Reflections of my healthcare journey
I learned several things during my Adventure (as detailed further below):
It pays to be a smart patient
By that I mean taking control of your own care by asking questions to ensure a full understanding of what’s ailing you, what the solution is, and what the implications are. Also, bringing someone along who can provide a second set of ears is extremely helpful.
Get a great human who also happens to be a medical professional
It’s invaluable to have doctors and nurses who are not only experienced and technically proficient, but also treat you as a whole human, not just a collection of parts. The level of care I received was exemplary, not just it terms of the quality of care, but—perhaps as importantly—the quality of caring. I’m not sure exactly how you do that…I got lucky with a referral. My ortho surgeon was not only a great surgeon, but he took charge of the entire team that treated my infection and dealt with my other procedures. He stayed in regular contact with me throughout the ordeal, and gave me confidence in every step.
Pay attention to all of your Selves. Emotional, Psychological, and Spiritual needs
It’s easy to become laser-focused on your Physical issues, but it’s also important to keep an eye on your Emotional, Psychological, and Spiritual states. When all of those are healthy, your Physical Self heals better. I didn’t learn that lesson until late in the process, as I began to improve physically. It was only then that the emotional and psychological toll became clear.
Ask for help…even if it’s not in your nature
Pride and dignity are not your friends when dealing with health issues. Fortunately, mine vanished after just a few procedures. Good thing, too, because you’ll be amazed at how many people step up to help when you get your ego out of the way. As much as I like to be self-sufficient, I now realize that it takes a village. I was surprised and grateful for mine.
A great caregiver can make all the difference
The Mayor of my village is my beloved sister, and throughout this adventure she was my rock. She kept me focused on healing, didn’t let me do things that I was not ready for, helped me keep track of my meds, and created a wonderful list of questions for every conversation with a doctor or nurse. And she did much of it while sleeping on an inflatable bed at my house. It was a bonus that she was a retired RN.
Seek out pathfinders who have been where you’re going
Find people who have had similar experiences, and use their wisdom to help you through your own. Not everyone will have information that will help in your situation, but you can learn something from almost anyone. Even if it’s what not to do.
Don’t leave a catheter in too long
Those things get nasty (again, probably not an approved medical term), and though it was never definitively determined that the catheter was the source of my infection, it was the consensus culprit.
Don’t be in a hurry to have another surgery…unless it’s really, really necessary
By having my prostate surgery so soon after the hip replacement, the money I thought I was saving was spent on everything that ensured from the infection.
I’m not sure there’s any proof of this, but I firmly believe it makes a big difference. Maintaining a positive attitude allowed me to get through the entire adventure and be where I am today.
I had sixty years of good health, then four of not-so-good health, and now one year and counting of good health again. In total, that’s not a bad ratio. As my annual physical approaches, I’m optimistic that it will be routine. But if it’s not, I’m ready to be the Captain of my care.
Oh, and one final tip: remember the healing power of the Lorna Doones I received after my first surgery? I had thought those were a regular part of the post-op experience, but I learned later that my sister had brought them for me. So, make sure you bring your own. You’ll thank me later
The Adventure In all its Glory
For the first sixty years of my life, I was a pretty healthy guy. Of course, early on there were the usual kid things, and later occasional colds and flu. And sure, there were a few minor injuries along the way. But I had never experienced anything that required hospital admission or a surgical procedure.
But that all changed after my 60th birthday. It was as if a switch had been thrown to release all manner of maladies at once. Or perhaps I’m just the kind of guy who likes to batch things up. Whatever the reason, my 61st year began what would become a four-year odyssey that included:
- 8 surgeries
- 1 diagnosis of cancer
- The removal of:
- 2 organs
- 1 gland
- 1 mass
- 1 lump
- 14 days in a Transitional Care facility
- 1 very nasty infection
- 24 total days in the hospital
Spoiler alert: I’m fine now. And with one exception, I received amazing care from the numerous doctors, nurses, surgeons, physical and occupational therapists, aides, and other medical staff. Oh, and thank God for health insurance.
The adventure began with a routine physical checkup. The only things I was already aware of was being overweight and having osteoporosis in both hips, which had progressed to the point that it was making everyday activities (like walking, standing, sitting, getting dressed, and driving) increasingly difficult; in some cases eliminating activities altogether, such as hockey, which I had played almost every week for nearly 50 years.
When my primary doc told me I had high blood pressure, which could be treated with meds, I was hardly shocked (did I mention I was overweight?). Slightly more surprising was the diagnosis of a hernia, which would require the first surgical experience of my life. And finally, a somewhat concerning diagnosis of an elevated PSA which could signal prostate cancer.
I’ve always been a person who, when faced with bad news or a problem to be solved, focuses on the next steps to resolution. This was no different: first, get my hernia repaired and second, get a prostate biopsy. I decided the hips could wait.
And so, I had the first surgical experience of my life in April of 2014. My arthroscopic hernia repair went great, and did not require an overnight stay in the hospital. My fondest memory was getting Lorna Doones and beef broth in the recovery room, which I thought were the most wonderful things I had ever tasted. Perhaps it was the anesthetic.
My sister, a retired nurse, stayed with me that night, and except for one episode of a leaky suture, I healed up nicely. On to the next thing!
In June of 2014, I had the prostate biopsy. Two interesting things came out of that experience. The first was a diagnosis of prostate cancer (which required the urologist repeating the diagnosis three times before I fully understood what he was telling me.) The second was that his nurse noticed the difficulty I had in walking, and referred me to the surgeon who had performed successful hip replacement for her husband. The cancer diagnosis sucked, but the referral turned out to be an incredible blessing.
Because of my age (the phase “relatively young and healthy” was one I clung to over the ensuing months), the best plan of action was to have my prostate removed through a robotic surgical procedure. But I was assured that there was no immediate hurry, and I could wait until other things were taken care of first.
So I decided to visit the orthopedic surgeon next. It was determined that one of my hips was worse than the other, so I decided to get a total joint replacement on my right hip. I’m self-employed, so being able to recover quickly was important, and doing one hip at a time would allow me to get back to work sooner.
I got my new right hip in October of 2014. I had my first hospital stay, three nights, and this time the memorable things were the wonderful care I received, the warm wash cloth and newspaper delivered each morning by a volunteer, the fabulous pre-op gown that had adjustable temperature, and the very, very good hospital food. It was the first time in my life that I had to reminded to order meals.
After three days of physical and occupational therapy, I was ready to go home. Again, my sister stayed with me until she was confident that I could fend for myself.
I had now had my first two surgical experiences, and both went smoothly. This surgery stuff was a snap, I thought, so why not press on the next thing and get that pesky prostate removed? Not to mention, if I did it before the end of the year, I would save some money, having already rocketed through my deductible. Plus, if I had the surgery around Christmas, when business was slow anyway, I could fully recover by New Year’s and hit the ground running.
A solid plan. What could possibly go wrong?
Me and the robot met up in late December of 2014, and after one night in the hospital, I went home with fresh surgical incisions, a catheter, and an empty space where my prostate used to be. The urologist was happy with the surgery, and after a week, the catheter was removed. Subsequent testing found that my PSA had dropped to nearly zero. Hoo-ray!
I had begun the year with a hernia, two bad hips, and prostate cancer. At the end of the year, no hernia, one new hip, and no prostate. I was ready to start 2015 with less pain, a sunny outlook, and a commitment to rebuild my business, which had been on hold.
That lasted about 3 weeks. In early-January I began to experience abdominal pain; slight at first, but increasing almost daily. After 2 weeks, I visited my primary care doc, and he ordered a series of tests, including a CT scan. It was eventually discovered that I had a lymphocele infection. As before, I focused on the next step: treating the infection with antibiotics.
Or so I thought.
My ortho surgeon contacted me with some surprising information, at least to me. Infections like to attach themselves to any foreign objects in the body; in my case, a practically new artificial hip. So, I needed to have my right hip drained, which would—fingers crossed—take care of the problem.
It didn’t. Instead, I needed to have another surgery to remove the hip and replace it with a spacer until the infection was gone. I’m sure my ortho surgeon clearly explained my situation, but I clearly didn’t realize what that would really mean to my immediate future.
Surgery Number Four was performed in late February of 2015. After five days in the hospital, I moved to a Transitional Care facility. I enjoyed their hospitality for two weeks, during which I had PT and OT to learn how to live with my new hip spacer. In the event, it was worse than my original equipment—albeit worn out—right hip. The pain was worse and constant, my flexibility and movement were worse, and my new best friend was a walker. Oh, and the spacer made a clicking noise which continually startled my caregivers.
Wait…did I mention the other outcome of the CT scan? Apparently, while having a look-see for the source of the infection, a mass on my pancreas and a lump on one kidney were also discovered. So, during my stay in Transitional Care, I hopped into a wheelchair (okay, not hopped so much as lurched and dropped) and was transported to a visit to a surgeon to plan a course of action to deal with the undesirable interlopers that were attached to my organs.
The day before I was paroled from Transitional Care, I was again transported to a medical appointment, this time to Infectious Diseases. Thus began an 11 month relationship with a wonderful doc and her team. Not only did she manage my treatment plan for the infection, but she discussed the implications for future infections. She told me that if I ever experienced a high fever, I should immediately go to the ER and announce “I have no spleen!” Now, that may not have been exactly how she put it, but believe me, that’s how I’m gonna do it. Another infection? Thank you, no.
At last I returned home to start four months of home IV meds and weekly visits from a home care nurse to treat the infection. I still needed to use a walker, and I now added an IV port and wearable IV unit to my ensemble. Though I was hopeful that I could still do some work, that proved to be wishful thinking. I could manage some work, but I couldn’t travel or focus for any substantial length of time, so my income was significantly curtailed.
Time for the next step. It made sense to take care of the lump and mass prior to replacing the spacer, lest another infection result in starting the all over. Two weeks later, I was back in the hospital for the next surgery. (If you’re scoring at home, that would be Surgery Number Five.)
One surgeon checked out the kidney lump, and another removed the pancreatic mass. Both problems were resolved with no further action required. But apparently, part of that process included the removal of my spleen and gallbladder.
Parenthetically, I was assured that one doesn’t require those things to live a happy and healthy life. That has proven to be the case, but I can’t help but think that the manufacturer included them as original equipment, so one has to wonder. Doesn’t one?
Anyway, after six days in the hospital (during which—although the care was again wonderful— the whole hospital thing was starting to lose its allure), I returned home yet again to continue to treat the infection. I bided my time for two months until it was decided that it was safe to replace the spacer with another new right hip.
This sixth surgery went fine…at first. After three days, I returned home to re-start my rehab process. But at a subsequent follow-up with my ortho surgeon, it was determined that my surgical site looked a little funky (not an approved medical term, I’m sure), and I immediately went from the office to the hospital for another surgery (lucky Number Seven!) to treat sepsis in my right hip. They cleaned it all up, but it required two transfusions due to excessive blood loss. After five days, I again returned home with a clean, infection-free right hip.
One month later, in July of 2015, I had my last home care visit, and bid farewell to my IV pal, and soon thereafter, my walker. I used a cane for a time, and in November had my last visit to Infectious Disease.
Cured at last! Had I been able to jump up and click my heels, I would have. But fearing injury (not to mention humiliation), I simply thanked the Infectious Disease folks profusely. As I had said to so many caregivers along the way, “Don’t take this the wrong way, but I never want to see you again. Unless we happen to run into each other at Target.”
And so, 2015 ended as 2014 had: a new hip, and the prospect of resuming my normal life. I was quite done with the world of modern health care, at least for a while. I knew there was a left hip replacement in my future, but I wanted to take some time off to enjoy a life not being driven by appointments, tests, and treatments.
I waited several months, and then scheduled the left hip replacement. I was a lot smarter and more aware by now, and had learned to ask more and better questions. In addition, I was much more conscious of my physical state.
For example, I had discovered a small wound just above my right ankle, origin unknown. In the past, I probably would have slapped on some Neosporin and a band aid. But this time, I had my primary care doc take a look at it during my pre-op physical. He determined that it required attention, and my ortho surgeon advised delaying the surgery until it was completely healed. Well, not so much advised as insisted.
By now I was eager to get my new hip, but given my experience with infections, I decided that a few weeks in the loving arms of the Wound Care department was preferable to several months of infection drama.
Five weeks later, the wound had healed sufficiently for Surgery Number Eight to take place. It was performed flawlessly, and after one night, one warm washcloth, one newspaper, and one remarkably good hospital breakfast, I returned home. This time for good.
At the time of this writing, I am one year removed from that last surgery. Both hips are operating wonderfully, I am devoid of both pain and infection, and enjoying a better quality of life than I have for many years.