Perfect Storm - Finale

I call St. Mark's medical records department in the morning, to warn them that I'm going to need copies (pictures) of the caratid ultrasound, CT scans, and PFTs that I've had done. I'm told that they can't do anything until I'm there in person because I have to sign a release form. Anticipating this need, I've already signed a full release of all medical records from St. Mark's to UofU and back. However, that's not good enough for St. Mark's, or at least the woman in medical records that I spoke with. Even though it will be several CDs worth, nothing can be done or started until I'm there in person.

Okay, fine. We'll deal with that later and head off to UofU for a transesaphageal echocardiogram (TEE).

After some squawking from the TEE technician (maybe I'm getting too keyed up around all these medical personnel, and am too familiar with what's going to happen next), I finally convince him that I'm not going to Versed and goes off to get the radiologist to perform the test.

In the end, I do agree to some Versed to help control my gag reflex, but not enough to knock me out.

Then, I have about two hours before my next procedure is scheduled at UofU, so I head to St. Mark's to see if I can get the CDs with all of my test results on it.

Over the phone this morning, I asked where medical records is located but was told I'd be directed there after I arrived at the hospital. I inquire at the front Information desk and am directed past the coffee area in the cafeteria, down a long hallway, to the last door on my right.

Hooray! I'm finally in medical records and we can get some action going. I have a good idea of how much information I'm asking for. In fact, I ask the girl at the desk if she can call down and have them start copying files while I fill out the release of information form.

     "How long will it take to copy everything?"
     "It will be about 15 minutes, if you'll just have a seat."

Great. I have about 90 minutes before my next appointment at UofU; that will give us a lot of time to get the records and drive back to the U.

The girl answers her phone, listens, and then announces to me, "You have a lot of records to copy, so it will probably take 20 minutes and not 15 to copy them."

No problem. That still leaves plenty of time.

So Dale and I wait, and wait. Another gentlemen comes and asks for some records. About 10 minutes later, someone comes to the room with his records in an envelope and he gets to leave. And we wait some more.

     "Any idea how much longer on my records?"
    Another call and "About 15 minutes more."
    After about 30 more minutes, I inquire at the desk, "Can you call and see how much longer it's going to be?"
     "Sure." There's a call, and the response, "She says it should be about 15 minutes."
     "Really? Because 30 minutes ago, we were given that same answer. We still need 15 more minutes? So no progress has been made in the past 15 minutes?"
     "You requested a lot of records, ma'am. I'm sure she's doing her best."
     "Okay. Well could we wait closer to wherever the magical records are being copied? That way, we don't have to wait for her to walk them over or up or down or wherever she is and we can leave sooner. Now I'm getting worried about my other appointment at the U that's supposed to be in 30 minutes."
     "No, I can't send you over where she is; and I can't tell you where she is. She's busy copying your files and will be here when they're ready." However, she lets slip that the magical file room is near Radiology.
     "Fine. I'm going over by Radiology to wait there."

When I get to Radiology, I notice the same receptionist sitting at the front desk that was there when I had the carotid artery ultrasound and CT and then got my port flushed and PFTs the next day. Hopefully, she'll recognize me and be able to help speed this process along.

     "Hi, I'm having some records copied to disks. Can you call the lady that's copying them and see how much longer it will be?"
     Another call and "She's going as fast as she can and has no way to judge how much longer it will take."
     That's an honest answer at least. "Does she know how far along she is? Like 50% or 75%?"
     "Just a moment," a pause in the telephone conversation and then, "She's about 65% finished."
     "I'm going to be late for an appointment at the U that she knew about. I've been waiting for about 75 minutes now and she thinks she's 65% finished? What can we do to speed this along?"
     "I'm sorry. You're just going to have to wait."
    
By this time, I've got 5 minutes until my appointment at the U, so I call Sally to let her know the fiasco I'm experiencing. No big deal, Sally assures me, but can I be there in the next 30 minutes.

30 minutes still gives me a little wiggle room. Maybe those files will magically speed up and be finished in the next 10 minutes so I can take them with me. I sit down to wait again.

About 8 minutes go by when. . .I'm not kidding. . .all the lights in the entire Radiology department go off. There's no power, at least in that part of the hospital.

I'm immediately on my feet and back at the Radiology reception desk.

     "Hi. Can you call the records department and ask them if this power outtage affects my records being copied?"
     "Sure." Then, "Yes, the power outtage stopped the records halfway, so she's going to need to start over."

Forget it. If the other signs weren't obvious enough (switching doctors on me without notice, registration problems galore, not flushing my port, not being able to correctly measure my height, and not allowing me access to my own records in a timely manner), and now the power completely shuts down?

Not only will I not be using St. Mark's services or allow them to touch me again for any medical procedure--yet alone the valve transplant, I now vow that I will never step foot inside their hospital ever again.

Message finally received. It's as if the hand of God reached down and personally said, "Thou shalt not go here."

********************After note***************
I did get a personal phone call from Steve Bateman, CEO of St. Mark's Hospital. When he heard all of the hassle I had to endure and then the last straw of the power going out, he's the one who said "I'm not trying to be insensitive, but it's almost humorous. It's like the perfect storm went off just on you."

Yep. Even though I have his personal cell phone number and an offer to meet me personally at the door the next time I'm at the hospital,  I will never step foot inside your hospital again.

Good-bye St. Mark's. Hello U of U.

The Perfect Storm - Continued

So after the whole debacle of technicians that can't even measure my height correctly (and the life-threatening mistake of not flushing my port), I decide I'm finished with St. Mark's Hospital.

I don't think there's anyway someone could convince me to have my aortic valve replaced at this hospital.

I'm supposed to have a transesophageal echocardiogram (TEE) performed tomorrow at St. Mark's, but while I'm still in the lobby of St. Mark's, after the PFTs, I call Sally and ask her to schedule all remaining tests at the UofU Hospital.

I'm finished with St. Mark's. I just cannot trust that my life is in good hands here.

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.