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Archive for September, 2009

September Transplant Labs

September 21, 2009 Leave a comment

I had lab work done last week, but just got the remaining results today.

The level of BK Virus in my blood continues to drop.  It started at 7,260 copies in July, and after stopping CellCept at that point, was 2,257 in August, and this month there are 961 copies.

My cholesterol is 156, but I need to get my HDL up, as it’s low.  My Prograf level is elevated at 9.9.  I’ve asked several nurses and doctors what the level is, and I get different answers.  The doctor told me 6-8, but the nurse today told me 6-9.  I’m going to hold off on more blood work for now, and discuss it with the Transplant Surgeon at my appointment next month.

I had been exercising daily up until my episode of phlebitis in July.  I’ve really cut back since then, hence the low HDL.  I started back up this week by riding my recumbent bike, and then will get back to walking again.

You may have noticed the SiteMeter map on the sidebar.  I get various statistics on visitors (I use the free version), and it’s interesting to see the locations of some of my visitors.  Other countries include (in the last 100 visits) Netherlands, Peru, UK (several different locations), Costa Rica, India, and Jamaica.

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It’s a small world-twice this week

September 20, 2009 Leave a comment

It’s been a strange week alright.

Yesterday, I worked an overtime shift in the Childrens Hospital-my full time job is in a Peds clinic. I was talking to a doctor I hadn’t seen in awhile out in the hall, and then entered the room of one of my patients to check on her.  Her mother said to me “That’s Dr. R.  He was my doctor when I was 9 years old.  I had meningococcal meningitis, and was in the hospital for a month.  My brother had it too, but he died”. I asked her if her brother’s name was Paul, and sure enough, it was.

It was 13 years ago and I was working in the clinic evening shift on a Friday in July, when an adolescent came in to be checked out (we have a lot of patients referred to us for acute care problems, as well are open 7 days a week as well as evenings, and we are on the campus of a large medical center).  The story was that his sister was in the Peds ICU with suspected meningococcal meningitis. He was mentally delayed, and without knowing a baseline, it was initially difficult to get a good read on his neurological status, but that changed quickly.  I had a difficult time drawing his blood (I’m usually very good at that), because his blood pressure was lowering.  We did a spinal tap, and in the short time he was in the clinic, he became more drowsy, and upon leaving, he started with petechiae and had a BP of 70’s/30’s.  He had meningococcal meningitis and sepsis (bacteria in his bloodstream).  He died early Sunday morning.

The 2nd “small world” incident was through my wife Jackie.  In order to understand this one, I’ll explain my transplant.

The transplant coordinator called me on a Friday night with an offer for a kidney (my 7th such call).  The only information I got was that a 16 year old girl had been on life support for a drug overdose, and had been in a long term treatment facility for adolescents with substance abuse problems.  (he also gave me other info, such as that her labs were good, etc).  I accepted the offer, and had the transplant the next evening after dialysis.

When Jackie was making phone calls to tell everyone the happy news, my roommate from college told her that there was an article about this incident in the local  newspaper (he was home visiting his family).  It gave other details, such as the specific company whose facility she was in, and what had happened (her and another girl were taken to the dentist, the worker taking them had a bottle of pain killers in her purse, they stole them, took the pills when they got back, were found barely breathing, and taken to the hospital).

Jackie is a Special Ed teacher, and she has an aide in her classroom that was recently hired.  On Friday, he was telling her who he previously worked for, and she mentioned to him about my transplant, as well as the circumstances behind it.  Here, he was working in the same group home at the same time that my donor was there, and apparently heard that her organs were donated (but obviously didn’t know to whom).

The right place, the right time, and the right conversations lead to these “small worlds”.  What are the chances?

(I changed the patient’s name to breach of confidentiality)

It’s always darkest before the dawn

September 11, 2009 5 comments

My wife Jackie and I were talking about the past 10 years and what has happened to her career-wise.

We met in a Psychiatric Hospital (we worked there), and at the time, she had an undergrad degree in Psychology, and was completing a graduate degree in Elementary Education.  She completed it, but in our area, teaching jobs are difficult to obtain based on one’s merits and abilities.  If you are willing to pay a bribe, or are politically “connected”, it’s possible to get a job, but otherwise, it’s not likely to get a full time position.

We got married, eventually moved to our current home, and she got a position as a Mobile Therapist and then as a counselor working with children.  That job led to another position as a quasi-Social Worker in our school district.  After 8 years, the school cancelled the contract of her employer, in order to hire more guidance counselors to do the work she and her co-workers had done. As an aside, and keeping with the rampant nepotism of the area, the guidance counselors were all in one way or another related to school district administrators, and costing the district much more than the contract they cancelled.

From there, she began substitute teaching.  The work wasn’t steady, and it was far from the ideal job, but she did what she had to, in hopes of somehow getting a full time teaching job.

She did this for 2 years, and then landed a job in the district teaching Alternative Education.  For those unfamiliar with this, Alternative Ed is a fancy name for a classroom used to place students that were simply unmanageable in a regular classroom.  She was experienced enough to handle this well, as she had worked with these types of students at the Psych Hospital we worked at.  Of course, while the “contracted” teachers received full pay and benefits, she was hired without a contract, and at a daily rate that was slightly higher than that of a contracted teacher, and didn’t receive any benefits. On top of that, the classroom was in a trailer, and the administrators had the attitude “out of sight, out of mind”.

It wasn’t the safest job, as the students were sometimes physically aggressive. She was subpoened to court twice because of arrests of her students related to things they did in the classroom that ended up in charges, and the school district wasn’t even going to pay her for the court appearances.

After 3 years, the district pulled another fast one, changed the job description in order to hire someone who apparently had “connections” (she lasted a year), and she was once again unemployed.

After 2 job losses within 5 years, she was very disheartened.  In addition to this, she was also dealing with me going through my kidney failure, dialysis, and eventual transplant.  I’m sure my readers who have experienced this with themselves or a family member can fully appreciate this stress.  But she was fortunate to get a summer job for a private provider of Mental Health and Special Education services, and that lead to a position as an assistant in an autism classroom (it was a position above an aide but below a teacher).  That was a year ago, and late last Fall, a teaching position opened.  She doesn’t have Special Education certification, but her supervisor hired her with the understanding that she would get certification.

So, in January, she started graduate classes to get her Special Ed certification, and was hired for the middle school Emotional Support class.

The certification will only require 6 classes (since she already has a M.S. in Education), and she’ll be certified at the beginning of the 2010-11 school year.

Now, she’s working at a private school, she’ll have her Special Ed certification at this time next year, and the salary she is making is the same as a teaching job in the school district that axed her job twice.

We were talking about this last night, and in retrospect, the best thing that happened to her was losing her job.  She persisted, and ended up landing a job that she loves.

The lesson here is the title of this post; it’s always darkest before the dawn.

Remembering back to when I was first diagnosed with Polycystic Kidney Disease, I experienced similar despair to what  Jackie did when she lost her jobs.  Based on what I saw my mother go through 30 years ago when she was on dialysis, my mood at the time was doom and gloom.  My mom was on dialysis for 3-1/2 years, had a very rough time throughout those years, and died of peritonitis related to surgery to remove her spleen as well as her kidneys (from what I can gather, the splenectomy was due to a problem with aplastic anemia, and the kidney removal was to prepare her for an eventual kidney transplant).  In addition, dialysis wasn’t nearly as advanced as today, and she would be in bed sick with nausea the day after dialysis, and “perk up” right before the next treatment.  This was probably due to the fact that back then, they only used an “acid bath” with dialysis treatments, causing acidosis; today, modern dialysis uses an acid and a base bath, which does away with this problem.

And yet as my kidney failure progressed, I kept on going, continued working full time even through dialysis, and although I had some rough periods, I persisted as well.  I put off dialysis until I had a kidney cyst rupture, causing my BUN to shoot up to 118, and was forced to start dialysis at this point.  My BUN was 80-90 for about a year prior to dialysis, and my GFR (percentage of kidney function) during that time was 8-10%.

And here I am today, living life with a kidney transplant, and having to remind myself that I actually had a transplant.  The reason I say this is that today, I feel 10 years younger than I did at the point I went on dialysis. When I was going through all of this, I was fortunate enough to be able to block out my initial apprehensions, and today, I’m thankful for treatment I received that allowed me to do so.

I probably will have more speed bumps along the way, but I’ve handled those that were thrown in front of me, and will likely be able to drive over those as I’ve done in the past.

Some readers of this blog are probably newly diagnosed with kidney disease, some are facing dialysis, some have chosen to remain on dialysis rather than transplant, some are awaiting a transplant, and others have gone through a transplant.  In my opinion, attitude and persistance can overcome a lot of what we have thrown at us, and I hope that for all of those that are in a position of facing challenges, that they do their best to look at the good, and do your best to overcome the bad.