Just for the record, as the BW likes to say, here’s an up-to-date medical update.
My weight: In the wake of my lap-band surgery on May 31, I’ve lost a total of 105 pounds. From my top weight of 332, I now tip the scales at a much more manageable 228. It’s like not having to carry around a 100-pound person 24 hours every day.
My blood pressure was 110/75 last Friday.
My cholesterol was under 100 the last time I checked.
My diabetes has gone away. Although I have stopped taking all insulin and other diabetes drugs, my blood sugar levels remain perfect for a non-diabetic person. (A1C = 6.5)
I look and feel pretty good, I think. But I have to admit that there were moments during the past few weeks that I thought I might not make it to my birthday.
My leukemia has returned. But that was expected. I know CLL remissions aren’t forever. The disease is still incurable. But it can be managed for a long time with the proper care and attitude. And I’m very lucky to have a lot of both. Leukemia is easy. It’s the small infections – and bad medical advice that worry me at times.
I still have a chronic wound on my left shin that just refuses to heal or be diagnosed. At least that was true until last week. I now think we’ve turned the corner on this and it has begun to heal. I’ll be concentrating on that during the next few weeks.
Perhaps the following letter I sent to the administrator of the NYU’s Joint Disease Hospital will tell you what happened and save me regurgitating the whole episode again. (The actual names of the doctors have been removed for real and imagined legal reasons.)
March 16, 2009
Mr. David Dibner
Senior VP, NYUHJD Hospital Operations
301 East 17th Street
New York, NY 10003
Dear Mr. Dibner,
This note is being sent as an addendum to the Outpatient Programs Survey sent to Indiana. But I’d like to tell you about my experiences at NYUHJD during the past few weeks.
I like to think of myself as an informed patient who has learned to manage his own treatment during the past decade. Since I was diagnosed with type 2 Diabetes (1998) and Chronic Lymphocytic Leukemia (2003), I have chosen doctors affiliated with NYUMC to facilitate my treatment. Choosing Dr. K (endocrinology) and Dr. A (hematology / oncology) has been very satisfying to my family and me. This relationship was important to me in choosing Dr. F to perform gastric lap band surgery on me in May, 2008. Today I am 105 lbs lighter and free from diabetes thanks to my NYU experience.
Imagine how happy I was when, while researching doctors to treat a chronic wound on my left shin, I discovered that Dr. B, an expert in treating these wounds, was now affiliated with NYU. Imagine how disappointed I am after what happened next.
Even before I met Dr. B (at 3 pm on Feb. 20, 2009), my first experience with the doctor was to overhear him talk with an associate about an “operating room mortality” while standing outside the examination room where I waited. “I know you have to expect mortalities,” he said, “but …”
He walked into the room, took a quick look at my wound and quickly told me there was a “deep infection” that would have to be “abraded” during the first of a series of surgeries that might last six months to a year. He said there was a good chance the bone was involved in the infection. His Physician’s Assistant informed me the immediate therapy was to apply iodine soaked patches on the wound. As the first patch was being applied by an orderly, Dr. B reappeared and told me the iodine might “tingle or pop for a little while.” He then handed me his card, told me to call him on the phone at the hospital on Sunday “to talk,” and left.
Although everything I had read about chronic wounds said caregivers should quickly make sure to treat the patient’s pain to assure he would cooperate in treatments, none of my complaints about constant pain were addressed during my visit, and the doctor’s “tingle and pop” remark was the medical understatement of my year.
Our “talk” on Sunday was very short. Most of it involved the doctor trying to remember who I was. I asked him to call my endocrinologist and oncologist to tell them what was he was considering. He said he would.
All during the weekend, I felt uneasy about Dr. B’s proposed treatment. I called many of my friends in the medical profession and they all confessed to not understanding his approach. I even asked Dr. K, who I would -- and do -- trust with my life, to call Dr. B and tell me what her impressions were.
The pain from the iodine pads was considerable but I went ahead and applied the pads all week. The following Friday I visited the doctor again. Again, the receptionists and especially the orderlies all performed heroically. The RN who saw me prescribed Lidocaine patches to help with the pain from the iodine (“Put them on the wound for 12 hours, take them off and apply the iodine patch,” she said.)
Then a smiling Dr. B made a brief appearance. “Are we all happy here?” he asked.
I told him I was not happy, mainly because he had never returned Dr. K’s repeated calls during the week. “What’s her number?” he asked, pulling out his cell phone. I gave him her cell number, immediately got her on the phone and disappeared. About 45 minutes later, he told me he had spoken to her for a long time and had a much better idea of my medical “history” and my oft-stated desire to stay out of the hospital if at all possible.
“Two or three days -- two days, tops,” he promised about the surgery now suddenly scheduled for March 9. “He ordered me to get an MRI and pre-op tests during the week and said he would see me before the operation.
I still had my doubts and a nagging feeling something wasn’t right. “Can I ask you something?” I said. “Why haven’t you cultured the wound and started me on a wide-spectrum antibiotic?”
He said he needed a “deep biopsy” to get an accurate reading and somehow equated that with trying to avoid “indiscriminate use of antibiotics.”
I’ve spent half my life living that belief, long before it was accepted in the medical mainstream, I said, protesting: “But I’m infected now!” It didn’t make sense to me to wait trying antibiotics to control the infection. But before I could gather my thoughts, Dr. B had left.
Dr. Katz reported on her phone conversation with Dr. B. She said she understood my reluctance but didn’t think I had “any other options” but to go ahead with the surgery despite still feeling very uneasy.
I had the MRI Wednesday evening, March 4. The following day, I spoke to Dr. A who said he didn’t like the idea of starting such a surgical process because I was due for another round of chemotherapy to control my CLL. I asked him to speak to Dr. B, who still hadn’t contacted him. I then called Dr. B’s office and asked that they tell the doctor to return Dr. A’s calls. (I also had asked the RN to call me because the Lidocaine patches are not helping. When she called two days later she told me the directions she had given me were wrong and I should not put the patch directly over the wound.)
Dr. B and Dr. A finally talked late in the afternoon and Dr. A called me to report that Dr. B “was very insistent on going ahead with the surgery.” The MRI results still hadn’t been posted. Asked what I should do, Dr. A said I should postpone my pre-op physical and see him in the morning. The results were finally put into the computer system at 5:51 am on Friday. I saw Dr. A and he showed me the report. No bone involvement! Superficial cellulitis! No signs of any deep infections. Dr. A prescribed Levaquin and took a tissue sample to culture. Anticipating a round of chemotherapy, we scheduled a CAT-scan session for the following week.
By Sunday morning the pain was completely gone and the wound was making huge strides in healing itself. The culture came back as containing three different infectious organisms – enterobacter cloacae, paeudomonas aeruginosa and staphylococcus aureus – but all were responding to the Levaquin.
As you know, one thing all three germs have in common is that all are usually spread in hospitals. Whenever I think of how close I was to dangerous and needless surgery, I tense up.
One postscript: On Wednesday, Dr. B’s office called and asked if I wanted to reschedule the pre-ops and surgery. I asked if the doctor had seen the MRI report. “No, we don’t have it yet,” the secretary said.
“Let me get this clear,” I said. “The report was posted at 5:51 am last Friday and doctor still hasn’t seen it?”
“I guess I should print it out and fax it to him,” she said.
I guess so.
I am sorry this has gone on so long but I think it’s a cautionary story worth telling. I know how hard doctors work and how difficult their jobs are today and I am still proud to be an NYU patient and intend to be one for as long as possible.
If you do have any questions, please feel free to contact me. Thank you.
Yours truly,
Marc Kalech
I think all of this goes to prove what I said here a long time ago:
- Don't go in the hospital unless you absolutely have to.
- Learn about your disease and how to manage it -- even if it scares you.
- Take charge of your own care and treatment.
- Remember, you know as much -- or more -- than your doctor.
- Always! Always! Always, get a second -- or third -- opinion.
- Follow your instincts. Your informed, intelligent body probably knows more than anyone lese about what's wrong with you.
Happy Birthday. (And, please, many more.
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