Monday, December 26, 2016

Part Four - More Tests and Talking

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 ultrasound of the activity of the heart.  The display looked just like the one you see when you're looking at your baby, but this showed the heart activity.  Sometimes there would be bursts of blue and red and I don't know if this was electrical activity or coloring by the machine to differentiate something, but it was pretty cool!

I left and went to my first appointment in the Transplant Center.  I met the Donor Nurse Coordinator, to whom I had spoken on the phone many times, but never met.  She went over what to expect in the hospital and had me sign permission forms again.  As a living donor, you are allowed to change your mind about donating any time during the entire process, so you have to give your permission and sign that you understand multiple times.

Then I met with my surgeon.  I feel so confident with him; he's kind and sensitive...not at all like what you hear about surgeons in general.  I asked him how many transplant operations he'd done and he smiled and said he'd been doing them since '82.  A good sign.  He also reiterated his philosophy that he'd told me before.  The Hippocratic Oath instructs doctors to do no harm.  He wrestles with his conscience about harming a perfectly healthy individual for the good of another.  I teased him that if he messed me up, my kids would come after him.  He replied very seriously that he would come after himself in that case.  His conscience would not let that go.  I have every confidence that he will be careful with me and the outcome will be excellent.  He showed me the CT scans of my abdomen, which were very interesting.  The right kidney will go.  The left will increase in size afterwards and eventually do 85-90% of what two kidneys do.  That, he said, is plenty.

I was finished for awhile, so joined Pat in the next room for his meetings. Patient Nurse Coordinator, Nurse Practitioner representing his surgeon (who wasn't available that day), pharmacist, and the Nephrologist who heads the transplant team, who popped in.  He is so excited to be doing this exchange and was practically beaming when talking about what good matches we have and how successful this will be.  I'm glad everyone is super confident!

Pat had to have one more immunization and we headed off to the Pre-anesthesia clinic.  We each met with a nurse to be questioned about anything that might affect the anesthesia we will be given.  They ask you things such as, "can you walk up a flight of stairs without getting out of breath?" and "can you walk a block or two?"  They search mainly for any heart issues that might arise during surgery.  Hey, I can swim a mile and I did a triathlon last year.  I guess I can do those things.  We both passed.

So now it's back to waiting.  I do have to give one more blood sample tomorrow but then we wait to hear from the anesthesia department on Tuesday about what time we have to show up on Wednesday morning.  And keep our fingers crossed that nothing changes between now and then.  Until we're there and ready to go I won't really believe this is happening.

Friday, December 23, 2016

Part Three - The Travel Part

In addition to having to get our acts together to leave town with little notice, we found an opportunity to rent our condo for a couple of months during our absence.  This meant that we would need to reorganize and move a lot of the stuff we've been leaving there out of closets and cupboards so renters will have space for their stuff.  Scrambling commenced and we got windows washed, carpet cleaned, closets emptied, garage tidied, and new dining table finished and set up (and old one gone.)  We also had to pack up the stuff we wanted to take home with us (the car might never have been so full and heavy.)  Pat had his final dialysis in the desert early on Friday morning, I went to my final exercise class and we were ready to leave a little after noon.  It was actually a bit rainy, so there were rainbows galore that morning.

Our original plan was always to drive to Vegas this weekend to attend the UNLV graduation.  Our SIL, Mike, graduated with a degree in accounting and we wanted to support him and let him know how proud we are.  The graduation was Saturday morning at 9 AM and we thought we would see the kids Friday night, go to the graduation, and then leave for Seattle without staying for the party as was our original plan.  However, there was snow forecast along our route home and especially over Snoqualmie Pass by Sunday and we decided that leaving early in the morning on Saturday would be our best bet.  So we drove to Vegas on Friday and most of the drive was very windy but otherwise uneventful.  (Except for the broken windshield wiper that we managed to get replaced in Yucca Valley.)  We went to dinner with the kids at our favorite Mexican restaurant, then visited a beautiful cactus garden with them.

We got on the road early Saturday morning and Mike managed to graduate without us.

We headed north and planned to make Boise.  This was a long day of driving but very beautiful.  The first sign of snow was in the high peaks north of Las Vegas

and as we drove we saw more and more.  After awhile, snow by the roadside was a common sight.  We were lucky that the snow had fallen the day or two prior so the highways were clear.  We stopped for lunch in Ely, NV and had our first experience with snow underfoot.

The lunch was indeed worth braving the cold!

It did continue to get colder, though, and by the time we got up to leave Boise on Sunday morning, it was below zero.  We really enjoyed the views, though.

We stopped in the Tri-Cities area of eastern Washington to have lunch with a friend of Pat's from high school and his wife, and had a nice time.  Those kinds of stops were the only cases of driving on snowy roads and we were glad of that.  The snow on Snoqualmie didn't happen on Sunday and we made it across before dark in any case.

We got home to our lake house in the late afternoon, with time to unpack and pick up Thai food for dinner.  It was cold in here despite the fact that I'd bumped up the thermostat about 3 hours prior to our arrival.  We appreciate this house much more as a summer house, now, since the bare floors, high ceilings, and huge glass windows and doors can get a little chilly.  Here's mostly what we'll see on our walks around the lake in the next few months.  Pretty, but damp, dark and cold.

I filled up the bird feeders and we are having a great time watching the birds again, and also seeing all of the different varieties of ducks that are here in the winter.  Doesn't take much to keep us amused!  It's supposed to snow this evening so right now I'm enjoying the smell of the big pot of chili I'm making.

Our early arrival at UWMC for testing and pre-op visits on Monday will be the next post.  Happy holidays!

Friday, December 16, 2016

Preparing, Part Two

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.  We would cross match blood with them and hope for the best.  We got a call that those matches were perfect; I matched the kidney patient and their donor matched Pat.  In fact, we were told that when the results came in they were so good "the doctors cheered."  Now were were talking!

I received this information in late summer.  We still don't know who these other people are or how (if) they're related to one another.  Privacy issues, you know.  I hope we'll get to meet them in the hospital, but who knows?  In any case, their donor hadn't finished all of the screening yet, and he/she was officially cleared to donate in September.  So let's get going, right?

Wrong.  The wheels of big hospitals turn very slowly.  The transplant team wanted to do all four surgeries at once in their hospital.  Apparently this hasn't been done before at the University of Washington and they were very excited to do it.  The scheduling powers-that-be for the operating rooms didn't seem to be as excited.  We were told that things were busy in October, the holidays were coming, and the surgeries would be done after the first of the year.  Ok, we accepted that and decided to come to our place in Palm Desert for a couple of months.  We drove down around the first of November.  We expected to receive word with our surgery schedule within a short time.

The days went by.  I checked in every week or so and was told that the scheduling person was out, there was no word yet, the surgeon would check into it, etc., etc.  I deal with the donor side of the transplant department and Pat deals with the patient side.  They all meet together every week, though, so everybody knows what's going on.  After a few weeks of this non-information, Pat got on the phone and raised a little ruckus.  After all, he's the one who's life is on hold while he's tortured at dialysis three times a week.  How could this be all set up and yet going nowhere after all these weeks?

So last week we got our schedule.  We have to be in Seattle next Monday for pre-op appointments and surgery is scheduled for January 4th.  Due to the holidays, they won't do the usual Monday pre-op and Wednesday surgery, so we are scrambling around to get our place closed up and drive home in time for the first appointments.  Then we'll be home in the cold and rain to wait two weeks for the surgery, but at least we have a date!  We leave tomorrow morning to drive to Vegas to see our kids, then will head home Saturday morning and hope not to run into too much snow on the way north.

Fingers are crossed for a smooth trip home.  All good thoughts and prayers for getting us through this whole experience are gratefully accepted.  More later!

Wednesday, December 7, 2016

Preparing for the first day of the rest of our lives

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 transplant list through the University of Washington as soon as possible but it's a long wait.

Quite a few friends and relatives offered to be tested as living donors, but none got very far in the screening.  When I originally volunteered I was told I couldn't be tested due to the small amount of blood pressure medication I had been on.  Apparently blood pressure can go up after kidney donation and the transplant teams do everything they can to ensure that their donors will come through with as few ill effects as possible. So I was out and just had to wait with him for someone else to come forward or his name to come up on the list.  This went on for about a year and a half.

Then last spring I received a call from the transplant donor coordinator informing me that their new medical director had changed the protocol and folks like me in good health on minimal bp meds indeed could be tested.  This started a process that lasted for the next five months.  The first step was to grant permission for the UW transplant team to gain access to my medical records for the past 20 years or so.  After they were screened and I was deemed basically healthy, I had to wear a blood pressure monitor for 24 hours so they could see if my blood pressure was controlled by the medication I was on.  The results were fine.

Next came the 24 hour urine test and the extensive blood testing.  Everything looked good so I was passed onto the next step.  All of these things take time; they have to be scheduled, the tests done, and the results received and studied by the doctors.  Two days of intensive tests and interviews had to be scheduled at the UW and these were finally planned for the middle of July.  Here's what I had to do over the course of two days:
*Meet with Living Kidney Donor Patient Care Coordinator
*Meet with Nurse Coordinator
*Meet with Nephrologist
*Meet with Nurse and Transplant Surgeon
*Meet with Independent Living Donor Advocate
*Meet with Infectious Disease Doctor
*Meet with Hospital Pharmacist
*Go to lab to have blood drawn
*Have EKG
*Have abdominal CT scan
*Have chest Xray
*Meet with dietician

All these meetings and exams went well but a small cyst was noticed on one of my kidneys that needed to be looked at again.  Also, due to my advanced age :) I had to have a treadmill test.  That day went like this:
*Treadmill stress echocardiogram (where they told me I did better than the majority of 26 year olds!)
*Renal Ultrasound

I was officially approved as a donor pending the results of the two final tests and after these and a final blood pressure reading, I was okayed as of the middle of August.  Now to find out if I matched my husband.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Some knitting photos so as to reward your patience in reading this much...

Finding Nemo hat and socks for my nephew's new baby:

Weekender sweater made with The Plucky Knitter Crew:

I like the extra stripe in the back:

Yoda's sweater in progress:

Our little family Thanksgiving in Las Vegas.  A pretty good looking group!

The story will be continued before long.  Happy knitting!