OK, this post is going to take up more than a little space and, depending on your tolerance for medical minutiae, a bit more of your time than our usual posts so, when you’ve ingested as much as you need, feel free to move on with your life and there will be no hard feelings from this corner.
Over the years we’ve spent inside your radio speakers we’ve done our best to walk a fine line of being responsible broadcasters and, as our vision of that responsibility dictates, being honest and open with you, but still maintaining a semblance of a private life. Now and then, that privacy thingy becomes a bit of a blurry line if we feel that there is a more than reasonable chance that sharing something from our personal lives with you could help someone else who is dealing with the same situation.
Our on-air conversations about how Johnnie dealt with her loss of taste and smell (Anosmia) and our conversations and posts here about Steve’s diagnosis of Celiac Sprue and need to follow a Gluten-Free lifestyle are two examples of the kind of sharing we’re talking about.
There is another that we’ve talked about on the air but, because it was in remission, we didn’t think we’d be revisiting in this space. However, over the past several weeks our lives have taken a rather significant turn and we thought it just might be the time to share why you haven’t heard much from us here as we learned how to deal with the return of Steve’s Autoimmune Hepatitis.
First, for those of you not familiar with it, Autoimmune Hepatitis is NOT contagious and, because it is an autoimmune disease, its cause has NOTHING to do with drugs or alcohol!
Unfortunately for Steve, a significant amount of people diagnosed with Celiac Disease (Celiac Sprue) develop Autoimmune Hepatitis. Both are autoimmune diseases. In a nutshell, your autoimmune system is cattywampus, so your body thinks your liver is a foreign object and tries to kill it.
Steve was originally diagnosed with Autoimmune Hepatitis (AIH) in 2002. After coming thisclose to a liver transplant and almost dying, with the help of some great doctors, some 14 years later he was in remission and able to come off medication. Sadly, after 3 years in remission, we recently confirmed that AIH has returned.
We’d been aware that something was not quite right for a few months. I (Steve) was getting increasingly fatigued, breaking out in a sweat with very little exertion and noticing a weakness in my voice. The night of our 2017/2018 New Year’s Eve special, before we headed out to WGN, I told Johnnie that I really wasn’t feeling well and that I hoped my adrenaline would kick in and help get me through it. Fortunately, it did.
Even in remission, I had regular visits with my hepatologist and, fortunately, one was scheduled just a few days away. One look at me combined with blood work results confirmed to my doctor that AIH has returned and I am back on medication that suppresses my autoimmune system to fight the problem and, assuming the fight goes well, I will be going on a liver anti-rejection medication and stay on it for the rest of my life.
At the moment, there are good days and bad days. Some days the fatigue is pretty overwhelming and I just have to lie down for a while. Other days, I’ll have more energy and feel reasonably OK going out. BTW, because I’m NOT contagious to you, but you ARE to me, with all the flu going around, if I’m anywhere near a crowded space, I’m the guy in the mask. Actually, combined with my sunglasses, this Lone Ranger look kind of works for me.
As this is being written, we’re spending a couple of weeks at our vacation home in Panama City Beach to get a little sun and build up a little energy. We almost didn’t make this trip. My doctor said I shouldn’t drive, but OK’d a flight. Up to the day before our flight we were thisclose to cancelling because I just didn’t have the energy. Fortunately, the day of the flight the meds seemed to have started kicking in and I felt well enough to walk (With mask and sunglasses, of course:-) through Midway airport.
Some fatigued days are spent just relaxing, but there are starting to be more days when heading out for some “guitar therapy” (More on that in a future post) finds itself on the menu.
We’re in constant touch with my hepatologist about weekly blood work results and we’ll be heading back to Chicago to see him in a few days. The good days are starting to show up a bit more but, as we know from past experience, this is a long haul journey.
Personally, I’m optimistic. I’ve got a great doctor, a WONDERFUL “live-in nurse” who has learned the names of the guitars helping me on this journey and, don’t be surprised if we show up back inside your radio speaker one of these days.
The sun is out and the glass is half full.
Now then ….
We said at the outset that one of the reasons for this post was to help someone else who is dealing with the same situation.
Unfortunately, there are far too many people all over the word dealing with Autoimmune Hepatitis and trying their best to learn HOW do live with this thing that has turned their lives upside down. Not everyone is as lucky as I am to have Johnnie and not everyone is as lucky as we have been to have access to good doctors who LISTEN and help you understand what has happened and how to handle it.
So, we went back through our archives and found what we had written back in 2002 when Autoimmune Hepatitis first entered our lives and below we’re reprinting some of it. If you have no interest, just pass it by. But, if you are a newly diagnosed AIH patient or you know someone who is, you might find something from our past experience that helps you.
When Autoimmune Hepatitis forced us off the air for 5 months in 2002, here is what we wrote.
First, we have to start out by thanking all of you who have deluged us with wonderful calls, cards, e-mails and all manner of good wishes. We’ve always known the “extended family” bond between WGN Radio and our listeners was something truly special. You prove it again and again. All we can say is a very sincere thank you.
OK, so where in the world are we and what the heck is going on? Well, here in print, as our dear friend, Paul Harvey, would say is –“The Rest Of The Story.”
I have to say that Johnnie and I never thought we’d share so much of our own “medical minutiae” with anyone on a web site, but … after all … you guys are family, so here goes:
For quite some time, I was having an increasing problem with my voice. I thought it was some kind of allergy, but as it was causing more and more problems for me on the air, Johnnie and I went to our regular family doctor to see what the deal was. Thorough man that he is, along with suggesting an allergist, he had me do some blood tests.
Those of you who are regular listeners know that our last day on the air was the morning of Sept. 5. After we got off the air Johnnie and I along with our friends, Gary and Sue headed up to Door County for a long weekend. Johnnie and Sue share their Sept. 5 birthday and it’s become a tradition for Gary and I to treat them to a “plastic burning” weekend in that beautiful Wisconsin area.
I should mention that along with my voice problems for some time I’d been experiencing a lot more fatigue than I was used to. By the end of our first night in Door County I was feeling pretty poorly. There are no phones where we stay, but late in the evening Johnnie checked her cell phone for voice mail. There were several calls, from, Denise, our producer, and from our doctor saying we needed to get in touch with him. Since it was late when she got the message, Johnnie couldn’t get through to our doctor till early Friday morning and then, with the bad cell areas, they played phone tag, but the message finally came through — my blood tests were VERY abnormal and the doctor wanted us to get back to Chicago immediately for CatScan and other procedures. It looked like I had a potentially serious problem.
Gary drove us back to Chicago and we made it to the doctor’s office just in time for a consultation and firming up of a battery of tests that would be performed on Saturday.
My personality is such that I deal best with something when I know as much about the parameters as possible, so I asked the doctor what the best and worst cast scenarios looked like. He responded that the worst case could be Cancer and the best case could be some form of hepatitis.
I found it a little strange to deal with what the doctor said was our “best case” option, but found a bit of comfort in rooting for a “little h” as opposed to a “the big C.”
I’ll skim over the next day of tests to the results that began making their way into our doctor’s office by the following Monday. I will mention however that, at this point, my appearance began to resemble a very fatigued box of Screaming Yellow Zonkers. By Monday, a steady stream of information was dribbling in and it was becoming apparent that some form of hepatitis was definitely in the running as a probable cause, but what kind was still up in the air plus we needed more information for confirmation.
It also became apparent to our doctor that we needed a hepatologist — “yesterday!” Unfortunately, even with our doctor’s help and recommendations we ran into problems getting any appointments with a doctor who could see us in under a month’s time and Johnnie (who was doing all the phone work, because at this point my voice was down to a whisper) found that hepatologists are not easy to find in the Chicago area. Once we thought we had an appointment nailed down with a doctor whose reputation we respected, but he was called out of town on a family emergency.
Even while our options kept falling by the wayside, good friends were jumping in and doing their best to help us with what was becoming by the minute a more difficult and stressful situation. Lyle Dean and his wife Sharon were able to help Johnnie set up an appointment with a very respected doctor. Hearing of the seriousness of the situation, Paul Harvey called and set about the task of moving a few mountains to put us in touch with a doctor whose reputation put him high on the list of most people we’d talked to … and he could see us the next day.
While Johnnie had been tirelessly working the phones, I’d been doing a bit of research on the web. I was a bit baffled, since I’m not a seafood eater, hadn’t shared any needles with anyone and my idea of a lot of alcohol is about 5 drinks … in a year and I do think I’d recall if I’d had a blood transfusion plus, most of the symptoms of hepatitis A, B, or C didn’t look like they applied to me. In addition, as more blood work kept coming in, one by one these types looked like they were being eliminated, so I decided to see if I could find any connection with my having Celiac Sprue (a complete intolerance to Gluten, which is found in wheat, rye, barley and oats) and hepatitis. Sure enough, my searches turned up a relationship between Celiac Sprue (an autoimmune disease) and something called autoimmune hepatitis (your body decides it doesn’t recognize your liver and just wants to make it go away!) AND the symptoms matched what I was experiencing. We immediately showed this information to our doctor and took it to the hepatologist the next day.
THE DIAGNOSIS: The hepatologist was very familiar with autoimmune hepatitis and, after more tests, confirmed that, in fact, I have autoimmune hepatitis, a non-contagious form of the disease.
Now that we knew what the problem was the doctor needed to determine how much liver damage had been done and was it treatable or would we be talking about a transplant.
As much as we appreciate your concern and want to answer as many of the questions you’ve sent us, please allow us to also appreciate the limited tolerance any of us have for “too much information,” particularly medical, and let’s just fast forward through the liver biopsy and other tests.
BOTTOM LINE: I have severe liver damage and after a hospital stay we were still not sure if the steroids I was taking were going to do what they were supposed to. We just had to wait and see.
WHAT’S THE LATEST? After weeks of tests and heavy medication the doctor smiled as he said “It looks like you’ve finally turned the corner.”
SO, WHAT NOW? The game plan is to continually be tested, monitor the medication and hopefully segue into what will be a two year treatment with the goal being remission. After that, continual monitoring for the rest of my life and, with luck, the only transplant conversation I’ll ever have is about that curly Carrot Top look I’ve been considering.
SO, WHEN WILL WE BE BACK ON THE AIR? That’s still an unknown. The doctor knows we want to come back, but keeps reminding me that I’m in no shape to do that physically or vocally … yet. It could be months or weeks, but I only want to go through this once so we’ll be back when it’s right.
And this update from a couple of months later.
For those of you who can’t play audio, we thought we’d summarize our conversation with Nick and Garry. The bottom line is that we just got some good news! After 9 weeks of treatment we’ve gone from talking about a liver transplant to getting a report that says the liver readings are normal! What happens now is a gradual lowering of the dose of the medication I’ve been on to a small level that will be used to maintain the liver’s stability. Also, a new medication (an anti-rejection medication) is being added that I’ll be on for the next 2 years to, hopefully, put the Autoimmune Hepatitis into remission.
OK, for you Radio Road Test fans, try this analogy: We got lucky and didn’t need to get a new engine (liver) because we were able to rebuild the old one. Now the trick is to keep it running smoothly.
While I’ll be monitored for the next 2 years, the initial concern in the next several weeks is to make sure that my system accepts the medication. In addition, while the medicine works its magic, I’ll be starting a daily exercise regime to help build up my stamina.
That’s what we wrote in 2002.
Now, here we are, in 2018 and today has been a good day.
I’m a lucky man.