Welcome back to the lemonade blog series. I hope that all of you had a safe and enjoyable Thanksgiving. Mine was wonderful with all my children, their spouses, my grandchildren, and local relatives, with a baby shower for Hannah on the weekend to follow. I have lots to be thankful for this year as outlined in my previous post.
Today we have a strange title. I’ll be the doc at the dock. The port? You’ll have to read on. There are many lessons here today for patients, their caregivers, and also for clinicians.
Based on a recommendation from son-in-law Andrew, because of the length of these blogs, I’m going to include some bullet points at the beginning that match up to bolded headlines below. That way, if you choose to read these in pieces, or the science stuff requires more concentrated down time, you have that flexibility. Thank you Andrew!
Here are the topics:
- MEDICAL BILLS AND PAYMENT FOR SERVICES DON’T HAVE TO BE A TRAVISTY
- CHEMO TREATMENT 11/29/2021
- LESSON ON IV PORTS, ASEPTIC TECHNIQUE, AND A HUGE HURDLE
- SHORT BLURB ON CYCLE 11 CHEMO TREATMENT 11/29/2021
- COULD THIS SQUABBLE LEAD TO SEPARATION FROM MY ONCOLOGY GROUP?
- CT RESULTS – HOW AM I DOING?
MEDICAL BILLS AND PAYMENT FOR SERVICES DON’T HAVE TO BE A TRAVISTY:
On 11/25, the day before Thanksgiving as family were arriving by air, car, bus, and train, I received four separate letters from a local law firm. To my surprise all of these were titled “Debt Collection Notice”. They were an accumulation of bills over the last several months that mostly involved co-pays or non-covered medial services. My cancer treatment journey has involved a local oncology group that is affiliated with Academic Medical Center, several services within that hospital (transfusion, imaging, gastroenterology, radiation oncology, surgery clinic, and inpatient stays) and separate bills from different addresses that come to me are from:
- XYZ Medical Center
- XYZ Medical College
- XYZ Medical Center College
- XYZ Med
- Oncology practice (name without for confidentiality)
These bills are generally paid by me immediately, BUT sometimes my insurance company (BCBS Federal) sends me a letter (mostly for items $5000 or more) stating that my claim has not yet been paid to the facility because I need to complete paperwork to confirm I don’t have secondary health coverage. I completed the form once and called them after a second and third claim were denied pending this identical paperwork. But each time they receive a large bill, they stall the payment and insist on me to complete another form – then I call them out and reem them out for these shenanigans and they say “okay, we see your form on file and will process this”. Because of these delays, I sometimes hold off on paying certain bills. Often times I’ll pay a bill, and then a few weeks later the check is mailed back saying I already paid it. Without itemized bills from a single entity, it’s impossible to figure out what bill is for what service and/or which doctor visit. And, asking me to write payment to and mail the check to one of five institutions above (which are all essentially the same place, except for the oncology practice affiliation), makes it even more confusing. I called the billing service at Albany Medical College and asked for a breakdown of what was paid, what wasn’t, and who I owed what to – I promptly paid the outstanding bills.
A few days later I was in the oncology clinic and overheard a woman at the intake window. She was asked to pay her bill. She said, I try to pay all my bills on time, but I don’t know what I owe. “I send money, they send it back”. I don’t pay, they harass me with text messages, letters, and e-mail…”
My point here is that the accounting system is broken and imagine the toll this harassment and overwhelming bills could have on someone at this holiday season that does not have the financial means to pay these bills – it could result in missed appointments, selection of less expensive less efficacious medicine or procedure options, decreased ability to eat healthy, and diminished immunity due to stress.
Lesson: My advice to patients is that they get in front of this, meet with billing, tell them what you can afford, and set up a monthly payment plan, even if it’s just $25 per month for thousands due. Once that happens, they cannot send it to collections because you’re making a good faith effort to pay based on your income (or lack thereof) and cashflow.
CHEMO TREATMENT 11/29/2021:
Chemo cycle treatment 11 was scheduled in the morning as usual. You’ll recall from my last blog that I wanted to change my oncologist virtual visit so that I could discuss my CT results, the imaging test which was scheduled for the Wednesday immediately preceding Thanksgiving. I was promised a call back within 2 hours. That turned into 10 days with no call back. The plan was for me to meet the NP this cycle before chemo, which is perfectly fine, but she couldn’t discuss the plans moving forward based on the results. To my surprise, I was told the morning of the visit that the Oncologist would do a virtual visit with me this morning from the hospital and then I would receive treatment as planned pending return of my bloodwork. This was very efficient and met my needs/request, but it sure would have been nice if someone called me back 10 days earlier to tell me the plan.
LESSON ON IV PORTS, ASEPTIC TECHNIQUE, AND A HUGE HURDLE
Over the last several weeks, I have been a bit unnerved about the lack of consistency among the staff nurses at the oncology clinic in terms of their knowledge and ability to manipulate syringes, needles, etc. I’d say 50% are fabulous and 50% are somewhere between lackadaisical and pathetic. To understand this concern, I need to give you all a short lesson on a central IV line, how to access it, and how to preserve it.
See photos of a central line port. This port is placed within a muscle pocket that is surgically created to nest the port. The port is attached to a spaghetti-like latex tubing that is thread over the clavicle bone to a large bore blood vessel feeding directly into the heart. This large bore vein is necessary to dilute out caustic chemotherapy that could otherwise sclerose (or destroy) your peripheral arm vein, leak out to the skin, and kill the tissue sounding the area, which in severe cases can result in amputation – so you now understand the importance of a central line access, as a large bore vessel with rapid blood flow immediately dilutes out the chemotherapy.
It is extremely important that anything injected into that port is sterile. And, when the port is not in use following drug treatment, it must be flushed out with 10mL normal saline (0.9% sodium chloride solution) immediately followed by 5mL of low dose heparin to prevent it from clotting off prior to the next treatment – generally these two injections will preserve the port for at least 6-weeks after which time the port will need to be accessed again and flushed with saline followed by heparin. Then the needle is removed, and the port safely remains sterile beneath the skin, and you can shower, bathe, swim in the ocean, etc.
But if sterility is not maintained by the nurses that manipulate these syringes due to poor aseptic technique (learned procedures to maintain sterility), there is a risk that the catheter can become infected and that the infection travels to the heart which may require port replacement, a heart valve replacement, septicemia (body infection) and even death.
Here are the things I’ve observed on various occasions by some nurses while accessing my port over the last several weeks
Visit X, Nurse X: The RN placed the needle into my port to draw out blood to qualify me for my chemotherapy. After the needle was placed into my implanted port, the access port on the end of the tubing was NOT swabbed before connecting the saline syringe to flush the line and draw out blood. I caught this as she was about to screw on the syringe, and said “don’t you want to swab that first?” Answer: “Oh yeah, sorry”.
Then it was time for chemo. The RN hooked up an IV bag with saline. She unscrewed the capped line, swabbed it, and then left it for a minute or so hanging on my flannel shirt, which although was washed at home, is not sterile. She then picked up the injection port to connect the syringe containing my antiemetic (anti-nausea drug), and screwed it onto the access port without swabbing the port that was hanging on my shirt. Unfortunately, the needle into my access port was not properly placed when drawing my blood, so she couldn’t push in the anti-emetic. She said, “I’m going to have to access the port again with another needle. She unscrewed the syringe containing anti-emetic, did not cap the end, and placed it on top of an unsterile infusion pump. Then she prepared to access the port with a new needle. After it was placed, she attempted to flush it with saline, and it was not working. She then informed me that she’d have to try again. So, she removed the needle – I’m watching the whole time. The needle of course had some blood on it because she just pulled it out. Then she said “1-2…” I stopped her and said, “what are your doing?” Her answer, I’m putting the needle back in. I said, “no you aren’t, that needle is no longer sterile”. Remember discussion above – there is staphylococcus epidermidis that grows naturally on the skin – that staph loves to grow on catheters and heart valves. She went to get a new needle. In the meantime, another nurse walks by and sees the mess of supplies on my tray and asked if everything is okay. It was at this point that I asked for the second nurse to grab my antiemetic syringe from the top of the pump and please cap it with a sterile cap – she did that for me. The first nurse retuned, swabbed down the skin above my access port with what I’m guessing was chlorhexidine antiseptic, and then without allowing it to dry, stuck in the needle (okay, that stung and should have dried for maximum antibacterial effect). So, my port was accessed three times in less than an hour – that alone increases the risk of a central line catheter infection.
In a previous visit for a day-3 disconnect of my home lemon infuser, the procedure more specific than outlined above would be: 1. Clamp off tubing; 2. Unscrew ambulatory pump tubing; 3. Swab the port on the end of IV line; inject 10mL of normal saline; inject 5mL of low dose heparin; 4. Remove needle from port; 5. Place on small Bandaide over the port that’s beneath this skin. Simple, right? I can do this at home. But, what happened on this day? The nurse first peeled off the dressing that holds down the needle on top of the port, then said “okay ready, 1-2…” “WAIT” I said. Aren’t you going to flush the line with normal saline and heparin before you remove the needle?” Answer, “Oh, my bad, thanks for reminding me.” Had I not been paying attention, she would have to place in a new needle just to flush the line to keep it from clotting until my next chemo in two weeks, another infectious risk. Here is a 4-minute video of this simple procedure to flush the line and remove the needle – I promise it isn’t gory.
I know for non-medical readers, this is a lot to follow, but the background was necessary to understand me next hurdle, which might result in me changing oncology practices.
As mentioned in a previous post, I wish to do the disconnect on my ambulatory pump (lemon infuser) at home chemo day-3, flush the line, and pull out the needle. I included 3 photos to give you an idea of size and how the volume becomes depleted over 46-hours (in my truck, just prior to disconnect is last photo). I’m certain I’m more competent than what you read above. It literally should take two minutes. I have no problem going to the clinic when in town, but since I’m very active and traveling for work and pleasure, and since air travel is so unreliable these days, I’d like to have this option. Dr. Onc is not opposed and asked a very intuitive and important question; “Would flying at high altitudes affect the infusion pump rate in terms of the amount infused out of this balloon pump pictured above?” For clarification, 2-day’s worth of medication is injected into a balloon that is contained within the “lemon” infuser; as the hours go by, the balloon collapses – the infusion rate is controlled by a valve/filter on the tubing. Dr. On also asked, will they let you take it on a plane connected to you?”
LESSON: The answer to the first question is NO, since the plane cabin is pressurized, the infusion rate in the ambulatory balloon pump is not affected, unless we were in a downward swirl about to crash and we lost cabin pressure – in that case, it probably wouldn’t matter. For you pharmacists, if I was hiking in the Alps, it would matter because the infusion rate is based on atmospheric pressure and temperature. Notwithstanding, I get 5-FU 720mg IV push all at once on day-1 of chemo, and the 1440mg (720mg x 2 days) over 46 hours at home by this little infuser. So even if I hiked the Alps and the infusion rate increased (for this particular drug), no biggy except maybe some nausea because a slow infusion of 5-FU over 2-days doesn’t generally require antiemetics.
COULD THIS SQUABBLE LEAD TO SEPARATION FROM MY ONCOLOGY GROUP?
Dr. Onc did follow up as promised and asked the administrative staff about allowing me to do my own disconnect at home. As many of my colleagues anticipated, they refused. I will give them this – when I arrived for my pump disconnect on 12/1, an administrator met me in the waiting area after discussing the situation with me by phone the previous day. She took me to a private area and was very nice and understanding, but she was unable to give me a reason why this would not be allowed. She went so far as to check with other oncology groups that I might consider if I chose to leave the practice. In the end, she agreed to have the medical director call me to discuss my concerns and qualifications. The next day I received a call back from her informing me that the medical director did not wish to discuss this any further. But, I did learn the reasons why they would not allow me to do this on my own in order to enhance quality of life allowing me to travel for work or pleasure.
The issue was LIABILITY and NO PROCEDURES that allow a patient to do this. My reply? Simple! “How about we compromise?” I asked if it would be acceptable for my doctor to send a consult for in-home high tech infusion. These folks do in-home infusions all the time and train non-clinical patients to not only flush the port and remove the needle, but also to access their port with a needle (a more risky process). My discussion included that the home care company could document that I’m trained an comfortable, the Oncology group knows they are on call 24/7, and now the liability and policy issues are shifted to the home care company. That seemed to be a reasonable compromise. Let’s see if that happens and if it does, whether my insurance will cover it. I am reminded that the oncology practice mission includes, “… as a private, physician-owned practice, XYZ prides itself on working closely with each patient and family, creating a personalized treatment plan. Our team of physicians, nurses and cancer care specialists are with you every step of the way—providing information and support, so you can focus on treatment and healing.” Surely this is consistent with my request a “a personalized treatment plan” and providing information and support, so you can focus on treatment and healing. Literally minutes prior to posting this, I received a call from the home care agency. Good news, Dr. Onc sent in the consult request. Bad news? They won’t accept me – since they aren’t asked to administer any medications, they can’t make enough money – too bad we live in a profit driven healthcare system instead of patient-need driven society. Well, there are other agencies! STAY TUNED FOR THE OUTCOME ON THE NEXT POST!
CT RESULTS – HOW AM I DOING?
There are no changes from previous scans, no visible tumors, no lymph nodes, no metastasis, and as usual peritoneal tumors (if still there) cannot be seen. The oncologist is ecstatic on my progress and her/his anticipated findings (which you see above). I gained 7 pounds over three weeks and TG pushed me to my original weight. Dr. Onc didn’t have the results at my 11/29 visit, but they were available on the hospital portal for me to view. All blood work was within normal limits. I was delighted when my nurse had a typed note from Dr. Onc top read to me on my day-3 disconnect when she flushed my line and removed the needle (2-minutes for procedure) with the findings – KUDOS Dr. Onc for following up in a timely manner!
I hope you all learned some lessons here on payments, sterility, central IV access, compromise, and practicality. Until next timer, over and out!
Comments are enthusiastically welcomed. I love receiving comments of various social media sites (Facebook, Linkedin, Twitter), but please also paste those comments on here if you have time! Many thanks and congratulations (and thank you) if you made it through this entire post!
17 thoughts on “DOCing at the Port versus Strong Waves of Resistance in a Sea of Lemonade”
Jeff, I’m so glad your scans showed no progression. I’m sorry you have to deal not only with this illness, but the ineptness of the health care system and providers.
I can’t help to think of the unassuming mistreatment the average layperson who doesn’t have your medical expertise might be experiencing. I use to work for a medical simulation company who would retrained medical staff. The number of nurses and doctors that were sent there due to unsanitary practices and the inability to correctly measure medication is astounding!
Keep up the good work! Wishing you and your lovely family the best. I look forward to the next chapter of the Lemon infused Doc!
Thank you Liz! So nice hearing from you!!!
Jeff- clear response to the protocol is fabulous. As for having a safe management of your port, it’s a travesty. We had similar issues with animals in research. Implantation of ports, Maintenance of the access site, infusions and finally clean up.
I would recommend you considering having the checklist on paper and in hand. Provide this to the attending nurses and have them check-off prior to any infusion. Please include a list of the prep materials, infusion and post administration cleanup. All to be present before the procedure is initiated.
While the above may appear to some professionals unnecessary, others may accept this level of required detail and even consider adding this to their routine (for others). Either way, flannel is not sterile and uncapped needles are not either! Prep of the port site and maintenance of the port line are as important as the infusion rate.
Of course you know all this, however also consider getting your better half to attend one of these infusions and advocate with you for a checklist requirement…
Thank you Nina!
Hi Jeff, so happy to hear the great news on your progress! Wishing you much continued success! Thank you for your insightful trials and tribulations with your treatment. I am in shock over the sterility issue with some nurses not knowing what the hell they’re doing! I never would have even thought that this could be an issue! So true about our health care says being all profit driven too. It’s sickening. Love, your cousin Amie
The maze that patients have to navigate on a daily basis is so frustrating. We spend a great deal of time navigating for our patients the insane billing, prior approvals etc. The system is severely flawed.
So glad to hear about your Scans and seeing your family grow.
I have recently received reports about infusion centers and the terrible lack of protocol and procedure with lay patients having to stop the procedure due to lack of sterility
I’m sure you could do a far better job wherever you may be. Let me know if there is anything I can do to help .
Hi Roberta. Maybe there is something you can help with. Do you know if the Eddy Homecare would accept a case like mine?
Dang, Jeff. This is hard to read, not the science for me, but the callous and cavalier treatment you’ve been subject to. The sloppy technique is egregious. It shouldn’t be this difficult to access competent, compassionate, humane care. Here’s hoping you find providers who remember you’re a person, one they should be gratified to have as a partner in your care.
My understanding is a long as pay anything(as low as you need it ) medical bills can’t touch you.We had a great deal of medical bills, and I kept paying what I could. Bills got paid, only to be replaced by new ones. But we stayed a float . .Brian is on VA home care and that has decreased our bill quite a bit.
Thrilled you are doing well—but what a freaking hassle to have to go through!
When my sister-in-law was going thru chemo, I was equally horrified at central line technique. Great opportunity for annual competencies I guess.
You are a better person than I am. I’d have disconnected everything on my own and apologized later (maybe). Happy to hear that nothing new has popped up and you are doing fabulous!
Me too! I wouldn’t have even asked for permission. I’m certain my technique (and Jeff’s) is better than the ones described here!
Great blog as usual! I’m very surprised and disappointed that the oncology nurses are so cavalier about accessing and flushing your port. I haven’t accesed a port in many years but I could do better than that! I’m glad that you had a great Thanksgiving weekend. Happy Hanukkah to you and the family. I’m still working on getting out my cards.❤️
We are so happy that you’re doing so well and scans continue to show no disease progression. Answered prayers…. And we are praying for all of you every night. Wishing you all a wonderful and joyous Holiday season. Much love to all of you. We miss the Fudin Family
I am learning SO much from you Jeff! While we have always told patients to be proactive, it can be intimidating unless it’s someone like you who is so well educated and well spoken…(although I wish I could be a fly on the wall whenever you speak with anyone over there, or on the phone)…Robin kinda filled us in a bit but nothing like your words which really have had an impact. Keep on truckin’!!! And please put all of this in a book!!! SUCH valuable information!!! Thank you!!
Our sterility problem at one of the so called hospitals in Illinois was the nurse who never changed her gloves from patient to patient. I would remind her and my wife did the same.
God only knows how many infections she passed around.