Background Part 3: In Search of an Answer

It’s hard to explain everything a person goes through when bringing an infant home.  You have done everything you possibly can to prepare for this event but it is and will be never be enough.  At least not for the first.  Everyone is giving you advice, which all conflicts with each other.  You are barely conscious because there is no such thing as sleep anymore, and when you are awake you have to give your complete attention to this new little helpless being, and you have to do it with a smile!  I feel like that first two months, where everything is really just cloud covered, is a bit like what insanity feels like.  Combine all that with kidney stones and stress of the unknown and you have helplessness.

About 1 week after my daughter was born the pain in my back returned with a vengeance! I had never felt anything like this before (something you will hear me say frequently as my story develops).  It started high up in my mid back on the left side and felt as if someone has just stabbed me in the back and was moving it around.  A few hours later as the movement started it was like someone was scratching my insides with very sharp nails combined with a pressured feeling in my side.  I went to my doctors office keeled over in pain begging for the nurse to hurry and get the doctor because I couldn’t take it any more.  I was screaming crying in this tiny little doctors office.  You would think people would be rushing in to care for me but they put me in a room and left me there for about 20 minutes still screaming and crying.  I was too pre-occupied with the pain to even know to question what the hell they were doing just leaving me in the room like this!  The nurse came in and said I needed to provide a urine sample as they thought I was passing a kidney stone and needed to check for blood in the urine.  I limped slowly and pathetically over to the bathroom with the plastic cup in my hand.  Mind you I was still recovering from a C-section as well.  I provided my sample filled with brown specimen indicating I had blood in my urine.  As I walked back to the room, feeling a tiny bit better I handed the nurse the cup.  She took it and a few moments later I hear her say “holy shit”.  I turned around as she walked in my direction and proceeded to show me I had passed an extremely large kidney stone into the sample cup!  haha.  Mystery solved!  I figured it was the stone from my pregnancy.  They gave me some meds to help with the residual pain and to help with infection and sent me on my way.  I was so relieved to get home and lie down and sleep off everything I had just experienced.  That didn’t happen!  But I didn’t care. I was elated to have all that behind me and I could return to my normal routine and enjoying the company of my precious girl.

Over the next six weeks things were hectic to say the least.  I kept getting nauseated and my urine was red and pink all the time.  I was straining as per the doctors orders and on several antibiotic treatments.  I had good days and bad days.  As soon as the pain started up in my side again I knew what was happening.  Some stones took only a few hours to pass, others could take up to two days.  I was in and out of the ER for stones and in and out of the hospital for kidney infections.  I passed 12 stones in the 6 weeks after Isabella was born.  There is no other way to describe it other than miserable.  In a small way I am glad it happened during that 6 weeks since I can barely remember it thanks to sleep deprivation.  Lucky for me she started sleeping through the night about 10 hours by 10 weeks!  What a great kid!

By week 7 obviously I was well aware this wasn’t normal and needed to go see a kidney specialist (nephrologist).  I went to one who proceeded to do a CT scan with contrast.  He said I had a few stones but that’s it, it’s completely normal to get stones and there was nothing they could do.  Huh?  really? I didn’t know any better at that time but I knew this wasn’t normal and I certainly do not accept anyone telling me there is nothing they can do.  I went to another specialist.  He did the same scan and a cystoscopy (A scope into the bladder) and gave me the same diagnosis.  Ok… maybe their right.  Maybe it’s just my hormones and I just need to adjust my diet and cut out salt.  I went to another Nephrologist who tested my stones.  He said I made 3 types of stones.  Calcium phosphate, calcium oxalate and calcium dihydrate.  Calcium phosphate is typically hormonally related, but the other two can be dietary.  Oxalate is the most common kind of stone.  He looked at my previous scans and agreed nothing was wrong.  But here’s the kicker.  I still had stones, my infections wouldn’t go away and neither would the pain.  What do I do about that I asked the doctors?  Each one suggested some pain medications but told me kidney stones do not cause pain unless they are passing down the ureter.  I believed them.

I am extremely persistent and I don’t know what it was that drove me to keep going to doctors but I wasn’t giving up.  Something told me this was not normal.  This was not hormones, something was wrong with my body.  I couldn’t explain it.  I just knew.  That and I am sure my mother was pushing me to figure it out as well.  It was bad enough to see me going through this with a new baby, but to see this happening and not be in the same state was probably very stressful. My primary physician who also delivered my baby and saw me through my pregnancy agreed.  He had been caring for me during my hospital stays for infection and stones and didn’t think this was normal at all.  He was surprised to see the nephrologists were just shrugging all this off.  After 7 different nephrologists I was ready to give up.  I was back in the hospital with an infection and my doctor was equally fed up.  He came to me and told me he had been talking to a few colleagues, and asked if I had heard of the Mayo clinic.  He told me to give them a call and gave me a contact number.  When I returned home I immediately called.  They could schedule me in two months and I needed to plan to be there for a week.  I would need to make hotel reservations and they gave me a few names that provided patient discount.  I would be mailed an itinerary (this was before everything went electronic).  The itinerary I would find later would be back to back doctor consultations, scans, blood tests, 24 hour urine tests etc.  I couldn’t’ wait.  It worked out nicely as we would be moving to Iowa 1 month before the appointment.  I would only be 5 hours away!  That was about the only good thing about moving to Iowa for a year (no offense to anyone in Iowa, but seriously..).

I gathered my large files of doctors records, discs with scan images and radiologist reports, extended family history documentation, symptoms, timelines, lists of medications and surgeries, etc.  The Mayo clinic needed all of this in advance to review my file and determine who I needed to see.  It was time to head to Rochester.  I have a bad memory but I think I knew someone outside of the city and stayed with them the first time I was there.  I remember driving back and forth to someones house.  I was nervous. when I arrived.  The whole place is pretty intimidating but fascinating.  I had never seen a more perfectly run medical operation.  The Mayo clinic takes up a large part of the city.  There are underground tunnels to everywhere so that in the winter you do not have to set foot outside.  I was sent a map with my packet from the Mayo clinic that also included information on doctors, history of the clinic, and tons of other details on places to visit, eat, etc.  My appointments started the next day, my final appointment on day 4 would be the results appointment with their top nephrologist.  I’ll never forget the name.  Dr. Erickson.  I did every test you could think of.  Waited in countless rooms and like clock work was called in right on time according to the itinerary.  The place was packed.  Each hospital, each blood center, each radiology department.  Everyone from all points of the earth was there for the same reason.  Diagnosis.  I was shocked.  How could this be?  People wore masks, carried around IV’s, backpacks full of documentation, wheel chairs, had family members escorting them around it was fascinating, but sad at the same time.  I was mostly in awe the entire time I was there.

One of the days at the infusion center I met a girl about my age.  She was from the same State I was from in a city about 5 hours away.  I was excited to meet someone, especially as she was well versed on the entire place.  She put a lot of things into perspective for me.  This girl was my age, went to a top rated school in my state, and a few years before had a medical issue.  Things progressed quickly and were severely life threatening.  She came to the mayo clinic who had an unusually rough time diagnosing her, so she knew it would not be good news.  She ended up having a disease so rare that only 2 other people in the world had it and they were twins (in Sweden I believe).  This diagnosis would require infusions every week.  She would be very limited in activities and require constant supervision.  She had to move to Minnesota and buy a house right by the Mayo clinic.  I couldn’t believe it.  She assured me no matter what, Mayo will get you a diagnosis.  I felt immediately better about my situation and about day four.  The girl and I kept in touch for a few years, but fell out of touch.  I think of her often and hope things are going ok for her and hopefully have improved… I always remember her being so optimistic even in her situation.  I have have always been a happy person (at least I think so) and try to maintain the same level of optimism as best as I am able too.  It’s one of the best things you can do as a person with a chronic illness.

Day 4 was here.  The Big Day.  I was sick all morning just thinking about it, but hopeful.  The nervousness of another doctor telling me I was fine was eating away at me.  Dr. Erikson had met me a few days before when I arrived to walk through my history and talk me through the tests.  He told me he had an idea then which should have given me confidence but it didn’t.  He walked in and talked me through my tests.  He said the main test I required was the CT with contrast (one I had several times before) and it was the one that had the answer to my diagnosis.  The one 7 other Nephrologists SHOULD have been able to diagnose with that test that they had all performed or reviewed.

It’s confirmed, You have Medullary Sponge Kidney Disease.

Ok.  A name!  YES! Finally!  I sighed with great relief, I wasn’t crazy.  He walked me through what to expect.  It is extremely rare, causes kidney stones, and infections.  He proceeded to tell me, it is also not curable and not very treatable.  You will take medications but they can be hit or miss.  I don’t know what I expected initially when I got an answer but this wasn’t it.  I kept my cool but on the inside I was freaking out.  I just assumed if I had an answer It would be something that could be fixed.  After all weren’t most diseases curable?  He said I would need to find a regular kidney specialist to work with.  That I refused, and we settled for a urologist.  I did not have one good experience with a nephro.  They were all complete douche bags with their heads up their own ass (and that’s putting it nicely). So that was it.  Nothing dramatic, just exactly what I went there for.  An answer, and I had one.  Still unsettling, but I had an answer.

“By the way”, Dr. Erickson said.  “We need to talk about your family history.  I recommend you see a geneticist.  I believe something runs in your family…”

-Just a Regular Sick Girl

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