I’ve spent a ton of time in this blog bemoaning how difficult healthcare has been for us on the road and this blog is going to be another example of that.  Even now that I have “good insurance” again that doesn’t guarantee us good healthcare.  I continue to talk about it because we started this journey in fantastic health.  We went to the doctor annually and rarely had any issues.  Five years later and five years older that is no longer the case.  We are both taking medications that need to be prescribed and we have both have had issues, minor and major, while traveling on the road.  For the last three years we were making that work by seeing the same doctor annually in Portland, but since we knew we would not be going back there this year I needed to find another solution.

A huge part of the problem for us is we came on the road without a primary care physician (PCP) in a home base.  We loved our doctors in Keene, but knew we would not be able to get back there once a year for physicals.  We probably could have stretched that to two years because of the long term relationship, but Lee was unwilling to commit to be anywhere year after year.  That might work if you aren’t on any medication, but once he had the heart attack and was taking five different pills the scenario changed dramatically.  My compromise was to try and find him a new PCP in Charleston.  I thought we would be passing through to see Oliver at least once a year and maybe we could start a new relationship with a doctor.

Not knowing any doctors in Charleston, we talked to our daughter and she recommended hers.  Since we are here for a long stretch of time I was able to get Lee an appointment and last month he went to see her.  The point of the appointment was to transfer his medical records to her and since Lee was also having pain in his right arm that was unusual he decided to talk to her about that.  She sent him to get a couple of X-rays and they discovered calcium deposits on his shoulder.  Lee specifically stated he did not want to take any kind of an addictive narcotic for the pain, and she said that was fine she would call in a prescription by the end of the day that should help.  She also referred him to an orthopedic specialist.

After calling twice, the next day he learned that she was refusing to call anything in because of his heart condition.  She was being ultra cautious because of the other medications he was taking.  The ortho appointment was also in three weeks.  At this point Lee’s pain level was very serious.  He was only getting about 2-3 hours of sleep each night, and the pain was pretty intense and constant. He didn’t feel he could wait three weeks and by changing the doctor was able to get an appointment in a few days.  In the meantime,  we did some research and learned that he didn’t just have a calcium deposit but a bone spur.

Lee suffered through four more days of pain and finally the appointment day came.  He waited 80 minutes before seeing a resident and then saw the ortho for approximately 8 minutes.  The doctor told him he never gave cortisone shots (we later learned this is pretty standard treatment) and recommended physical therapy and eventually surgery if 8 weeks of PT didn’t work. He also was very hesitant to prescribe an anti-inflammatory but after Lee pushed hard he recommended something but made Lee got back to the PCP to get it prescribed.  The entire situation left Lee feeling really upset.  Lee was honest about saying we were just passing through and felt the doctor just didn’t want to deal with that.  Once he learned we wouldn’t be in town for the surgery he washed his hands of us.

I would love to say this was the first time we had seen this behavior but it was not.  Medicine is a business, and when you are a higher risk patient with minimal financial reward associated with you it is harder to get care. Practically we both understand that, but when you are in need and in pain it’s hard to stay calm about it.  We both grew up in the old days when it seemed doctors had a higher calling.  It is different now, and although really good doctors exist, you need to take the time to build a relationship with them.  That’s hard to do when you are traveling all over the place and don’t have a home base or regular route.

Oddly enough emergency care works pretty well for transients, but those in between things that are out patient still require a decent PCP to shepherd you through the process.  Yes you can do your own research and make your own appointments with specialists now, but those appointments can take weeks to get and you have no idea if you will run into a bias because you travel when you go.  I didn’t mind so much fighting through all of this when we were reasonably healthy, but as we have gotten older and had more health problems the situation has become very difficult to manage. And that was with me having an ace in my pocket.

What I mean by that is my brother is a doctor in Columbus.  He’s a darn good one, and over the last several years whenever I was concerned about medical care I would call him and get a free second opinion.  It wasn’t just him either.  He has a network of specialists he works with and trusts and would call them if he wasn’t 100% sure. Most people don’t have that resource available to them and I would have been much less likely to “wing it” if I didn’t have him to talk to.  Over the years we have talked about making him our PCP, but held off for a couple of reasons.  In my case I wanted to see how this would all play out and write about it.  Lee felt strongly that it shouldn’t be necessary and for a long time he was willing to figuratively die on that hill.  More recently though when actual death was a factor he felt differently, and yesterday he called my brother and talked through the situation and asked him to be his PCP.

Some doctors won’t treat family, and we would have totally understood if he didn’t want to, but Eddie understands how difficult this is with our travel and has first hand knowledge of the sub par care we have often received.  In this case, he was surprised (but not surprised) that the standard course of treatment wasn’t done and validated once again that for some doctors there is a bias against higher risk, transient patients.  Lee and Ed talked through the best course of action and ultimately decided Lee would drive the eight hours to Columbus and get a cortisone shot.  While he was there, Eddie would try to get an MRI scheduled so they could see how much damage was being done. Once he saw the picture of the Xray, Ed was VERY concerned about the size of the bone spur and said that if left untreated there was a chance Lee could permanently lose function in that arm.

None of that was relayed to Lee by the specialist, by the way, and the discussion impressed upon Lee the necessity of not just bearing the pain and getting through it.  I don’t know if that would have been possible anyway, because the pain was getting worse, not better. By the time he made the drive to Columbus he had almost no use of his right arm. The anti-inflammatory medicine doesn’t appear to be helping much, but that may take more time.  He has to psychically go and see Ed because first he needs to be established as a patient and secondly the shot needs to be done in person.  Because we only have one car I would have had to go with him, except thankfully my mom is flying to Columbus on Monday and was planning on dropping her car off with me so she wouldn’t have to pay airport garage fees for several weeks.  That worked out beautifully and allowed me to stay in Charleston with the dog.

We did have some concern about Lee driving that far, but he felt he could do it and said he would take breaks as needed.  He can stay with his Mom once he gets there, so the cost should be somewhat minimal.  This matters because unfortunately all of these costs we will need to pay out of pocket.  When I started the new job I switched insurance and even though I went from one Blue Cross plan to another, the deductible (which was met from the heart attack) was not transferred.  We are starting all over again and all of this will be out of pocket.  We are hoping that the shot will give him enough relief that he can just get a series of the every three months or so and schedule the surgery sometime next year.  That way the costs can go towards a new year deductible, but at this point we really don’t know.

It does suck that we just finished paying off all of the medical bills from the heart attack and here we go again.  In this case though, it’s not like Lee did anything that caused this, it’s just one of those things.  Thankfully we have money rolling in now and can pay the bills whatever they are, but it is not lost on me that all of this would be a huge emergency if we were gate guarding in Texas as we had originally planned. Once again I feel grateful to have accepted the position and have a regular job, because dealing with this stuff while working hourly jobs would have been much harder.

So that is where we are, and I share this story (as others) as a cautionary tale.  If you are thinking about going on the road, really think about your healthcare plan in advance, and unlike us think in the long term.  If you talk to your PCP in advance you can hopefully work something out where they continue your care as you travel.  If that’s not possible, think about establishing a home base  and starting a new relationship as soon as possible.  You may not need it for several years, but when the time comes you want that relationship in place to guide you through whatever issues you might have.

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