Note — you should read Part 1: Leading up to “The Surgery” before reading this.
The months leading up to 30 days out were already a roller coaster of emotions. It was already pretty busy, but it was really only a precursor to get you ready for last 30 days. What started as a fast moving roller coaster has now accelerated into a F-5 tornado.
Docs, docs, and more docs.
As mentioned prior, all medical clearances, recommendations and referrals have to be dated to be within 30 days of the surgical date. But in reality, its a little more condensed than that. You really only have the first 3 weeks in that 30 days, because you need to allow some fluff time in order to allow time for the information to be transferred and sent up to your medical team where you are having the surgery. (In my case, New York City.) And that’s where the real fun begins.
Medical Record Transfers
You would think that in today's technological computer driven society, that this wouldn’t be a problem…but it is! The first thing you become to realize is that we really don’t have a common or national health system. What we really have is a bunch of semi-independent medical systems and they don’t really talk to each other. Not to mention, that medical records come with restrictions. They are private and sensitive information with legal limitations on how they can be shared. Its not like you can just send them via an email attachment.
Within a localized area, most providers have figured out how to share information with each other. But, when you are going outside of your local area, there is a good chance that they do not have an established protocol or sharing relationship established. This can be become downright problematic and never came into my consideration when I chose the provider for my surgery.
Even within my own area, my own medical records are already all over the place and I have some management issues myself just trying to keep it all straight. I have accounts at various different providers and each seem to use a different system for their records. Its likely the basis why every time you go to a doctor they start of by asking if there are any updates to medications or any major surgical procedures. If the information was shared, you’d only have to do this once….or even never, as the providers could update it for all the others to read. But that doesn’t exist yet….
My provider networks are made up of:
- St Lukes (SLHN in the Lehigh Valley)
- Lehigh Valley Health Network (MYLVHN/Coordinated Health)
- Einstien (CernerHealth — Philadelphia)
- LMG Family Practice (NextMD)
To name a few. Out of just this sampling, only one of these, used a system that had any linkage to the one used by Mount Sinai in New York (via MyChart).
But, they are all medical people and they use the same terms and standards right? Wrong! I now question the terminology going through this process, but the forms are definitely not consistent across geographic areas.
So, what really needs to happen from all your medical providers, is that they have someone in their office take the time to create an account on the New York system. Then, go in and fill out the necessary medical forms on your behalf in order to input or transfer the necessary information from their local system so they can be found in the New York system. Most providers were asked to record specific information (specified by the New York provider) from a pre-check visit they required you to have with your local (normal) provider/specialist.
Piece of cake right? This must be something they do all the time? Let me tell you, the process was absolutely insane! Every doctor’s office I visited did it wrong. Yes, there was an issue with every one of them. Some piece of information was omitted, not transferred, or not filled in correctly.
And this will drive you absolutely insane, because it will cause you to have an almost daily discussion with your coordinator(s) at your surgeon’s office (Elsa and Karen for me). Elsa was my main contact, but she had a personal issue and Karen took over while she was out for a couple of weeks in the middle of all of this. Contact seem to be required from at least one of us, to each provider, to get them to correct, resubmit, or fix the information they were asked to provide. I can tell you that I owe these people a world of gratitude for the work they put in to get through this part of the process. (If this isn’t a reason for a national health system, I don’t know what is…)
Two providers stand out in this process, which made me question their abilities to provide me care.….my general physician and my cardiologist offices. The general physician office was asked to provide the most specific information and provide it in a particular form to fill out. I can’t tell you how many times it was not done correctly. There was definitely what seemed to be communication issues and some unfamiliarity with the terms in the forms required. This took a couple of weeks itself to get just this one straightened out, requiring lots of back of forth communication.
But, the cardiologist office took the cake. This was the first appointment in the 30 day window and this one took just about all 30 days to get resolved. In fact, the day before my surgery, the anesthesiologist was still threatening to cancel the surgery because they were still missing some critical number and chart data the cardiologist took, but was yet to supply. At 4:30 PM on Monday afternoon, I finally got word from Elsa that they finally had received the information and everything was finally in place. (Surgery was scheduled for Tuesday morning.)
If anything could go wrong, it definitely did…
Reading through the medical clearances fiasco above and all of the issues with that, you would think that would provide enough stress…but that wasn’t even the half of it.
One of my care takers had an electric car and had some concerns about bringing it due to the length of time and lack of charging stations nearby. So, I suggested they could use my vehicle, since I would be bringing it with me. But, there was an issue, I have a stick. Ok, problem solved, I also have a truck, which is an automatic. Next problem….the truck fails inspection and its going to cost to much money and too much time to get it fixed before it would need to come with me for the surgical trip. OK, contingency plan activated, I now have no choice but to bring the car…and I will teach them how to drive a stick if I have too.
But, that wasn’t my only issue with vehicles. Two weeks before the surgery date, my car’s air conditioner decides to break/stop working. Its summer and we are having our typical 90 some degrees temperature days. Then, to make it worse, 2 days before surgery, I get hit with a rock driving home that breaks the front wind shield. Yeah, car is coming to North Jersey with me…but it was looking like it was going to spending much of the time while there in a shop getting fixed! I scramble and locate a Honda Dealer near where I am planning to stay to handle the air conditioner and arrange for a glass company to come out and replace the wind shield at the Hotel. Good news is that they can do it in the parking lot. I schedule both for after I am released from the hospital. My care takers will help out getting the car where it needs to go. Fixing the truck goes on hold and I will worry about those problems after recovery.
My new computer has developed a electrical short and crashes every time you touch it in a certain place. This started two months out….and the manufacturer is finally acknowledging it is not a software issue. They have agreed to fix it after I ship it to them…but when it returns as fixed, its get left in the rain outside by the shipper. Computer seems undamaged inside the soaking wet box…but its still not fixed. Same exact problem as before. After further arguments and convincing that the shipper did not cause a new problem, they finally agree to take it back and have one more look. They find the issue (supposedly) but its return gets delayed. I desperately call them everyday to get a hold of them to change the return shipping address, because that problem has now spilled into my surgery trip. So I now need them to ship it to my hotel in New Jersey…I eventually get a hold of them and finally get it redirected. (I didn’t want it sitting out in the weather at my house for 3 months…)
Contingency plan engaged, I quickly bring back to life my old laptop so I can use something on the trip for communicating with everyone. It shortly starts having WiFi disconnects again…which is one of the reasons why I replaced it in the first place. More on this story later…
I get notified, there is problem with the dog sitter. She has to go out of town for emergency business trip and will not be able to watch the dog for the first 10 days. She apologizes and reassures me that she is still good for the rest of the time… A quick call to my normal dog sitter and make arrangements to have her cover the first 10 days and if she wouldn’t mind handling the hand off of the dog to my friend. She’s available and happy to do it. I put the two in touch with each other. Contingency plan engaged and another crisis averted….
Pharmacy from North Jersey calls, my prescriptions are ready to be picked up. Only issue is…its still 30 days out. I call them up and say I won’t be in to pick them up for a month and it seems a little early. They apologize that the pharmacist didn’t see the date on the request. Crisis averted…or so I thought….more later.
The bike crash
I had planned on bike racing all the way up till my surgery date. That plan changed 3 weeks out, when after a race, while returning to the sign up table, my front tire dropped into an unmarked grate. I hit the ground hard, landing on left elbow and knee. I received some medical attention on site…and this news manage to make it all the way to New York with no problem. (Sure, these were the only medical records that seemed to have no problem communicating across providers…) I then received a phone call from New York and I was yelled at. Why was I doing these risky behaviors? If I would have broken something (nearly did), surgery would have been canceled. I was told that I was absolutely no longer allowed any more racing/biking. This was very hard the last couple of weeks. I still went to the races I had planned on doing, only I sat on the side lines, took pictures, and cheered for my friends who were still racing. 4 months later, I would find out that I had bent the rim when it went into that grate…
We finally get to move in day. I pack up the no A/C Honda with the busted windshield and drive to New Jersey. The plan is to move in and go to the pharmacy to pick up the prescriptions, only there’s a problem. Room they have for me is a smoking room, on a smoking floor. Did I mention that smoking was one of things I was going to be tested for at check in time for surgery, and it would be canceled if I had any traces of tobacco use. I am absolutely livid and the room (and entire hotel) stinks to the high heavens. I do not want to spend my recovery there. I am very vocal about the screw up and I threaten them that I will sue them if this jeopardizes my surgery. They first argue that I requested it (yeah right!), but then understand the mix up. They will try to do their best to find an alternative, but they don’t have anything else available right now.
I have no choice in the moment but to move in and make my run to the pharmacy.
The prescriptions are not ready, in fact, they were canceled 30 days ago! I explain the situation and they get to work on getting them filled. Small problem, then don’t have one of the items, but can get it brought over from another location…only that item won’t be available for pick up untill tomorrow. Ok, I will come back the following day to get it…
Its at this time, I get a call from Elsa explaining that the Anesthesiologist is threatening to cancel due to the missing numbers and charts from the cardiologist. I loose it, and dump on her about the hotel, the prescriptions, the car, the computer. everything….and she takes the time to talk to me and calm me down. I ask her, I don’t know what else can go wrong? Here I am all alone, working through all this shit on what should be the happiest time for me and everything is going to shit!
I get off the phone with her, pick up my heart off the floor and buy just about every air freshener I can find in the store. I am determined to make this work even if I have to deodorize the whole dam hotel!
I put the air fresheners all around the room and settle in for the night and try to not think about the day.
The next morning is my last meal, and I drive to a restaurant that I was told about when I stopped by the Honda dealer to arrange for the car to be fixed. It was a great recommendation and the breakfast was absolutely delicious. They told me to eat big, as this was going to be last meal for quite a while. I, of course, got the biggest breakfast combination they had on the menu!
In the middle of breakfast, I received a phone call with some more bad news. It was a discussion about shutting down a cycling team I had been a part of and was on the board of. Timing sucked, and that was acknowledged in the conversation, but they needed to discuss it with me before I was going to be potentially un-contactable for a couple of days. We had decided to shut down the racing team at the end of the year and with that, so goes the website I was managing. I would need to figure out how to do that before the end of the year. It was sad, but it also made sense. I add it to my to do list for things to do during recovery…
Things start to finally turn around
I returned back to the hotel from breakfast when the Front Desk stopped me. They had found an alternative if I was interested. Hell Yeah! ….only problem is, now I have to move. I pack everything up in lighting speed…and I contact a friend Corinne, who sends out the message to let everyone know I am now moving hotels. Goodbye East Rutherford, hello Secaucus!
With everything packed in the car, my first stop is at the pharmacy. This was supposed to be an easy lay around day and just drink prep all day. Only problem is that it was now 11:30 AM and I’m supposed to be starting the prep at Noon. I don’t even have it yet and I’m in the process of moving.
I get everything moved as quick as I could, and make the run to the pharmacy to pickup the prescriptions, including the prep. Only thing is, its now 2 PM. I was supposed to start it at 12 and I begin to wonder if starting if 2 hours late was going to be a problem. I get a call from Elsa. She saw Corinne’s post about me moving and wants to know how I am doing. She assures me the 2 hours is not going to be a big deal; its more important I finish all of it. I tell her that it was going to be a challenge…and she tells me to imagine that its a margarita and I am sitting on a beautiful beach. With that, she says that she will contact me later with an update about the cardiologist…she’s working on it.
New hotel room has a permanent smell of curry or something in it, but this is more pleasant to me than the horrible ashtray smell of the prior room. I still have my air fresheners I bought for the prior room and sprinkle them around this room. Then I think about all of things I set up to go to the East Rutherford Hotel address. It is even worth trying to get the shipping redirected for the computer again? Need to contact windshield replacement company, my online pharmacy (of course all my regular prescriptions are renewing in the next 3 weeks and I need them), etc. Its too late now to worry about these things. I will attempt to work on all that post surgery. I will figure out how to make it work later…
There’s a last time for everything…
There were things I thought I should do before I couldn’t do them anymore…. At this late hour, I realized I had not done a single one of them. They were stupid little things, like standing to pee. I had only done it once (outside on a bike trail) since I had started HRT years ago. But, believe it or not…every time I went to the bathroom, I just couldn’t do it. It had become second nature just to sit and I was doing it now for years without even thinking.
Down to the final hours…
At 4:30 PM I get another call from Elsa. She wants to know how the prep is going….I’m working on it. I joke about being on the beach and she interrupted my bathing in the sun time. She is happy that my attitude is getting better and has some great news for me. She finally has the info from the Cardiologist and the anesthesiologist is happy. The surgery is a go!
It took a very long time to get through it, but I finished the prep. I was hoping to get a good nights sleep, as I needed to get up very early to go the hospital. The prep, of course, did its job well….and sleeping was really not going to be an option. Between the stomach, bowel pains, and frequent trips to the bathroom, I may have gotten all of maybe two hours of sleep in total. Its OK I think, I will be knocked out for surgery, I’ll get some sleep then.
To be continued….