Last week my wife and best friend, Elaine, had massive abdominal surgery. We fully expected her to be an inpatient for a week, but she was home in four and half days. To watch her recover was to see what happens when everything converges: the deep knowledge and skills of excellent, humane physicians; a capable, caring clinical staff; wonderful new technologies; and a lifetime of eating right, being fit and tending to one’s health.
She lost two units of blood during the operation. It was four days before she’d be allowed any fluids by mouth, except ice chips, and 5 days before she’d have any food, which started with broth and Jell-O.
But the day following surgery, she moved from her bed to a chair and sat vertically for an hour! Twice! The first time she was dreadfully nauseous. The second time was better.
The second day, she circumnavigated the rectangular halls of the floor – probably an eighth of a mile – twice!
Several things made all this possible. One was the good judgment of her physician team, that did not assume that all was well, and methodically explored until they discovered the deeper problem. In this case, if they had waited, the damage would have been much more significant and the outcome much worse.
Another was great technologies that non-clinicians do not often see and typically aren’t aware of. For example, just before surgery, Elaine’s anesthesiologist explained that, in addition to the anesthesia during surgery, an epidural block could provide significantly better post-operative pain management than a general anesthetic, while allowing the brain to remain clear.
She agreed and the results were astounding. Even after this traumatic procedure, with an 8 inch traditional incision that goes down the center of her belly, she told a nurse the day following surgery that her pain was “1” on a 10 point scale. And she proved it in her flexibility in the following days. The elimination of pain and the stresses it creates as barriers to recovery are beyond value, and miraculous advances in medicine.
And then there are simple advances that make care dramatically better. Elaine was bedridden, so she was fitted with pneumatic leggings that go around the calves, and massaged the muscles in different rhythmic patterns. This prevented clotting and helped preserve muscle tone, which speeded total recovery.
There is Elaine the patient, who has eaten carefully, worked to be fit and nurtured her own health as a lifestyle for her entire life. When confronted with a difficult situation, her body responded overwhelmingly in her favor. It was clearly payback time, with an incalculable reward.
And finally, none of this would have been possible without wonderful resources like Baptist Health System here in Jacksonville, FL, with its great patient care, overseen by a truly top tier quality officer, Keith Stein MD. This kind of care is available nearly everywhere in the country, and its important not to take it for granted.
In a time that is so cynical, we should celebrate when things work so well. This is not to ignore flaws. As many of you know, I spend plenty of time focused on those.
Elaine and I had a tough week, but it’s worth remembering and being grateful for the fact that our this process was about solutions. And that her care resulted from the cumulative contributions of many important but different sources, allowing a woman ravaged by a disease to succeed beyond our wildest imaginings.
Brian Klepper is a health care analyst based in Northeast Florida.
Categories: Uncategorized
Thank you for sharing your story and all the different elements that can come together to help stack the deck in our favor. It brought back memories of my own experience and of others that I know and helped re-orient me towards the side of “what can we do” versus the side of cynicism. We are cheering for Elaine from Wisconsin!
Best wishes and all my prayers…..
Thank you for the detail Brian. Hoping all is going well this Mother’s Day. Also hoping you find that plug and chug medical care is for the worried well such as your friends to whom you refer, and the e-patients Daves extraordinaire, Bevs, amd Gurs of the country.
Brian; Thanks for clarifying the diagnosis of primary peritoneal carcinoma; as a pathologist, I was wondering about that. Please do not hesitate to share your journey with us – anecdotal or not, we are still a community of support and care, and also we can all learn from your experiences.
Smart patient makes a good point and your response was well said. My thoughts and prayers are with you and your wife beset by this complex medical illness.
However, do you have all of the data, all of the radiographs and scans, consultant’s reports, progress notes, etc. as is being promoted by the Daves and others? Personally, I think you would be overwhelmed with it all and it would be a distraction from your mission.
Smart Patient,
It’s a great question. As regular readers know, Dr. Kibbe is my regular writing partner. I’m very good friends with and have tremendous respect for Vince Kuraitis, and am a huge fan of ePatient Dave, who has perhaps accomplished more than the rest of us combined.
The answer is yes and no. Elaine’s presentation was extremely unusual. Initially,she presented with pains around her navel which proved to be related to a constriction of her ureter (the tube that connects the kidney and the bladder). The ureter had been externally compromised by tissue growth associated with the tumor.
The tremendous surgery I described in the post above was actually the third procedure in a month. The first two were natural orifice explorations, one of the ureter and one of the vagina and uterus, that came up empty but pointed to the need for much more extensive exploration of the abdomen.
I believe that Elaine’s physician team – our internist, the urologic surgeon, the GYN oncologist, and the anesthesiologist – have all been exceptionally capable, open and communicative. They collaborated through the tools of the local health system and spoke frequently with each other about the case, and then they each spoke with us about their findings and about their approach.
Now, as we prepare for chemo-therapy, we’re entering a new, more challenging and murkier path. The performance of the first line chemo-therapy for ovarian cancer – this is actually peritoneal, but it behaves like and is treated like ovarian – is well documented and accepted internationally. But the long term statistics are still not so good.
The questions now related to genomics and personalized therapies, though the data on these approaches appear to be just now emerging. Our GYN Oncologist, who is active internationally and appears to be on very aware of the current science, has been extremely responsive to our questions and inquiries, and aware that we have reached out to our contacts around the country. The first thing he did was provide his personal email address so we can discuss any questions.
We have received a good deal of information, and will continue to gather and study everything that we can. Ultimately, we understand that we’ll be living with this 24 hours a day, but they our doctors and other clinicians will be focused on it only a few minutes at a time.
On the other hand, the patient-physician relationship is a balance. We seek out doctors because they are highly trained with specialized knowledge, and at some point we need to trust their judgement, while continually verifying their approach as best we can. As conditions become more complex and esoteric, this becomes both more complicated and more critical.
We feel fortunate because we believe our physicians are caring and highly capable. That said, we’re trying to understand as much about our options as we can.
Hope this is helpful. Thanks for asking.
EP Patient Dave with sidekick Kibbe above spoke of how diseased the medical care is and his needs to look over his data. Did you study your dear wife’s e record and remind the doctors what to do?
That may be so, Praetorius. All individual cases are fragmented anecdotes. But they also all have the potential to become the norm. In this case, a positive outcome was undergirded by many positive influences. Wouldn’t it be great if those influences converged more frequently that they typically do now?
Best wishes for a speedy recovery. However, and to
no offense, Blumenthal calls this a fragmented anecdote.
Deep thanks to all of you for your good wishes and support. Elaine’s recovery has been nothing short of terrific; we live just off a beautiful, wide, hard packed beach in NE Florida, and she’s been walking more than a mile each day there.
The real challenge will begin in a couple weeks with the chemotherapy: 8 cycles of 3 weeks each, so 6 months with all the attendant unpleasantness. But 70% of women respond by going into remission, though the tumors tend to recur in 1-3 years. So we have a long haul ahead of us. Still, she’s strong and positive, and the docs caught the problem relatively early, so we’re hoping for the best.
Thanks again for your concern.
Brian
It sounds very serious and maybe not yet over. I hope she is all right. God bless you both.
Not MD as HELL for this.
Very glad things went well for you and her, Brian. Having trained in the 70’s, I too am amazed at how aggressive they are now in getting patients up and moving so early. Even open heart patients go home in a few days. This, of course, has also minimized complications from staying in bed like pulmonary emboli, loss of strength leading to falls at home, etc.
Nice to celebrate something medicine has done right for once.
Congratulations. We hope doctors and other staff don’t get distracted by acromonious debate on healthcare and keep doing the great job. Also serves to say healthcare is not broke. Just a little expensive, wasteful and not available to all.
Congratulations!
I am so glad that health care reform passed so that millions of Americans will have decent coverage, offering them the chance for the kind of wonderful outcome that your wife had.
And I hope that the provisions in this new law meant to shorten the time between the development of new ideas and their widespread implementation will finally shorten the decades-long lag that costs thousands of people their lives or their health every year.
More Elaines!
Again, congratulations!
Brian- congrats and godspeed.
Sadly, this story will soon only be a historical document given the central planning changes we have to look forward to — doubt there are Randomized controlled trials showing that epidurals are worth the time, money, risk for abdominal surgery… or that anesthesiologists will be willing to do them for almost no pay, but lots of liability, in the future.
Please keep this archived so we can all show our children what health care in the US used to be like.