Health and wellness

A Miracle

I’m not religious, so I would normally not choose such a word. And I’m a scientist by training, so I’m generally suspicious of anything other people call miraculous. But given the circumstance, I have not a better word for what we witnessed yesterday.

Not able to walk by herself, nor to stand, nor to sit, nor to turn her head around, my wife got to Dr. Yali Li’s clinic with a set of Meniere’s symptoms: vertigo (not the worst this time, but more long lasting), headache, fullness of the ears, tinnitus. In other words, a complete package of misery.

She had the first, and the worst, vertigo about three weeks ago. We went to the emergency department of Stony Brook Hospital. She was given a bunch of medication, which we were told would be able to treat the symptoms. There is no treatment to the disease—she’s suspected to have Meniere’s.

In the following weeks we learned about Meniere’s Disease. Basically, if you’ve got this list of symptoms, and there is no known cause (such as a stroke), they would attribute (blame) it to the French physician Prosper Ménière. He’s the first one to group these symptoms together—something in the inner ear is messed up, causing all these symptoms. And soon enough, we got kind of confirmation: her head MRI scan came back normal, so were her Halter test measuring the heart.

Back at the clinic, the receptionist asked us to sit down. It’s hard for her to sit. There were not good chairs there, only a long bench that could easily sit ten. But there were only the two of us. She prefers her head to be horizontal—in the vertical orientation the head tunes in more closely to the attitude signals from the ears, signals which are of course completely misinformation in someone with Meniere’s. So she leans back, and her head banged against the wall—her eyes were shut and she didn’t guess the distance to the wall correctly. Then the single long cushion covering the bench started to slide down to the floor. I caught it in time.

She’s not under many drugs at that moment. From the various doctors, ER, primary care, ENT, we got about eight different drugs. The drugs all come with horrible side effects. Dizziness, light-headedness, low blood pressure (systolic, the high number, being lower than 90 at some point), tinkling hands, stomach discomfort, etc.

After filling out the forms for first time patient—I did it, as she, with her face skyward, and eyes shut, was in no shape to do it herself, a nice lady (Dr. Zheng) came over to ask us whether she could go to the office for a short interview, or would rather go to lie down in the treatment room directly. We chose the only option feasible. Shortly after, Dr. Li came in, together with Dr. Zheng. He has a large frame, but not over weight. His handshake is powerful—probably from the massages that are part of the traditional Chinese medicine. Yes, they can treat her, he assured us.

We heard of Dr. Li by way of my oncologist, Dr. Lan. It just happened that my regular appointment with him was on the day before, and I mentioned her condition. We gave a lot of weight to his recommendation, especially when most doctors tell us plainly there were no cure, and no good treatment. And the online literature says the same. The best hope we could get there is that often the symptoms would lessen, and with time they could completely disappear.

While the sign on the outside of the clinic indicates that he has a PhD and an MD, Dr. Li is trained partly in China, where the education necessarily includes western as well as Chinese medicine. But his practice specialty is Chinese medicine. And we can see why.

After about a minute, in which time he put some five acupuncture needles into her scalp, he asked my wife to sit up. She couldn’t believe she could do it herself, and asked for my help. She was not able to sit up, or stand up, when coming into the clinic. At home, to avoid making a couple of extra turns, she even chose to get into the back seat of my van instead of the passenger seat. But now, after sitting up, she kept her eyes open, and felt okay. She then came down the bed by herself, walked a few steps, and even moved her head around, up and down, left and right, under Dr. Li’s encouragement. She even stood unaided for several minutes!

A treatment of one minute! One minute! With no drugs! And no side effects!

Sitting pic.
Sitting up with needles in her scalp, she had her eyes wide open, and a big smile on her face.

In time, several more needles were inserted into her scalp. And her attitude sensation was steady. Now her main complaint is the sense of fullness in the ears and head, which apparently couldn’t be treated by acupuncture, or at least not at the moment.

Dr. Li told us that the illness can be cured in two to three treatments. That’s even more amazing. We were only looking for ways to relieve the symptoms without the terrible side effects. We were not even dreaming of a cure. And like a truly Chinese trained doctor, he claims that he is nothing special—any Chinese doctor could do the same.

We left in about an hour. She had ten needles left in her scalp, to be removed by me at home. One day later, she is worse than yesterday right after the treatment, but is still much better than before.

According to the NIH, there is no cure to Meniere’s. And acupuncture is not proven effective in treating the disease.

Jeena’s Story

This is copied from two of my postings at It is copied here because LightTheNight seems to be temporary, and my posts disappear some time in the spring of each year. The originals were posted on Sept. 6, 2011.

My sincere thanks to all of you who have given me encouragement, either through moral support or through donations to LLS.

Often, upon learning of my predicament of having a treatment but not a cure, one friend or another is astounded that I was resigned to live with it. Is there no cure? I say, yes, there is. It’s called Stem-Cell Transplant (SCT). But why am I not pursuing it? Well, it’s complicated…

Let me introduce you to Jeena (pseudonym). She’s middle age, married, with children. Earlier this year, she was diagnosed with AML, a different type of leukemia. The first letter of AML stand for Acute; this contrast that of CML (my type), for chronic. AML is more serious, more aggressive.

A mutual friend introduced her to me. Since the leukemia type is very different, I’m not at all familiar with AML’s treatment regiments and prognosis. I introduced Jeena to a bunch of websites, including the main site of Leukemia and Lymphoma Society, and its BBS, where a lot of patients congregate and share their stories and experiences. Unlike medical professionals, patients don’t hold back when they discuss their understandings and their issues, with their illnesses or their treatments. But Jeena doesn’t have the time or patience to read through all that. So I help her to dig for information.

Time is of the essence. Her doctor pressed her to start chemo ASAP. I encouraged her to brace herself, and go for it. But it didn’t turn out well. Chemotherapy, the traditional kind, relies on the drugs killing the faster growing cells more than the slower growing ones, in the hope that the faster growing cells are more likely to be cancer cells. But the drugs are poisonous to normal cells as well. In her case, the chemo sessions did not significantly bring down her white blood cell (WBC) count, although she did suffer from the side effects. After a few sessions, the chemotherapy was stopped.

Fortunately Jeena’s Cancer Center is participating in a clinical trial, and she signed up with it, after a couple of weeks of recuperation from the chemo. This was her best hope, and it delivered. Her WBC came down. The problem is, her neutrophil (one subtype of white blood cell) level was by now very low, making her vulnerable to infection. And what I worried about, I told her, was that there was no follow-up regiment. If (or more likely, when) the leukemia comes back, there was nothing else to try. So we discuss SCT.

SCT is the modern variation of bone-marrow transplant (BMT). In this treatment, the patient’s white-cell making stem-cells are killed off, through a combination of chemo and radiation. Donor stem cells are introduced, which eventually take hold in the patient’s body and repopulate it with white cells. The new white cells contain the donor’s DNA, and would find any leftover white-cell from the patient to be foreign and kill it. This is called the Graft-vs.-Leukemia (GVL) effect, which brings about a cure. One can also have a SCT from her-/himself. But because the stem-cells are one’s own, it could not cause the GVL effect.

To get a SCT, the first step is to find a good matching donor. The better matched the donor is, the better the prognosis. But the SCT donors are very limited, and Jeena wasn’t able to get a good match in the short time frame she had. Fortunately a couple of close matches were found with cord blood. (I’m not sure how this works—I thought usually cord blood is banked for the baby to use after s/he grows up.) Both were needed because the amount of stem cells in cord blood, although in much higher concentration than in adult’s blood, is limited due to the limited volume of the cord blood.

The next questions are when and where to do the SCT. One of the best cancer centers for SCT, or most other treatments, is Sloan-Kettering Memorial Hospital in New York City. Jeena very much wanted to do it there, partly because the center she’s using had had several issues in her treatment alone; I promised her that I’d go to meet her in New York City if she was to come for treatment. But Sloan-Kettering is in such a high demand that she had to wait for several months before they can operate on her. Yet she might not be able to wait.

You see, to be able to even start SCT, the patient must be in some relatively stable condition, such as in a remission. If Jeena’s leukemia comes back, there may not be another opportunity to do this. I’m usually not a big risk taker, but I encouraged her to go for it. The center is not her choice (it’s close to her home, but not of the reputation that she’d like to have), the match is not perfect, but the opportunity could be once in a life time. Literally.

She went for it. I don’t know if my discussions with her played any role in her decision.

Chemo and radiation treatment to kill off all her bone marrow took two weeks. She’s super-critical now. No defenses against infection. Isolation ward. The only people sharing her ward were those in similar plight, those without defenses. SCT. After about one week, it was found that at least some of the transplanted stem cells took hold. These were from one of the two sets of donor cord blood. This I guess is expected. When one set of the stem cells got successfully grafted, their progenies, the fully functional white blood cells, would kill off the other set of stem cells and all their progenies—as well as all of the leftover host stem cells or white blood cells.

Once the transplanted stem cells took hold, and Jeena’s white blood cell count recovered to near normal ranges (actually doctors care more about neutrophil count), she was discharged from the hospital. Hooray! But by now she started to experience the onslaught of Graft-vs.-Host Disease (GVHD).

GVHD is when the newly introduced white blood cells starting to attack the patient—think a newly imported army, which by instinct recognizes all local citizenry as foreign enemy, and starts to attack them. Her symptoms include high blood pressure (her diastolic pressure, the low number, is over 100), swollen neck, and upset stomach. These symptoms, although severe, are not unexpected, and are manageable. Jeena’s doctor prescribed heavy-duty steroid to tame down the GVHD, which unfortunately comes with the side effect of lowering her immunity.

So this is still a critical period. Jeena’s steroid is being gradually dialed down, as long as her GVHD does not flare up. But this cannot be done too slowly, otherwise her immunity is suppressed, and she’s in danger of succumbing to common infections that do not affect you or me. The use of steroid for immune suppression may be a life-long commitment. But that would only be a bad side-effect of a good treatment: a long(er) life is a precious gift.

So we celebrate, one step at a time.

ps: Your donation dollars at work. When I first saw the research published on main stream media, how I wished that the work was funded by LLS. Now I’m so relieved that it was.

pps: As of late August, Jeena’s condition is still improving. She now suspects that she’s not actually suffering from GVHD, but from an alergic reaction to her antibiotic medication. (She’s on immunosuppressant drugs, and at the same time on antibiotics as well as anti-viral drugs.) Hopefully the reactions will lessen with time, especially when she’s weaned of her meds.

Third Time’s a Charm? (Or how much blood for one test)

As I mentioned in an earlier entry, we were being charged hundreds of dollars for a blood test at the University’s Cancer Center. So we got our latest blood test done at an outside lab. Many trouble ensued. I called my oncologist’s office many times, but they did not get the results. The doctor’s visit was postponed by a week. Then still more phone calls were made to ensure that the report was there. Then on the day of my visit, the doctor looked at the report, and couldn’t make anything out of it!

As I also mentioned in the previous blog entry, the test for this cancer has not been standardized. Not only the format of the report from the outside lab different, the test was done with a different control gene. This made the test not comparable with the ones I had in the past. So the doctor asked me to get another blood test done, this time at the same Cancer Center Lab. It’s fortunate that we got a verbal commitment that my insurance coverage would be processed as in-network.

A week later, when I called the doctor’s office to get my blood test results, her secretary found out that there was none! Somehow, the test request was simply never input into the computer, and the blood sample they took did get analyzed at all! You’d think somebody would be asking questions about a blood sample that was drawn for no apparent reason, wouldn’t you?

Any way, a third blood sample was drawn for this doctor’s visit and I hope all will turn out well.

In the mean time, we got good news (sort of) from the University Hospital. 14 groups of physicians have signed multi-year contracts with the insurance company; out of these, 3 of them rescinded their termination with the insurance. The pathology group, which caused our decision to get the lab results from outside of the University, was in the process of doing so. Let’s hope that not too many patients’ health interest is hurt in the interim.

Upon receiving the notice, however, we got some new worries. My oncologist is not obviously in one of the 14 groups of physicians.

As the Road Turns

More insurance coverage twists and turns


For a while it looked like we were getting nowhere. A few representatives from our insurance company said there was nothing they could do. A representative for the University Hospital exhausted all her attempts to help us. And a representative for the pathologists group informed us that regulations do not allow them to give us any breaks. There was still one more representative for the Hospital who did not completely give up, but his effort to get a higher-level involvement from the insurance company did not successfully connect us.


Then, the representative from the pathologists group called. It turned out his group could reprocess the claims through the insurance company in a way that would not require us to pay. The reasons he gave, relating to the insurance company hated the fact that they would end up paying more for the same treatments when their group went independent, and relating to the group of doctors should be considered providing services through the Hospital when the work is thus rendered, were somewhat opaque to us. I wonder whether the email I sent to a widely-followed blog the night before added some oblique push for a different resolution (I never got any follow up to the email).


In the mean time, I’ve already had my latest blood test done in an outside lab. The upside is that I’m pretty sure (now how much is that worth?) that I would not be asked to pay more than a predetermined co-pay. The downsides are a few.


First, when I went to get my blood drawn, the person could not understand the prescription. Not that it is hard to read, I assure you, as it is written in one of the neatest handwritings I’ve seen. It’s the acronym of the oncogene that is too hard to decipher, even after a phone call to someone she trusts. I was glad that I know this stuff, and explained to her the gist of BCR-ABL in two minutes. Equipped with the info about chromosome 9-22 translocation, the code for the blood test was eventually found, after another phone call.


Then, one day before my scheduled visit to see my oncologist earlier this week, we found that the test results were not yet available. The visit was then rescheduled to a week later, for the 16th of September.


Unfortunately, serendipity has it that September 16th is a day on the other side of a virtual line in the sand along the river of time, where we could get into insurance coverage trouble yet again in another saga.


A couple of months ago, our insurance company sent us a letter notifying us that its contract with the University Hospital was likely to lapse, and any treatment we get from the hospital may be billed as out-of-network. When we called, the university’s representative was very adamant: they strongly believed that the contract would be renewed in time, and they believe the insurance company sent the letters solely to cause fear and uncertainty in the community, and to apply extra pressure to the contract negotiation process.


Alas, the contract was not renewed in time, and when we called before my previously scheduled doctor’s visit, we were told by the hospital that a temporary contract was in force for the time being, until September 15th.


So now we are uncertain on two fronts: we don’t know whether the doctor will be getting the correct test results in time, and we don’t know if we see our doctor on the 16th our visit will be covered by the insurance plan.


Would anything in the healthcare reform plans being discussed help our situation?

The Plot Thickens (Or Know Your Doctors, Even If You Cannot)

To recap from the previous posting, we are being charged thousands of dollars for services we made use of in the past, retroactively, by a group of physicians we didn’t know existed.

This is turning into a real-life Catch-22. Innocence is no excuse for not paying.

We talked with a representative of the Pathologist group. He claimed that they did not have any responsibility in informing us of their withdrawal from the insurance plan. It’s the insurance company who’s responsible in informing us.

We also talked with a couple of representatives from the insurance company, who informed us that it is our responsibility to verify that the doctors whose services we use still belong to the insurance plan.

Do you see the problem (the catch) here? The problem is that we don’t ever meet any of the doctors in question; we didn’t even know they existed until this latest episode. To us, there are people who process the blood and bone marrow samples from us, but those people are part and parcel of the lab service that we make use of. How can we know that a hitherto anonymous group of people dropped out of our health plan? Are we, the patients, required to have god-like powers?

The Best Healthcare in the World?

Imagine that you bought a premium all-inclusive tour
package, and a few months after the trip, you got a bill from the Chefs Group,
claiming that they are now an independent entity, and must be paid separately and in addition to what you’ve already paid.
Would you be surprised? Annoyed? Or would you be using even stronger words or
non-verbal expressions?

Well, essentially the same just happened to us, in the
setting of health care!

I was diagnosed with a type of leukemia more than two years
ago, at a local university hospital. Fortunately, with a new kind of medicine,
the disease is well under control in short order, and has been basically in
check ever since, with occasional ups and downs. Unfortunately, we learned that
there is no uniform way of performing blood tests and keeping track of the
progress of the disease, so we have decided to pay about twice the insurance
co-pay, $35 instead of $18, for the privilege to keep using the university
hospital’s diagnostic testing facilities, instead of an outside lab, so that
the tests are at least longitudinally comparable. And we are very careful to
maintain our health insurance, keeping the options the same from year to year.

However, recently, after going through the routine for
dozens of tests, we got a bill from a “Pathologists Group”. Upon inquiries, I
was told that they’ve decided to no longer accept our insurance, and would now bill
us directly. So all of a sudden, in addition to the $35 to the hospital for
taking my blood and bone marrow samples, I must pay hundreds of dollars, and
maybe more, to those who analyze the same samples! On top of that, for about
half a year neither the doctors’ group nor the hospital told us about this
change, even while I was using their facilities once every several weeks! After
talking to someone representing the group for the first seemingly erroneous
bill, I now understand that for each visit two or three bills are generated
from the group, with most of them still unseen to us. From the couple of bills I’ve
seen so far, I fear that unknowingly I have become indebted to them to the tune
of several thousand of dollars!

I can understand the physicians who want to be paid better. I
owe my life to the physicians who diagnosed me, treated me, and to those whose
research brought the treatment to patients like me. And I’m ready to pay with
both my gratitude and my money (including insurance money) for their work. But something
in this new system is wrong. For one thing, where in this change of billing is
any consideration for the patient, either in its rationale, its process, or its
communications? Assuming it is legal, how can it be ethical to have different
groups of professionals in a hospital to start charging patients separately? Should
I start to develop a check list of medical and service professionals working
for the hospital for each of my visits, in case some other group becomes
independent in the future?

I cannot wait for President Obama’s health reform to take effect. Our
healthcare system seems to be crumbling down, even if it were the best.