December 27, 2016
I created the group A Tale of Two Kidneys.
How did we end up here? Mike was diagnosed with IgA Nephropathy in
2001. We had just gotten married and the future seemed so far away. They told
us then that in 15-20 years he would be facing full renal failure. Over the
last 15 years, he has met with his nephrologist every 2-6 months. Because there
is no real course of treatment for IgA Nephropathy, all we have been able to do
is monitor his kidney function and manage symptoms.
Over the past summer we were told that Mike's kidney function had
dipped down to 23% and we were advised that it was time to start meeting with
dialysis and transplant counselors.
After much research and soul searching, we agreed that it was in everyone's
best interest to see if it would be possible for me to donate my kidney to
Mike. At this point in our journey, Mike has been approved for transplant and
has been placed on the transplant list. I have overcome the first series of
tests and although there are still a few more preliminary tests before we get
the definite "go ahead", it all looks very good and we have every
reason to be optimistic that I will be able to donate my kidney.
How safe is it to donate a kidney? The surgery itself comes with risks
similar to having an appendectomy. Because donors are screened so carefully,
there is usually a much smaller risk of complications. And surprisingly, there
is no real change in quality of life or life expectancy living with only one
kidney afterward.
How long is recovery? We have been told that I would be in the hospital
1-2 days and Mike would be in the hospital 5-6 days. For me, full recovery
would be 3-4 weeks and his would be 6-8 weeks.
How soon will we be having the surgery? We are fortunate enough to have
time on our side. Mike hasn't started dialysis yet and we may be able to push
that off until summer. If so, we plan to have the surgery in the summer.
Typically full "approval" for the surgery takes 10-12 weeks and we
are over half way through that timeline. Once approved, the approval is good
for one year. Patients with kidney disease have better long-term transplant
success when they avoid dialysis and receive a kidney from a living donor.
We are so grateful to have so many people thinking about us and
offering to help us as this possibility grows closer. Right now, I'm not
exactly sure what we need, but we are trying to get the logistics sorted out.
It's a little terrifying to think that BOTH Mike and I will be in surgery at
the exact same time and that we will be recovering at the same time as well.
Trust me when I tell you that I will definitely take you all up on your offers
when I have a better idea of the what and when. For now, please keep us (and
our kiddos) in your prayers. Things are going well, but it may get a little
rough before it gets better.
December 29, 2016
Me: - I have to tell you that I'm a little overwhelmed by the response
we've gotten from this page. I promise I won't over-post things on here, but I
wanted to take the time to thank you all for your prayers, encouragement and
offers of help. You have no idea how much it has helped. You all are amazing
and very, very much appreciated! The next step in our process is another day of
testing for me at Barnes. It's January 25 and it will be a long, boring day of
non-invasive tests. There will be more bloodwork and they have to do things
like check and make sure that I have 2 kidneys that function at about the same
effectiveness. There is also transplant counseling - but I'm not worried about
that part - it seems the bulk of that is making sure I am aware of what surgery
will be like and to assess what kind of support system I have. And as this page
(and many other texts and calls) will attest - I think I have a pretty good
support system. I will update you all probably the day of testing when we find
out more information, but as my transplant coordinator told me, it is
reasonable for us to be planning on surgery for sometime this summer. Thanks
again! :)
January 17
Me:- Today Mike met with his nephrologist.We have been with her for 15
years. He told her where we are in the transplant process and that we are
looking at scheduling the surgery during June or July. She said that as long as
things go as planned, that May will be the last time he meets with her. It's a
strange feeling that he won't see her anymore. Apparently we will follow up
with the transplant team after that. It's a very good but a very strange
feeling. I don't think either of us has kept any physician that long before. My
next day of testing is next week. I'll update more then.
46 Likes
January 25
Me: - Today Mike accompanied me on what is hopefully my last hurdle to
becoming his kidney donor. Tests, blood work, interviews, consultations etc. We
will find out the results of the tests and the team's recommendation on
Wednesday. For now I am thrilled with finding out that I do indeed have two
kidneys! Apparently 1 in 500 people are born with only one kidney!
47 Likes
February 1
Me:
Good news. We got some results back. My kidneys work great and are
fairly similar sized, but their output difference is just outside their
ultra-conservative parameters. So...that means a couple more tests. They still
believe I will be able to donate, but they will leave no stone unturned making
sure this will not diminish my health in any way. I am very grateful for that
but I just really want that seal of approval so I can move forward!
58 Likes
February 3
Me: - I opened up this group a little more. Part of me wants to make it
open to both our pages, but I think I'm still a little too worried that we
won't be approved. If you were just added, take a look at the photo album and
the pinned post at the top of the page and it should explain things in detail.
6 Likes
Me: - More good news. Another test came back with desired results.
However, another little glitch came up. So I'm back up to waiting for three
tests to be completed and their results. My coordinator said Mike passed his
evaluations in record time, so it's just by comparison that mine seems to be
taking forever. Patience isn't my best quality.
24 Likes
February 4
Me: - I forgot about this! I walked to raise money for kidney research
for a friend's team 6 years ago. Technology has really made this process so
much more effective. She received her kidney in 2012. They still celebrate her
kidneyversary :)
44 Likes
February 20
Me: - Back at Barnes doing two more tests. Let's hope they like what
they see. Again, these tests are not because they are concerned about my health
- just my statistical likelihood of having future problems.
37 Likes
February 21
Me: - It's official! I have been approved to donate my kidney to Mike!
It's been a long time coming. 15+ years that I've been hoping that I could
somehow make this happen and it's finally a reality! Surgery will be late May
early June.
148 Likes
March 1
Me:- Well, it's official! Transplant is scheduled Thursday May 25. Not
ideal because I have 8th grade graduation the night before for my students, but
it's the best time to allow for enough recovery time before school resumes in
August.
128 Likes
March 26
Me:
2 months to go.
70 Likes
April 11
Me: - I wrote this 7 years ago, but I think it explains better than
anything else, how we got to this point. It's not some enormously selfless
thing I'm doing. It's just who we are.
SATURDAY, JUNE 5, 2010
Remember
Married love is different kind of pining. It's made up of laundry and
yard work and buying time with each other. Not grand sweeping gestures. Just
small ones. Very important, but very small gestures.
Married love is not what you expect. It's keeping up with the thread of
time. Watching your own reflection in the eyes of another fragile human being.
Watching your strength and your weaknesses ebb and flow. Seeing all the
possibilities and all you stand to lose.
Living the good life because it's where you keep your heart. No matter
what comes, it's keeping that sanctuary alive. It's the very thing you keep it
alive for. It begins and ends all your dreams. But all the while you know, you
can't possibly put all of your energy in one single place like that. The What
If looms...
And we live and we learn. And we sleep and we wake and we remember. It
takes just a moment. Just a glance, but we do remember. The Why. And in the
end, The Why is what makes the What If so crippling.
It's like a dangerous, delicate dance. It terrifies you if you give it
much thought, because it's the kind of thing you wouldn't throw away over an
argument of pride. It's the kind of thing you realize you have no pride in the
face of. How do you protect yourself against that?
In short, you can't. You can only love. Truly love and trust that they
won't forget you. That they won't outgrow you. That they won't go where you
cannot follow. Taking your heart with them.
It's not what you expect. How could you? It's like watching your life
in IMAX, tinted in love, filled with hope and echoing in your own ears.
Shinning with a light too bright to stare at directly.
And in the end we do what we always do. We begin to see our miracles as
part of our everyday. Flowing from week to week, year to year. Rarely slowing
down long enough to see then for what they really are.
But sometimes, we see them. It takes just a moment. Just a glance and
then we remember.
That's when we start pining.
April 20
Me:
5 weeks to go. Hanging in there.
69 Likes
April 23
Me: - The only time I stayed overnight in the hospital before was when
I had my girls. I have this packing list started in my mind. And so far have my
own pillow and DVD movies because that's what I brought with the girls. I'm
bringing all my therapy movies: The Big Chill, Stand By Me, Heathers, and
Shawshank Redemption because that's our movie. Just curious what your
"woobies" are?
18 Likes
April 27
Me:
4 weeks left. We are at BJC today. Mike is doing his first infusion to
ready his body for the non-compatible blood type transplant (ABOi). I am
getting a few more tests done. Mine are all repeat tests, they just do them
again within 30 days of the transplant. I will also get to meet with my surgeon
today to do our consultation. It's really happening! :)
98 Likes
April 27
Me:
About an hour left and we get to go home. Thought we'd spend so much
time together but I've been out most of the day for appointments in other parts
of the hospital. BJC is enormous.
118 Likes
May 10
Me: - We have been blessed again. Our girls' school-district shutdown
two days during the flooding. That difference was going to mean that instead of
being out of school the day before our surgery they would both be taking finals
while we were in surgery. If you know our girls, you know how much the thought
of that was stressing them out. Of course we would have let them decide what
they wanted to do but I'm so glad we don't have to. Mehlville School District
applied to the state of Missouri to have those two days forgiven. Missouri
granted that request and now our girls are going to finish on the 24th and they
can be with us on the 25th without having to worry about school. So grateful.
15 days left.
80 Likes
May 15 (photo)
Me:
It's not much longer (but only if you count in days and not by my to do
list ;)
43 Likes
May 20 at 12:19am
Me: - Yesterday at work I got my last phone call from my transplant
coordinator. It's always an emotional roller coaster hearing from her. Her
phone calls have brought happy tears and sheer panic. She was calling to tell
me everything looks good and she just had to fulfill one last
disclosure/consent requirement. Today marks the 5 day countdown. The next time
I speak to her, I will be shy 1 kidney. So grateful for her, the entire transplant
program and for our incredible support system here. You all are amazing!
101 Likes
May 23 at 6:28am
Me:
48 hours left.
82 Likes
May 24 at 8:44pm
Me: - These small hours, these little wonders, these twists and turns
of fate, still remain. Goodnight my friends. Tomorrow morning, bright and
early, I'll be giving Mike my left kidney, but that's ok, because he already
has my heart.
126 Likes
May 25 at 6:55am (photo)
Samantha Gindler with Mike and Me:.
Almost go time
208 Likes
May 25 at 8:26am
Samantha Gindler
They've started mom's surgery and dad was just taken back.
104 Likes
Cyndi Wagner Manning Me:, Samantha Gindler, pups are all taken care of!
We walked at 8 and then I brought my girls over to play with them around 9:30.
They should be worn out for a bit :)
Hope all is well!!
May 25 at 11:08am
Samantha Gindler - The surgeries went well, they should be in recovery
in around a half hour and they should be in their rooms in a few hours.
167 Likes
May 25 at 3:38pm · St. Louis
Gina - Surgeries went well. Chessie is in her room and settling in
well. (And, she says she has a good view). Still waiting for Mike to get his
room, but expect it to be soon.
27 Likes
May 25 at 3:57pm · St. Louis
Gina:- Mike has a room now and is getting settled in. So far,
everything is going well for both.
38 Likes
May 25 at 7:30pm (photo)
Me:
Feeling so much better than I thought I would and Mike looks great!
196 Likes
May 26 at 7:33am (photo)
Me:
All is well...
167 Likes
May 26 at 9:22am
Me:- Saw my surgeons and they are happy with my progress. If everything
continues like this, I will be home tomorrow.
132 Likes
May 26 at 10:27am
Me:- I just got to see Mike face to face. He looks so good! 10 years
younger, excellent color! We are so blessed.
153 Likes
May 26 at 2:34pm (photo)
Sam- Mom and Dad are doing well, mom's up and walking and is in good
spirits. Dad is looking great as well!
145 Likes
May 26 at 4:38pm
Me: - My nurse for the evening donated a kidney to her brother 10 years
ago. How great is that?
115 Likes
May 27 at 6:47am
Me:- Mike is in a regular room now 5 down from me. I walked down here
and we're hanging out like we do at home. Oh and also, something just occurred
to me. Mike now has a Catholic kidney!
107 Likes
May 27 at 2:15pm (photo)
Sam with Me:.
She gets to come home today!
204 Likes
May 28 at 4:57pm
Me: - If you're interested in seeing how large the covered incisions
are, look in the comments.
12 Likes
Me: It's amazing to me how small they are.
Me: I was under general anesthesia but he attached a pain ball which
fed lydocane directly to the wound. It really seemed to help although I
May 29 at 3:58pm
Me: - Mike's progress is not going as hoped. His new kidney is doing
great, but he's needed 2 pints of blood and may need a 3rd. Because of this he
isn't expected to be released tomorrow. They did a CT but did not see evidence
of internal bleeding. Unless they see something on a scan all we can do is wait
and see. It's totally likely this will all just work itself out by tomorrow.
Kidneys like a lot of blood and it could just be the new kidney hasn't started
producing the hormones to up blood production yet. Strange explanation, but
that's what we've got. For all my friends who have been praying, keep it up a
little bit longer. Thank you!
57 Likes
May 30 at 1:09am
Mike - I haven't posted on here yet, since Me: (my kidney hero) has
taken on the job of keeping everyone informed. She is awesome, and she is my
rock. I've had a minor setback today, and it has had me feeling down. I can't
sleep, so I'm sitting up looking at the city from the 16th floor. The James S.
McDonnell Planetarium is beautiful with the lighting at night. The lights off
the city are mesmerizing, and I'm feeling better knowing I will get to enjoy
the city lights and many other things for years to come thanks to my doctors,
nurses, and especially my incredible wife. Thanks to all of you that have
followed along on this journey with us and offered support in so many ways. It
has been a tremendous help. Sleep well my friends.
113 Likes
Me: I hope you are sleeping by now-, but if you're not, call me. Either
way, thank you for posting this. It makes me feel better knowing that although
I think of you affectionately as Walter Matthau from Grumpy Old Men (get off my
lawn!) that you have the heart of a poet and that you do enjoy the little
things. Glad you sound a little better. I love you baby. We will get you home soon.
May 30 at 5:40pm
Me: - Update on Franchesca: I'm feeling good now. Mostly feels like a
"stitch" in my side from running. Nagging but not horrible. It's
probably that 12th rib that they sawed a few inches off of. I'm just using the
oxycodone at night so I can sleep because it's hard to be comfortable for that
long without it. But with it I'm able to do like 11 hours total so I have
nothing to complain about. In addition to that I've been taking 2 hour naps in
the afternoon. So, basically, I'm on a toddler's schedule :) Otherwise I'm fine. Just taking Tylenol
during the day. Today I didn't get my nap and I got whiney- like a toddler.
96 Likes
May 30 at 5:52pm
Me: - Update on Mike: We are optimistic that he will come home
tomorrow. He had an Upper GI and we discovered that his glitch was several
bleeding ulcers in his intestine that are likely due to the anti-rejection
protocol. Knowing this, they will adjust his protocol and they will add Pepcid
to his meds. They also put in a Hohn Central Venus Access Catheter (Central
Line) because he had problems keeping his IVs working. AND,...... He gets to
EAT dinner again! So he's thrilled. So glad the transplant team is being super
cautious and making sure he's getting everything he needs. I cannot say enough
good things about the BJC Transplant Team!
119 Likes
May 31 at 4:46pm
Me: - Update on Mike: Mike does NOT get to come home today. We are a
little sad, but we're happy that Barnes is being so super careful with his
health. They aren't happy with his hemoglobin and they are concerned he might
still be bleeding. They will do another (more thorough) upper endoscopy
tomorrow as well as a low endoscopy. Hopefully they can get this figured out
tomorrow and we can start making plans to get him home. Thank you all for your
prayers and concern.
70 Likes
Me: I feel really good today. Completely off pain meds and I am getting
ready to go for a walk with my mom's walker. Yes I really am going to walk
around my block with a walker
June 1 at 11:54am
Me: - Update on Mike: Mike's hemoboglobin stabilized overnight. Because
he had already prepped for the upper and lower GI, they went ahead and did them
this morning. Nothing new to report. One "sore" looking spot in the
lower GI, but no active bleeding. It will still be a wait-and-see thing for
now, but it's all good! Plus, he gets to eat!
:)
114 Likes
June 2 at 9:14am
Me:- Update on Mike: We are waiting on the noon labs to see if Mike can
come home today. I love Barnes and I love how cautious they are, but we are so
ready!
67 Likes
June 2 at 2:59pm
Mike shared a link.
Coming Home
21 Likes
June 2 at 8:24pm (photo)
Me:- He's home! All is right with the world :)
223 Likes
June 2 at 10:21pm
Me:
It's such a crazy beautiful strange thing to express, but even with the
aches and pain and medicines, lying next to him, I can just hear, smell, see
how much healthier he is. I think it's finally hitting me that my healthy body has
healed him. Transplant is not a cure, it's a lifelong commitment. He will
always take medicine. He will always have to follow protocol and restrictions,
but it undeniable that it has totally changed him. So grateful I get to listen
to his healthy breathing and smell the clean smell of his skin. I can even
reach out and hold his warm hand if I would like. Not a traditional version of
perfect but this is a really good imitation of it.
134 Likes
June 8 at 2:03pm
Me:
Mike really missed the folks at Barnes. He was having some symptoms and
the team recommended he come back in to be careful. He's getting IV fluids and
blood and he will be here overnight. Prayers and positive mojo appreciated.
68 Likes
Me: Ladies, I think the grad parties are probably a no-go. I have a
stack of grad presents on my piano :(
June 9 at 8:34am
Me:
Mike has an elevated potassium level and a slightly raised creatinine
level. Kidney team is all over it. The big problem is that he continues to have
sporadic bleeding in his GI tract. They've given him fluid and blood and he
looks great. Now it's just up to the GI team to figure out what is going on.
Please keep saying prayers (and maybe say a few for his nursing staff
73 Likes
June 9 at 3:34pm (photo)
Me: - Hanging out with Daddy. Still waiting on tests. Might be here
through the weekend.
93 Likes
June 10 at 3:52pm
Me:- This is my current view. We're all a bit tuckered out but our
favorite floor is taking good care of us. His most recent test looks good
(small bowel follow through). He's going to be hanging out here tomorrow and it
looks like more tests on Monday. Feeling crummy again but we're glad he's here.
61 Likes
June 11 at 8:17am
Me: - Words can't really express how grateful we all are for the
support we've received from you all. For me, the last 6 months have been pretty
dark. My mom was very ill for the last few months of her life and then she
passed in February. By then, we were already working toward the kidney
transplant for Mike. So much of this process is very solitary: tests,
bloodwork, interviews, etc. My coordinator has been amazing and did quite a lot
of hand-holding with me, but in the end, it's easy to feel all alone
(especially in the midst of my mother's illness). Add my grief to that, along
with Mike becoming very ill right before surgery, and the before was pretty
exhausting. Since the surgery, I've experienced a million different emotions,
most of them have been very good, but waking up without Mike here is one of the
emptiest feelings I've felt. Empty trumps exhaustion. I know I'm a strong
person, but I really don't know what these days would be like right now without
all the support we've received from you all - not just those on this page, but
from the least expected places. The countless prayers, texts, emails, messages,
calls, cards, gift cards, meals, kid-transport, dog walking, house cleaning.
And this doesn't even begin to address everything that my family and my best
friend did for my kids during and immediately after the surgery. This support
has helped me out in ways you could never imagine. So even if you get a very
short or generic thank you card from me (and even if you received one for
someone else! - sorry I was still on oxycodone when I started writing them)
please know how much you have helped me and how much your "simple
gesture" continues to impact me and mine.
66 Likes
June 13 at 9:09pm
Me: - Still waiting on answers. Poor Mike is slowly learning the art of
patience in medical care. At this point they've done another lower GI, a bowel
follow through (to see the space between where the upper GI and the lower GI
can view), a capsule camera, another CT scan and somewhere around 8 or 9 pints
of blood. They have to skirt around methods that could damage the kidney, so
they are careful and there is a lot of conferencing among the teams of
specialists. It all takes time. The good news is that most of the time Mike is
feeling pretty good due to the transfusions. Thanks for all the continued
support.
89 Likes
June 14 at 8:28am
Me: - Preliminary results from all of the tests are negative. They are
going to conference and see if anyone has any other ideas, but they are running
out of tests. They will most likely observe Mike one more day to make sure
blood counts are stable and then release him tomorrow. Personally I'm still
hoping for something more definitive.
47 Likes
June 14 at 11:42am
Me: - For those asking to donate blood for Mike: (the response I
received from Mike's coordinator) The Barnes Blood Bank or Pheresis department
does not collect blood anymore. So you would have to go through the Red
Cross(Special Donations Department). They would collect the blood from the
donors then process it(which could take several days), then they would send it
to Barnes Blood Bank. The Blood Bank would keep the blood for the designated
receiver only while that patient is inpatient. Once they are discharge from the
hospital the blood would go into general population.
15 Likes
June 16, 2017 10:08pm
Me:- With the bumps in the road, and our ever vigil eyes on his
bloodwork on mybjc.com, it's not possible for either of us to really relax
right now, but 24 hours home and one thing is very very clear. Mike is in
better shape than he's been in several years. I still marvel at it. I'm not
sure how long it will take before I get used to it, but I hope I never take it
for granted.
80 Likes
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