Update #2 - 27 Jan, 2200 - Edwards AFB, CA

Karen is doing well.  She is feeling better since the last update.  Her headaches have completely subsided, but the heart palpitations are ongoing, although much less.  Today she saw the cardiologist who hooked her up to a heart monitor "halter".  It's a contraption that's taped to her chest.  She can wear normal clothes over the halter, but it's big and bulky.  It looks like she's either looking for a game of laser tag, or has part of a transformer costume underneath her clothes.  Either way, it's awesome.  She gets it off tomorrow afternoon (sts).

As mentioned, Karen and her mom are taking part in the Kidney Exchange at UCLA.  The following web page will clear up most questions, although Barbara's comment on the "background" post was spot-on.

http://transplants.ucla.edu/body.cfm?id=112

Karen's transplant is still on for 15 Feb, although her mom may not donate her kidney until 25 Feb.  The recipient of Karen's mother's kidney has unexpectedly become ill.  So ill in fact, that she can not accept a kidney on 15 Feb.  It makes me so sad.  So sad to know that with the drop of a hat, a person's condition can change so much that they cannot accept a life saving procedure.  The woman, whose name I do not know, is certainly in our prayers.  I ask she is in yours too. 

So, Karen's mom will be donating her kidney 10 days after Karen's transplant.  Usually, UCLA will NOT do the exchange program on different days, as they do not want to take the chance of someone backing out of their promise to donate.  In the case of Karen's mother, they trust her commitment to giving the gift of life, even to someone she has never met.  They see, as I see, her wonderful heart.

Speaking of wonderful hearts - thanks again to Tammy for making a wonderful spaghetti dinner following our trip to the ER.  We love you Tammy!

FYI - I think I posted an RSS feed.  I don't know what an RSS feed is, but a friend of mine that doesn't speak much English requested it.  I think the feed can be downloaded to a reader, then translated into a different language.  Enjoy, Jose.

Thanks for all your notes of encouragement!

-Bob

Update #1 - 25 Jan, 0030 - Palmdale Regional Medical Center

All is well, although I write this update from the side of Karen’s bed in the Palmdale Regional Medical Center’s Emergency Room.  Long story short…last week Karen complained of heart palpitations and a headache.  On Friday she had a CT scan and a “lumbar puncture” to test for blood in the cerebral spinal fluid.  Both were negative, but unfortunately she developed a “spinal headache”, associated with the lumbar puncture.  This same scenario happened while in Texas quite a few years back.  The treatment was to get a couple bags of IV fluid, then a bit of rest. 

She just emptied an IV bag, and the ER doc is signing her release paperwork.  A day or two of rest and plenty of fluids, and she should be good as new.  Or at least as good as someone in end-stage renal failure who is soon to have a kidney transplant.

Speaking of which!!!!!  On our way down to the ER (40 minute drive) Karen received a call from her transplant coordinator (Suzanne).  The date they decided on for the transplant is 15 February 2011!  Three weeks away.  Holy crap.

Special thanks today to Tammy Thomas, who picked Lena up from school after Karen and I left for the ER.  Also to Jen and Moneyshot Beich who not only fed our children at their home this evening, but to Moneyshot as he broke into our home at midnight (with a ski mask) to ensure Lena would sleep with her big brother so she wouldn’t wake up scared (since mommy and daddy aren’t home).  I thought it wonderful to find out that Austin was still up reading, as he didn’t want to fall asleep in case Lena woke up.  What a good brother.  As far as our parenting goes, we could probably do a bit better.  Oh yeah, and get a freakin’ home phone.

-Bob

Background

Karen was diagnosed with Polycystic Kidney Disease (PKD) shortly after her father passed away from complications with the same disease.  She was only three years old.  Her young mother was left to raise Karen, knowing that one day Karen would have to fight her own battles with the disease.  And here we are, only weeks away from a kidney transplant. 

Childhood

After being diagnosed with PKD, Karen lived a completely normal childhood, with the occasional doctor’s visit to see a Nephrologist (kidney specialist).  During her teen years it was noted her specific form of PKD was a very aggressive one, attacking Karen’s kidneys more quickly than the “normal” strain.  See www.pkdcure.org for information regarding the disease.  In fact, the aggressive form of the disease (which affects her the same as it did her father) has caused her kidneys to grow to the size of footballs (10-12 pounds each – compared to ours being the size of our fist!).  This was the size of one of her father’s kidneys when he had it removed in his early twenties, just a few years prior to passing away.  George Michael Thompson, Karen’s father, died from when an aneurysm hemorrhaged in his brain.  Unfortunately, doctors did not know then, what they know now about PKD.  Clearly with the knowledge gained through research studies has greatly improved the care of PKD patients.

Sheppard AFB, TX

When I met Karen in 1999, she had a two-and-a-half year old boy, a Z-28 Camaro, and 70% kidney function.  I was hooked!  I was commissioned in the Air Force at the end of 1999, left for pilot training (in Texas) in mid-2000, and was joined by Karen and Austin in 2001 after I tricked her into marrying me.  Since then I have dragged her around the United States, greatly complicating her medical care, but somehow everything has worked out better than we could have ever hoped.  We have many people to say “Thank You” to along the way, but it’s first fitting to acknowledge all of the Air Force Flight Surgeons (Flight Docs) that have ENSURED Karen had world-class care, even though we were not stationed in world-class locations.  In general, the Flight Docs would take a quick look at Karen and say “Well, we’re not taking care of you here.  Do you have a doctor in mind?”  The Flight Docs helped us navigate the Air Force insurance (TRICARE) program to make possible doctor visits to preeminent PKD research doctors whenever possible.

While stationed at Sheppard Air Force Base in Texas, Dr. (Captain) “Rusty” Gore not only went out of his way to make sure Karen was taken care of anytime she had a minor complication, but also enabled us to be seen at the University of Oklahoma’s renal care center.  There, Doctors Haragsim and Cowley cared for Karen, and provided much of the inspiration for her to earn her Undergraduate Degree in Molecular Cellular Biology.  A degree she earned so she could better understand the disease which afflicts her, and that which took away her father.  We left Sheppard AFB in 2005.  After many ups and downs, Karen’s kidney function was approximately 60% upon our departure.

Luke AFB, AZ

We arrived at Luke AFB in the summer of 2005.  It was 117 degrees the day we arrived and Karen was six months pregnant.  Ouch.  On 9 September 2005 we were blessed with a beautiful baby girl, Lena Marie Ungerman.  Following the pregnancy Karen’s kidney function dropped to approximately 40%.  As if this wasn’t bad enough, in October Karen began to complain of a constant dull headache that she had since Lena’s birth.  Karen was worried of an aneurysm, as this is what took her father’s life years before, and is related to the progression of PKD.  Initial tests ordered by base doctors came back negative.  She felt she was not properly tested, and raised her concerns not to the specialist, but to another outstanding Flight Doc, “Snapper”.  Snapper ordered a more accurate (higher resolution) CT scan.  In November, her doctor notified her that they discovered a brain aneurysm, which would require surgery.

Another huge thank you has to go out to Lt Col Scott “Rolls” Pleus, who was my squadron commander at the time.  He called me at home the evening we received the difficult news, and told me, “Don’t come in to work tomorrow, the next day, or the rest of this week.  If you can make it back sometime this month, that’s fine, but it’s not your job right now.  Your job isn’t to come in to check the schedule, your job isn’t to open books to study (I was learning to fly the F-16), your job is to take care of your family.  Once you’ve done that, and your wife is taken care of, come back to work.”  Seriously - How great is that? 

Once again, the Air Force Flight Docs ensured we received world-class medical care, sending Karen to Dr. Zabramski.  People travel from all over the world to see Dr. Zabramski, who recently provided care for Brett Michaels (yes, THE Brett Michaels from Poison) following his aneurysm a year or so back.  Karen’s brain surgery went as routine as brain surgery can go.  No complications, five days in intensive care, another couple days in “regular” care, then back home.  In the weeks and months that followed, Karen made a full recovery from the very thing that took her father at such a young age.  Thank you modern medicine.

Hill AFB, UT

We left Arizona and arrived at Hill AFB, Utah in April of 2006.  Karen’s kidney function was approximately 45%.  Again, I cannot say enough of how the Flight Doc’s have gone out of their way to help.  “Rock” Ewing, at times, seemed as though he was Karen’s personal physician.  Always taking calls from her whether he was on-duty/on-call or not. 

Some excitement happened for Karen when she got very sick in the winter of 2008.  Testing at the University of Utah revealed her kidney function had dropped to slightly below 20%, then settled around 22-24%.  Yikes.  Unfortunately, I was in Iraq at this time.  This sudden drop in kidney function prompted the doctors to refer Karen to the University of Utah transplant team.  They guessed the transplant would happen within one year.  Unfortunately, I had an assignment which would assign me elsewhere during the impending transplant.  Again, there were some key AF leaders that truly made a difference in our family.  Lt Col “Bluto” Izzi and Col “JR” Langford went to bat and were able to delay the assignment.  Fortunately, the transplant did not come that year, but it was another example of Air Force people going above and beyond to take care of their fellow Airmen’s families.

Remember that young mother that was left to raise Karen?  That young mother is Barbara Ann Smith, and she is an angel.  She lived her life knowing that she would one day give a kidney to Karen.  When doctors said it was time to start testing, Barbara didn’t hesitate.  Following months of testing, doctors informed us that she was a match!  What glorious news.  Better still, Karen’s kidney function was maintaining steady at 20ish%.  We left Utah and travelled to Edwards AFB, California in November of 2009, kidneys huge, but hangin’ on.

Edwards AFB, CA

An assignment to Edwards AFB was truly a godsend.  Located 98 miles northeast of UCLA Medical Center, it enables Karen to be under the care of the university’s world-class physicians.  The past year has brought numerous ups and downs, with kidney function dropping as low as 13ish%.  The UCLA medical care has been top-notch, but unfortunately requires a two-hour drive.  Small price to pay for piece-of-mind.  Karen’s mother was retested, and again proved a “match” to Karen, more accurately, the doctors termed her a “half-match”. 

I don’t know the true meaning of a full-match versus a half-match, but here’s how I understand it: a half-match is perfectly acceptable as a donor, but if Karen receives a half-match kidney, it has a slightly higher chance of being rejected, and Karen would need to take more medications following the transplant.  Bottom line though, it is still the gift of life.  To make a good thing even better, Karen’s transplant surgeon, Dr. Veal, developed a program called the “Kidney Exchange”.  Basically, Karen and her mother get placed into a database as a “pair”.  The nationwide database looks for another pair that matches that of Karen and her mother.  Matches…yet opposite.  Meaning Karen would be a “full-match” to the donor of the other pair.  And Karen’s mother would be a “full-match” to the person needing the kidney in the other pair.  Brilliant!

Last month we received news that Karen and her mom have been matched to another “pair” somewhere in the eastern United States.  Since then numerous blood tests have been accomplished to ensure everyone is healthy and a match.

Which takes us to today: