Pat’s Place: Poor Communication Can Cost A Myeloma Patient Time And Money
Hello again from the bone marrow transplantation inpatient unit at Moffitt Cancer Center in Tampa.
I learned yesterday that I will be discharged today and move to outpatient housing. This is exciting news! I still have a long way to go, but with luck the worst is behind me.
I’m so relieved. I know my wife is, too. But now is not the time to relax.
There are dozens of little details to cover as I prepare to move into my new outpatient apartment.
The bone marrow transplantation inpatient and outpatient staff are excellent. But they operate independently of one another, and I’m a little worried about communication problems.
I have already run into a number of situations where one medical department assumes another had things covered.
Let me share some examples to show you what I mean and to underline how important it is to pay attention and take detailed notes.
As in most hospitals, doctors and nurses at the Moffitt Cancer Center make morning rounds. I had been experiencing some painful headaches for several days. We discussed this extensively at rounds, and all agreed something as simple as Tylenol (acetaminophen) could make my headaches go away. However, Tylenol can mask a fever, so it isn’t available to me. Neither are any of the other over-the-counter pain medications.
My only, best option is to increase my dose of oxycodone. Seems a bit silly, but I understand.
One of my physicians mentioned some follow-up testing if the headaches didn’t improve, but the consensus was to wait.
At the same meeting, one of my doctors also felt it was important to get a stool and urine sample.
Fast forward to that evening. I answered a knock at my door. There stood a tech with a wheelchair. “Time for your CT scan,” he said.
“CT scan?” I replied. “I’m not supposed to get a CT scan!”
It was easier to go along than to argue. Presumably the test was ordered because of my headaches, even though we’d agreed not to do follow-up testing yet. At least I got to walk--and leave the unit for the first time in 15 days--wearing my Donald Duck-style face mask.
I re-stated my concerns once I arrived at the radiology department. I then made a decision: To refuse the test and return to my room. I figured I would simply bring it up the next day at the morning rounds.
After I returned to the unit, I reminded my nurse to grab the stool and urine sample I had collected a few hours earlier.
“I’m sorry, but there isn’t an order on your chart for either sample,” my nurse explained.
Surprised? I wasn’t! This type of thing happens a lot. But I was surprised that the tests that we had decided were necessary weren’t on my chart, while the CT we had never even discussed was.
My doctor agreed with me when we discussed it today. The CT scan was not necessary and shouldn’t have been ordered. Had I not been paying attention, I would have had an unnecessary and expensive test--not to mention the added radiation exposure.
The key to a successful transition is me and you--the patient and caregiver. We are the one constant. We are the only ones in each meeting. And we are the ones who benefit most from a successful plan.
So don’t be afraid to speak up or ask questions. Take a deep breath and hold firm. If a test or change in treatment plan makes sense, great! If not, ask questions or insist on a change until they do.
Feel good and keep smiling! Pat
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Hi Pat!
So glad to hear you are moving on to Outpatient housing! Next stop: Home! Your article today is an excellent example of how important it is to be your own advocate. Thanks for sharing and helping others!
Best wishes for a quick and complete recovery!
I have had two bone marrow transplants at the Mayo Clinic in Rochester, and I never experienced doctor/nurse communication issues. The Mayo Clinic's BMT is all outpatient....the in/out patient set-up could be the problem.
Thanks Robin and Pat! Pat, I have spent many hours at Mayo in Rochester. Tough to beat! They did an excellent job with my difficult, 12 day harvest.
Moffitt definitely has some communication and fulfillment issues. But much of the staff is excellent. The clinic and hospital are accessible. My insurance wouldn't cover me heading back up to Rochester. As long as my SCT works, I'm cool with it. I'm glad you received such excellent care! Mayo Rocks! Pat
I've already run into the same issue, as I am dealing with two different institutions for my care: my main care, and head of my team, is at the local hospital, but the ASCT (and originally the radiation) were done at a cancer center out of town. And of course, communication and transfer of data is an ongoing problem. That, I think is forgivable to some degree (even in this day and age of instant communication via on-line tech? Maybe not all that forgivable, eh?)
What I DON"T think is quite so easy to get past is one doctor not knowing what another doctor is planning, doing, or such. For instance, my main onc set me up for 3 rounds of Velcade/Dex 21 day, as his standard protocol. Then, a couple of weeks ago, I went to the cancer center for a consult regarding beginning ASCT, which he had set up... which turned out to be nothing more than a "how are you doing" meet with the onc who will be leading my ASCT... there was no plan whatsoever to at that time start the process (that, as of now, starts a month from now.
Heck.. the ASCT onc only has seen my post-first-round chemo bloodwork... he actually had no idea what my response has been. None. He basically had no info on me, or perhaps hadn't bothered looking. I am, to say the least, concerned.
And the ASCT onc mentioned he was surprised I'd had 4 rounds already. "I haven't. Just three" "Oh, well, that's no good. You need 4. I'll contact your doctor and get that straightened out. " AFAIK, as of yet he never did... I did. Just this aft had my last Velcade, and will finish with the Dex tomorrow. Wooooooo-Hooooooo on that~!
So yeah.. proactive is definitely not even a choice: you absolutely have to.
Keep up the faith, Pat. You're getting there, and reading your experience encourages me to remain vigilant... esp given that my Beloved won't be able to be on top of things for the weeks I will be at the cancer center later this summer...
Hi Pat, It's good to be pro-active about all of your treatments, even if just so that you can discuss things intelligently with the medical people. You sure don't want your charts getting confused, etc. I always asked for copies of all my blood work starting from the induction chemo on Velcade and have a thick binder of all the results by now. IT helped me to be able to review them after my app'ts, and chart my progress. Not all patients do ask for copies, but all the people who treated me just made another photocopy for me to take home. And I guess you should make notes on all of your treatments. i was quite paranoid when getting IV treatments and would always look up at the bag(s) to make sure it was my name on it (it was always fine). I know , they have a lot to keep track of in the hospitals and it's good to be on top of what is going on! Best wishes on your ongoing treatments. Where i was, the Tom Baker Cancer ctr in Calgary, at the time of the SCT, I was admitted to that dep't and then after that, which was a few months actually, was referred back to my regular oncologist as an outpatient. He had also done the induction chemo work. The BMT clinic didn't have you seeing other doctors while you were in the SCT process. Hope that helps?
Pat, so glad you are moving toward going home! No more 2-4 hour nursing checks!!!I couldn't agree with you more about being one's own advocate and "watch guard" -- We carried around our 3 ring binder and sometimes had newer lab results than the doc he was seeing. Get lots of good rest and don't be hard on yourself if you don't feel like doing a thing!! Rex and Kay
Thanks, Pat, for the update. I eagerly await your postings to hear how you're doing. I am also pleased to hear your positive comments and those of the other Pat about Mayo Clinic, which we're considering for my husband.
Pat, my face turned bright red during one of my transfusions. The syndrome name they called it was very politically incorrect. I was given benadryl and that handled it. So glad you are transitioning out of the hospital. You have come a long way. Linda
John and Nancy-
It is so hard to stand up and question the experts. But sometimes you can wear them down....
Linda-
That sounds a lot like what I experienced. Didn't take anything for it--not sure anyone but me really noticed. Seems to be getting back to normal.
Rex, Kay and Cheryl-
Thanks for reading and caring! It helps me get going when I don't want to!
Just received good news concerning my Petscan. Everything looks within normal limits. I now have to wait for the results of my bone marrow transplant. That will determine if I need a second transplant or if I maintenance therapy. I should find out on my next appointment on 8/3/11. Keep me in your thoughts and prayers.
Thanks.
Congrats on the good news! Please let us know how your last test turns out- Pat