We're at a bar in Scottsdale. The testing and consult took all morning. We're out, at a margarita place now. (I've had two margaritas.) (Don't judge. It's been a big morning.)
We checked in at 7:35 or so this morning to the front desk at Mayo. Of course, my primary perspective is as a patient, but I'm also observing as a charge nurse of a specialty clinic. It's impossible to shut that off. Through this process, I've often wondered why CU isn't mentioned the way Mayo and Cleveland Clinic and Johns Hopkins is mentioned. And maybe, what can I do to make us that cool?
As a patient, my anxiety level when we left the hotel was 8.5, I told Mark. (0 = three margaritas/martinis and 10 = in a corner, sobbing and rocking myself and repeating some phrase over and over). Mayo makes things easy to find, easy to get to a human. It is clear they have invested well in the patient experience. Staffing ratios matter.
The admitting person told us that there was a problem bringing us back to the cardiopulmonary exercise test. There hadn't been a prior authorization. Anxiety level shoots to 9. I called my PCP's office, and left a message on the nurse line. I did not use any expletives in this message, because it wasn't Amy's fault at all. (Amy, the charge RN, is phenomenal, by the way, she called back within the hour.) (It's not the first time she's done good things for me.) (She needs a raise, and probably I will mention that to my doc if she has any pull there.) I left a message also (a bit terse, but no expletives) with Kelly, the coordinator (not RN, I was to learn later). I cut a check for more than $1,300 because we weren't going home without it done. The admitting person was gracious, and kind, and texting and IM'ing various people in the Mayo system to get the problem resolved. I kept running "Om mani padme hum" in my head. (Below anxiety of 10, it runs in my head. Once it's aloud, I'm in big trouble.)
We were sent back, with the caveat that somebody's boss was going to work on it and hopefully Amy at the U and Kelly at Mayo would figure it out. The money was in the account. I am lucky, and grateful for that. I don't forget, ever, that this is the first time in my life I've ever had the means to cover such medical bills. (That doesn't mean that I don't expect the insurance company we pay monthly to do what they are supposed to do, but still.) Mark was awesome through the whole thing, trying to soothe the savage acid-spit beast that was deciding if it should surface or not, and trying to figure out what we need to do to prevent such snafus for the surgery.
The test was...while I wouldn't say fun, it was interesting. Arcenio was my RT, and a nice nurse whose name I'm sorry I didn't catch. They hook you up to a 12 lead, a bp cuff, temporal oximetry, and a face mask that allows you only to exchange gases through a tube. They measure your CO2 exhaled with everything else. I don't pretend to understand it, as I only have a not iron-clad grasp of some of the PFT measures, but it was kinda cool. As a clinician, I asked a lot of questions. Then the patient took over and I just did what I was told. I was supposed to bicycle and keep my revolutions per minute on the bicycle between 60 - 69. This is easy with no resistance, but the resistance increased until I was tripoding and really didn't think I'd be able to finish. I'm not sure how much time had gone by...not much, as the test total, with setup and cooldown, was 40 minutes. But it was difficult, which is the point. I didn't have chest pain so much as that ripping pain to get breath that I feel when I hike now. Maybe that's "air hunger." Dunno if it makes sense that I felt that way when my sats were never below 99%.
That alone was odd; I live at elevation and my sats are typically in the mid-90s. I told them that; and they see people from all over the country. They said those of us who live at altitude are tough. Maybe because I was gasping for breath, but it was nice and made me feel better.
My baseline blood pressure is teens over 70s, heart rate 70s. I guess when I exercise, bp goes to 160s over I-didn't-ask and heart rate 160s. No wonder I feel dizzy. Because I was. It was past the point where I couldn't talk. I could only point. The RT ran the testing metrics, and the RN's job was to monitor and assess me. Even as I felt like I was going to start to have my vision narrow, I was still envying their staffing matrix that allowed > $60/hr worth of staff in one test for one patient. I wish we had that. Both very kind people, very professional.
It took me longer than I thought to cool down. I have never paid attention to my HR during recovery, but I may be up, talking and feeling fine and my HR is 120. They finally cut me loose. It was okay.
It was pretty seamless to get to the consult area in the next building over.
I met with Maryanne first, the RN. Within seconds, Mark says he knew I liked her. She was no bullshit, and she explained what to expect, what the surgery was going to be like. I had a list of questions, and as expected, she hit most. Some of them, as expected, were really for the surgeon. The timing of inpatient stay (expect 2 nights) and stay in Phoenix (expect one week or so) was good to have somewhat solid. She said regardless of narcotic use (Mark piped in, "I can't get her to take anything."), she wanted me to use an incentive spirometer (medical doohickey that forces you to take slow, deep breaths) post, which I am on board with. They write for gabapentin, oxycontin and oxycodone and want us to use ibuprofen 800 and tylenol prn. And ann On-Q pump, which some people go home with. Fine. I think she expected more questions about that. I just assumed they'll prescribe narcotics, and I won't like them. Because I don't like narcotics. I got hydrocodone when I chopped my finger off. I don't know why people love narcotics, they just make me sleep and they don't really fix the pain problem. Complete waste of time. Whatever. I'll be a good girl and do my best. (I don't know if you can get up with an On-Q. That shit will come out first.)
We talked about follow up. They need chest Xrays only at 6 weeks, 6 months, one year and then annually until the bars come out at three years. No repeat CT. They will do a TEE while I'm intubated, pre-correction and post. I really wanna see the real numbers for my right ventricular stroke volume. They probably won't do a repeat of anything else.
If the bars move, problems ensue, and it depends on how bad the move on what they do about it. Apparently, lately she's been doing a stab wound in the center of the chest and fiber-wiring the bottom bar, and that seems to be working. Okay.
People report that they can always feel the bars, but it's not horrible, they just put up with it, and don't tend to need meds.
I get a card for airports that says I get a pat-down or hand-scanning with the wand thing.
I didn't ask/confirm that I'm a DNR for the next three years post, because the question itself might have upset Mark. That's pretty much obvious, but a little weird to square with. Not that I have any plans for a heart attack, jus sayin.
Before Maryanne was done with us, Kelly poked her head in and said she got my voicemail. Did I want them to bring the $1,300 check back to me or was it okay for them to shred it? So. ....Okay, there IS a reason they are Mayo. It was done. It was all covered. Within two hours. I can't get that kind of service to patients in my own clinic. I don't know if it was Kelly or if it was Amy or both, but they both should get nice Christmas bonuses.
Knowing that let me focus on my health and this crazy painful thing I am signing up for. There is a risk of them cracking my ribs. If they do, and they know it in surgery, she may decide to slice open a hole and paste on a metal band-aid. Maryann said they try to bring up the sternum gently, which cracked me up. "Did you SEE those videos? It's medeival. There is nothing gentle about that." She made that expression that I call "mas o meno", which is a uniquely Mexican gesture that means everything and nothing. I didn't mind the gesture, but as a nurse, I would have been fine with her telling me it is going to suck. I tell my patients if what I have to do (put in an IV, get an ABG, sink an NGT, whatever) is going to suck. How else will they trust me with anything?
I liked her, though. Maybe she has to tell people that it's a "gentle" surgery. Youtube it. Seriously. It's violent. Makes that car accident I was in (me, the pedestrian vs. car, white 70s model Pontiac) look like a love tap. (Speaking of that, I should warn them about what an awful patient I am. When I woke up finally from that ordeal, I promptly ripped out my foley catheter, and all my IVs. I am not a good patient.)
She is a nurse, though, and I got the sense that if nothing else, I understood what I was signing up for. I had to ask the questions about worst and best case scenario. They're my Dad's questions. For some people, it sucks and they have chronic pain. A small handful need revisions, but that is worst case scenario. Most people they never hear from because they do well. And they go climb rocks and hike and run and whatever. I could tell that she was happy to hear those stories.
I liked her. She had been with Dr. J almost 10 years, she said.
She brought in the PA, Lori. Lori was fine. She did my history and physical, which is incredibly brief if you're a health care person. I've had pneumonia twice. Aforementioned Pontiac incident left me with a plate and nine pins in my left humerus. The end. I told her my symptoms, predominantly cough and severe exercise intolerance. She talked about the rib flare. I asked how they correct it and she laughed, "You don't want to know." "Yes, I actually do." "I couldn't watch the first time," she said. "She will push down until the ribs sort of lock in place." Apparently, it is just a matter of forcing the ribs to behave, though. Nothing fancier that that. Cannot imagine how that succeeds, but she did say it may not. Rib flare has been known to return. We will not know until I am unconscious and sedated. I kind of liked her for admitting to squeamishness in observing the first time. I certainly get that.
They were quick to point out that my cough "could be anything." I am on mid-dose Advair BID, and Flonase BID, and I gave up on daily Prilosec when it became evident that it's useless. Got that covered. Really, really, really hoping the cough goes away when my heart moves into the right place. I suppose I could try BID Prilosec. Or. A voodoo doll. Or Scientology. Or they could fix my chest so that my heart moves into the right place and the right ventricle can expand fully so that there's no fluid backing up into the lungs, and both lungs fully inflate and my esophagus isn't twisty and my ribs aren't screwing with the valve to my stomach and maybe that'll fix it. Possibly, I am biased. I don't know what I'll do if this doesn't make it go away. Because, wow, I am sick of a year of coughing.
They don't move the heart. It just sort of wiggles over to the middle in time, I guess. Maybe if I keep working on the incentive spirometer, the left lower lobe will nudge it over. That would be cool if the heart could have its own space. I'd like that. It'd be cool if the left lung got to inflate. It never has.
The PA did a physical exam. No big deal. It was fine.
The next person we met with was Kelly, who does the insurance and coordinating. We had a lot of questions for her, too. We cannot switch to my insurance at the U, as they would likely force the Ravitch procedure as the only one they'd pay for. But we got some suggestions, and we may switch to Mark's PPO vs the HMO in February. She was also very helpful, and she suggested that at some time, we get me a brace. It's recommended postop but it might be helpful in terms of managing pain from my back muscles to train my body to sit straight. She gave us a handful of paper to take home. I will ask the surgeon about the brace. If I can prevent some of the pain issues, sounds good to me.
I got photos taken next, and then Kelly gave us a tentative date: April 21, 2016. It's a Thursday. Vernal equinox, which Mark and I were both thinking. It's a week after I present my data to the Evidence Based Practice Symposium Thing. Sooner than I thought, and would mean skipping class next semester instead of summer.
And after we done, I told Mark all I wanted was a drink or several, and maybe some nachos since I'd been NPO for the test. He found us the nearest Mexican place. We fly home tonight. Anxiety level back down to a 1 (because 0 = home, in my pajama pants, preferably with a glass of jammy petite syrah.)
April 21, 2016. That is the date. Sooner than I had expected and one week after my poster presentation. Better than I had hoped for.
I am am just ready to be home now.
We checked in at 7:35 or so this morning to the front desk at Mayo. Of course, my primary perspective is as a patient, but I'm also observing as a charge nurse of a specialty clinic. It's impossible to shut that off. Through this process, I've often wondered why CU isn't mentioned the way Mayo and Cleveland Clinic and Johns Hopkins is mentioned. And maybe, what can I do to make us that cool?
As a patient, my anxiety level when we left the hotel was 8.5, I told Mark. (0 = three margaritas/martinis and 10 = in a corner, sobbing and rocking myself and repeating some phrase over and over). Mayo makes things easy to find, easy to get to a human. It is clear they have invested well in the patient experience. Staffing ratios matter.
The admitting person told us that there was a problem bringing us back to the cardiopulmonary exercise test. There hadn't been a prior authorization. Anxiety level shoots to 9. I called my PCP's office, and left a message on the nurse line. I did not use any expletives in this message, because it wasn't Amy's fault at all. (Amy, the charge RN, is phenomenal, by the way, she called back within the hour.) (It's not the first time she's done good things for me.) (She needs a raise, and probably I will mention that to my doc if she has any pull there.) I left a message also (a bit terse, but no expletives) with Kelly, the coordinator (not RN, I was to learn later). I cut a check for more than $1,300 because we weren't going home without it done. The admitting person was gracious, and kind, and texting and IM'ing various people in the Mayo system to get the problem resolved. I kept running "Om mani padme hum" in my head. (Below anxiety of 10, it runs in my head. Once it's aloud, I'm in big trouble.)
We were sent back, with the caveat that somebody's boss was going to work on it and hopefully Amy at the U and Kelly at Mayo would figure it out. The money was in the account. I am lucky, and grateful for that. I don't forget, ever, that this is the first time in my life I've ever had the means to cover such medical bills. (That doesn't mean that I don't expect the insurance company we pay monthly to do what they are supposed to do, but still.) Mark was awesome through the whole thing, trying to soothe the savage acid-spit beast that was deciding if it should surface or not, and trying to figure out what we need to do to prevent such snafus for the surgery.
The test was...while I wouldn't say fun, it was interesting. Arcenio was my RT, and a nice nurse whose name I'm sorry I didn't catch. They hook you up to a 12 lead, a bp cuff, temporal oximetry, and a face mask that allows you only to exchange gases through a tube. They measure your CO2 exhaled with everything else. I don't pretend to understand it, as I only have a not iron-clad grasp of some of the PFT measures, but it was kinda cool. As a clinician, I asked a lot of questions. Then the patient took over and I just did what I was told. I was supposed to bicycle and keep my revolutions per minute on the bicycle between 60 - 69. This is easy with no resistance, but the resistance increased until I was tripoding and really didn't think I'd be able to finish. I'm not sure how much time had gone by...not much, as the test total, with setup and cooldown, was 40 minutes. But it was difficult, which is the point. I didn't have chest pain so much as that ripping pain to get breath that I feel when I hike now. Maybe that's "air hunger." Dunno if it makes sense that I felt that way when my sats were never below 99%.
That alone was odd; I live at elevation and my sats are typically in the mid-90s. I told them that; and they see people from all over the country. They said those of us who live at altitude are tough. Maybe because I was gasping for breath, but it was nice and made me feel better.
My baseline blood pressure is teens over 70s, heart rate 70s. I guess when I exercise, bp goes to 160s over I-didn't-ask and heart rate 160s. No wonder I feel dizzy. Because I was. It was past the point where I couldn't talk. I could only point. The RT ran the testing metrics, and the RN's job was to monitor and assess me. Even as I felt like I was going to start to have my vision narrow, I was still envying their staffing matrix that allowed > $60/hr worth of staff in one test for one patient. I wish we had that. Both very kind people, very professional.
It took me longer than I thought to cool down. I have never paid attention to my HR during recovery, but I may be up, talking and feeling fine and my HR is 120. They finally cut me loose. It was okay.
It was pretty seamless to get to the consult area in the next building over.
I met with Maryanne first, the RN. Within seconds, Mark says he knew I liked her. She was no bullshit, and she explained what to expect, what the surgery was going to be like. I had a list of questions, and as expected, she hit most. Some of them, as expected, were really for the surgeon. The timing of inpatient stay (expect 2 nights) and stay in Phoenix (expect one week or so) was good to have somewhat solid. She said regardless of narcotic use (Mark piped in, "I can't get her to take anything."), she wanted me to use an incentive spirometer (medical doohickey that forces you to take slow, deep breaths) post, which I am on board with. They write for gabapentin, oxycontin and oxycodone and want us to use ibuprofen 800 and tylenol prn. And ann On-Q pump, which some people go home with. Fine. I think she expected more questions about that. I just assumed they'll prescribe narcotics, and I won't like them. Because I don't like narcotics. I got hydrocodone when I chopped my finger off. I don't know why people love narcotics, they just make me sleep and they don't really fix the pain problem. Complete waste of time. Whatever. I'll be a good girl and do my best. (I don't know if you can get up with an On-Q. That shit will come out first.)
We talked about follow up. They need chest Xrays only at 6 weeks, 6 months, one year and then annually until the bars come out at three years. No repeat CT. They will do a TEE while I'm intubated, pre-correction and post. I really wanna see the real numbers for my right ventricular stroke volume. They probably won't do a repeat of anything else.
If the bars move, problems ensue, and it depends on how bad the move on what they do about it. Apparently, lately she's been doing a stab wound in the center of the chest and fiber-wiring the bottom bar, and that seems to be working. Okay.
People report that they can always feel the bars, but it's not horrible, they just put up with it, and don't tend to need meds.
I get a card for airports that says I get a pat-down or hand-scanning with the wand thing.
I didn't ask/confirm that I'm a DNR for the next three years post, because the question itself might have upset Mark. That's pretty much obvious, but a little weird to square with. Not that I have any plans for a heart attack, jus sayin.
Before Maryanne was done with us, Kelly poked her head in and said she got my voicemail. Did I want them to bring the $1,300 check back to me or was it okay for them to shred it? So. ....Okay, there IS a reason they are Mayo. It was done. It was all covered. Within two hours. I can't get that kind of service to patients in my own clinic. I don't know if it was Kelly or if it was Amy or both, but they both should get nice Christmas bonuses.
Knowing that let me focus on my health and this crazy painful thing I am signing up for. There is a risk of them cracking my ribs. If they do, and they know it in surgery, she may decide to slice open a hole and paste on a metal band-aid. Maryann said they try to bring up the sternum gently, which cracked me up. "Did you SEE those videos? It's medeival. There is nothing gentle about that." She made that expression that I call "mas o meno", which is a uniquely Mexican gesture that means everything and nothing. I didn't mind the gesture, but as a nurse, I would have been fine with her telling me it is going to suck. I tell my patients if what I have to do (put in an IV, get an ABG, sink an NGT, whatever) is going to suck. How else will they trust me with anything?
I liked her, though. Maybe she has to tell people that it's a "gentle" surgery. Youtube it. Seriously. It's violent. Makes that car accident I was in (me, the pedestrian vs. car, white 70s model Pontiac) look like a love tap. (Speaking of that, I should warn them about what an awful patient I am. When I woke up finally from that ordeal, I promptly ripped out my foley catheter, and all my IVs. I am not a good patient.)
She is a nurse, though, and I got the sense that if nothing else, I understood what I was signing up for. I had to ask the questions about worst and best case scenario. They're my Dad's questions. For some people, it sucks and they have chronic pain. A small handful need revisions, but that is worst case scenario. Most people they never hear from because they do well. And they go climb rocks and hike and run and whatever. I could tell that she was happy to hear those stories.
I liked her. She had been with Dr. J almost 10 years, she said.
She brought in the PA, Lori. Lori was fine. She did my history and physical, which is incredibly brief if you're a health care person. I've had pneumonia twice. Aforementioned Pontiac incident left me with a plate and nine pins in my left humerus. The end. I told her my symptoms, predominantly cough and severe exercise intolerance. She talked about the rib flare. I asked how they correct it and she laughed, "You don't want to know." "Yes, I actually do." "I couldn't watch the first time," she said. "She will push down until the ribs sort of lock in place." Apparently, it is just a matter of forcing the ribs to behave, though. Nothing fancier that that. Cannot imagine how that succeeds, but she did say it may not. Rib flare has been known to return. We will not know until I am unconscious and sedated. I kind of liked her for admitting to squeamishness in observing the first time. I certainly get that.
They were quick to point out that my cough "could be anything." I am on mid-dose Advair BID, and Flonase BID, and I gave up on daily Prilosec when it became evident that it's useless. Got that covered. Really, really, really hoping the cough goes away when my heart moves into the right place. I suppose I could try BID Prilosec. Or. A voodoo doll. Or Scientology. Or they could fix my chest so that my heart moves into the right place and the right ventricle can expand fully so that there's no fluid backing up into the lungs, and both lungs fully inflate and my esophagus isn't twisty and my ribs aren't screwing with the valve to my stomach and maybe that'll fix it. Possibly, I am biased. I don't know what I'll do if this doesn't make it go away. Because, wow, I am sick of a year of coughing.
They don't move the heart. It just sort of wiggles over to the middle in time, I guess. Maybe if I keep working on the incentive spirometer, the left lower lobe will nudge it over. That would be cool if the heart could have its own space. I'd like that. It'd be cool if the left lung got to inflate. It never has.
The PA did a physical exam. No big deal. It was fine.
The next person we met with was Kelly, who does the insurance and coordinating. We had a lot of questions for her, too. We cannot switch to my insurance at the U, as they would likely force the Ravitch procedure as the only one they'd pay for. But we got some suggestions, and we may switch to Mark's PPO vs the HMO in February. She was also very helpful, and she suggested that at some time, we get me a brace. It's recommended postop but it might be helpful in terms of managing pain from my back muscles to train my body to sit straight. She gave us a handful of paper to take home. I will ask the surgeon about the brace. If I can prevent some of the pain issues, sounds good to me.
I got photos taken next, and then Kelly gave us a tentative date: April 21, 2016. It's a Thursday. Vernal equinox, which Mark and I were both thinking. It's a week after I present my data to the Evidence Based Practice Symposium Thing. Sooner than I thought, and would mean skipping class next semester instead of summer.
And after we done, I told Mark all I wanted was a drink or several, and maybe some nachos since I'd been NPO for the test. He found us the nearest Mexican place. We fly home tonight. Anxiety level back down to a 1 (because 0 = home, in my pajama pants, preferably with a glass of jammy petite syrah.)
April 21, 2016. That is the date. Sooner than I had expected and one week after my poster presentation. Better than I had hoped for.
I am am just ready to be home now.