when april ends...part 5

Quick Recap - At a healthy 21, "flu" became "bronchitis" became "pneumonia" for which I was hospitalized.  Later, a pulmonlogist (Dr. Weber) would make the lifesaving/lifechanging discovery that I had blood clots in my lungs.  He would then discover I had a kidney disease.  A kidney biopsy would reveal that I had Mesangial Proliferative Glumerulonephritis (a rare autoimmune kidney disease).  High doses of prednisone would instantly put it into remission. The doctor was stunned.  "It's gone" is all he could say.  I was healthy until it returned the next March.  Again prednisone would instantly put the disease into remission. Once again, the doctor was stunned.  I'm 23 at this point and have been married two and a half years.  We moved to Fort Worth after graduating from A&M for my husband to go to seminary while I teach 4th grade. 

Pay close attention because this may look familiar...
Besides being on A LOT of meds and suffering through the side effects of prednisone, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came. I knew it right away...all the signs were there...but what nephrologist would I see and how would they treat it now?

So there I was in an entirely different area with entirely different insurance.  I didn't know any of the doctors in the area.  We talked about calling my old nephrologist but were sure the insurance wouldn't cover it.  I had always had an HMO so I thought I would need to follow procedures and find a family doctor who would then refer me to a specialist.  After all, that's the way it works, right?  Apparently that's NOT how it works in a PPO. 

Like a good, rule following client, I called my insurance company to see what I needed to do and how I could quickly move up the red tape to a specialist.  "Just go on our website and pick one of our participating doctors."  That was it...really? How on earth was I supposed to choose?  So I went on and scrolled through a lot of meaningless names and a lot of different hospitals.  When you live in a large metro area, you hear good and bad about every hospital in the area.  Everyone has their opinion and everyone's opinion was different.  I was familiar with this one hospital off of I-35.  It looked "new" and they were adding to it/updating it.  I also knew I could get to it pretty easily.  There was a nephrologist listed there. 

It's a name I will NEVER forget- Dr. Yegge.  I read his bio.  He was young but looked well experienced and progressive.  I called and made the appointment.  He would be my new nephrologist...and my new lifesaver!

I remember when he walked into the exam room.  He WAS young (especially compared to my other nephrologists) and hip like Michael J. Fox in Doc Hollywood.  (This is actually how Danny and I referred to him for the longest time.)  He had a little bit of an arrogant stride as he walked in, introduced himself and said, "So, tell me what brought you in here today."

I just matter of factly said, "I have Mesangial Proliferative Glumerulonephritis.  In the past 2 years, it has been active twice and quickly goes into remission with the use of prednisone.  It's active again.  I need you to treat me." 

He gave me that "look" doctors give patients when they don't necessarily believe what they are saying and asked, "And how are you so sure you're sick again?"  There was this smirk that many would have found intimidating or annoying.  I found it endearing.  He was going to be a challenge.  I love a challenge! 

"Frothy urine.  Oh and I have albumistixs that test for protein in the urine at home.  The tests are off the chart positive again."

He just kind of rocked back on his heels and gave the well okay face and said, "How about we run an actual test here and just see!  Also, fill out the paperwork for us to get your records from your previous doctors/hospitals. Alrighty?"  I filled out the paperwork and provided him with an "actual" sample for him to perform an "actual" test on.

He walked in within minutes.  "You are right.  It's back and it's off the charts.  Lets review your medical history and see if we can get them to fax your records over right now."  We started going through the whole tale of how they found it, who found it, what they gave me and so on.  In the portion of the story where the pulmonologist (Dr. Weber) saved my life and banned the other doctors, he stopped and interrupted me.  "Do you happen to remember the name of the pulmonologist in Bryan at St. Joseph's?"

Remember, how could I forget..."Dr. Weber, why?" 

He chuckled.  "Dr. Thomas Weber?" 

"Absolutely!  Do you know him?"  I inquired.

"He trained me.  I studied under him.  I can't believe he's still around Bryan."

That was my God affirming sign.  Just as God would have it out of ALL the nephrologist in ALL of DFW that I had to choose from, I would chose the one that the pulmonologist, my LIFESAVER, had trained. Seriously, what's the probability of that.  Nope, this was a JUST AS GOD WOULD HAVE IT MOMENT that sealed it for me.  We went through the rest of the history.  He was surprised that I had the diagnosis I had considering the numbers I demonstrated.  "Please tell me you don't want to do another biopsy?"  They had warned me that if it came back again another biopsy might be the 1st step because my disease can "mutate" into other diseases.

He didn't.  He was a straight shooter.  I liked that.  "Let me be honest with you.  I have never treated this specific disease.  No one in my practice has...your last nephrologist probably hadn't treated it before either, NOT with numbers like these.  I can tell you that if it keeps coming back and we keep putting you on high doses of prednisone for 6 months out of every year, your other organs will begin to fail.  You will not make it to 30."

I didn't sink down...I leaned in.  "But I respond so well to prednisone.  Do you have another idea?"

He did!  There was another patient of his with a similar disease.  Her numbers were no where near as high as mine, but she had been on this treatment and had been in remission for 4 years and her only side effect is that she bruises a little more easily than most.  He warned me that we would probably never be able to completely eliminate the protein but bring it down to an acceptable, therapeutic level.

Just the thought of 4 healthy years seemed unobtainable.  I wanted to know more about the side effects.  He pulled it up on his PDA.  Of course now in the age of the iphone, that's absolutely no big deal...but in 2001 when all my other doctors got the dusty book off the shelf to look up side effects, it was mind boggling.  He WAS Doc Hollywood! We reviewed it together...no short or long-term side effects other then increased bruising.  Oh, and the other catch - they don't know how or why it works, just that it does.  And good news, if it doesn't work, we knew I would respond to prednisone so that could be our parachute.

Could this really be it?  I started the meds immediately.  Dipyridamole and aspirin twice daily...and a low protein/low cholesterol diet.  That was it.  No side effects. 

2 weeks passed and I returned for my progress check.  "The protein's not gone but you have dropped well into the normal, non-diseased person range."  He couldn't be more surprised or thrilled.  I, although not surprised, could not stop smiling.  I returned in two more weeks and heard the word I had heard so many times before, "Gone."  There wasn't even a trace of protein.  He didn't get it.  I did!  God had led me to him for this very purpose.  He told me that I would probably be on this medicine for life and he would need to see me every 3 months for a year and then every 6 months after that.  With no side effects and a bedside manner I enjoyed, I was more than okay with that!

Now pay VERY close attention because this may look familiar but it's NOT...


Besides taking my meds with no side effects, I was healthy through that summer. I was healthy through that fall. I was healthy through that winter. Then, MARCH came - healthy.  Then APRIL ended - still healthy. 


My check-up with him was in early May.  Check-ups made me nervous.  They still do.  There is always the chance that my blood or urine will reveal something to the doctor that I haven't sensed.


He walked in and smiled.  All was well...I sighed.  I think it was the first time he had seen real, raw emotion out of me.  He wanted to know why I was worried.


A little embarrassed, I explained, "This is going to sound ridiculous and completely out of character for me, but I have ALWAYS become sick in March and April.  WHEN APRIL ENDS, I can breathe a sigh of relief because I know I won't get sick that year."  He nodded.  It wasn't ridiculous at all.  Because my disease is autoimmune and a combination of unlucky genetics and undetermined environmental factors, it may very well be an seasonal "allergic" type immune response.  He hugged me and said, "When April ends indeed..."


Much has happened since then.  He and I both moved.  I haven't seen him since that last hug.  I have remained (sometimes at my insistence) on Aspirin and Dipyridamole.  I have celebrated my 30th birthday, and 31st and 32nd and 33rd.  I HAVE BEEN IN REMISSION FROM MY KIDNEY DISEASE FOR 10 YEARS!


Other stuff has happened too. 

That will be my next post but first let me say this:


My kidney disease has been one of the biggest blessings in my life. People find that to be a bizarre statement but I cling to that. God has used it to open doors and hearts to reach people that would be unreachable if I hadn't journeyed down this road.  More importantly, God has used it to completely change and shape and refocus me.  Here are some ways that this journey has helped me along in the process of becoming not me:

My life is not my own.  He bought me with the precious blood of Jesus and He sustains me.  It's cliche, but for me SO true.  Every day is an unexpected, unmerited gift from God.  My kidneys work solely because God wills them to work.  Although this is true for everyone, healthy people do not LIVE within that reality, people like me do.  If God bought me and sustains me, than HE must direct the path of my life not me.  And that has been a change...my natural tendency in EVERY fiber of my being is to plan and control each detail of every aspect of my life.  This disease has forced me to face the reality that I cant...I shouldn't...and the journey has led me to I won't.  Time after time after time I have planned and schemed only to have God lay HIS plans in front of me.  And every time, it is a reminder that my life is not my own but is for His glory and His plan.  In view of God's mercy, how could I say no?

I celebrate life, I do not cling to it.  I remember turning 30.  For most people, it's depressing.  For me, it was GLORIOUS!  God had let me reach the day many doctors said would never come...and I reached it healthy!  I would not have fathomed that at 21, but here it was.  Not only that, God also gave me a son.  On my 30th birthday, my son was 19 days old!  Every birthday after that has been equally triumphant.  I immediately start saying I'm the next year because getting older is something I never thought I would experience!  Life is to be celebrated but not in and of itself.  Although it is fragile, it is not the end.  We have walked that road with some friends and students. There is SO much more to the story than this life.  Phil 1:21 says For me, to live is Christ (and that should be celebrated) but to die is gain (and that should be celebrated too). (emphasis mine) I will put this here in print.  When I die, whenever that may be, I don't want anyone to wear black to my funeral.  I don't want anyone looking at my dead body (I'm not there anymore).  I don't want funeral food for my family and friends. (Carnival type food would be more appropriate)  I don't want depressing music...I want exuberant worship.  I don't want sad tales...I want ridiculous stories.  I want the beauty of the gospel to be presented and people to get saved.  I want rejoicing!  Death is not to be feared but embraced.  I wouldn't have known that if I hadn't had to come to terms with the real prospect of facing it through this disease.

I am tender to those who suffer alone.  I wasn't before.  That is a HUGE change for me.  I didn't know what it was like to long for health answers when none were there.  I didn't know what it was like to hear the words incurable.  I didn't know what it was like for the medicines that heal you to ravage your body.  I didn't know what it was like to be pitied instead of valued.  I do now. I understand the uncertainty, frustration, guilt, burden, and mental brokenness of those with serious, but specifically chronic illnesses.  Those with lifetime chronic illnesses suffer alone with their families and often in silence and isolation.  Why?  Because everyone rallies for the sprint but no one stays for the marathon...and the sufferer gets tired of asking.  It is self defeating, demeaning, devaluing.  God has changed me in this journey from a person that sprinted to the "rescue" into a person that would run the marathon alongside.     


So, when april ends I celebrate the hope of another healthy year.

Friends, April has ended! What are you celebrating?