Doctor With Strange Sense of Humor

The only remarkable thing about my three-day stay in the hospital while recovering from the TAVR was one of the attending doctors that was following me.

I think his name was Jonathen?

Anyway, the morning after surgery he came to check on me. I think he was trying to be funny, but he didn't introduce himself or what his role in my care was and started with, "Why are you still here? Haven't you left yet?"

Huh?

"I just had my aortic valve replaced."
"I know. But the guy we did before you has already been discharged."
"And he had his aortic valve replaced?"
"Yep. Same as you."
"Through his ribs?"
"No. Through his right groin."
"Well, that's different. If you're going to compare apples to apples. It's a complete different surgery, and one that's much easier to recover from."

All I got in response was a shrug. Weird!

Then he says, "Well, you're not still on pain medicines, are you? We need to get you off those."

Really? I can tolerate pain pretty well, but I'm in quite a bit of pain--from the chest tubes and especially when I cough.

In general though, I try to figure out people's expectations and then do everything I can to exceed them. I'm a pleaser by nature, so I immediately start trying to figure out how to at least reduce the amount of pain medication I'm taking.

The next day when he comes to check on me, I'm prepared.

I announce, "Hey, I'm down to taking pain medications only every six hours."

He doesn't let me finish before he cuts me off with "Trish, you just had your aortic valve replaced; and we had to go through your ribs. I don't want you even thinking about reducing your pain mediation yet."

What? Now I'm really confused. When I mentioned how strange and confusing his conversations were to Sally, she says that he just has a really odd manner and not to worry about it too much because I definitely can't change him.

It turns out that open heart surgery is actually easier and less painful to heal from because there are hardly any nerves around your sternum, yet your ribs are wrapped with lots of nerves. Interesting.

TAVR

After a heart catheterization by Dr. Tandar (to see how big the vessels are and the structures of the heart), it's determined that I'm not a good candidate for open heart surgery, nor for the TAVR through the right groin.

Of course not! Why would I want to be easy or normal.

I get the TAVR through the ribs, which is the most painful way to replace an aortic valve. It's the least desirable option because the U has done only 12 of them, I'm their 13th patient and because the ribs are wrapped with nerves and they have to irritate those nerves a lot by separating or spreading the ribs and inserting instruments in and out of them.

Lucky me!

I'm scared to death. They're going to go into my heart, push a foreign body (a manufactured valve) into it, and hope it keeps working? It's my heart. It's essential. There are lots of risks associated with this procedure. And even though this technique has been used in Europe for 5-6 years, it was just approved in the US in 2011.

Yikes!

Almost too late, I do receive some calm assurances that this surgery won't kill me. (That would be too easy.) And that it will go well. Finally, two days before the surgery on June 19, I can sleep again. Whew!

The surgery actually goes well. I refuse the Versed, so I'm awake and alert as they start the arterial IV line (so they can monitor everything) and get to ask some questions as they get set up. Eventually, I'm holding my own oxygen mask because it won't stay on and talking to the various personnel in the operating room.

I can tell the anesthesiologist is having trouble placing the arterial line, but what did he expect from someone who's had five different chemo regimens so far? All of that poison running around my blood vessels has got to do a lot fo damage. About 20 minutes after arriving in the room, he must have gotten it because, without any warning, I start feeling heavy and dizzy and doze off.

It can't be too much later though, that I realize I'm awake again, but I can't move anything: eyes, fingers, mouth--nothing.

But I'm hearing all of the conversations in the room, and most seem to be centered on my chest and how they're going to move my left breast and keep it away from the surgery site. My chest is mentioned at least 5-6 times, and I'm laughing to myself and almost feel guilty that I'm listening in on their dilemma without them being aware of it.

Finally, someone offers to run and try to find some heavy-duty tape. And at that point, I'm asleep again.

When I wake up, Dale's in the room and a nurse, but I'm greatly annoyed because my wrists are tied down somehow. I'm also still intubated and have that tube down my throat, but I was warned about that, so I'm not surprised or too annoyed at that.

When I'm finally conscious enough, they remove the restraints; and I ask for paper and a pen so I can at least communicate by writing. (Dale says my first notes were just scribbles, but I'm convinced they were really important.)

Not too much later the intubation tube comes out, and I can really assess the damage.

I have the following things attached to me:
1. Intubation tube
2. Pacing wire in my right groin
3. Arterial IV line
4. Swann's catheter
5. MAC line (central line in my neck)
6. 1 chest tube
7. Jackson Pratt drain
8. Triple lumen catheter in my left neck
9. Port accessed
10. BP cuff
11. O2 monitor
12. EKG leads
13. Squeezy things on both legs to prevent blood clots

Whew! No wonder I feel a little beat up. Actually though, considering, I feel pretty good, and I'm moved to a regular room within a few hours.

Dale says that they told him to expect up to a 4 hour surgery, but I was in there only about 90 minutes. They told him they'd give him updates every 30 minutes; but they didn't have time to call him and give him the third update before the doctors were in front of him, telling him it was over and went very well.

Hooray! Survived that obstacle.

The Perfect Storm

It's like God reached down his hand from heaven and said, "Thou shalt not go here." Yeah, it was that bad. I've never had such terrible customer service in my life, and this was from a hospital.

I'm not saying that St. Mark's is horrible all the way around. I'm saying that my brief encounter with them was a combination of terrible experiences.

Experience 1 - Switched Appointments
It kind of started when we weren't told before we arrived that we couldn't meet with Dr. Kawande and were switched to Dr. Schorlemmer instead. It was okay. I would have made the same choice not to wait an additional 3 weeks to see Dr. Kawande, but I would have liked to make that choice before driving the 45 minutes to get to the appointment. The office staff knew the day before when they made the switch; why didn't they inform me?

Experience 2 - Registration Fiascos
So I take my orders from Dr. Schorlemmer's office over to the registration desk at the hospital. I'm standing at the desk about 8 minutes while the twenty-something girl looks over my paperwork and keeps checking it against her computer. Finally, she involves the other woman sitting at the registration desk. She too examines the paperwork and checks the computer. After involving one more person from the back, they pronounce that all the paperwork seems to be in order.

"Please take all of this paperwork and proceed through the next door on your right."

Really? That's all it took to get registered. Cool. Now on to radiation, I guess. Whoops! Not so fast.

The next door is labeled "Registration." So what was that desk I was just standing at for 8 minutes? And why is it labeled Registration also?

I take a seat in a very full room. In fact, it's so full, there are no chairs left. So I sit at the only exposed desk in the room and wait. And wait. And wait.

There are about six desks that are sectioned off and numbered. The process involves waiting for someone at one of the desks to call your name so that you can then register. After waiting about 15 minutes and not seeing much turnover in the amount of people waiting, I start up a conversation with some of the people that are obviously frustrated from all of the waiting. "How long have you been here? How many people have been registered in that time?"

We eventually figure out that there are only two people or two desks that are available for registration. And they are both really slow at the process.

After waiting about 30 minutes, they open up another registration desk and I get called. Yahoo!

The lady who is helping me doesn't seem to know her job, however. After staring at my paperwork and her computer for a long time (about another 8 minutes), she suddenly gets up and leaves without saying anything to me.

Am I done? Am I just supposed to wait? Where did she go?

She's gone at least 4 minutes, when I notice another employee walking by and call out to her. "Ma'am, do you know you was helping me at this desk? She got up and left about five minutes ago, but I don't know where she went or what she's doing or if I'm finished or not."

She tells me her name was Jessica and she'll go look for her and figure out what's going on.

Another 1-2 minutes and Jessica comes back in huff. Apparently, that was her manager that I spoke to, and Jessica is not happy about being called out for just abadoning me at her registration station without any communication.

     "Your paperwork isn't right. You're missing orders, so I'm going to have to fix it for you." She self-righteously proclaims.
     "Interesting, because I stood at the front registration counter for 8 minutes while 3 different clerks reviewed my paperwork and finally pronounced it complete." I offer.
     "Well. It's not. I have to call your doctor now and get it fixed."

Whatever! At this point, I've been at registration for about an hour, and my appointment is now overdue by at least 30 minutes.

     "My paperwork says I'm supposed to have started a test about 45 minutes ago. Is there anything we can do to hurry this process along? At this rate, I'm going to be late for my second test, which is scheduled in another 15 minutes."
     "Well, they should have told you to come early to register first."
     " I did. I deliberately came 15 minutes early so that everything would go smoothly, but I've been waiting at registration now for an hour and am now late for my test. Is there any way you can call them and let them know that I was here on time and it's the registration department that's running behind?"
    "No ma'am. But I just need to fix these orders and then print your stickers. You have another appointment today?"
    "Yes. That's what those orders that you keep looking at say. You don't show in the computer that I have another test scheduled at 2:30?"
     "Oh. Yes I do. You'll have to come back here after your first test to register for your second test."
     "What? You can't register me for both if I'm sitting here now and they're scheduled one after the other?"
     "No. And you'll have to have your ID and insurance information with you."
     "Okay. Let's call over your supervisor again because surely there's something we could do differently to expedite this entire process."

At that, she begins to back down a little bit.

    "Well, I suppose I could print your stickers for both procedures at the same time."
    "Stickers? What stickers?"
    "Each procedure needs stickers so they can label your results."
    "Okay. So print me 10 stickers instead of 5 and please let me be on my way."
    "It's not that simple, ma'am."

Actually, I'm sure it is. I've never been treated like this at any other hospital (and I've been to a bunch of different ones). Something is seriously broken here.

Finally, after another 5-10 minutes, she hands me some forms and tells me to wait just a moment while she prints off the stickers.

Another 2 minutes goes by while she prints off two entire sheets of about 30 stickers each. Really?

Then she announces, as if she's making the biggest sacrifice ever to assist me, "I'll personally bring the stickers for your second procedure down to radiology myself when they print off, so that you're not any later for your first procedure."
     "How many stickers do they need? You've just handed me two entire sheets of about 60 stickers total." My bewilderment is written all over my face.
    Again, in a big huff, she states, "And they'll need every single one of them for your first procedure."

If they were doing a bunch of biopsies, maybe. But they don't need 60 stickers for a CT. Whatever. I'm through trying to reason with Jessica. I'm sorry for the next patient who has to deal with her because she obviously doesn't know her job or have any idea what customer service is supposed to be like!

I'm directed down a long hallway into the radiation reception area. When I get there, I notice a desk. However, there's no signs at the desk and no one's sitting there, so I take a seat. After about five minutes of waiting and reading a magazine, I look up to find someone now sitting at the desk and people lined up in front of it. I watch them for a few moments, and then call out "Am I supposed to register with you also?" Like my registration nightmares could get any worse at this point!

It turns out that she needs me to register also, so I haul everything up to her desk as well, including my 60 stickers.

I'm so late for my first appointment that they're going to switch the two tests and do the ultrasound of my caratid arteries first and the CT second. Whatever. That's fine with me. Like I chose to wait in registration for an hour.

After a very short two minute wait, the ultrasound technician comes and calls my name.

Whew! Finally, we're getting somewhere.

The ultrasound goes very smoothly, and the technician is wonderful. She's even empathetic about my experience with registration and tells me that I should fill out a comment card. She knows that the hospital has been trying to fix things with registration for a while now, and needs to know about how I was treated.

Experience 3 - No Port Flush
Because I was so late for my CT scan, they're squeezing me in between two scheduled appointments. No problem. CTs take about 5 minutes. So they get someone to access my port, inject the contrast, and we're good to go.

Except. . .I realize at home the next morning that everyone was in such a rush to get those CT scans done, they never flushed my port afterwards. It's a life threatening mistake. Crud. Now I'm scared. Luckily, I have another test scheduled at St. Mark's today, so I'll go early and make sure they flush my port.

Experience 4 - Stubborn PFT Technicians That Can't Accurately Figure Out My Height
So it's another 45 minute drive back to St. Mark's. After registering for the pulmonary function tests (which took only 12 minutes total!), I go back to the radiology registration desk and ask if I can talk to Carla in CT.

     "Is there a problem, ma'am?"
     "Yes, I was here yesterday for a CT scan. They accessed my port, but they never flushed it afterwards. It's a life threatening mistake," I say, not realizing how loud I'm talking because the entire waiting room lets out a collective gasp at my last sentence.

Carla appologizes over and over again. It's okay, I guess. I forgot about it too in all the hustle and bustle of the previous day and after all the hassle I had with registration.

Now it's time for the PFTs. An older gentleman calls my name, and I follow him back to his area.

First, the scale for a weight and height. The weight he announces seems accurate, but there's a problem with the height. Even after insisting that I take off my flat shoes and socks, stand barefoot with my back against the back of the scale, and pressing down on my head to ensure it's level and I don't have anything height-altering things hiding on my bald head, he announces that I'm 5'2.5" tall.

Huh? I've never been taller than 5'0" my whole life. And Dale likes to kid me that I haven't reached even 5' yet, that I'm more like 4'11.75" instead.

I ask Duane to measure my height again because he surely didn't get the right number. He's annoyed with me though, because I'm messing up his organized routine.

     "I'll do it again after the PFTs are over," he insists.
     But I'm the patient and he's there to help me, so I insist stronger, "I'm standing here, barefoot, now. I'm not stepping off until it's right."

Reluctantly, he comes over and tries again. This time, he announces that I've now magically shrunk down to 5'.5", which is closer but still not right.

"Fine. Can we try one more time after the PFTs?" I ask. "Something is still not right. I'll just stay in my barefeet during the tests."

The PFTs are relatively uneventful, except he tries to insist that I use albuterol halfway through. I explain to him that I was told that I shouldn't ever use it because it made my heart race past 150 bpm during the last PFTs done at Timpanogos Regional Hospital, and they told me never to use it again, and that heart rate is actually dangerous.

When I explain all this to him, he's pretty insistent that I use it anyway, that those other technicians didn't know what they were doing, and that 150 bpm isn't really a problem.

I'm not convinced. If he can't even accurately get my height, how can I trust him with my lungs?

He's not happy, but he says he'll record that I'm a non-compliant, stubborn patient.

Whatever! Let me out of here please.

Before I go, he tries my height once more and gets 5'1.5" this time. He's very particular about how I stand each time, so how does he get three different readings that are all so far apart. I can't figure it out and, obviously, he can't either, so he decides he'll record that I'm 5'.5" tall. Whatever!

 

Initial Heart Appointments

It's off to the UofU hospital to talk to Dr. Tandar about an aortic valve transplant. I'm not that excited that we even have to discuss the subject, but here we go.

Monday
We meet with Dr. Tandar and Dr. Amit Patel. They're pushing for a trans-apical approach either through the right groin or through my ribs on the left side because it's less recovery time than open heart surgery. Also, as they put it, these other techniques were developed for high-risk patients that might not make it off the table from open-heart surgery. Oh joy! They think that's me--high-risk, might not survive open-heart surgery. And, because I just got radiation to the right groin area, they're thinking that they probably have to go through my ribs (less desirable, more painful, and more recovery time than through the groin).

It's funny, but I think the very best part of meeting Drs. Tandar and Patel are their assistant, Sally. She's awesome. She's their transplant coordinator and is available by email or cell phone to answer any of my questions. "You're my Rachael," I say delightedly.

She probably thinks I've misheard her name and says, "No, it's Sally."

When I explain to her that Rachael Beers is my bone marrow transplant and how efficient and effective she is, and how much I love working with her, Sally is a little relieved, but I don't think she still likes my comparison.

A bunch of tests have to be done before the doctors are willing to say which procedure they'd do (through the ribs or through the groin), so we talk about scheduling those. We tell them that we're seeking a second opinion at St. Mark's Hospital, so maybe half the tests should be scheduled at St. Mark's and half at the UofU.

Wherever we feel the most comfortable is where we'll have the procedure done.

Wednesday
We're supposed to meet with Dr. Kawande at St. Mark's Hospital. However, when we get there (and not before), we're told that Dr. Kawande can't meet with us unless we want to wait three weeks, so they scheduled us with Dr. Schorlemmer instead. But first, we need to meet with another cardiac doctor first. That first doctor was an absolute waste of our time. He basically told us, "You have a lot to think about and a lot of information to sort through so that you can make a decision on which way will work better for you. I don't know what to tell you and don't have any recommendations for you."

 

Well, if that's what he, as an expert on the subject, thinks, how are Dale and I supposed to figure it out? Not helpful!

 

Dr. Schorlemmer was much more helpful and said, "Why don't we proceed with these five tests, which you'll have to have prior to surgery anyway. The data from those tests will tell us what is and isn't possible, rather than us trying to guess, based on your history."

 

Hooray! A plan and someone that makes sense. So I stuck around and Dad left me at the hospital so that he and Travis could go ATVing together.

 

I'll have more appointments on Thursday also. But the appointments at St. Mark's are all setting up for the perfect storm. For more details, see the post with that title!

Aortic Valve Referrals

In preparation for an allogeneic bone marrow transplant, I have an echocardiogram done to make sure my heart is cleared and can handle the stress of the transplant.

Uh oh! It seems that now my aortic valve in my heart needs to be replaced. I'm not sure why it chose now because we've been watching it for about five years now. Five years ago, I was told it would probably fail within 1-2 years, but it's been doing well and hanging in there. However, I knew if it got done to opening less than about 1", it would be time for surgery.

And that time is NOW. Crud! If we have to delay the second bone marrow transplant by more than four months, I'm predicting that the Hodgkins will be back, but there's no way my valve can continue. In fact, I'm being classified as being in heart failure until that valve is replaced.

Dr. Walker refers me to some colleagues of his at the University of Utah hospital and wants them to evaluate me to see if I'm a good candidate for an alternative procedure where the valve wouldn't need to be replaced through open heart surgery.

The idea of needing open heart surgery, of people inside my heart, terrifies me. After everything I've been through medically, you would think it would be just another checkmark on a list, but I'm very nervous about this process. So being able to repair my heart without opening my heart sounds very intriguing to me. (Although I still don't like the idea of someone messing around with my heart. It's more critical than lymph nodes, or a spleen, or an arm, or a leg, or even reproductive organs--which I've had operated on in the past.)

Dr. Wendy hears about the valve and calls me personally to tell me that she'd like me to consult with a friend of hers at St. Mark's Hospital. She then explains that open heart surgery is the preferred way to replace the aortic valve, and she's worried that UofU is just interested in the research aspects of performing the replacement in alternative methods for the numbers and data that they can gather.

I trust her and her professional opinion, so I call to make an appointment with Dr. Karwande at St. Mark's Hospital, in addition to the appointment I already have with Dr. Tandar at U of U Hospital.