Editor’s Note: Chris Witwer is fighting for his life….against a rare disease. There is a benefit being thrown for him on Sunday, May 17th. I invited Chris to share his story with you.
Written by: Chris Witwer
My story begins in Sept 2001 a few days before 911. I was playing golf with some friends and I started coughing up blood while on the course. Being 22, and invincible I didn’t think much of it.
That night I went home and noticed that my urine was a dark reddish brown color. Still being 22 and invincible and feeling fine I didn’t think much of it. I ignored both symptoms.
Well the next morning I woke up to go my day job (I had 2 jobs one during the day and one at night) and went down the hall to go to the bathroom. Next thing I know one of my roommates, Rian, was waking me up on the bathroom floor berating me for being drunk. Well I wasn’t drunk but I was very confused. I had been unconscious for a good 4 hours or so. I called my job told them I obviously wasn’t coming in and that I was sorry. My manager was real cool about it especially after I told him what happened. I was tired so I called off at my night job and took it easy for the rest of the day and went to bed early.
The following morning I woke up ready to go to work, went to the bathroom, and I started to black out. I turned around and ran back to my bed just as the world was closing in black. Once I laid down and started taking deep breaths my vision cleared to little moving black spots and I started pouring sweat and my body had pins and needles everywhere.
I went to my doctor the next morning and he took one look at me and brought in another doctor and asked him to diagnose me by sight. The consensus was severe anemia. It was then that I realized I wasn’t so pale from 2 jobs, but I was so pale because you could pretty much see through my skin. He told me he wanted to draw some blood and take a sample of my urine to run tests. I said ok and they drew a bunch of blood into about 20 of those little vacuum sealed test tubes and then sent me into the bathroom to fill the cup.
When I came back there was 2 guys standing outside with a med bag, and they took my newly filled cup and were gone. All I know is they were specially called upon to rush my samples to the lab “stat”. The doctor asked how I was feeling and I said I feel fine and he did a few little pokes and prods and looked in my throat and sent me home and said he’d have the results of everything in less than a couple hours and that he would call me and we would go from there.
I got home and my roommate was setting up a new fish tank he wanted to put piranha in. I had a 100 gallon saltwater reef tank and told him I’d take him to my store that I frequented because I knew they had piranhas too. I forgot my cell phone at home. We went to the store and I perused the reef fish while he picked out and paid for his piranhas and then we headed home. When we got home our other roommate Jim Plotner was sitting there, and just by his body language I knew something wasn’t right. He told me the doctor called the house phone, then my cell phone, then the house phone again and gave him his personal cell number and instructed him to have me call him immediately and that is was an emergency. That’s about the time I started getting worried.
I called the doc on his cell and he explains I have a red cell count of 5 I’m not exactly sure what normal is but apparently 5 is very bad. He tells me that he doesn’t understand how I’m even conscious and that the staff at the Toledo Hospital emergency room is waiting for me to show up and that I need to have someone drive me immediately and that it’s very important I don’t let myself fall asleep. Well as luck would have it. Jim and Rian both had to go to work and we’re on the way out the door and couldn’t give me a ride. I called Josh Adams, and he is 45 minutes away and he comes to get me in Sarah, his now wife’s, little green honda civic from across town and picks me up.
While I am waiting I start to get very drowsy. I am forcing myself to stay awake and now I’m getting very nervous. Josh shows up and I don’t remember the ride really I just remember josh smacking me in the head and shoulders keeping me awake.
When we got to the hospital I honestly don’t know how I got up out of the passenger seat but I don’t remember struggling to get up. Then again maybe Josh had to push me I don’t really remember. What I do remember are two guys in scrubs coming out and asking me if I was Chris. All I remember is they ran me through the doors into the ER through the waiting room and right into a trauma room. I know it was a trauma room because I was on a metal table.
They didn’t have me fill out any forms or anything. They asked me for the phone numbers of relatives in town and at that time it was just my brother. I gave them that number and they went off. They then put a unit of blood in each arm and started squeezing it in. I started to wake up. I thought hey this is great I’m feeling better. Little did I know they were telling my brother to get his ass there immediately and to call our parents and get them their too because they thought my heart was going to stop and they weren’t sure they could bring me back. They didn’t tell me any of this.
My parents were living up in Michigan about 3 or 4 hours away in their newly purchased dream house. (The same dream house that they later had to give up and sell at a loss because of my fucking illness but that’s another story of guilt I can tell another time) They were on their way and my brother was in the room. Once they stabilized me they admitted me of course and the real testing began. Lung tests, blood draws, lights in the eyes, pee in containers etc.
It came back my kidneys and lungs were bleeding and my kidney function was down to 10%. They had no idea why. They started giving me antibiotics and other meds. And they were tossing huge amounts of prednisone down my throat to try and Jumpstart my kidney function again. The kidneys started to recover enough function to stay off emergency dialysis but they still didn’t know why.
This is where I get lucky. There was one doc that had seen an extremely unknown and rare disease one time in his career called Good Pastures Syndrome. When I say rare I mean at this time it was rare. 1 in 250 million people get it. So rare that if a doctor even saw it in his career, most likely he never saw it again. It just so happened the main symptoms are you guessed it: bleeding lungs and failing kidneys.
So they start doing the more invasive tests now. First if I remember correctly they had me flip over in my hospital bed and this guy hammered a very pointy and painful corkscrew thing directly into my hip bone and ripped some bone marrow out. Extremely painful. The test came back that I had absolutely no iron in my bones at all. That was apparently due to all the bleeding my body was doing.
The next test was they wheeled me into a lab and made me breathe this mist out of this clear peace pipe thingy which completely nullified my ability to swallow. It was actually kind of amazing thinking back because it was like it made my body forget how. I would try and it just wouldn’t work. Then they proceeded while I was wide awake mind you to shove a tube through my nose into my lungs and one in my throat into my lungs. There was a camera in there too. They then proceeded to spray the walls of my lungs with a saline/medication solution which basically washed them and then the other tube sucked the fluid out like a vacuum into a container that was right by my face. The fluid looked exactly like Hawaiian Punch. To this day I don’t drink Hawaiian Punch.
This, though extremely traumatic to me, apparently worked like a charm because my lungs almost immediately stopped bleeding I guess and because of the prednisone started to heal themselves. My kidneys, not so much.
Then on Sept 11 2001, I was told the night before that they were going to do a kidney biopsy and fly my samples to the mayo clinic for testing for GPS. I woke up in the morning and my mom was sitting next to my bed with just kind of a weird somber look on her face. I thought she had been given bad news about me, but it turns out when she pulled the TV over to face me it was the news replaying the first plane hitting the first tower. We watched together and then the second tower was hit. I saw that one live as it happened. We were in shock. We temporarily forgot about my bullshit for a minute. And we were heartbroken for all those people. It was about that time that it became pretty clear that it wasn’t an accident and the media started reporting the Pentagon was hit too.
Needless to say they grounded all flights in the United States and now we were wondering what was going to happen to me since they couldn’t fly the samples. It wasn’t a selfish thing it was more of a “what are we going to do now” scenario. The doctor came in and explained how the biopsy was going to work, and he handed me the big needle and showed me how it had a vacuum operating system and basically you push the plunger in and then stick the needle where you want it and press the button and it sucks a sample into the collector.
Eventually it was time. They took me into a special room with a large CT scanning machine in it. They had me lay on my stomach and cross my arms under my chest and lay my head down on the special pillow. I was told I could move my head and nothing else. They slid me in the machine took a bunch of pics and marked the spot with an X where they were going to stick me. I was pretty terrified to be honest. They numbed my skin with something and then he plunged the needle in. It stung a bit but it wasn’t all that terrible really. And then he said ok here’s the first one. I heard the click as he punched the button, and was hit with a dull shocking pain that quickly spread throughout the entire midsection and got worse and worse. It took him 4 more tries to get the right sample….
Well they ended up having to drive my samples in an intern’s car, at my parent’s expense out of pocket, to the University of Michigan for testing. Here’s where that whole lottery-esk type stuff comes into play again. The disease itself is very rare and then there’s an even more rare form that can’t be seen with a blood test and only the biopsy can do it. Guess who had the even more rare version of the disease. That’s correct I did! So even though they knew what they were looking for they couldn’t actually be certain of the diagnosis because they couldn’t tell. Well eventually a day or two or maybe even 3 later they got confirmation from the biopsy.
I gained 50 pounds of water weight overnight, due to the water retention from my failing kidneys. My skin stretched so bad my entire upper body has giant stretch marks the size of zebra stripes. I almost killed myself. It took 3 days and double the diuretics to get that fluid off of me.
Once the diagnosis was official “Good Pastures Syndrome” Then the real fun began. First was a colonoscopy to make sure I wasn’t bleeding in my intestine.
Next was surgery. I got to lay there wide awake while they placed a chest catheter in me directly into my aorta. One tube in the “in”portion of the heart and one in the “out” portion. It hurt, and I hated it. I had made a pact with God though and knew right from the beginning I was going to get through everything. It was just a strong feeling I had. I don’t know how to explain it other than that.
Once that was ready to go is when the plasmapheresis started. A very nice gentleman from the red cross would wheel this giant machine ,and he would hook into my chest catheter and it would take blood into the machine and spin it in a centrifuge which separated the white blood cells from the rest. This was good because what GPS is your antibodies attacking your organs and killing them off. So they had to give me the aids drug to completely shut off my immune system then after removing the bad albumin that was trying to kill me the gentleman would replace it with donor albumin 24 bottles a day about the size of those little colored fake fruit flavored juices with the foil top. The ones you can get a case of for like 2 bucks and they have no nutritional value whatsoever 24 bottles a day at 55 dollars per bottle. Every day for 2 months. I was good for a week then I relapsed. And we had to start all over again. This second session was only about a month or month in a half. This time it worked. I spent the next year in the Toledo Hospital being monitored and poked and prodded and tested to make sure the disease was put to sleep.
It was about a year or so as I said when I finally got released The good news was my lungs had healed, there was no sign of the disease, my iron levels were normal, my red cell count was normal, everything was back to the way it should be with the exception of the bad news. My kidney function was 50% at best. But still plenty above dialysis level and I was told to resume a normal life and that one day could be soon could be later the kidneys would fail and I’d need dialysis and a transplant.
I started working at the Bier Stube doing the door and eventually moved up to bartender and spent the next 6 years working there and loving life. Soon I started to worry about my future which even though bartending is amazing money unless you own the bar there’s no future in it really. And so I made the decision to put myself through school at MMI. I decided that if I had to work I was going to work on Harleys every day because that’s what I love. I had previously majored in marine biology and minored in environmental science at BGSU. I’m an ocean guy so let’s just say I joined a fraternity and then didn’t graduate.So, I saved my tips for an entire year and then packed up my shit and my dog and left everything and everyone I’ve ever known behind and drove to Phoenix. The school helped me get an apartment and try to find a job and one of the other guys in my class one day gave me an app for the Arizona Republic which is where I’m still at to this day. I’m just the boss now.
I was doing my blood tests and everything was holding out very well. No improvements, but not getting worse. I had some side effects from the low function. Higher blood pressure, low libido, extreme gout, etc. And I was sent for an ultrasound because my liver function came back higher than it should be. They were looking for fatty deposits cause I weighed about 300 pounds which is obviously overweight and fat people get fatty deposits on their liver which increases liver function and can be unhealthy. Well the results on the liver came back negative but they spotted a suspicious lump on my left kidney.
Well as you can imagine I had to go in for a biopsy so they could test it and see what it was. This biopsy was different. All I really remember was the lump was so hard the doctor couldn’t get the needle to penetrate it so he could get a sample right away. I remember feeling his hands shaking with amount of force he was putting into trying to get a piece of the lump. Well he finally got a piece and a few days later they called me and told me it was in fact, cancer.
I met with a cancer surgeon and they went in with laproscopic robot thing and removed the cancer with surgery. As you know I don’t get good luck without bad as well so when it came to the robot stitching up the kidney the stitches kept breaking through the tissue and wouldn’t hold so the doctor had to make a 14 inch incision across my left abdomen and reach in, hold the kidney and tie the stitches by hand.
They gave me morphine for the pain. Imagine my surprise when I woke up and figured out morphine has absolutely no effect on me. I’m immune to it. I was trying to get this point across and no one would listen to me. Luckily Julia finally stopped some of the chaos and explained that it wasn’t working and I needed something different. That’s when they pumped in the dilauded. That worked. I spent 6 weeks recovering from that incident and luckily no more complications and they had gotten the cancer. I was lucky. No radiation. No chemo.
I was on partial Social security disability and had medicare helping me out with insurance finally. Once I got promoted at work though they took all of it away from me. Even trying to make me pay them 19000 dollars back. After I proved that not only did I make less than that at my part time job that keeps us part time so they don’t have to pay benefits but that that was more than I made in an entire year PLUS proving that the supposed overpayment was their fault not mine they cleared me of that debt thank god.
Anyway, I went in for a CT scan one day but this one was different they injected me with this radioactive substance and then watched my kidney function live as the fluid moved through my body. I found it very cool to watch. That’s when they spotted the enlarged lymph node in my chest. Since I had a history of cancer already they were very worried about this one. So once again I had a biopsy this time on the lymph node. It came back inconclusive so they scheduled me for surgery and they removed it once again. To this day they haven’t really given me a definitive answer of that lymph node. Either it was cancer again or it wasn’t the test was inconclusive again. Either way it didn’t spread and close to 5 years later I’m still cancer free.
Once I got health insurance again to due to being forced to or pay the “tax” I got a plan that while fantastic and inexpensive pushed my head further underwater financially. I didn’t have health insurance because I didn’t want it. I didn’t have health insurance because I didn’t have any extra money to pay for it. I went about a year and a half without the Medicare and no insurance of any kind. Once I got insurance through the exchange the testing started up again. This time the kidney function had dropped from 50% to 30%. I started to get worried.
They don’t start people on dialysis until about 10% function and below. Or if the symptoms are so bad you can’t function normally. My function was 30% and though I was a bit more tired I was still working and playing when I had free time etc. We decided we were going to wait a month and retest my function and see what it did. If it stayed the same or improved we wouldn’t do anything. If it got worse it was time to start planning for dialysis. Well it went down a bit over 20% in a month so life changed dramatically. First was diet no salt, no processed foods, no dairy, no meat, fresh fruits and vegetables only. I did it because that’s what I do. I adapt and adjust to live.
Unfortunately I was stuck in a vicious cycle that was unfixable. You see low kidney function raises blood pressure, and high blood pressure kills off kidney function. So that 20% went down to 18, then 15, then 12% and I started to feel very downtrodden, and tired. I could sleep for 15 hours on a day off and then go to the store for groceries and then be exhausted and sleep another 15. I kept going to the hospital because I would get dizzy and have trouble breathing. Finally they decided to put me on dialysis. We had already been discussing the different types and we all agreed I would benefit from Peritoneal dialysis rather than hemo dialysis. PD is done by filling your peritoneal membrane with a sugar saline type solution that pulls the toxins through the membrane out of your system and them you drain the fluid after a certain amount of “dwell” time. There is manual pd and pd done with a machine called a cycler. Hemo dialysis is the type of dialysis you hear about your grandma or uncle doing where they go to the clinic and get hooked into the machine and have to sit there for 4 or 5 hours every other day. It’s way more invasive on your body than PD and more dangerous.
I had to have an emergency hemo chest catheter placed in my chest because my function dropped so quickly I needed before I could heal from the surgery to put in a PD catheter in my abdomen and I had them put in a fistula too in my left arm as a backup. I needed to wait about a month to use the PD cath plus I needed to be trained and it takes anywhere from 2 to 5 months for the fistula to heal. So went on emergency dialysis through the chest catheter.
Once I was trained on PD I was sent home to treat myself. I would fill with 2500 ml of solution (2.5 litres) and I would have to let that sit for 8 hours and then drain it out and weigh the bag. Usually I’d pull out about 3000ml 3 litres) of fluid the extra 500 being the toxins and fluid needed to be removed. Then I’d immediately have to fill again with 2500 ml and let that sit for another 4 hours and then drain that. Every single day 7 days a week while still going to work doctor’s appointments lab tests etc.
There was and still kind of is a nationwide shortage on Baxter dialysis solution and cyclers. After about 7 months I got my cycler. It took me one day to train on it and now I use it every night. It is supposed to do its business while I sleep through the process but I like many others have a hard time sleeping through the process. I’m honestly lucky if through the full 8 hour cycle I sleep an hour or two. Sometimes though I get as many as 5 hours but that is quite rare. Usually I unhook from the cycler and I get about 4 hours of steady sleep before going into work.
I am currently doing all the testing and exams for transplant. This basically is a complete check of anything that could possibly be wrong inside and out before they will let you officially on the list. My wait I’d 4 to 8 years for a kidney. Unless one of the 2 people that volunteered to be a live donor matches. That likelihood is very slim that either is a match.
I take 11 pills in the morning, 3 mid- day, and another 7 before bed,every day. That doesn’t include the binders I’m supposed to take with every meal. There are a million side effects to dialysis that are basically just a “you are going have to deal with it situation” RLS, severe kidney pain, extreme fatigue, coughing, severe itching, hair loss, memory loss, the list goes on and on and on. I can’t tell you how many times I’ve been woken up in my office by my crew members because I’ve just passed out at my desk,or how many times I’ve had to leave early because I felt so awful and can’t walk to another office to deliver paperwork without becoming dizzy and nearly passing out.
I wouldn’t wish this disease on my worst enemy. Yet so many people have it worse than I do. I have guilt from what this disease has taken from my parents and other people through me. I have a really hard time asking for help. For the last year or so I’ve basically been surviving with just my head tilted up to keep my nose above water. It’s taken months to convince me to be ok with my friends helping me out. Even still It’s a hard pill for me to swallow.
That’s my story. There really is a lot more gruesome details and the blood clots in my legs, the severe gout flare ups and my 2nd if not 3rd bout with cancer currently all putting me in the hospital for weeks at a time too but. This story is so long already I just can’t tell it all without it going on and on.
This disease has taken absolutely everything away from me. From my love life, to absolutely any chance I ever had at financial security, and a normal adult life. I question not only my faith in God, but my willingness to continue to fight. I’m one of the lucky ones. I have always been extremely strong physically and this illness beats the ever-loving crap out of me. It is extremely hard for me to fight and others with this disease would say I have it easy. I am so grateful to my friends who put together Witwer’s Warriors and the benefit. The amount of participation and giving that has already been received is absolutely unbelievable to me.
All I can say is, thank you. From the bottom of my heart, thank you.
Further: There is a benefit happening this Sunday: Witwer’s Warriors Benefit
The Witwer’s Warriors benefit will include a spaghetti dinner, live music entertainment, a silent auction, 50/50 raffle, photo booth, bake sale and a kid’s area. It will be held on May 17th from 1pm-6pm at Cambridge Place, 1821 W. Alexis.Rd., Toledo, OH 43613. Tickets are $25.00 for adults and $15.00 for kids. Call Ryan Nadolny: (419)320-4165 or Katelyn Mazur (419)215-6770 for tickets. Come join us in helping make a difference in our dear friend’s life.
There is also a GoFundMe page.