Publisher’s Intro
by David Wallace
I met Gary and Kathy Vogt by sheer coincidence while taking the shuttle bus from the San Francisco airport to our downtown hotel, in early December 2014. We were there for the MPN Heroes Award Event, while I was also covering the ASH conference for PV Reporter.
Numerous things struck me about the couple, from Gary’s almost never-ending chain of difficulties prior to being diagnosed with Myelofibrosis (MF) to the unwavering support of his wife Kathy, lovingly referred to as “The Kraken.” After meeting them and forming a bond of MPN Brotherhood, I wanted to share their story in hopes of helping other MF/MPN patients while increasing MPN Awareness.
While each of us travel the twisty road of our own unique MPN journey, it is imperative that the patient (and caregiver) become educated, empowering us to make informed treatment decisions that can positively affect our health.
Navigating our Medical System with Myelofibrosis
by Gary Vogt
Rewind the clock, over 30 years ago as a young man, I complained of having itchy skin. It was hard to describe to anyone but felt like something was crawling inside of me. Suddenly one day the itch became a rash on my hamstring and calf’s. When you scratched the itch it burned. When taking a shower the itch intensified with hot water running on it. I went to a skin specialist who immediately suspected Leukemia. After a blood test and throat culture it was diagnosed as a hidden strep throat. I had no other symptoms at that time, nothing to signify strep. I was given heavy doses of penicillin and the rash along with the itch went away.
Healed or was I?
There began a time where temperature changes gave me hives. From a warm house to winter temps and the hives were wicked. This went away and explained as a reaction to the penicillin. Maybe, but that crawling like itch would come and go over the years, never really went away. In my 30’s, I went for a routine checkup, my doctor told me I had high blood pressure and inflammation in my legs. I went on blood pressure pills and a diuretic. After a change in doctors, I was taken off both of these meds and things remained as they were.
In my 40’s, I began having bone and joint pain added to my growing list of symptoms. The pain went across my upper neck and shoulders down the arm with a tingle in my fingers. Then the heavy chest feeling and off I went to the hospital.
Now something was amiss because they kept me overnight and the next morning a heart catheterization was performed. After many tests and a couple years of observation by a very good cardiologist, Rafael Papaleo, it was determined the problem was not my heart. I was however back on blood pressure pills for border line high blood pressure. Within those two years that nasty rash came back. After going to a skin specialist again it was determined I had an allergic reaction to meds. I was told to stop all meds including vitamins. They sent me to an infectious disease doctor who tested me for every disease known including Lyme disease. All negative! Eventually that rash went away. I should also mention in these early years, I had heavy contact with both Benzene and Toluene (through a previous job and numerous furniture refinishing projects), both chemicals associated with MF but not proven.
All these symptoms I have been living with since my 20’s. For the most part, very mild except for the few noted occasions. Could all of this been the beginning stages of MF? They tell me I will never know.
Weight lifting Now Brings Pain
In 2010, a night after a good workout my joints would throb so bad I discontinued weight lifting for what I thought was temporary, perhaps I was pushing myself too much. I was approaching the big 50, but taking time off did nothing. I couldn’t lift without enduring the type of pain you would get with RA. Eventually I went to yet another doctor for a routine checkup with all the same symptoms, and now a swollen black eye that shifted from one eye to the other, pretty weird. Of course doctors are looking at me like this is all in my head. Once again, off to an infectious disease doctor, who tested for all the same things and negative, I’m good!
In 2013, I had a fall getting out of my truck. I played a little joke on a friend of mine. Laughing while getting out of my truck, I went head first to the pavement splitting my head open. I think I blacked out, blood was everywhere! Smart as I am, I decided to patch it up with stiri strips, never went to the hospital. Two weeks later I get neck and shoulder pain again, down the arm and tingly feeling in my fingers, heavy chest. To the hospital I go, but this time a swollen spleen was detected in a chest x-ray. Because it was noticed, they did a CBC which showed a low platelet count. The ER physician directed me to follow up with my general practitioner who sent me to a hematologist.
Now after being examined and a bone marrow biopsy performed, a diagnosis was not provided. Myelofibrosis was mentioned, but a series of testing had to be performed. They tested pretty much all organs focusing on the liver and spleen, everything was good except my swollen spleen. So now we are in a wait and see mode, and my pains are getting more intense.
Symptoms Intensify
Something is seriously wrong. My left side under my rib is getting worse. I’m having shortness of breath episodes, tired, still with bone pain up around shoulders and neck. My hematologist is still in wait and see mode and told me I should again contact my general practitioner. I did, that same day! On the eve of the New Year 2014, I pleaded with my general practitioner to see me which he did. A CT scan shows fluid on my lung. An appointment was made to see a pulmonologist as an emergency follow up to the CT scan. Because the appointment was made for two weeks (some emergency) I called the office and got in a few days later. The Dr I saw, Dr. David Strumpf, was a breath of fresh air.
Dr Strumpf took one look at me and knew a problem existed. He first asked “give me a little history, what seems to be your issue?” So I began with my left side pain and then the breathing issue. I started telling him about my hematologist and where we were. Now at this time my wife Kathy (the Kraken) is showing her concern and frustration on her face. You see I have always been a laid back type of guy most of my life. I evaluate things, take a deep breath and make the best decision. The doctors are the professionals, they went to school for this, they will figure it out!
In the mean time, my wife is listening to me complain about all the pains and itches for years. Of course she probably thought I was crazy too. Outside of a few visits to the cardiologist back in 2007, Kathy for the most part let her big boy go to the doctors by himself. It wasn’t until they hooked me up with a hematologist that she would show up, taking time from work to be with me. For me it was just another doctor, I didn’t realize what kind of doctor he really was until she told me. My wife’s face is showing outburst because I asked her to keep her thoughts to herself while the doc does his thing. He said “hold on right there, I want to check the previous x-rays and CT’s, compare them to the ones I took today. It may take a while so please be patient.”
He leaves and Kathy tells me if they send me home she’s going to go crazy! The doctor was gone maybe 5 minutes, Ill never forget this moment. He said “I don’t want to say anything bad about anyone but I don’t know what everyone is looking at? I took one look at you and can tell you’re really sick. The first x-ray they took shows fluid on your lungs, you have much more there now. You should be in the hospital and you need to have the fluid drained. If you let me, I can make that happen right now.” You would think after a doctor says that you would be scared, but I was relieved!
Doctor Gets Things Moving
Now Kathy just burst out with THANK YOU and a big hug to the doctor who is now her favorite. I go see Dr Strumpf and 9 out of 10 times Kathy is with me. Even if things are fine she feels the need to go. Should I be jealous? We can hear the doctor yelling at everyone on the phone doing what he said, making it happen! He told us to go directly to the 3rd floor, go to the desk and tell them who you are. He didn’t want us to hear him yell at everyone. We did as he asked and they had a
room all set up for me. Before I had my gown on, the guy was waiting to take me down to get my lungs drained. A nice long needle in the back and a 1/2 liter of fluid was drained from my lungs. That was the first of three. Now the tests started again, what the hell was wrong? What is causing the fluid? My spleen grew very quickly and very large during the wait and see program they had me on. A doctor should listen to the patient when he expresses that there is something REALLY WRONG!
They thought I may have lymphoma in my spleen. Take the spleen out, problem solved, they hope. I meet with a really good surgeon, Dr. Gregory Field, who thinks he can do it laparoscopic, but won’t know for sure until he gets in there. He tried, I have the scars to prove it. What should have been a one and a half hour surgery turned into almost six. They cut me from side to side and lifted out an 8lb spleen. My spleen was attached to my diaphragm, stomach, and pancreas. I was pretty lucky in a way, if it were let go any longer who knows. The surgery really kicked my ass, but this was just part one.
“The Kraken” Takes Charge!
Now Kathy at this point is in take charge mode! She bathed me, she put lotion on my feet, gave instructions to the nurses. Anything went wrong, Kathy was sure to let people know. She still had me telling her to be patient and let them do there jobs. I was in ICU and then a couple other floors of the hospital before I began having stiffness in my arm where the IV was. I told the nurses about it but they kept saying the IV was alright. That night Kathy came back in after work to check on me and noticed the arm was swollen, felt warm to her, all I said was it ached. I was sick and frustrated in my recovery. I wanted out. It was time, “time to release the Kraken.” I told her I was done, go do what you want, but please remember when your gone I still have to be here with these people.
That was it, the Kraken was in war mode! I had an ultrasound done on my arm at Kathy’s demand. It showed blood clots formed in the arm and I was given the proper treatment for that. The next thing I know I had all new doctors. The head honcho was on my case and attending to me personally. I got hooked up with a new general practitioner, Dr Rahim Dhanani, and a new hematologist, Dr Ira Zackon. All my doctors are top notch, they know each other and talk. One doesn’t do anything without the other. I should have released the Kraken a long time ago. I was released from the hospital with a follow up visit to every one. In that two week span, fluid continued to build up around my lungs and heart. Breathing became an issue once again. They drained my lungs a couple more times and sent me to my cardiologist. I was sent to Albany Medical Center, where they did heart surgery putting in a pericardium window. A little drain hole in the sac surrounding my heart so the fluid drains.
My body wasn’t really over the first surgery yet. Having a drain tube coming out of my chest sucked! That’s all I will say about that. This hospital stay was much better as far as care and the Kraken was in peace mode. I was suffering in pain and grateful to have Kathy taking care of me, the Kraken was good! It was three months of hell for us both in different ways. Of course we were not done, pathology reports were still insignificant.
They informed me, by law, without the gene it cannot be diagnosed as leukemia, so Myelofibrosis was suspected. The gene mutation used to diagnose MF is very confusing to me, this is where I step aside and trust the doctors, as it seems new mutations are being discovered on a regular basis.
Finally, after a third bone marrow test and a visit to Dana Farber in Boston it was confirmed to be MF. I was then given a 1-8 and 2-6 year life sentence by two different doctors. Intermediate stage with a progressive outlook they said. Thank goodness for my cousin Keith living in the Boston area, he made an awful experience into a good time. Although on the road to recovery, my fight with MF was far from over. Many doctor visits, a lot of praying and another set back were in my future.
The Next Fight with MF begins
With MF, your bone marrow does not produce blood cells properly. My white blood cell count went ballistic infiltrating my lungs and clogging up air pockets. Back to Dr Strumpf I went, and then off to Albany Med. This one was scary too, I couldn’t breath. I was given oxygen all day. Bloody noses that wouldn’t stop, platelets were given, transfusions of red cells were provided. Signs of liver and kidney failure began. A bronchoscopy and a biopsy were performed on my lungs. Heavy doses of Hydroxyurea were given, cocktailed with the highest dose of Jakafi. I then developed vasculitis, my legs filled with fluid. Another biopsy in the leg and a good dose of prednisone was prescribed. Luckily the drug combo and a two week stay cleared things up enough to send me home.
Kathy Recognized as “Caregiver Supreme”
Since then I determined that ignoring my illness was not an option, I needed to know more. I began researching and that’s where I found the MPN Research Foundation, Incyte Corporation (Jakafi) with programs like “My life with Myelofibrosis.” It is also where I found MPN Heroes, the program put together by Incyte and Cure Magazine to promote awareness of this deadly disease and to award caregivers for there part in this journey. I thought a perfect way to show my appreciation to my wife “The Kraken.” I never expected her to win but she did. She was selected with three others in her category, a total of 8 awards were given that night. They flew us to SF, the same week as the ASH convention. They paid for an extra night due to some airline issues, going above and beyond.
It was a great experience where I got to meet a number of very special people and provide my wife with a much deserved award as my caregiver. I knew it was the right thing to do, not only for Kathy, but myself, during the eventful shuttle ride to the hotel I met David Wallace, publisher of PV Reporter. Just the day before, I flipped one of his articles into my Flipboard magazine “MPN Research.” It is funny how small this world can be. I learned a great deal that weekend, a fire now burns in both Kathy and I to bring awareness to MPN diseases.
I do feel better, but still sick and waiting. Waiting for MF to pull another fast one. Waiting for doctors, research, perhaps a cure. Waiting, why do WE all wait? We should all be like “The Kraken” and move while the clock is still ticking!
Publisher’s Note:
I should note that Gary was a close friend and someone I admired for his courage, kind and gentle nature, contribution to the MPN community and so much more. Sadly, Gary passed away in October 2017.
