What’s in a diagnosis? My veteran husband Bill, and I have been going it alone for the last two years on a knee replacement gone bad and a raging infection that went undiagnosed for 8 months, which ultimately ended up with a diagnosis of numerous conditions related to Agent Orange and all of the presumptive illnesses attributed to it.
Read on for a 24-month tale of woe. Hopefully, to keep you from going through the same thing)
What started out as a wonderful trip to Iceland followed by 10 days in the English countryside of Yorkshire Dales, was suddenly to become a painfully long stay in a lodge hotel room. Traveling with good friends was the saving grace, because at least we could discuss what was happening to Bill with them. One of them was a retired dentist, so his clinical knowledge, although not medical was helpful in the process of elimination. He said, considering the pain is coming from the same knee as his replacement knee, it is probably going bad.” Not to be the bearer of bad news, just a realist and observations from his practice of 25 years.
A couple of days after arriving at the lodge Bill started to experience extreme knee pain, which was so painful he could not walk and was having trouble sleeping. Fortunately, our dentist friend had an over-the-counter recipe for a pain concoction that would produce close to prescription pain medication results. He often used this with his patients to avoid narcotic prescriptions. Thank goodness he was correct and come to find out this is a standard pain treatment used by many dentists all over the country.
The trip home was a tough one, navigating airports and international terminals in a wheelchair, which neither of us were adapt at. Once home we went right to the Emergency Room from the airport to see if we could find out what was going on. This step took over ten hours.
Red Flag Alert! When you self-refer to the Emergency Room you are lost for hours in a sea of everything under the sun, stabbings, heart attacks, broken legs, baby deliveries, I think you get the picture.
At long last, tests began, dozens of them to be exact, with no results to be revealed. At no time did anyone extract fluid from Bill’s knee, the consensus was the skin doesn’t feel hot so it could not possibly be an infection. I think the real issue, for all these various providers, is they knew that when you do a fluid tap in a knee transplant you can create more problems than you are prepared to deal with. This rationale went on for eight months until a medical appointment was scheduled for stem cell treatment of the knee to treat the tendonitis . The doctor who was going to do this procedure was very adept at ultrasounds and she took one look at the results and told us; Bill had a full-blown soft tissue infection and needed to have surgery immediately. And within, two weeks he was on the operating table and had his knee transplant removed.
Anger and indignation are two emotions that came right to the surface for both of us. After at least four to six doctors of one specialty or another had all told us there was no infection but none of them had actually tested for it. I now know that you must be your own advocate, even if it’s out of character for you, you must get aggressive when you know you need to have something done that the doctor might not readily agree to. Or you need another provider. Most of us are simply too nice and don’t want to ruffle feathers. But I ask you, what would have been so terribly wrong with testing for the infection even though the skin didn’t feel hot. It always felt warm and it wasn’t getting better.
The other issue is ageism, when you are a couple of 80-year-olds dealing the 40- or 50-year-old physicians, you are going to be lumped into the category of, “ don’t take them too seriously, they are old and probably suffering from some level of dementia.” Just like all 50-year-olds are not the same, so it is with 80-year-olds. Some of us still have working brains, computer skills, investment abilities and even some journalist aptitude.
What followed the knee implant removal surgery, was a spacer and the serious infection was treated for over six months before a new knee replacement could be inserted, as you can see we are not up to 14 months and counting. How this did not become septic is anyone’s guess. That would have been a “game over.”
With Bill’s first knee replacement it didn’t seem like it took too long to heal. This time, it was different and perhaps being 13 years older was the main issue for longer healing this time.
Several stays in long term recover centers became part of our routine and for our sake the one close to our home by 3 minutes, was the best one in the area. None-the-less, driving back and forth three to four times every day and bringing ice, special snacks, pajamas, pillows, underwear, the list goes on, and what you realize is your life as you knew it is now over. Things will probably get better, but not by a lot. This is who you are now, and you better get used to it or you will have a much rougher time adjusting to your current reality.
I know this is sounding like a pity party, and I don’t mean to go there. Both Bill and I feel extremely grateful for hundreds of things in our lives. I could take up the next ten pages just talking about our kids and grandchildren, the fact that we have the financial means to care for ourselves and dear friends and neighbors who are a significant part of our support system. We also have our sense of humors, which have carried us through our entire lives, regardless the crisis we might be facing at any given time. I jokingly say, “ none of us are getting out of here alive.”
By now you are wondering am I ever going to get to the “diagnosis” topic of this blog.
The first life changing diagnosis was the presumptive illnesses from Agent Orange, and this started us thinking about how many veterans and their spouses have no idea that they may be suffering health issues related to their military service from over 50 years ago. Gulf war vets much closer.
The second diagnosis, came only a few weeks after a civilian neurologist, from a VA neurologist. Although both were impactful the VA, physician was truly amazing. Dr. Shuck. I was very glad to have been part of the exam, which was extensive. Many of Bill’s symptoms I had noticed but couldn’t put a name to them. Such as odd facial expressions, that I noticed and would even comment on. But, of course had no idea these were telltale indications of Parkinson’s Disease. Losing his voice, losing his strength, not being able to walk straight, the hand tremor which had started last year.
One of the things that couples in our position have to learn to adjust to is how their lives will be different moving forward. Things I took for granted such as Bill always took out the trash, or if the smoke detector needed the battery changed, those were in his domain. Now they are in mine. Things that you believe are female roles and male roles, are out the window, and how you realign your thinking makes all the difference in how your life will look moving forward.
I think the best way for me to describe how I feel about this new phase in our lives is we are going through the grieving process of how things were in the past.
All things considered I am glad I do not know exactly what the future holds, both of us have made the decision to remain grateful for all of the important things, love for each other, our children and grandchildren.
I leave you with a new habit of reliving good memories from our history and I encourage you to do the same. These memories make me smile and make it easier to go to sleep at night. I fixate on those happy times, and the current reality is just that, current.