Beans, Not Just a Magical Fruit

This is part five of a nine part series.  To read part four click this link.  To get to part six scroll to the end of this post.  

I was going through my third onset of HSP.  At this point it was determined to be not just HSP, but chronic IgA Vasculitis.  The spots didn't keep to just my legs.  They appeared on my abdomen and arms as well.  With this ongoing onset that really didn’t end I saw various doctors. 

A rheumatologist didn't find any problems, but advised I should have a kidney biopsy.  When I saw my nephrologist the next day she actually advised that I should schedule a biopsy as well.  I then told her that the rheumatologist had suggested the same thing.  A biopsy was scheduled for December 18th, 2013.

I went to the hospital early in the morning, around 6 or 6:30, and didn’t come home until about 5:00 PM.  I had spent the entire day in a hospital bed, and the entire evening in my bed. It was a young men’s night.  They went ice skating at the Olympic Oval in Kearns.  I didn't go with them as I was recovering from the biopsy.

At about 9:30 one of the parents called asking where their child was.  I explained I had been in a hospital bed the entire day and was now in bed at home, but that they could call person x to find out. This parent was a member of the Relief Society presidency. (One of the many great things the Relief Society does is help care for various needs of the people living in the area.)  She knew I had something wrong with me, then did nothing to see if she, or the ward, could provide any sort of assistance (nobody is perfect).

The next day I had two medical appointments.  (It also happened to be the worst snowstorm of the year, knocking down power lines and causing all sorts of traffic delays.)  It took two hours just to get to my first appointment.  The first was at the wound clinic. The second appointment was with my nephrologist. The result of the biopsy was already in.  

She expressed that she was glad I had been able to make it in.  Her office had called me stating that no matter what time I got there I needed to come in.  The reason:  my kidneys were failing.  The IGA was causing my kidneys, a bean shaped organ in the body, to harden and fail.  They weren't just damaged, or hurt, but failing. Fortunately it was just stage one. I was immediately placed on 100 mg of prednisone every day, along with six other medications.  The six were to counter the side effects of the Prednisone, or to counter the side effects of the counter drugs.  

On a side note, I hope you never have to take that much Prednisone.  It sucks. It hurts. One minute you feel like you are going to die, the next you are great, and the cycle repeats.  Every doctor I have seen since has asked how much I was given and their eyes do a triple blink and the jaw drops in wonder as that large of a dose is not common.  Side rant done. 

My nephrologist advised that while on the prednisone I should avoid public gatherings as not only would the Rx help my kidneys, it would suppress my immune system.  I asked her about church, and she said she didn’t have much knowledge of how church works, but if there would be people congregating in close proximity I should stay away.  As I had just recently renewed my faith I didn’t want to not go, but realized the importance of her instructions. 

I advised my bishop I should probably be released from my calling as young men's president.  He told me that if I would continue in my calling, faithfully doing all I could, God would keep me safe.  I said Ok. I figured that I could just stay out in the foyer through the first two meetings (away from large groups), and then go teach the young men.  It worked fine for just under one and a half months. 

Near the end of January, 2014, after the first church meeting of the day, somebody came out into the foyer and saw me, came straight over to shake my hand (which I refused due to the passing of germs), and coughed all over me.  He said, “Oh, sorry, I’ve had the flu” (or maybe just a cold, I don’t remember for sure). “It’s not been that bad, but I’m really glad I came to church today. (Cough, cough, cough) The talks were great, and I haven’t (cough cough cough (me thinking COVER YOUR MOUTH!)) seen you in awhile, and I enjoy seeing your bright happy face.”  

What happened next?  Yup, you guessed it, I got sick.  I didn’t really get sick until Thursday of that week.  On Friday I really didn’t feel well, but went to work anyway.  While there I had a hard time getting my work done. Breathing was labored, thinking was difficult, so I called to schedule a doctor appointment.  They couldn’t get me in, but advised that I could come in at 4:45 for the after hours urgent care.

I left work early to pick up Melissa and go see a doctor.  In the morning I had parked the car in the parking garage at work.  I parked at about the same spot every day.  I left the building (coincidentally) with a coworker, and when we got to the parking structure I couldn't find my car.  I thought somebody had stolen it. I wandered the two level garage for 15 minutes looking for my car. The coworker would later tell me that I looked deranged and extremely sick.  I was about to go and call the police, but finally realized I was looking on the wrong level. I had forgotten that there are two levels in the parking structure. 

I wasn't well enough to realize I shouldn't drive.  I picked up Melissa and she brought me to the clinic.  She waited with me for a while, but then went to get dinner for herself.  While she was gone I was seen by the doctor. After listening to me breathe the doctor brought in a machine, hooked me up to a number of electrodes, and took some readings.  

I wasn’t getting enough oxygen. Without an immune system the cold quickly caused massive problems that prevented me from getting enough oxygen. It was constricting my lungs. When people die from the flu this is the type of thing that kills them.  It’s not the flu, but the side effects of the flu. I didn’t want to be the next statistic.  I was too young to die, and for such a silly reason. 

The next thing I knew I was being hauled off to the hospital in an ambulance.  I must say the EMT's that poke your veins while a vehicle is moving do fantastic work.  The ride was quick, but felt like forever, and one long night was just beginning. I arrived to the U of U ER at about 8:00 PM.  I was seen rather quickly and admitted to the hospital at about 9:45, but wasn’t given a room until about 4:00 AM. I was placed on antibiotics along with the many other Rx’s I was already consuming.  After about 24 hours I was discharged from the hospital. 

That was one simple trip to church that became a costly three hours. Fortunately (or not) I was already at my out of pocket max for the year, so I didn’t have to pay a dime for any of it.  At this point I told my bishop I would no longer be attending church as I didn’t want to go through that again, and he would need to replace me.  He again told me I would be blessed for fulfilling my calling, I told him he would need to find a replacement.  We worked out a deal for the next couple of weeks and he found a replacement.  At that point my faith in God, Jesus of Nazareth, and the LDS Church was less than it had ever been.

I was still going to the wound clinic.  You see, a side effect of prednisone is that it prevents wounds from healing.  However, it was necessary to stop the kidney failure from progressing. I had been going to the wound clinic nearly weekly, biweekly, or monthly  beginning in April 2013 and didn’t stop going until August 2014 (there was a small stretch from the middle of August 2013 to the middle of October 2013 with no appointments) .  I had 42 appointments to get the wounds cleaned and help the skin to regrow.

I didn’t understand how, with so many promises from priesthood leaders, priesthood blessings, prayers, my name being placed on the temple prayer roll, prayers from people adhering to other christian flavors, this could have happened.  The first time, well, while it doesn’t happen often to adults, it can happen, and could happen to anybody. Second and third onsets are even more rare than getting it once as an adult, so most people that get it don’t have to deal with it a second time.  However, because I was fulfilling my calling I had to deal with it a second time, and then a third time.

So what did I do?  If interested you can read the next part in this series, part six.