Week 5 Post Op: Hope, Trepidation, and Gratitude

The Banquet | René Magrite 

Greeting week five with hope and trepidation. I started perking up a bit in small ways. Using a wheelchair to help move around the house; eat at the dining table, pay a few bills...yes, this is my definition of hope and excitement.

This was followed by an extreme exacerbation of a pinpoint high pain in my pelvis, making me concerned about the implications of my "tumble" last week, that I have been trying to put to the back of my mind with little success. 

I am extremely embarrassed by, mad at, frustrated with the stumble that landed me on my right pelvis (opposite my operative hip). It was a tiny movement, while I was straightening a corner of the bedding, between the wall and the bed, that landing me in a precarious position.  The one good thing I was able to do was save the most important part of my surgery, which was the femur.  However, the realization of how a single movement can result in one's undoing has been extremely unnerving –– a small shift in weight can result in losing balance in a tiny space in a walker.  If I were in a different time I would be a goner – this is how animals died on the plains and this is often the trigger of the end game in old people, and that brought a lot of things about my situation in life to a crisp focus.

Life is a fine balance, and anything can act as a tipping point.  As they say things can change on a dime. We easily forget this as we ambulate through life until something goes wrong, and it can go wrong at any time. As I get older, have more experience with difficulties, especially medical ones, I realize how temporary it all is. And, that you have to savor each and every moment. And, appreciate very small moments.

Be grateful for your loved ones and all their imperfections, be joyful of a moment of connection with anything that moves you be it a plant, animal, human, or other. Be grateful for even the tiniest of things in a given day, because I guarantee you that there is always something to be grateful for. The smallest of gratitudes build onto each other, and even on the shitiest of days you can find many things to be grateful for;  like, being grateful for having energy to pay bills...sometimes I don't even have that. So, I will take it and run with it....ok, maybe I am not running with it.... I am wheeling with it! 

Week 4 Post-Op

Andrew Wyeth | Christmas Morning 

When recovering from ________ (whatever it is that you are recovering from) sometimes all you can do is lie there very quietly and look towards the horizon.

One Month: Still about the small things

So, today, my giant achievement was walking with the walker into my doctor's office and walking out of the doctor's office, with my husband by my side to make sure I didn't topple over. That was a very exhausting 50ft. I took breaks. But, I did it, and that is what I am grateful for today. Other than that I am pretty dang pooped... #ThereYouHaveIt

Day 28: It's the Small Things

When you get down to it, in life, it really is about the small things which add up to big things....but, it all starts very small.

I am especially reminded of this when I go through a long painful recovery, which I am right now....  there are no grand plans other than not having an accident when I am trying to rush to the elevated toilet seat in our bathroom, with my walker, and hip brace in place.

Or, having a shower, with the hip brace in place.

Or, paying a bill, that has been sitting unpaid since way before surgery.

It is these moments when you realize how small life really is, and it is so important to be grateful for what you have, because sometimes that is all you have.

This article,  12 Little Known Laws of Gratitude ,  I found humbly covers the reasons why I think #gratefulness is important in daily life and especially relevant when life is made even smaller than the "social norms".

Day 27

Wiped out is the theme of the day. Woke up wiped up....lying here wiped out...and just letting the muscles stretch a bit....sometimes that's all one can do.

Day 5: #Postop

There are some days that I really think I cannot go on any longer. Today is one of those. 5th day post op and I am in excruciating pain. 

Day One through Five: #PostOp

I have no real memory between day 1 through 5. The few memories I have is that I woke up in horrid pain to learn that the surgery was the more complicated scenario. 

ABC ... 123 ... Know your ICD9s & CPTs

Part of me wants to break out into song....or cryout Bingo.

Recently I had a Nuclear Bone Scan to determine the level of bone remodeling around the tip of my hip implant in my femur, to see if there is a difference from before "failed implant" status. Today I received a Lovely call from my local hospital saying I had a copayment of $649.00 for the scan that has a base cost of $2456.08(per the negotiated rate between my insurer and my husbands company). My policy is a 10%copay up to $2500 "out of pocket" maximum per year.

Before you have any conversation with an insurance company or a provider, especially if they have differing opinions arm yourself with these basics to sort out what may be the difference of a extraordinarily large out of pocket fee.

Know your ICD9s (diagnosis codes) and CPTs (procedure codes). These numbers are the most critical for determining whether or not the procedure you are having is covered and at what cost to you and the insurer. At a later date I will discuss the fascinating world of codes and how they make the difference between being paid and not. Sometimes there are alternatives.

Check if provider verified your benefits via a phone call as opposed to on-line.

Ask for a contact ID or name of person you speak to and take notes of the converstaion. As the person if there is a contact ID that tracks the call/conversation. Some insurance companies use representatives names

If there is a discrepancy, request a conference call with your insurer and provider. They usually will try, especially your insurance company.

What a Couple of Weeks ... and a Bit of Backstory

Day One Post Surgery

Two weeks ago,  I started the next series of surgeries to try to alleviate the ongoing, never ending pain in both my legs due to my mulit-focal osteonecrosis in both hips and knees.  This makes surgery 18 or 19.  I cannot keep up.  After careful consideration and meeting with our friendly specialists across the country the decision was to target the leg/joint that had the best chance of recovering fully, which is the right knee.  We had a 80% shot at success.

The hip revision specialist I saw, at Rush Orthopedics, in Chicago, Dr Wayne Paprosky, said to me, I see 1000s of patients a year with complex hip revisions, but only see a handful of people like you... (again, not the special I am looking for). He agreed we needed to target the right knee first so that it could handle the hip revision surgery.  The downside was that we knew that the weaker leg, with the failed stem implant, would be a challenge to manage, however that surgery is far more extensive,  has a much higher level of risk, and not straight odds of success. So, we went for it.

The plan was a right knee scope and bone marrow aspirate stem cells (from the iliac crest), which we did, with a possible micro fracture. A knee scope is no big deal, but a micro-fracture is a whopping kick-ass drilling into the bone surgery to bring blood supply to the surface to help regenerate cartilage. It results in a much longer recovery, much longer non-weight bearing, and a much much longer time (two months rather than the current three weeks) in a CPM (at 6 to 8 hours a day).

CPM MACHINE

We were braced for the worst case scenario surgery which is usually what happens, but that wasn't the case.  Thank Goodness, because based on what is going on it would have been a horrible horrible recovery! The last 14 days were bad enough. The good news is that the knee recovery has been relatively straight forward, until my hiccup yesterday, but that is the way it is with a knee that has had 5 surgeries (I guess).  This is going to take four times as long to recover.  I am practicing patience

More importantly, what I did not anticipate were two things. 1) The extent that my left leg, which is the weaker of the two legs due to end-of-stem pain, would not manage the "loading" required to support the early phases of recovery and 2) a dental infection for which I had an emergency root canal Monday before last. Both kicked my ass to kingdom come. Post-op and the first two days of recovery were looking good. I was alert, talking medical research etc. On the morning of the third day, I stood to pivot on the left leg, which overloaded the femur and the loose titanium stem in my leg (which I felt rotating) and then I was screaming in pain all the way back to PT (physical therapy). That single movement wreaked havoc on my body, and tipped the scales of my wellbeing. I ended up on heavy duty pain killers, to buffer the discomfort. Jesus that was rough. Then, the tooth, for which I was pro-active about taking care of (fixing an old filling) prior to surgery, because I know that dental problems/germs can cause problems at elevation (I went from sea level to 8,000 feet) turned into a full on dental infection. I went into surgery wondering why the tooth had not recovered from the treatment I had at home, but was so focused on surgery, that I ignored the signals. The weekend before last I was holding on for dear life repeating to myself that I just needed to get to Monday, pouring large amounts of Indica tincture on my tooth to stop the waves of excruciating pain. I had onboard lots of pain killers for the left leg. I even wanted Larry, my husband, to take the tooth out with pilers, that was the indicator that maybe it is more than a sensitive bite. Last Monday, I was able to get an appointment with a local dentist, who was able perform an emergency root canal. It was a good thing because it was pretty nasty.

For 10 days we were in triage mode. The infection triggered concerns of infection impacting the replaced hip, so I was placed on 2000mg of antibiotics a day. And, because there are so many weak links in my body, we have been playing "whack a mole" trying to calm down overloading parts. The medical team got into full gear to get me a wheelchair, a raised commode so I did not have to overload my left leg (I never thought I would be so happy to have a raised toilet seat), additional ice machine components which help with pain. Thankfully things are calming down. It was a rough ride. A lot of stress. I am thankful, we are around that bend. My husband, Larry, has been a hero managing everything. I finally started feeling somewhat like myself this weekend. My knee is finally progressing and getting stronger. (I like those stem cells). It is clear I need to focus on getting my hip replacement replaced, which we do have a plan for, but right now the focus is to get the knee ready to rock and stabilize it so it doesn't require more surgeries...that would be grand.

What I learned:

1- The thing that you worry about is usually not the thing that will go wrong.
2- Don't ignore continued dental pain. Chomping on a bad tooth can result in a root canal.
3- Keep your focus and wits about you
4- Have a sense of humor.
5- Have a great team! (which I do!)

Two Illnesses and a Death: What I learned About Patient Advocacy

Whether my fortune or misfortune, recently I have had the opportunity to flex my patient advocacy skills for the benefit of my closest friends. Although each situation was radically different, much to my surprise I could leverage what I have learned over the years and find that I am very comfortable in a hospital/medical setting, maybe too comfortable (LOL).  The skills I learned for one specific illness can be transferred to another illness. The specifics are different but the rules are generally the same.  Newbies (those new to medical treatments) find the system daunting. I used to think it was about intelligence.  It has nothing to do with intelligence. It seems a lot to have to do with expectations, naiveté, and language.  There are code words everywhere, and now that I have done this over 20 years I seem to have learned something. It is like how I learned gardening. You learn by doing and repetition, and by exposure to the language. Think of it as language immersion classes. 

The most important thing is even if you don't think you know something …. ASK… ASK … ASK. People are far too often afraid to ask the doctor questions. Some worry, even myself that she/he may get irritated. Go for it. It is your only opportunity.  You are paying for it. Doctors have a pretty good ego. (And, if they don’t there are other problems to think about. That’s a yellow flag in my book.) It is your life after all. I use the mantra, I am the CEO of my body. It is the doctor's job to answer your questions and help make sure you two have a good working relationship. If not, that can be/should be a deal killer. 

Follow your instincts, not some dictum, even if the doctor is the "Top in their field”. Medicine is taught and delivered by humans to humans and to deny that human factors in medicine exist, is being in denial. All this means is that medicine, whether Western or something else, is never ever perfect. Don't let anyone tell you otherwise. My motto is: You can have good outcomes with bad doctors and bad outcomes with top doctors. It is ultimately a crapshoot. All you can do is the best you can at any given moment as does the doctor and his/her team. 

You have to follow your instincts of what is right for you, and hey sometimes that doesn't always work out. Ultimately you have to live with the consequence, which means each medical decision you, as the patient, make needs to become your responsibility. I find that a useful technique because then, if something goes bad, I cannot say well…this is x and y's fault (unless it clearly is, e.g., a mistake was made). For me, that technique increases my investment in the medical decision/choice at hand.  So, I take joint responsibility with the healthcare provider and their team, whether it be a Western or non-Western approach. 

That leads me to the next realization I had…a new diagnosis leads to all sorts of well meaning people who want to share, help, give, impart knowledge and experience, commiserate, love the person(s) in the medical crisis. As a patient, especially with a new diagnosis, and lack of experience in the medical system, you have to filter, rank, and analyze all the incoming inputs. This, I have seen can lead to treatment paralysis, or treatment overkill from everything to Ayurvedic, to Andean shaman, and bee-sting therapy, that doesn't include all the detoxing and supplement overdosing that can happen.  It is hard. There are so many choices out there. It can be helpful to get a good third ear to listen and help make decisions, and then run the decision past that, can I live with this “filter" and go with it. Sometimes you have to tell people to stop giving advice, but know they are coming from a position of love. And, sometimes, especially during an acute crisis, people's personal issues get intertwined with the desire to help, so one needs to keep that in mind too. I still struggle with novel treatment solutions to varying degrees.  It seems to be inversely correlated with how well I am feeling. When I am feeling worse, I start rooting around looking for a new thing that is not Western mostly, and even new Western techniques, and start a supplement regime.  I just did it last week. So, even old-timers, suffer from looking for the new best thing. And, sometimes it is good to do, as time moves new treatment protocols come along, so it is not all bad to look for new things.

Lastly is patience, there is nothing like the motto, “Patients are practicing patience”. From waiting rooms to diagnosis, to healing, to dealing, with billing or rehabilitation, to … you name it.  I find it a sublime meditation. For me, that has been the metaphor and mantra of my evolution, and continues to be that which I need to work on most. I have learned when I need to hurry things along and those that don't really help hurrying. Medicine, especially when it involves you, can get very complicated, and sometimes we do ourselves a disservice. We try/want to hurry things along especially healing, that is another really hard lesson! Giving us time to heal, giving one self-permission to heal, and sticking up for it is a real challenge in this culture. We are far too trained in our society to focus outside ourselves …work…do…We are nothing if we aren't doing. (I am not one to talk). Healing both physically and spiritually is very important. And, in a world that is not comfortable talking about, or acknowledging, illness and death, it is not easy to give permission to take time to heal and to slow down the pace. Sleeping is so important for healing of the body and the brain. That is one of the reasons that hospitals are quiet.

Looking back on the last weeks these are the big picture things I learned from being with my friends in their difficult times. I hope to look at each story and bring out more that I learned to share.

Here are the tops tips:

1. Ask questions!  You are the CEO of your body; it is your right to know and be informed
2. Learn the language
3. Trust your instincts.
4. Live with your decision. It is no one else's.
5. Filter well-intentioned recommendations (go through steps 1 though 4)
6. Have patience with all of the above and yourself. It takes time to learn the language and nuisances of the system. 
7. Give yourself permission and time to heal.