you'll feel like you got hit by a truck on Thursday" is a gross exaggeration. Neither one of us has had major abdominal surgery before and we know it won't be a walk in the park but we're both strong and healthy and are expecting to have good results and smooth recoveries.

We realized today that next Sunday we'll be watching football in separate places with brand new scars on our tummies.  Something to look forward to!

I wanted to share a link on here in case anyone reading here is interested.  We have set up a donation page at the Northwest Kidney Centers and hope to raise some money for their education fund.  Diabetes is one of the most common reasons for kidney failure and in a lot of cases it is avoidable or reversible with lifestyle changes.  The Kidney Center does a lot of education on diet and exercise choices that can help avoid the misery of kidney failure.  We hope to help them in patient education and advocacy and also try to raise awareness of living organ donation.  You can check us out here.  Donations are much appreciated.

We had a lovely weekend full of friends and family.  And knitting!  The weather has turned cold, so I paused in my gift hat knitting to make one for myself.  I don't think I look good in knit hats, but walking here is unpleasant without something on your head, so I gave it a go.  I used some Spiffy from The Plucky Knitter that I had left from a shawl and had just enough for a hat and pompom.  It's soft and lightweight and was great on our walk around the lake today.



We had some good friends over yesterday for an early New Year's Eve party.  We watched the UW Huskies lose to Alabama (boo!) and then had dinner.  It snowed off and on, so they got on the road to head home fairly early.  I remembered that we had some Japanese wishing lanterns left from the Princess' wedding and we decided that this was a good time to send some good thoughts into the universe.  We went on to the dock, lit one, and watched it sail high into the sky with some of our wishes for a healthy and happy year.  Unfortunately, the wind came up and it turned sideways and then came down in the water, but I'm sure it was up long enough to get our wishes out there!





The other morning the ice on the railing panels was just beautiful.  There's so much beauty in nature!


All best wishes for a happy and healthy year for you all.  I might get to one more entry before the surgery if I have anything to say.  We will be notified on Tuesday what time to show up for surgery on Wednesday and it's probably going to be first thing in the morning.  Too keyed up to sleep much now, probably too painful to sleep for awhile, so maybe I'll get a lot of knitting done in the coming days!  One can only hope.