Peritoneal Dialysis Solution Shortage

So my normal Baxter Healthcare delivery was last week.  They did not show up.  That has never happened before.  So I called them up to find out when they planned on showing up.  I spoke with the nice girl at the Baxter peritoneal dialysis customer service department.  They are always very nice, and they are always very helpful.  However, this time when I asked about my delivery, and they put me on hold for 7 minutes, which has never happened before. The nice girl came back and actually said, “Your dialysis solution is not readily available.”  To which I said. “Excuse me, what does that mean?”  She said, they were not allowed to offer solutions to our solution problem, and that I should call my PD nurse.  My nurse was actually surprised, although I later learned that PD solution shortages are not new for Baxter.

The fact that Baxter was not overly concerned, and did not even take the time to call to let me know they did not plan on delivering on the scheduled day.  They said they would call me back with a plan on when they could ship again.  They didn’t call me.  SO I called them, and they still did not have answers.  Do they not realize this is life or death for me?  I luckily have extra solution saved in my basement, but that will only last me for so long.  There is not even a solution on the horizon.   I expect better from Baxter Healthcare.  I feel like I need a lawyer.

 

Starting Work

So in October 2015 I started working full time again.  I had just been through Peritoneal surgery about 30 days before.  I actually started Peritoneal dialysis one week before I started work.  So having to do dialysis four times a day had its challenges.  For a little while I did it at 6AM, then when I came home from work at 6:30PM and then again at 8PM and then 10PM.  I found that I did not always feel well doing this, and it was sometimes hard to fit in multiple exchanges during the day.   As of today only one person I work with has any idea that I have kidney failure and am doing dialysis.   I just do not feel comfortable sharing this part of my life with work, and for the most part it does not keep me from doing my job.

So most nephrologists and doctors will frown upon this, and I do not suggest others in the same circumstances do this, but in order to feel better I decided to do my exchange in my car during lunch.  I currently warm my bag in a heating pad before I leave in the morning and then store it in a insulated bag.  Even in the winter, it is normally warm enough to do an exchange without getting the shivers.  Anyone who has ever put in a cold dialysis bag understands what it feels like to put a cold dialysis solution in your stomach.

Obviously, the biggest issues with doing Peritoneal dialysis is risk of infection such as Peritonitis.  I can say that in the many years I have done this, I have never experienced an infection of any kind.  I have been lucky.  The real reason Peritoneal works for me is because it makes me almost feel normal.  I like being able to choose when I do it.  I like that I can control how long it takes to do it.  In a way it is sort of relaxing.  Also, I tend to do 2.25% solutions four times a day.  That number of solution pulls a great deal of liquid off me which allow me to consume much higher amounts of liquid than I ever was able to do with hemodialysis.  On Peritoneal dialysis, I tend to run very low blood pressure and need to drink more and normally have to consume a bit more salt in order to remain regulated.  On hemo, I really had to watch my diet and liquid intake far more.  All in all I just feel more free doing this form of dialysis.  I will say that I don’t feel as good as I did twenty years ago when I was in college, but I am getting by.

A Minor Setback?

So for the last twenty years my life has been pretty good.  My family was great.  Two great kids and a supportive wife.  Two parents who would bend over backward for me.  For the last two years I left normal employment to start my own tech company.  I had started a tech company in 2011 and raised a good deal of venture capital.  That company was taken over and I moved on.  I started another company but was unable to raise any capital so eventually had to look for real work again.  It was winter of 2014 and I started feeling tired quite a bit.  I was pretty depressed from my startup failing so I chalked up the feelings to just being depressed and having to look for a job.  Things seemed to get worse.  Over a couple months I noticed pain and numbness on the left side of my body, primarily in my arm.  I found myself getting up in the middle of the night and not being able to sleep.  I would get up and just watch TV for a little while then go back to sleep and sleep until noon.

I was walking through the mall one day and I just could not catch my breath and I was dizzy.  I had to keep sitting down on a bench every twenty feet or so to rest.  I really felt like I was not going to make it to my car.  Still, I pretended nothing was wrong.  This may sound bad but I think I was so depressed about things that I had almost given up.  Part of me felt like it was over and I was going to die. I think the bad thing was I am not sure I cared.  I spent my life sick for so long I just felt like I didn’t want to fight things anymore.  This is really sad because I have a family, and I should not want to feel like that, but that was the reality.  I tried to ignore the feelings for another couple weeks.  I was sure my heart was failing or I had cancer.  I never really once thought it could be kidney related.

I finally told my wife that I really think I should go to the hospital.  So on February 15, 2015, we headed to the hospital where they did blood work, EKG, etc.  I was shocked when they came into the room and told me my creatinine was 14 and my hemoglobin was like 7 or 8.  I was experiencing kidney failure again.  After twenty years of good health.  The hospital I was at did not have dialysis capabilities so I was transported to another hospital close by where they quickly inserted a line into my chest and started dialysis and a few blood transfusions.

It was super emotional to have to call my parents and tell them the situation I was in, but like always, they jumped on a plane from Florida to be with me and my family.  The second issue was telling my kids.  My wife as always was a rock.  I don’t think I could ever get through all of this stuff if she was not around to help me.  I am a huge pain in the ass, so her still being with me is hard to believe.  My kids took the news better than I would have expected.  The one thing I know about my kids is besides being super compassionate, they are wicked smart, so for them, me being on dialysis was science.  They wanted to understand how everything worked.  I am sure they were worried about me, but my kids are strong and they handled it so well.  I felt bad for them, because I did not want them to have to deal with my issues.

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I went home after about a week and started the entire world of dialysis all over again.  It was shocking that it was over for me.  Back to dialysis.  I felt like a huge failure.  I was probably more depressed now than I was before.  I approached dialysis like I did anything.  No big deal. I would deal with it.  Hemodialysis did not change much in the twenty years since I did it last.  That was the most shocking thing.  I would have hoped it got better.  The only difference for me was I was on the machine for 4 hours instead of 3.  They also would not let me setup my own machine like I did when I was a kid.  I can say that being on a dialysis machine for 4 hours three times a week, seemed so much longer than when I was a kid.  When I was a kid, I normally slept through most days.   I knew that I would not be able to continue on hemodialysis for very much longer.  My experience with Peritoneal dialysis told me the only way I would get some normalcy in my life was to do Peritoneal dialysis again.  The hemo center I was at did not do Peritoneal dialysis so I had to transfer to Davita.  Within a few months I had the surgery and was ready to go with Peritoneal dialysis.

During this time I had actually gotten a job and was due to start on October 1st.  Luckily I was ready to go with Peritoneal dialysis and I figured just like college I would go to work just like anyone else, do the 8-5 thing and just wait for another transplant.

Just like hemodialysis, Peritoneal did not change in twenty years.  The only major difference was that the bags they sent you had the tubing already connected and in the old days, you had separate tubing for the glucose solution.  Unlike twenty years ago, instead of doing 1000CC bags, I was forced to do 2500cc bags, which seems like a huge difference four times a day.

During this time I visited University of Wisconsin Hospitals to get on the transplant list.  It was very similar to the other two times.  I guess the only shocking thing was that the transplant surgeon I met with was so young he was not even in school when I got my last transplant.  Also unlike the first time, I am required to send blood typing and matching every month to the hospital.  I never did that the first or second time.

I have been on the transplant list now since February 19, 2015.   Not sure how long my wait is going to be, but I sure do not feel as good as I did twenty years ago doing this!

The Good Years

So after my transplant, I recovered quite quickly.  As I always did, I was the perfect patient.  I followed every rule, and before long I was on very little anti-rejection medications.  I met my future wife shortly after my transplant.  It was a chance accidental meeting in an online chat room.  Ok, that’s almost common today, but back then it was pretty unusual and maybe even a little weird.   We were married in 1998, and I had my first real job.  She was very supportive of me even with all my health issues which was nice.  For the first time in a long time I was “normal”  I felt good, and had a job and a wife.  I was happy.

In 2002 my son was born.  That was a real eye-opener.  Now I had real responsibility to go along with a wife and a job.  He was amazing in every way.  I remember looking at him and seeing myself.  You always hear that you love your kids more than yourself, but this is true.  It just happens.  In 2006 my daughter was born.  I always saw myself having two sons because I had a brother and we always and still have a special bond.  So I really thought that if I had two sons, they would have a similar bond.  Having a daughter is a little different.  When thinking back, I was excited to have a little girl.  I didn’t see myself in her like my son, but I saw my wife and I saw someone that would always love me.

My two kids are amazing.  They are both highly gifted and smarter than I will ever be.  My son is well exactly like me for better or worse.  He has the same stubborn nature and sadly, does not always listen when I try to tell him how to succeed.  My parents promised me the world to push me to do well in school, but I fought them.  In hindsight this was dumb, and I should have listened.  When high school graduation came and I was embarrassed that I was not one to have a special tassel on my hat, and I was stuck in the back of the class it became clear my parents were right.  My son is in that same place, and I wish he would listen to me, but he is too much like me so I know the more I push him, the more he will push back.  He is so talented, smart and creative.  I just hope that he finds what he wants to do because I know whatever that is, he will be amazing at it.  He pretends not to care about things, but I know deep down he loves me.

My daughter on the other hand is more a chip off the wife’s block.  She is sweet and caring and listens to all the rules.  She too is super smart and so sweet.  I know that she will always work super hard and achieve great things.  The best thing is that she always is willing to try new things and its fun to see her want to be in the spotlight.  She also has so much compassion for others and I know that if I ever need her she will be there for me.

So our family life is pretty good.  It’s about as normal as one could imagine.  Sure we have our fights and we argue and we do not always agree on things, but we are there for each other, and I really would not do it any other way.

Transplant #2

So in less than twelve hours we were on a plane from Illinois to Pittsburgh. We arrived at the hospital in plenty of time to watch the Super Bowl while they started IVs and did any last minute prep work. I even had time to do a dialysis exchange or two. I even brought a video camera and filmed as much as I could. I am not sure exactly where the tape currently is, but hopefully I can find it. As far as I remember, the surgery went off pretty easily. I spent the next week in the hospital starting a new anti-rejection medication called FK506. It was nice that it was a pill instead of the horrible tasting liquid that was Cyclosporin. I should explain a bit about my match. As it was not a live donor, the donor was a 21 year old man from Kentucky or Tennesee. Strangly, he was the same age as me. I believe he died of a brain aneurism. This match was what they called a 6 antigen match which apparently has a 25% chance of happening if that donor is a sibling with the same parents. It also happens occasionally in general population.  It was almost like I had a secret twin brother that I did not know about.  To make a long story short, it was a perfect match.  I have never reached out to the donor family, but I can imagine what a hard decision it was for them to donate his organs.  I really appreciate it, because it gave me an amazing twenty years of good health.

I got the call for the second transplant three months before I graduated from college.  The teachers at my school were great and allowed me to makeup any work or tests that I missed while recovering.  I was able to actually graduate with a degree in marketing and a minor in computer science.  For the first time in a long time I was feeling healthy again.  I was a graduate, it was time to find my first big boy job.  It is amazing what type of life a transplant can give you.

The College Years

So between 1990-1994 I kinda did the college thing like most people my age.  I went to class, I took tests, I skipped classes in order to nap.  Oh, and I also did dialysis treatments in my dorm room four times a day.  If you do not know how Peritoneal dialysis works, you have a tube implanted in your stomach area that rests inside the body between the stomach and the peritinium.  Four times a day you empty around 2 liters of glucose solution in this cavity.  You let it dwell in their for 4-6 hours and it pulls out all the impurities and liquid just like your kidneys do.  Then you empty the two liters into a waste bag after around 6 hours and dispose of it.  Now, how you are supposed to dispose of it Baxter might tell you one thing. Some people flush it down the toilet, some down a drain.  I was super embarrassed by this because the waste solution looks like a giant bag of pee.  So I did the logical thing.  I emptied it out my dorm room window, down the side of my dorm wall.   Yes, four times a day, 2 liters each time dialysis waste.  I am not condoning this practice nor am I suggesting you follow this, but it worked for me. Eventually someone in the dorm complained because I think it might have been destroying the ground cover, or eating the side of the bricks.  I am not totally sure, but I never stopped doing it.

By my Junior and Senior year I had moved out of the dorm, so doing dialysis was much easier.  I had a fair number of good friend and roommates who embraced my weird ways.  I honestly felt almost normal.  The ability to control when I did dialysis, made me feel like I was in control.  Unlike hemodialysis where you are scheduled, this form of dialysis gave me the freedom to get through college.  I am not sure when we decided, but at some point during college it was decided that maybe it was time to go on the transplant list.  I had been cancer free for long enough.  There was no reason not to get on the list.  because my mom was not a match and I was not going to take my dad’s last kidney and my brother was not old enough, my only option was a cadaver donation.  I have not really said this to many people, but I have always felt guilty about losing my dad’s kidney.  I’ve always worried that something would happen to his good kidney, and I would feel horrible.  Luckily, so far nothing had happened, but there is always guilt in me for losing it.

After many discussions, the thought that Cyclosporin was the cause of my cancer, it was decided I should get my transplant at a hospital that had something different.  This was 1992-1994, so there were not many drug options available.  It was decided that I should get listed on the transplant list of University of Pittsburg medical center.  They were using an experimental medication called FK506, which was later known as ProGraf. The other great thing was both of my parents were born and grew up in the Pittsburg area so there were family members around that we could stay with.  I don’t remember all that was involved with getting on the list, but I remember it was not too hard.  I did all the tests, and was given a beeper.  yes, before cell phones we had pagers.  So when my kidney came up they could get in touch with me.  I remained on the list for a couple years.  I am not sure exactly how long I was on the list, but it did not feel overly long.  I was sitting at home on the Saturday before the Super Bowl.  I believe it was Super Bowl XXVIII.  The Cowboys and the Bills.  It was around 8PM and our phone rang.  “Brian.  This is University of Pittsburgh transplant team.  We have a kidney and its a perfect match!”

Rejection

I do not totally remember exactly how it happened.  It was probably two or three months after my last chemo treatment.  Most of my hair had grown back, and there were no signs of cancer.  I was forced to drop out of college as I had missed most of my second trimester.  I remember getting out of bed and going completely blind.  Literally, I would stand up and I could not see.  I did not know at the time, but my kidney had started failing due to not being on Cyclosporin any more and chemo had more than left my body.  Apparently, my blood pressure was very low and so when I stood up, my blood pressure dropped even more, making it so I could not see.   I do not remember going to the doctor, or what they said to me, but obviously, my kidney had started failing and they would start me on hemo dialysis.

I don’t know if I have always been strong.  I know that I always worried about my mother and spent a good deal of my bad medical years trying to isolate my mom from whatever pain I was suffering.  So I think without even trying I just kept it bottled up, and never really shared how I was feeling.  I don’t believe this was a bad thing.  I don’t remember being bitter or upset by it.  I just felt for my parents sake and especially my mom, I had to be strong.

I don’t remember the surgery where they put a central line in my chest in order to start hemodialysis, but they did and I started 2-3 days of dialysis a week.  Again, we went to the dialysis clinic at Children’s Memorial having to drive 60 miles each way three days a week.  The nurses in the clinic were amazing.  They always joked around and kept it very light.  All in all it was a very depressing place.  Imagine 6 chairs with kids ranging from age 4 to age 18.  These were the sickest of the sick kids.  Again, like my first transplant I was determined to be the best patient.  Overall I did pretty well, Every once in awhile they took too much liquid off me and my blood pressure dropped, but overall I did ok.  I stuck with their low protein, low phosphorus, low potassium, low liquid diet.  My mom made sure I did well.  We always asked to have the earliest appointment we could get.  We would have to leave home at 5AM in order to get there by 6:30AM.  My mom and dad took turns taking me.  I cant imagine how hard that had to be three times a week, with both of them working.  I learned to setup my own dialysis machine.  I am not sure legally they should have allowed me to do it, but I was able to setup the tubing of my machine, setup all the safety devices and be ready to be hooked up before other kids got there.  I think it made me feel important, and I think it gave me some control over my circumstances.  My dad was very strong during this time and supported me.  He learned quite a bit of medical things in order to allow us to do quite a bit at home.  He learned to give me Epogen shots because I was too afraid to do it myself.  He learned to clean my central line and inject saline and heparin.  Im not sure how hard this was on my parents, but we still do not really talk about it.

Between February and September 1990, I spent three days a week for around three hours a day on hemodialysis.  Then it was decided that I should go back to college.  I was a year behind, but I grew up knowing how important college was, and there was no way I was not going to go.  That is when I learned about Peritoneal Dialysis.  How great is this.  A dialysis treatment that I could do at home.  No more blood dialysis.  It sounds perfect!  Wait, I have to do it 4 times a day?  EVERY DAY!   Ok, it was better than hemodialysis in my mind.  It felt safer, gave me control and was the best way for me to get back to college.

I went back to college the following year.  Not too bad for just having cancer and being on dialysis.  I had the same roommate, and that made it easier.  At least he was ok with all the medical things I had to do, and we joked about it quite a bit.  I think the only sad thing was that most of the friends I made the previous year stopped talking to me.  They had joined frats and sororities and were doing their own thing.  I had a few close friends that for the most part embraced my medical issues so it ended up working out.  Strangely,  I was not too nervous about going back. I am not sure why.  My mom must have been crazy nervous.  The only bad thing was once a month a giant 18 wheeler pulled up to my dorm room with a giant BAXTER HEALTHCARE on the side where they proceeded to deliver 40 giant boxes of dialysis solution.  It was not embarrassing at all!