Steven Berg

Wednesday, July 13, 2011

To this day, I still don’t know who the gracious donor was who gave his or heart to replace my broken one that 10th day of November 2008.

In May of that year, I had just been through a devastating custody battle and divorce.  I lost nearly everything I had ever worked for, including my beloved one only little boy, Austin.  Except for this year (2011), he and I had never been together for Father’s Day even ANY of his birthday’s. (The only reason I saw him on Father’s Day this year, is because it just HAPPENED to fall on one of our SCHEDULED visits.) He is going to be 5 on July 22nd through the machinations of my ex-wife, I am still only able to see him once every 2 weeks for 2 hours at a time through SUPERVISED visits.

Right after the divorce, I suddenly lost my job as a consultant working for Target Corporation in downtown Minneapolis — a job that I absolutely loved, but because of all the stress and demands of the divorce, I had to miss a lot of work and just wasn’t able to perform to the best of my abilities.  As an IT Consultant, I had never had any trouble finding employment.  So, I assumed it wouldn’t take very long to find a new job.  I owed over $40,000 to my attorneys and was still being forced to pay my ex-wife over $1500 in monthly child support payments.

I spent the rest of the summer frantically looking for work, but to no avail.  Physically, I started feeling weaker and weaker, for reasons I couldn’t understand.  Because I had previously been under my wife’s health insurance, through the divorce and my sudden unemployment, I was not insured, which was the reason I didn’t seek out medical help.

Nevertheless, my condition only continued to worsen.  I was only getting $200/week in unemployment benefits (over $300 was being garnished and sent directly to my ex-wife for child support. I became almost totally unable to take more than 10 steps at a time without having to rest. I couldn’t climb more than a few steps at a time, and often needed the help of my roommates. I often skipped meals because it required way too much energy to cook for myself.

Since I knew that I had highly marketable skills, I never imagined it would be that difficult to land a job.  But, the amount of time lost due to hospitalization and recovery, resulted in my being loss of a desirable commodity than before the divorce.  I have been vigorously fighting against this ugly, and deliberately distorted stigma, which has been unfairly branded upon my previously immaculate reputation, ever since that divorce.

On August 14, 2008, after 3 totally sleepless, painful nights I yelled for my roommate to call 911. The crushing sensation whenever I lay down prevented me from getting any sleep at all, and I would just spend the nights crying in pain.  I used to be somewhat wealthy and successful, owned a few rental properties, and making a very good living along with my wife. Now, I felt like I had become such a wisp of a man who couldn’t even take care of himself anymore. I was only 29.

When the paramedics came, and as I was being gurneyed out to the ambulance, I remember thinking how potentially embarrassing this was since it might only turn out to be something stupid such as panic attacks.  I was taken to Hennepin County Medical Center, where, after only an hour or so, I was informed that I was in an advanced stage of Congestive Heart Failure and had double-pneumonia. Needless to say, I was shocked and scared.  My family drove up to Minneapolis from Rockford, IL (where I was born and raised).  Since I wasn’t able to care for myself, I moved there along with them.  It was shortly after that, at a local hospital that wasn’t qualified or equipped to handle transplants (very few actually are), that my family was pulled aside into a consultation room and told that I was definitely going to die and that they should prepare themselves for it. I had no idea that it had become so serious and was too drugged to know that I was jaundiced and that several other of my organs and systems were failing, too.  (This hospital usually sends such critical patients like me to the University of Wisconsin.  But, because I was still uninsured, they wouldn’t accept me.)

Out of desperation and determination, my sister, Sue, wasn’t willing to give up.  She many several calls, emails, wrote letters, etc. appealing to ANYONE and EVERYONE for help.  Miraculously, one hospital responded to her plea and within hours, I found myself being strapped into a helicopter  bound for Christ Advocate Hospital on the south side of Chicago.  After about 10 days there, I was later transported to Northwestern Memorial Hospital in downtown Chicago, which had a more established heart failure practice.

During that time, my entire family came together and helped me out.  My sister was (and still is), my medical power of attorney, my father was able to get me enrolled in Illinois Medicaid and Social Security Disability, my mom spent many, many nights with me in the hospital during my ordeal and would often bring me my favorite white chocolate mocha from the Au bon Pain restaurant downstairs, and my aunt and uncle allowed me to live with them for several months during my recovery.

After I had finally been cleared to be put on the organ donor recipient list, (UNOS), I was expecting to have to wait several weeks or even months before a new heart became available.  Within only 3 days on the list, on November 9th, I received a call in my room at around 10pm.  They found me a new “Cadillac of a heart!”  It was up to me to make the decision whether to accept it or not.  I had read a whole lot of information about how much pain and discomfort I would be in right after the surgery.  It was just too soon!  I was suddenly extremely nervous and scared to death. Needless to say, I consented. I called my family (who were 90 miles away), and told them. They were at the hospital within a couple hours.

As I was being wheeled into the operating room, my mom held my hand, and, the thought that that might be the last time I’d ever see her, was overwhelming.

Within minutes, the anesthesia took effect, and 27 hours later, I started coming to.  I looked down at myself, only to see this:

There were breathing tubes down my throat, oxygen being fed into my nose, 3 tubes coming out of holes that had been inserted into my stomach, catheters so that I could go to the bathroom, pumps wrapped around my legs, and a battery of IV’s dripping into my bloodstream.  The next few weeks, I spent recovering in the hospital.  I had to relearn how to walk by wheeling my own IV pole around the hospital halls.  And, despite a very good prognosis, I would still get depressed and lonely.

I really, really hated being such a burden on people, but, frankly, I just had no choice.  Several times, all alone in my hospital bed, unable to get to sleep because of the high dosage of  immuno-suppressants I was on, (which cause insomnia), I often thought about just giving up.  But, that thought ALWAYS triggered thoughts about my little son, Austin.  I have WAAAY too many heroes to thank, but, my number one hero (next to God, of course), is Austin. He doesn’t even know it yet, but, because of my commitment to somehow be the best dad I can be to that little guy, he kept me alive.

I have been bound and determined to get my life back together.  As soon as I was able to, I moved back to Minnesota in order to be close to my son.  Currently, I can only see him for an hour every other Saturday.   I had to file Chapter 7 bankruptcy which was discharged this past January.  My only remaining large asset, my house, is going into foreclosure and I will be forced to vacate on or before October 20, 2010.

When I purchased my house exactly 10 years ago, I fell in love with it and took great care of it.  Once I got married, I kept it as a rental.  But, when I got sick, I wasn’t able to look after it anymore and my tenants didn’t take care of.  It’s now falling apart and in various stages of disrepair.  My backyard lawn is destroyed, (as is the sprinkler system), my deck is virtually rotted away, I’ve had my patio furniture stolen, two windows are broken out, holes have been punched into my walls, the ceiling in one of the bathrooms is totally water damaged, etc.

(Latest update:  That house that I once loved, is now foreclosed on and no longer in my possession.  I had been renting from some friends for a while, but I am now back in Illinois for the summer living with my parents.)

I am now aggressively looking for long-term employment, and have fortunately had several options open to me.  I’ve been submitted to several places as a short term consultant,but, because of my medical expenses, I need to find a permanent position rather than a job that will just end at a certain time along with any income that was associated with it.

I have so many different prescriptions that I can’t forget to take 4 times a day, and, every few months, I have to make arrangements to travel to Chicago for a heart biopsy to make sure the heart isn’t being rejected.  (I have already had two episodes of rejection.)

Despite MY situation, I am more concerned for my parents who are entering their senior years.  They both have sacrificed so, so much on my behalf, both during my divorce and through my illness.  Amongst all the people that I owe my life to, my mom and dad have gone to such extremes.  They are also going through some really tough financial times as well because of my ordeal.  Their health is also ailing and it grieves me that I’m not able to help them out like I used to.

My only wish is that I could be relieved of all the burdens that are holding me back from my son, the only name bearer of our family line.

Steven Berg

612-234-7830

swberg@live.com