Knittinggarden

On Tuesday, April 4th, we were three months post surgery.  The doctors and/or kidney exchange officials have a rule that no contact between transplant exchange partners (donor and recipient) can be made prior to 90 days.  Even though all four of us were doing well and had given prior permission, we had to wait for that time to pass.  Finally the day was here! Facilitated by the University of Washington's public information editor, a television interview was scheduled to document the event.  This was the first time two transplants had been done in the UW hospital at the same time with organs donated by living local donors.  Publicizing the program and the event will hopefully bring awareness of the great work being done at our university's transplant program and also encourage more living donation.  (I just typed loving donation accidentally but that's a pretty accurate description of it, too. 😊) Our meeting was set to take place at the UW research faci...

If you go by weeks, March 29th is 12 weeks since our surgery.  We continue to feel good and do all we can to keep up our exercise and stave off the boredom of this endless, rainy winter.  Pat got a contraption that lets him ride his bike in place and, after trying it in the garage, moved it to the patio so he can keep tabs on what's happening on the lake while riding.  Much safer than actually riding on slippery and muddy roads with his new kidney! I've been greatly enjoying the yoga class and also have been doing my own little work out a couple of times a week with my weights.  My energy is a lot better but I found out this week that if I walk 5 miles, avoiding a nap a couple of hours later is impossible.  I can think of bigger problems to have... So I'm pretty close to turning this back into a knitting blog and hope that I will continue with more frequent posting than I did before this transplant became a reality.  In that vein, I'll show you a li...

Yes, Wednesday was 8 weeks post surgery and things are getting back to normal around here.  Pat has actually been released to travel so we're happily planning a possible trip to the desert sometime in April.  He's not sure how long he can be away from his doctors here, so we have some more information to gather before we can get too excited.  We still feel a little housebound as he has to be careful about being around too many people and especially little kids.  Yesterday we ventured out to a movie, choosing an afternoon showing to avoid crowds and arriving armed with disinfectant wipes to clean off the seats. We saw Hidden Figures and enjoyed it very much. I still have the little bit of soreness, numbness and swelling around my main incision site.  I expect that will last for awhile longer.  Other than that, my energy is much better and I feel pretty normal.  I walk every day, weather permitting.  The usual distance around the lake is 2-2.5 mil...

We had a little upset in our usual schedule of resting last week...we both can walk around our lake, which is about 2 miles, with no trouble.  Pat, though, had been noticing a bit of shortness of breath while walking uphill.  We, of course, ignored it until it got pretty bad last Friday, when he called to report it.  He had had a similar occurence several years ago and it had been a reaction to a blood pressure medication so we assumed that would be the case again. The transplant coordinator talked to the doctor and they decided we needed to come in to their ER.  It's an hour away with no traffic and it of course was Friday night.  So we ate dinner and hit the road. The reason they wanted us at UWMC was so the transplant docs could oversee any tests and make sure the new kidney wouldn't be compromised.  That sounded good, until the transplant representative showed up three hours after we arrived and said she had just found out we were there.  So much...

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...

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...

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. 

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 read...

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!

After we successfully made it home, we got up bright and early the next day and left the house by 6:00 AM.  We needed to be at the UWMC lab at 7:30 and we live an hour away not counting traffic and rain, of which there is always some.  Pat had more appointments than I did, so I tagged along with him until I had to be somewhere else. We both supplied blood and urine samples, then went to the Cardiology Center, where he needed another Echocardiogram.  When you're on the transplant list or being screened for the transplant, they want to make sure that the organ is going to a person who has other healthy systems; i.e., heart and lungs.  So  Pat has had CTs, ultrasounds, cardiograms, etc. every year and it was suddenly decided that since his last one was last spring, another one was necessary.  They squeezed it into our busy schedule of appointments. It was interesting for me to watch (I don't think he could see anything) as the test is essentially an ultras...

We matched, but not well enough.  It would be possible for me to donate to my husband, but it wouldn't be ideal since his blood reacted to the antigens in mine and that would have to be managed by medication and/or plasmapheresis, a "washing" of the blood to remove antibodies.  Either of these apparently would increase rejection risk and higher doses of the anti-rejection medications would be harder to tolerate.  All that meant we would likely go into an exchange pool and see if we matched others needing kidneys or other living donor volunteers.  This would increase the waiting time.  After almost two years of Pat being on the transplant list for a deceased donor with no results, further waiting was not what we were looking for. Then I received a call from the Transplant Donor Nurse asking if we would like to participate in a local exchange.  They had another two people in the Seattle area who were in the same boat as we were and who might be matches. ...

I've been MIA from the blogosphere for the last few months.  I've been knitting up a storm and spinning some, too, but documenting it here has taken a backseat to other things that have been on my mind.  I'll try to catch up and post some photos of things I'm especially proud of, but you can follow me on instagram @lboatsman to get the day to day images.  It's easier to snap a photo and post it with a couple of sentences than to create a blog post, even though I write them in my mind all the time. So, what's going on?  I'm going to write this story in a series of posts, as it won't be finished for awhile.  It started a couple of years ago, when my husband had to start dialysis due to kidney failure caused by childhood disease.  He had always taken good care of himself and managed to make it to age 60 before the inevitable occurred.  Dialysis is essentially intolerable but necessary for life to continue, so it's been tough.  He went onto the t...