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.

How Many Medical Personnel Does Radiation Take

How many different medical personnel does it take to get radiation treatments?

1. Laurie - receptionist to answer phone calls and schedule appointments.
2. Debbie - nurse practitioner(?) to do scans, make molds, and assist the doctors.
3. Dr. McAllister - radiation oncologist to review records and plan the treatment.
4. unnamed physicist - to help the doctor figure out how to shape the radiation beams so that only the exact areas that need radiation get it and nothing else is damaged in the process.
5. Dr. Blair - radiation oncologist to review treatment plan and ensure nothing gets missed.
6. DeAnn - nurse to get vitals and current status in preparation for weekly follow up appointments with one of the radiation oncologists to ensure everything is going well with the treatments.
7. Chad - radiation technician to position me exactly for each treatment and run the radiation machine.
8. Janelle -  radiation technician to position me exactly for each treatment and run the radiation machine.
9. Steve - nurse practitioner to see me for follow up appointments after radiation is completed.

How many different medical personnel does it take to get radiation treatments?

9! That's all :-)

Radiation Begins

After taking a few scans, making a foam mold of my lower half so I can lay in it and position my body in the exact same way every time, adding tiny black stickers to my body (because I beg not to be permanently tattooed), and a few follow up appointments with more scans, we're finally ready to begin radiation on Thursday, April 18.

Hooray! Initially, I was told that it would take at least 2-3 weeks before we began, but it's been only a week and we're starting. Hooray!

It will take 20 sessions, so I'm scheduled to finish on May 15.

Every day I drive to Provo, walk in the side door, wait in a separate back waiting room (where I never see anyone else) until one of the technicians comes for me, walk into the leaded radiation room, drop my pants (while they hold a small cloth in front of me for modesty), get positioned on the narrow table, wait for the 2-3 technicians to finalize all the tiny alignments with those stickers, watch the technicians leave and close the heavy leaded door behind them, wait approximately 11 seconds while the machine hums over me, count off another 30 seconds or so while the machine spins around my body so that it's now positioned under me, and count off a final 8 seconds for the last part of the radiation is delivered preciously where it needs to go.

Then it's a quick hop off the table, get fully dressed again, and I'm free to go again until it's time to repeat the process.

Tomorrow, same time, same place, every weekday until 20 treatments are finished.

It's not hard, difficult, or even that time consuming. The side effects are very minimal--just some redness that feels like a minor sunburn. I start applying Radiaguard (a lotion) about the fourth or fifth day, 2-3 times a day, and its works great.

It's the drive between Cedar Hills and Provo every weekday that quickly gets old. Oh well. If it prevents the Hodgkins from coming back, it's definitely worth it!

Setting Up a Radiology Appointment

Now that the Hodgkins is gone--again--I need radiation--again--to try and prevent those lymph nodes from getting cancer in the future. It's a way to try and stop the Hodgkins from returning (because it tries to return in the last spot it was in).

After lots of phone calls to check with Dr. Jay's IHC office, our insurance company (Blue Cross/Blue Shield), and Central Utah Clinic in Provo, I'm finally able to determine that I have to drive down to Provo for radiation, so I call to make that appointment.

It's a good thing that I'm used to standing up for myself because Dr. McAllister's receptionist tries to tell me it will be at least a week before he can see me.

I'm not willing to wait an entire week unless I absolutely have to.

What's the delay? He doesn't have a spare 30 minutes anywhere in his schedule within the next four working days?

Well, he likes to get and review all the information from previous scans, radiation treatments, and the referral from the oncologist before that first appointment. I can understand that, so what if I pick up all the information he needs and bring it to his office?

So I head to Salt Lake City and drive to the UofU hospital where the PET scan results from Huntsman are kept, find my summary statements from Mott's Children's Hospital at the UofMichigan from when I was 7, and stop by Dr. Jay's office for my radiation records from them.

Then I drive to Provo and hand deliver everything to Kathy.

I've been around the block a few times; I know how medical things work; and I know how to speed them up.

Amazingly, Dr. McAllister can now see me on Monday, April 15 at 1:00 pm.

Whew! It's like I have to beg for the treatments I know that I need.

Insurance Nightmares

I once heard that the CEO/President of Intermountain Healthcare (IHC) and the IHC insurance company and plan (SelectHealth/SelectMed) and the CEO/President of the University of Utah medical systems have a personal grudge or disagreement with each other.

Because of their disagreement, one (or both) of them vowed that they'd make sure that IHC and the UofU medical systems always remained separated from each other so that IHC providers would never be covered by insurance companies that accepted UofU providers and vice versa.

I certainly hope that is not the truth!

If it's only a squabble on a personal level between two (so-called) professionals that's keeping me from
* being seen by the radiologist that helped me before (That familiarity and history definitely helps when dealing with cancer!)
* driving only 1.5 miles from my house
* and requiring me to pass a radiation oncologist's office while driving the 30 minutes it takes to drive to south Provo to another office
then
I HOPE SOMEHOW JUSTICE IS SERVED AND THEY HAVE TO COMPENSATE EVERY PERSON THAT THEY INCONVENIENCED!

Please, please tell me that my health care decisions are not affected by disputes of a personal nature!

No Dr. Jay This Time

I decide to go into work on Monday morning, because I agreed to cover for my team. Cancer or not, I'm a person of my word.

While I'm at work, I'm trying to navigate how to set up radiation appointments.

So Corrine from Dr. Jay's office is back in the office and relays this unfortunate news: since we now have Blue Cross/Blue Shield insurance, Dr. Jay isn't a covered provider for them. He's only an IHC (SelectHealth/SelectMed) provider, so I need to contact the nearest radiation oncologist--in Provo!

I immediately put in a call to the Radiation Oncology department at Central Utah Clinic in Provo and leave a message.

About 11:00 am, I haven't heard back from Provo, so I call again. Finally I get through to the receptionist who tells me that the soonest that she can fit me in is Friday afternoon. Really? Are you kidding me? I know how scheduling goes and know that there is room in their schedule sometime before Friday.

The waiting game is the worst part for me. When you know you have a serious medical condition and you know what the next step is, why do you have to wait for it?

I decide I can't handle waiting, so I call the receptionist on her statement. "Really? There are no possible appointment times from Monday afternoon until Friday afternoon? With two doctors in the office? Are they on vacation? At a conference? Surely, we can take the next step without having to wait until Friday? I know how this goes. This will be my third time getting radiation and it's my fourth time dealing with Hodgkins lymphoma. Isn't there something we can do to move things along?"

She bristling a little, but then starts explaining that Dr. McAllister first needs a referral from Dr. Wendy. Then, he needs time to receive all of my records and time to review them, so Friday is probably the first chance he'll have to get everything he needs.

"It's okay; I understand what you're telling me. What can I do to speed up the process? I'll hang up now and make sure Dr. Wendy's office calls you immediately. What else? What records does Dr. McAllister need? I'll get them and hand deliver them to your office if it will help."

So finally acquiesces that if they get the referral call and if they get my medical records faxed over from Dr. Wendy, she can fit me in on Wednesday. Whew! One obstacle down.

Broken Ankle Follow Up

Dr. Garrett asked me to return for follow up x-rays on my left ankle about two weeks out, and it's been two and a half weeks, so I head back to Urgent Care in Lindon.

Dr. Garrett is out on Spring Break, but a nurse practitioner is available to see me, so I head back to x-ray to get follow up images.

I never asked what part of my ankle I broke, so I ask the technician if I can see my earlier x-rays to see what I broke. She needs to know what x-rays to do, so she pulls them up and the formal report from the radiologist who read the x-rays after I left Dr. Garrett a few weeks ago.

She pulls up the x-rays and shows me where an earlier break of my malleolus occurred. (The malleolus is the rounded bony prominence on the outside of each ankle.) She can tell it was an earlier break because the edges are all rounded and smooth--evidence of a healed broken bone. And she points out the sharp jagged lines of what Dr. Garrett assumed was where I broke it this time. It's a smaller break, about a quarter of the size and behind the earlier break.

She pulls up the radiologist's report and we read together that he notes the earlier break but doesn't see evidence of any other breaks.

Wait a minute? I've been clunking around in that stupid boot when I didn't need to? Forget that! I'm ready to be done with the walking boot. Hooray!

The technician doesn't want to subject me to more radiation for a non-break, so back to the waiting room I go to wait for the nurse practitioner. She's fast and a few minutes later we're discussing my foot. She's looked at the old x-rays and the radiologist's report and is absolutely convinced I have broken my ankle and doesn't really know how to explain the report--except that radiologist's in her opinion can't be trusted.

She proceeds to tell me about a violent pain she had in her stomach for a while ago, insisted upon CT scans, and read the radiologist's report that all was normal. She insisted on seeing the pictures herself and noted lots of fluid accumulation right where she was feeling the pain. Turns out she needed surgery but felt immediately better after the surgery.

I recounted my own recent experience of having a CT scan to track the progress of chemo in shrinking the tumor in my right inguinal lymph node and not having the radiologist even mention the lump in his report. Then having to have them go back into the scans, measure the area, and add an addendum to the original report with the new measurements.

I can understand how they might miss a small break if they miss measuring a tumor that we've been tracking for several months now and were asked to compare the size to previous scans that were done at the same place (Central Utah Clinic in American Fork).

So back to x-ray we go to compare old films to new films to see if it's healing. The malleolus is supposed to be one bone. It looks like the new break is healing but it's not healing or attaching itself to the malleolus; instead, it's a separate little disk of bone that's just out there by itself.

She asks if it's causing pain. (No, because I can't feel my feet due to the neuropathy.) And then suggests that I come back in another two and half weeks to ensure that it continues to heal. If it was causing me pain or making it more difficult to walk, she recommend surgery. However, it's hard to tell if it needs surgical intervention because walking is difficult anyway, and I can't feel my feet.

The comedy of errors that is my life--it isn't broken, but wait it really is--continues!

Port Insertion

A slight change of plans. Instead of getting the port inserted on Friday, then heading straight over for chemo, Dr. Wendy wants a little more time for everyone to figure out how to use this new drug.

Am I willing to get my port inserted on Thursday morning, then start chemo on Friday first thing in the morning? Sure. I'm flexible at this point, as long as we're moving forward.

So, Miriam and I head over to the Physicians Plaza in front of Timpanogos Regional Hospital on Thursday morning around 7:30. They want me there by 8 so the insertion can start at 9 a.m. I don't know why they want me there so early, but I'll comply.

This time is weird though. No call to let me know where to go or how to prepare (no eating or drinking after midnight kinds of information). Luckily (or is that unluckily?), this is the third time I'll have a port inserted so I pretty much know what to do.

We arrive at the heart cath lab, and it's pretty obvious that they've never dealt with someone like me before and are not used to inserting ports.

They want three vials of blood and to start an IV before the procedure. Pretty standard practice, but not for me anymore. It took BMT six pokes to draw two vials of blood, but they were used to chemo veins.

It takes over an hour, seven sticks, an ultrasound machine, and two different "expert" phlebotomists to FINALLY start an IV. The whole time I'm saying "You don't really need an IV. I'm not going to have any sedation. And I just had labs drawn at Dr. Wendy's office on July 31." That's not good enough. Hospital protocol says I have to have an IV and labs drawn within 7 days of the procedure.

During all the pokes and digging into my arms, I did have a unique experience to add to my repertoire. While fishing for a deep vein in my right arm that showed on ultrasound, an intense electrical shock traveled down my arm and zinged hard into my right ring finger. Never had that happen before. It's intensity surprised me so much that I jerked my entire hand in a involuntary reflex sort of way. I knew as soon as I felt it that the tech. had hit a nerve, but what a strange feeling!

By the time they finally insert the IV into one of my wrist veins (ouch again!), they've all given up on the hope of drawing any blood from me. ("That IV is so tenuous at best, that I'm not risking it by trying to draw blood from it first.)

Can you see why I asked for and need the port people? If you absolutely need the blood, wait until the port is inserted and then draw from it.

A port insertion is supposed to be fairly easy and fast, so I mistakenly and somewhat brazenly tell Miriam we'll be out of the hospital by 11. Huh! Not so fast, Trish.

First the whole IV fiasco puts us behind by an hour. Then, Timp. isn't used to doing port insertions so it takes about 90 minutes, instead of the usual 30 or 45. Then, they want to keep me afterward for observation for two hours.

What's the deal? I didn't have any sedation. I was absolutely fine and walked out of the procedure room on my own two legs. I guess the nurses at the front desk were really in shock over seeing me walk out. They'd never had that happen before.

They just want to observe me and ensure that the port site isn't going to bleed because they were unable to draw their labs beforehand. Fine, but will you please pull the stupid IV. It's burning and stinging worse than my neck and chest are. Nope. Hospital policy is to leave it in until you're discharged.

Crud! Another hour and a half of more waiting time just got added to my schedule.

In the meantime, can I get some Ibuprofen or something for pain? The IV in my wrist, another attempted IV site that blew, and my neck are all stinging and burning.

"Oh, we're not used to dispensing medications and don't have any here. We'll have to call the doctor to get approval, then order the medication from the hospital pharmacy next door, and then go pick it up." We might be able to have something to you in about twenty minutes. Lovely! This place sucks for port insertions!

And they don't listen to their patients very well. I told them that AF found it most helpful to have me partially sitting up. That position assists gravity in pulling my chest away from my neck and giving the radiologist the most room to work with (because there's about 1.5" total anyway between my neck and the start of my chest). Also, I'm allergic to tegraderm (those clear plastic bandages that doctors like to cover surgical sites with) and don't need the port for anything else today so don't leave it accessed. AND I have tachycardia (fast heart rate), so don't expect my heart rate to ever be under 100 bpm unless I'm asleep. (The doctor wanted to be called any time my heart rate was over 100--ha!)

They didn't listen or weren't prepared to deal with any of those things, so I suffered through it as best as possible.

Then, when I was being discharged, the papers are obviously the standard for a heart cath. patient. Mine read, "If you were told that you have heart failure today. . ." What the! There's nothing on the papers about keeping the incision site in my neck and chest clean and dry for X number of days or anything related to a port insertion, but now I know what to do if my heart is in failure. Very helpful. . .NOT!

And no prescription for pain pills. What? Let me stuff a 1.5" cubed piece of plastic into your chest and dig a tunnel for the connecting sheath from the plastic to attach to your neck vein and then into your heart with several internal and external sutures and tell me you don't need pain meds. Can I please have just three: one to help me sleep tonight, one for tomorrow because day after is usually a little worse, and one for tomorrow night for sleep? No. We don't do that. You might want to contact your oncologist because she knows you better and can judge that better.

Look! I just walked out of the procedure room by myself, after having no sedation. Clearly, I'm pretty tolerant of pain. If I'm telling you that I want three pills, is that really too much to ask? Apparently, for them, it is.

Luckily, when I checked our medicine cabinet at home, I still had three pills left over from the port insertion that was done just about a year ago.

Poor Miriam. What was supposed to be an easy, 1.5 hour hospital in-and-stay ended up being a 6 hour torture fest. She did hear two of the staff, including the doctor talking in the hallway after the procedure. Apparently, they think I'm the perfect person to have with them if they were ever in a bar fight--because I'm so tough. Hilarious!

Whew! I didn't realize that today was going to be such a fight just to get a port inserted for chemo!