My Big Fat Italian Microsurgery

The home team

2009-11-17T12:58:00.000-08:00

Within a week of our return to California Joanne met with her two local lymphedema therapists. This is our home team. They have both met Professore Campisi, so there feels some continuity of care.

Karen at Dominican Hospital's Lymphedema Clinic met him in Sydney at the International Society of Lymphology congress in September. Karen is amazing. She is a one-stop-shop of therapy, knowledge, garment fitting, advocacy, bureaucracy-clearing, and professional kindness. She's also the only person who has done accurate measurements of Joanne's leg before and after surgery. Rather than our volatile and subjective assessments, Karen has the numbers. The leg is smaller and softer.

Sonja, who you've already met if you're following this blog, is Joanne's massage therapist. She met Campisi while observing Joanne's microsurgery in Genoa. Her report of the surgery is here. Sonja does a great "manual lymph drainage", which is what they call the massage technique that encourages lymph flow. Sonja is easy to spend an hour with: relaxing conversation, good technique, one of the enjoyable therapies. Joanne sees Sonja once a week.

Joanne is a compliant patient, which is not the same as a patient patient or a non-complaining patient. I don't blame her as she follows her daily regime: an hour in the lymphapress in the morning, two hours in the evening, one before dinner and one after dinner. She has joined a sports club so she can follow Campisi's directive to "swim, swim, swim". She takes her medicines, applies her salves, and cinches up the full leg ReidSleeve onto her leg for sleep. Joanne takes ownership of her therapy. It is something about her midwestern work ethic. Non-compliance is also not an option with the Sicilian in Prof. Dr. Campisi.

She maintains her full work schedule, on east coast time, and wears compression hose almost constantly. One day she wants to be done with the machines, appliances, garments, the hours focused on her leg.

She has visited her medical doctor, not a lymphedema man at all, and had all of Prof. Campisi's prescriptions re-written to the American norm. I'm not sure there really is an American lymphedema man.

We are fortunate to have Karen's and Sonja's support, right here in our dinky town. (Less than one-quarter the size of Genoa!) As an outsider, though, it seems to me that their labors in the lymphedema field are under-appreciated by the larger medical culture. In fact, the state of the art in lymphedema medicine in the United States seems as retrograde as the unworkable Italian Internet I was disgusted by. If thirty to forty percent of breast cancer survivors, among others, are at risk for lymphedema, it is amazing that information and prevention are not part of normal medical practice here.

I go back to my slow health care post and wonder if the problem is medical, scientific, political, or economic.

Back to earth

2009-11-04T16:38:00.000-08:00

The return to La Selva was to soft greens and warm temperatures. Our transit time was 36 hours: one taxi, three trains, two planes, and a car. Genoa to Milan to Frankfurt to San Francisco to Monterey to La Selva.

When I told the local lady at our communal table at da Maria that we lived in the country, she dreaded our isolation. Fortunately my Italian wasn't up to telling her that I preferred that to having people to my left and right, front and rear, above and below me. All amidst 26 centuries of human dust and dander, and recent cigarette smoke.

Feeling soft ground beneath my feet reminded me that I had been pounding the lunar colored paving stones of Genoa too long. In fact, from a distance Genoa is the smeared grey stone color of the lunar surface. Hard, lifeless, alien, the New York of the 16th Century. Our home's rain-freshened soil was soft and breathed of life.

Back on earth we have regained perspective, moderating our highs of the "Judge only by the amazing results" posting and the lows of "Judge o.b.t.a. results part 2".

Our quick fix mentality has been moderated by the understanding that we have an opportunity in a chronic condition. Campisi offered the Italian version of "strike while the iron is hot" to describe the next six months. Compliant application of the lymphapants for three to five hours per day (five?!). Joanne has this machine. Swimming and other exercise. Slow release penicillin every two weeks and a diuretic every two days. At home the results of the lymphapants sessions are already clearly different and improved: a softer and reduced size leg. Really: I have seen this! We are chastened by our quick-fix exuberance but heartened by improvements that formerly non-responsive conservative treatments now bring. I look forward to the assessments of Joanne's therapists Karen and Sonja later this week.

Lymphoscintigraphy

2009-11-04T11:58:00.000-08:00

If I had had a better presence of mind while I was in the hospital, I would have had been less glowing in my report to Greg about my postsurgical peek of my leg. I could see my ankle bones and veins in my foot but my leg was still not back to normal. My fantasy was that I would return home with a dramatically reduced leg and give away all my lymphedema equipment.

Realistically, I knew this wasn't going to happen.

I wish I had the picture of my lymphoscintigraphy to post on this blog because it made so clear the situation with my leg. Lymphoscintigraphy is a diagnostic imaging test that pinpoints the lymphatic blockage. A radioactive tracer is injected in each leg between the big toe and in the heal. This tracer gives off gamma rays which a PET scanner reads to create an image of what the heck is going on. My pictures show the superficial lymphatics (the part of the lymph system just under your skin) in both legs working pretty well. I think all my efforts with compression, massage, laser, etc. probably helped to keep the superficial system working and kept my edema from getting way out of control.

The deep lymphatics, however, was a different story. The image of my left leg shows a strong lymphatic flow out of the left inguinal nodes. Think a strong spray of water coming out of a garden hose. In contrast the right side was blank. Dark. Nothing. Nada. So, for the past 6 six years lymphatic fluid traveling up my leg would get to these inguinal nodes, attempt to pass through, but the road was closed. Permanently.

When I saw these images I feared that Prof. Campisi would say "Sorry. These nodes are shot. There is nothing we can do."

What he said instead was: "This is just what we expected."

Back to why the postsurgical fantasy was just a fantasy. Lymphatic fluid is protein rich and when it doesn't travel through your body the way it's supposed to it gets thick and gluey. Post-surgery, I have a path for the fluid to travel. There is now a way out. But I still have six years' worth of the thick, gluey stuff that is going to take some time to work out.

Judge o.b.t.a. results, part 2

2009-10-31T02:51:00.000-07:00

Last night was the unbandaging. It could have been a movie from the 1930's, without the dramatic music, but still with the drama. At least for Joanne and me. And Campisi's studio is of an era. Ceiling fans, antique panelling, the ubiquitous genovese terrazzo flooring. Lilly was snipping and unwrapping as a professional, not feeling the drama at all.

For those not of the lympha-world, the bandages are compression bandages, a mummy-like wrap of the affected limb to encourage lymph flow.

This was the first complete unwrap since the hospital, when Joanne thought her right leg was the same size as her left, that her ankle bone protruded proudly, and that she saw veins in her foot for the first time in years. This was not the case last night. The leg seemed perhaps slightly smaller, but still big. The ankle bone was not an angle, but a bump, and it would be a strain to see a vein. Our shared word, later that evening, was "disappointment". This was not a miraculous quick fix.

On the positive side, the leg is much softer, no longer the taut drum skin that told Joanne something had to be done. The softness is encouraging: perhaps the remaining size is something that time and massage treatment can work away. Also on the positive side, the surgical wound is healing well. Corrado examined the wound, and kissed his fingers in that gesture to describe something beautiful, and applied new bandages.

Though the lymphatic-venous anastomoses technique is microsurgery, the surgical entry is quite large, perhaps eight to nine inches (21 cm), precisely at the junction of the leg and inguinal area. This does not seem to cause Joanne discomfort, as I thought it would. The entire procedure has been fairly pain free. The biggest discomfort was the enforced four days of bed rest and the intravenous drip at her wrist. The drip was removed after the second day.

Thursday evening Prof. Campisi outlined an extensive drug therapy for the next six months, mostly penicillin and diuretics that Joanne will describe, recommended "swimming, swimming, swimming", and made me promise on the bald brass pate of, I presume, Saint Francis that we would return in six months for a week of follow-up. I summoned my mature manly manliness and managed not to cry.

Joanne is up the hill at via Assarotti getting her last Saturday treatment for this round. We will meet there again with Prof. Campisi at 6:30 pm for a final briefing and six month release.

Tomorrow, Sunday, we will look at a couple of promising B&Bs for our May return. In the evening we will board the "Treno Germania Notte". It's an eleven hour trip that gets us into Frankfurt around 6am. Then zum Flughafen and then the big freedom bird back to gli stati.

The chamber maid has come and I've moved to the living room, actually a part of the Hotel Cairoli lobby, to give her space to work. She is from Nigeria, and is pretty and nice. In Genoa the most frequently heard speakers of English are Nigerians, identifiable by their accent. In addition to their work motivation and gratitude for opportunity, they bring this language skill to the job market. On one bus ride to the Villa Montallegro a Nigerian woman was talking on her cell to what sounded like a sister back in Nigeria. The repeated response to what she was hearing was "I'm sorry for your life". "I'm sorry for your life."

Casa di Cura Villa Montallegro

2009-10-26T09:53:00.000-07:00

I've experienced three hospitals so far in my life. Villa Montallegro is, by far, the nicest. All private rooms, dark and quiet at night, pretty decent food, each meal presented on a white linen cloth with an entire complement of flatwear.

This is not where the ordinary Italian using the national health system goes for their lymphatic surgery. They're at San Martino, in shared rooms and wards. Foreigners will pay the same rate at San Martino as at Montallegro, so why not go first class? Wait... What did she say??? The ordinary Italian has access to lymphatic surgery??

Yes. This is what I learned in a conversation with Prof. Dott. Francesco Bocarrdo. The same team that performed my surgery at the private Villa Montallegro also does 4 lymphatic surgeries a week at San Martino, the public hospital associated with the University of Genoa.

Private patients come from around the world, and have included at least one US physician. Yesterday at the clinic I met the daughter of the first Chinese client. Most foreigners will follow the same private and public mix that we have, pay full rate, but it will still be less expensive in raw terms than in the United States.

Bocarrdo went on to tell me that other doctors within Italy are also performing LVA (lymphatic-venous anastomoses), although many are still using a lymphatic-venous connection technique that the Campisi team stopped using years ago. Campisi's newer connection technique is less likely to fail. I like that.

So, if LVA surgery in several forms is available so widely in Italy, why does no one in the US perform the procedure? Dr. Boccardo could not really say why. He speculated that some of this has to do with the general lack of focus on the lymphatic system by the medical community. Part of it is due to a lack of funding for lymphatic research. But Dr. Boccardo said that these days he is finding more receptivity to their LVA technique in the US than in many parts of Europe.

Here's an interesting bit of history-- while the venous and lymphatic system were discovered at roughly the same time, the lymphatic system is so delicate that it basically disappears at death. It could not be studied on cadavers.

Dr. Boccardo also told me that in their experience the sooner LVA is done after lymph node dissection, the greater the success of the surgery. Less time is needed in compression bandages before surgery and less time after surgery. Maybe when Campisi and Boccardo can demonstrate that preventive LVA after lymph node dissection has merit, it will begin to be performed in the US.

Sonja's eyewitness account of the LVA microsurgery

2009-10-26T06:21:00.000-07:00

We were very glad to get Sonya's email, and shed a few tears of thanks while reading it. Joanne is out of the hospital. We walked slowly to da Maria for lunch. Wonderful home-style food and friendly locals! Joanne is napping now. Here is Sonja's account:

Joanne’s Big Fat Italian Microsurgery

First and foremost I’d like to thank Joanne and Greg for giving me this wonderful opportunity! Being under anaesthesia, being operated on, the uneasy phases before going into and after coming out of anaesthesia - all of these are surely things not everybody would be willing to share. Thank you again, Joanne!

And Greg, you were a wonderful host for Matt and me. We really enjoyed the time we spent with you! And thank you both for allowing us to stay at your palazzo!

Observing surgery is a rare experience for most of us. Due to my education, Joanne’s surgery was not the first one I observed, but it was the one which made by far the most beautiful impression on me. I was very impressed and touched by the smoothness of this team. Six to eight hands close together in this small space, weaving artfully in and out of each other. Often words were unnecessary. Every move was effective, executed with total precision. An incredible level of concentration was maintained for the entire duration of the surgery, yet there was no uncomfortable tension. This is hard, hard work and I have great respect for those who can perform on this level. When Professore Campisi states that he loves his work, I have not the slightest doubt about it. You simply have to love this work to be able to do it the way this team does!!!

In the following, I will try to recall my memories as to what I observed during Joanne’s surgery. There will also be a few curious details that may not be professionally significant, but that’s just me. Perhaps you’ll enjoy a little lightness here and there …

The surgery is scheduled for 2pm. When I arrive at around 12:30 pm, the anaesthesiologist is briefing with Joanne. He is a small guy (smaller than I am!) who evidently has a good number of years under his belt. He is easygoing and creates a feeling of "don’t worry, honey, I was already doing this when you were still crawling around in diapers".

Joanne gets an injection to prepare her for the anaesthesia. It takes a little while to sink in. Meanwhile she praises the advantages of her new Kindle. She is very convincing and I feel like she could maybe have a bit of income at the side here to make this big fat microsurgery less of a burden for her wallet …

At 2:02 pm Professore Campisi arrives in the room. Yes, I am allowed to watch, and no, I don’t have to stay the whole time if for some reason I don’t want to or am not able to.

The operating team is 3 doctors and a male surgery nurse. Then there is the anaesthesiologist (and his son, who takes over soon after the surgery starts). There is also always one other guy there - either Matte or Marco - helping by organizing, clearing space, bringing stuff in and out. Joanne and I are the only females present.

There is some delay getting started due to Joanne’s venous situation. None of the veins in the left arm will work. The right arm in the elbow won’t work either. Finally the Professore (a.k.a. "Proffe") takes over and installs the IV into her right wrist.

Professore Campisi wants music in the operating room! One of the others rolls his eyes, but then there is Radio Nostalgia again! I am astonished that at my age I actually like this station. Nostalgia in Italy seems to set in much sooner than it does in Germany or California. Radio Nostalgia doesn’t play music from the early parts of the last century, as I would have expected. We listened to pop songs from my teenage years, most of which I knew, and some Italian hits - maybe even some contemporary ones. (Maybe I'm just getting old?)

Then follows a bunch of preparation: more shaving, covering of the areas not to be worked on, sterilization of the exposed area. Then Joanne is given three injections of blue dye into her upper thigh. This will be necessary later in the surgery to find the lymph vessels, since these are very small and transparent.

At 3:31 pm Joanne’s groin is finally cut open. For the next two hours, the team is busy clearing out fibrotic tissue, including lymph nodes. I am astonished at the degree of fibrosis.

I am standing near Joanne’s head, keeping an eye on her vital signs. At one point I observe a blood pressure reading of 81 over 44. The anaesthesiologist is unconcerned. In my mind I talk with Joanne. She seems fine.

The "micro" part of the surgery is next. It lasts maybe 50 minutes. I am told to leave my position at Joanne’s head to stand where I can better see the screen which shows what the team is seeing through their microscopes. Professore Campisi establishes several anastomoses. Sometimes it is hard for me to see on the screen what exactly he is doing. I wish he would talk more, but I don’t want to interrupt and ask questions. I can see how small and delicate the lymph vessels are. If there were no dye, I would not be able to make them out at all. Amazing that such an unassuming, humble, almost shy system has such an important role to play in our survival!

The newly made connections get flushed through several times and then, all of a sudden, it is over. The microscope is pushed away, tissue layers are sewn up.

The anaesthesiologist calls to Joanne several times: "Miss Bauer, Miss Bauer, it's over." (With his cute Italian accent!) Finally, when I call out "Joanne, wake up!", she opens her eyes and turns her head to me.

I feel a great tension falling away from me. At the same time an incredible exhaustion takes hold of me. My body aches, my head throbs, I am tired and hungry and unspeakable happy at the same time, thinking to myself: "We did it!" We??? A wave of gratefulness rolls over me. When I poke my nose into the post-surgery meeting of the three doctors to thank them and express my respect, I can hardly find words. I am truly touched. I am so lucky to have witnessed this!!!

Judge only by the amazing results

2009-10-24T11:29:00.000-07:00

There were four witnesses to Joanne's un-bandaging. I was not one of them. They were the Drs. Campisi and Boccardo, an unnamed but surely beautiful nurse, and Joanne. The only eyewitness account I've heard was from Joanne. She said she saw her ankle bone and veins in her right foot for the first time in years. Her right leg looked the same size and flaccidity (in a good way) as the left, below the knee. Then her leg was re-wrapped.

Prof. Dr. Campisi said "I'm happy for you, and very happy for your husband".

Joanne has been flat on her back since Tuesday,

gorging on three meals and a snack per day of fairly decent Italian hospital food. No, there is no wine, at least in Joanne's diet. They brought me a pretty good macchiato for merenda today. I'm almost always asked if I want to stay for dinner or the night, which I don't do. It is a €13 taxi ride out to the Casa di Cura, and the 43 bus stops at 8pm.

I moved our clothing and food and equipment by foot from via San Donato to via Cairoli in four trips. Today I paid off Halldis with a credit card, after our wire transfer of September mysteriously went astray. (Banca Sella, watch for the blogger's wrath.)

The move to via Cairoli has been like a change of countries. The new apartment is almost antiseptically clean, so you think of a monastery or a hospital or Germany. The heat and Internet work.

The noise calendar is almost exactly opposite of via San Donato. It is quiet at night, but noisy in the morning. Today human hubbub drew me out of bed and to the window at 7:30am. Looking out, I was verily amazed to see the largest baroque architectural scroll in Christendom filling the initial view. Michael Graves? Bladerunner?

Loud voices drew my eyes down to the steps of S. Fillipo. At first I thought it was a homeless feeding, but the elderly crowd of dozens was merely loudly socializing while awaiting the opening of the church doors for 8am Saturday mass. Sunday morning here might give via San Donato's nights a run.

Joanne's last surgical drain was removed today. Dr. Boccardo said Sunday is catheter out and a stroll day. Monday morning at 11 am is the scheduled hospital release, earlier than we thought.

Next stage: post operative care, about which we know little. Sonja was able to talk on her way out of town for Milan and Muenster Wednesday to Daniela Campisi, so there is a care continuity. We have all of next week to learn more about it. Slow medicine.

Listen brothers and sisters: it looks like Campisi's LVA works where previous methods have not. Mirabile dictu.

Surgery bulletin

2009-10-20T16:26:00.000-07:00

It happened. Successfully, to break the dramatic tension.

We checked in at 9 am. At 10 am Dr Boccardo, who we had only previously seen in the Arizona Open Rounds Internet video came in to Joanne's room and explained what to expect in the post-operative: three days of bed rest, food after the first day, walk on day four, a blue tracer "tattoo " to measure lymph movement. Advises to expect a five year follow-up, continued use of compression garments, continued MLD (manual lymph drainage) and lymphapress at new settings.

At 10:30am, shave and enema. It has to be done.

Lunch break for tutti (except Joanne).

2:30pm, a sedative shot in the butt.

3:00pm up to operating theater. Hopefully Sonja, Joanne's MLD therapist from Santa Cruz, who came over and watched the surgery, will insert comments here. (See October 26 post, thanks!) We are glad she was able to join us in Genoa and had the courage and curiosity to watch the surgery. Joanne was very glad for this.

7:30pm, Joanne finally comes out of post operative, or as they scarily call it here, terapia intensiva. The operation has gone long, and the "mild" anesthetic has her freezing and dopey. Favorite questions: "Is it over?" "What time is it?" (repeat every two minutes). She was shivering violently with cold, her breathe smelled of anesthesia, she was dumb. The anesthesiologist visits and is unconcerned with her blue face, which is considered a normal side affect here: faccia blu like the song Volare. Prof. Campesi came by and described a long but successful surgery. There was some difficulty in finding a vein in low blood pressure Joanne and then some inguinal fibrosis that slowed things down, but he established "multiple lymphatic venous anastomoses", which we decided to call "MLVA" and declared an improvement over the previously described "LVA".

I hope Sonja will post, (see her October 26 post) because her impressions of the operating team and procedure will inspire you at a medical and human level.

Late post, subject to editing, but good news goes out faster.

A day (or fifteen) at the clinic

2009-10-20T16:18:00.000-07:00

I had expected to have more energy and time to contribute to the blog but here it is October 20th, Central European Time. I'm checked in to my room at Clinica Casa di Cura Montallegro. Surgery is schedule for 2pm. I'll use the time to recap the past two weeks at Prof. Dott. Campisi's clinic.

Greg has written about slow medicine. Here are the details for my Italian slow medicine. I would arrive at the clinic at 3pm. Simona, a very good English speaker and coordinator for the clinic, would direct me to either the "wraps" or the "boot". The "wraps" is actually a 14-chamber pneumatic device comprised of 14 leatherette, velcro secured strips that would be wrapped around my leg from toe to hip. Air gets inject into each of these wraps by a sequential, gradient pressure pump. The pressure at the toes is greater than the pressure at the thigh. The timer was set for one hour and when that hour was up, I'd call for Simona and she'd spin the dial around for another 60 minutes. The wraps was the most uncomfortable part of the treatment. Two hours definitely approached my limit for tolerance.

Next usually came "the boot", another pneumatic compression device, consisting of a full-leg sleeve. I could never really sense any significant difference between the wraps and the boot. The boot session was generally an hour.

Thank god for the iPod and the Kindle. They helped me pass the time.

But there's more.

Next is the vacuum. The vacuum is the Weyergans Future Health machine, a giant, horizontal metal tube. I meant to Google this to find out what it is meant to do. (Gregory… perhaps there's even a photo to post.) (Got it below, honey). You slide into it. A cinching mechanism is pulled into place to create a seal. Buttons are pushed and somehow air is sucked in and out of the tube. Presumably to enhance circulation. 30 minuti later, done.

I am forgetting to mention that from October 6 to now, here in my hospital bed, my right leg has been wrapped in tight elastic bandages from foot to groin. Each toe, the little one excepted, is wrapped individually. I've had just one real shower from the start of treatment.

Every 3rd day or so the bandages are removed, the leg inspected by the Professore, and rewrapped. Before rebandaging, however, is the best part of the treatment: a brief, leg massage done by either Erica or Lilly, followed by a brief Endermology treatment. (Another photo, please.) (Yes honey. It was hard to get the models to smile, though.)

The massage is very different than MLD. It starts at the toes, for one thing. Anyway, this part would use up another 30 minutes and then I would be sent to the bandaging station.

If I was very lucky, Giovanni would do the bandaging. He's a true master of the craft. Another 20 to 30 minutes and the day would be over.

My shortest day was a little over 3 1/2 hours. The longest with waits to move to the next station or to see the Professor, 5 1/2 hours. Six days a week. Even the Prof. keeps office hours on Saturday.

Logistics update/ timeline

2009-10-16T09:04:00.000-07:00

Joanne has been occupied with tests and treatment and trying to keep up a little with work. Her posts are falling behind, so for enquiring minds, here's the current timeline:

October 20 (Tuesday): Joanne will check into Casa di Cura Villa Montallegro and have her surgery starting around 2pm. She will stay for a week, until October 27.

October 23 (Friday): Lease up at via San Donato. I will move to an apartment at Hotel Cairoli on via Cairoli. Joanne will join October 27.

October 31 (Saturday): Joanne released by Prof. Campisi.

November 1 (Sunday): "Treno Germania Notte" from Genova to Milan to Frankfurt to Frankfurt airport. Working title?

November 2 (Monday): Flight from Frankfurt to San Francisco to Monterey.

European integration

2009-10-15T07:31:00.000-07:00

My barber said everything went to hell when the city permitted serving alcohol without food in the neighborhood. He has abandoned this rumoroso quartiere, but has kept his shop, "Domenico, Acconciatore per Uomo", at via San Donato for fifty years. "The youth is in rebellion", he said while I perused the Catholic saint's life book he was reading when I came in. I felt communion with this man, as curmudgeonly as me regarding the neighborhood's night noise.

I suppose the law changed around the time English soccer hooligans were terrifying European cities. The Italians were unaccustomed to Anglo Saxon binge drinking, and were therefore defenseless to the numbed onslaughts. Thanks to the city, and its dispensation for the via di San Donato, the Italian youth are ready. They train hard and late to defend Genoa's honor in the next engagement with gli inglese. In fact, so integrated with Europe is Italy, that hooliganism with other Italian cities can occur without an inglese anywhere.

Genova is not a cosmopolitan city. In fact it is proud to be provincial, proud of its unique antique traditions and cultural ways. Some are charming and some are arretrato.

"We called the police and complained, but they didn't come". The neighborhood is now a ghetto of students, the artistic hangers-on in their piani nobili, the elderly poor. It is a short, disempowered lot. They are literally the little people. They still get thrice daily garbage pick-up, starting at 7 a.m. and we haven't seen a rat or cockroach, as in some of the world's great capitals. We are the first semi-sunny spot emerging from the carrugi, the five foot-wide streets with eight story buildings that could inspire Poe with claustrophobic dread. Walking down via San Bernando is to feel a tightening noose; a left turn tighter, straight ahead asphyxia. Of course you survive, but this is not your usual reaction to an urban landscape. Genova is unique.

The weather has changed for the colder. I think people are saying it's like gelato, but I might be mistaken. They say it comes from Siberia, which is their version of Canada. Of course, on top of the other stellar Halldis rental agency quality assurance, the apartment has no heat. Please, let me commend someone, anyone, other than Halldis to be your rental agent in Europe! If Joanne's mission is to advance the lymphedema discussion, mine is to save succeeding visitors to Europe from the scourge of Halldis.

We get around town by walking or taking the bus. There was a bus strike Wednesday, which we knew nothing about until Joanne went up to her stop at Piazza Ferrari. She summoned her Italian and asked "No autobus oggi?" "No autobus oggi". She walked the mile up the hill to via Assarotti 46 (nero).

When we ride the bus we usually end up standing, and are generally head and shoulders taller than the other riders. The first progressive thing I found in Genova is that they have dedicated bus lanes in the city center. Bravo! The traffic is a mess but the bus glides through, unless the intersection is blocked by some individualist in a car.

These short people are also smoking like it's 1956. The full Genova could be a cell phone to the ear, some sort of piercing, logowear, and a cigarette. Of course I exaggerate: very few people do the full Genova.

The barber asked where my wife was being treated. I mentioned Professore Campisi to a blank stare, but when I mentioned Casa di Cura Villa Montallegro he lit up. Ah, a clinica privata! We went up there yesterday for some pre-admission paperwork, including the estimate of costs, and an EKG. It looks like a villa should look: bosky, semi-Palladian, some of the rooms with balconies and sea views.

Today we joined the public sector for a lymphoscintigraph at Istituto Salus. I think it was a PET scan: Joanne's left and right leg were injected with something scintillating between her big toe and whatever the other one is called (not many Italians know the English word "toe", so they usually say "foot fingers") and another behind the ankle bone. One scan, then go out for a walk for an hour, come back and scan again. But back to the public sector. The Istituto Salus is private, and performs tests for public and private patients. In the large and perhaps pedictably crowded waiting room I saw some people putting out a small co-pay. We paid full rate. What the full private rate gets is minimal wait time: we were ushered around like we had a plane to catch.

One of the conversational dialogues not covered in Pimsleur Italian 1 is a medical waiting room scenario where people are getting test results. Everyone in the nuclear medicine waiting room got a sealed large white envelope and carried their own results away.

First visit to the clinic

2009-10-13T01:33:00.000-07:00

By July I had my visit to the clinic scheduled with my first appointment set for October 5th at 6:30 pm! NB: Genoa has a very idiosyncratic street address system of black and red numbers. Originally, commercial establishments were given red numbers and everything else got a black (or blue) number. 46 Black can be several blocks away from 46 Red depending on the mix of building types on each street. Wacky, no? Even more confusing is that the black/red convention was established some time ago and as building use has changed from noncommercial to commercial, the numbering system has not. We walked up and down the block several times where we thought the clinic should be, but could not find #46. After asking in a cafe we learned that we should be looking for 46 Nero, not Rosa. The doctor's office was several blocks up the street.

We arrived to a packed waiting room. This surprised me but I guess it shouldn't have. Businesses in Italy close for lunch; in Genoa from 1 to 3. Shops reopen at 3pm and close for the day and 7 or 8. Same is true for the clinic.

The doctor goes by the title of Professore. My arrival was announced to the Prof. He came out to greet me and to let me know he had to finish with another patient. A few minutes later Greg and I were brought to an office where the Professore's son, Corrado, also a doctor and very fluent in English, conducted an intake interview. We met Daniela, the Professore's wife, who works as his office assistant. Next, into the Prof's office. He's a very gregarious man; we talked about his recent trip to Sydney, Australia for an international lymphology meeting. He remembered well meeting my Santa Cruz therapist, Karen, and I told him I heard he was quite a dancer. Then, down to business. Corrado did a doppler sonogram to test the strength of my veins because with out good vein sufficiency LVA will not succeed. I passed. The Prof examined my leg and concluded that I was a good candidate for a successful surgery. He advised me to go back the apartment and take a shower and to take another in the morning because once the presurgical therapy started there would be no more showers. We left the office a 9pm.

Google alerts

2009-10-12T13:04:00.000-07:00

In March of this year I got a Google alert about a doctor in Texas who was doing LVA, Lymphatic venous anastomosis, surgery to treat lymphedema. LVA surgery is a microsurgical bypass of the lymph system blockage. I called the doctor's office, found out that he'd done just a few dozen of the surgeries and that my insurance would not cover the procedure. But... I remembered reading about a doctor in Italy, Prof Campisi at the University of Genoa, who was doing this LVA surgery and decided to do a search to see what his results were like. Well, my search came up with a 2008 study reporting very positive results: A 10 year history of over 1000 patients resulting in a 75% reduction in swelling in over 80 percent of the patients. This sounded pretty good to me. I did more research. By May, I had pretty much decided I wanted to try the surgery and pretty much decided that if I was going to have it done, I was going to go with the doctor who had the most practice, so I sent Prof. Campisi an email.

Slow health care

2009-10-12T09:26:00.000-07:00

Our month in Genoa will be extended by a few days, from October 28 to a departure on November 1. If things hold. We've made reservations at the Hotel Cairoli's apartment to carry us over to departure day. The apartment looks monastic, but should be more reliable than the bachelor mini-palazzo Halldis rented us on via di San Donato.

An American correspondent in Germany asks: "what is taking so long?" It's a great question because it goes to the root of cultural and medical practices that are so different here, at least in our experience, from America.

Everyone has heard of the slow food movement. If they've used a European front-loading washing machine, they've experienced slow laundry. We're being introduced to a similar, and hopefully virtuous medical approach: slow health care.

The Prof. Dott. Corradino Campisi medical practice is a family operation. It consists of the Professore (Corradino), his wife and right hand (Daniela), and his son (Corrado), an M.D. with practice at the Mayo Clinic in Rochester. You might think that Corrado should be the father, but Corradino's father was Corrado, and I guess rather than naming Corrado Corradinisimo, they reverted back a couple of generations. Saint Corrado Gonfalonieri is the patron saint of Noto, near Siracuse in Sicily. He was a robust saint, as are his namesakes.

The staff: Simona, Lorenzo, Erica, Lilly and others work six days a week. Joanne goes in six days a week, too. Weekdays it is from three to seven p.m. (or later), Saturday from 10 a.m. to 3 p.m. It is an intensive three week mechanical compression treatment, plus compression bandaging, plus a week of post-surgery hospitalization.

The medical premise of Joanne's treatment seems to be that without intensive preparation and drainage, the most skilled surgical intervention may not work. My interpretation: the uncirculated lymph becomes a type of protein smega, congested and gelatinous. The Houston results of similar Lympho-venous Anastomoses (LVA) without pre-operative care bear this out. When the new outlets are created, they are more likely to clog without intensive pre- and post- treatment. That treatment takes time, something that American actuaries are apparently unwilling to grant.

"Why is it taking so long?" Think to the assumption of the question: the quick fix. The pathogenic theory of disease, a.k.a. germ theory, dominates the American medical scene. The effectiveness of penicillin and vaccines, the drama of the E.R. resuscitation grabs our attention. The American health care system is outstanding in acute care. It is less effective in prevention and treatment of the chronic. In the USA, a procedure similar to Joanne's is only offered in Houston and our health insurance would not cover it. In Genoa, the week of Joanne's lympho-venous anastomoses, the procedure was performed four other times and was covered by the Italian national health insurance. Joanne, an American, is paying out of pocket. It will be interesting to see how much, if any, of the Italian treatment our "Cadillac" private insurance might reimburse. Italians were amazed that we came to Italy for health care. "America is the vanguard" they usually said.

America is the vanguard of acute care. It drives the American system, perhaps because it lends itself to actuaries hard wiring treatment. These are your explanation of benefits, your body's ailments as coded line items. The treatment of a chronic condition, something that takes time, is uncoded.

The Hippocratic model understood chronic conditions: "let the body find its way" with the physician's guidance. The Hippocratic "treatment", "cure", and the sanitarium are not much in the American medical model any more. Our actuaries have substituted prescribed magic potions and the body as a collection of coded parts, a position that Hippocrates supposedly upended. Think of your typical doctor visit: was the outcome care and counseling, or a prescription? We need to re-invoke Hippocrates in all chronic care, but especially the relatively uncharted waters, or dare I say humors, of chronic lymph system treatment.

Would Hippocrates be one more distraction in the US national health care debate? Does American medicine's ownership by the potion makers, the BigPharma, and insurance companies advance human health? What would Hippocrates say?

Why am I doing this blog?

2009-10-11T08:40:00.000-07:00

Certainly because I thought this would be an easy way to communicate with family and friends, but also I hope this blog might be read by others with lymphedema.

Without getting too technical (at all) for those who have never heard of lymphedema, lymphedema is a swelling, the edema, caused by an impairment of the lymphatic system. The lymphatic system is the other circulatory system of our bodies. The blood system delivers oxygen to our cells; the lymphatic system takes away cellular waste. Some people are born with lymphedema; others like me develop the condition as the result of damage to the system. In my case, the most likely cause was surgery that removed lymph nodes in my abdomen after cancer was found in a fallopian tube. For those of you in the lymphedema world, I have stage II lymphedema in my right leg with some fibrosis.

My surgery was in early 2003. Visible symptoms of my lymphedema did not appear until early 2005. At first the swelling would come and go and since I'd never heard of lymphedema, I had no idea that anything serious was happening. By September, the swelling was permanent. (Ironically, the last weekend before I realized what was going on I bought several pairs of shoes that I've worn... maybe twice.)

The really depressing part of discovering I had lymphedema was that everything I read said there is no cure, only treatment to manage the condition. So, for the past 5 years I have worn compression garments 24/7. I bought a laser. I bought a hivamat. I bought a pump. I bought the latest edition of the Foldi textbook. I have a weekly drainage massage. I spend at least one hour a day doing something for my leg. I have been a very compliant patient.

I also set up an alert on Google for news on lymphedema because if somebody, somewhere had an approach to curing the condition, I wanted to know about it. To be continued...

A week in...

2009-10-11T07:52:00.000-07:00

It's one thing to tour a foreign country, and another to live in one. Genoa is Italian Italian. Cruise ships blow through on their Mediterranean tours, so foreigners are largely diurnal. It is Italy's largest port. Sometimes we can smell the sea, see or hear a gull through our back windows.

Our apartment is on via San Donato in the Centro Storico, Europe's largest intact medieval town. The buildings are close-packed, ranging to eight stories, a marvel in that age and earning Genoa the epithet "la Superba". It was the financial capital of the age of discovery. The sounds are largely human sounds, very few cars, an occasional scooter, the playground up the hill, the thrice-daily garbage pick-up outside our street-side windows, church bells. Then comes the night.

We rented the apartment from Halldis, which purports to be specialists in long-term business stays. Check out their FAQ. Our apartment shows well, with maybe a slightly ostentatious cultivation. It is on the piano nobile after all. Halldis promised an Internet connection and other amenities one expects for the molti Soldi given. They neglected to mention that the Internet connection cannot establish a secure socket layer (SSL), so that any real business cannot be done in situ. We go to the Internet Cafe at Piazza del Erbe or the WiFi at Palazzo Ducale to check our accounts. (More on Internet and information technology in Italy in a following post.) The television channels, maybe eight, are all Italian. They make American television look like Masterpiece Theatre. I ordered a multi pass for Colbert Report from iTunes for relief.

The big missing disclosure in Halldis' promotion for our apartment is that it is located at the epicenter of Genoa's night-life district. By night-life I do not mean fine dining and "cin-cin". I mean Spring Break. Spring Break every night right outside our windows until three a.m. Before we discovered how to operate the air conditioning we left the windows open. (The temperatures are perfect!) Those nights were sleepless. Our tormenters are not bad people. They are teens and twenty-somethings doing what comes naturally at night: Party! The good news is that there is no soul-less reverberating electronic bass, merely dozens and dozens of voices reverberating off the stone buildings and through our single pane windows. If you are reading this as a twenty-something and want to party down in Genoa all night, we have an apartment for you. If you are a business traveler, do not expect "a base to work from".

Though we are old humans, we still have some adaptability and invention. We have learned that our single-pane windows can be augmented by the wooden shutters. That air conditioning can be your friend. That closing every window, door and shutter, interior and exterior, inserting foam ear plugs firmly in the ear, dosing with wine and melatonin and maybe an ambien at retirement, that maybe, just maybe, sleep can be possible.

Genoa looks so much better after sleep. The farmers market this weekend at Piazza Ducale held marvels of meat and cheese and vegetables and wine upon which we have gorged. Last night Joanne cooked the best haricots vert / faggiolini I have ever had. Today we rode the Righi funicular, which is like a vertical subway up the hill, and rewards only at the top with verdant long views of hills and city and port.

More observations of Genoa to follow later.

Our airplane ride from San Francisco to Frankfurt was the most comfortable seat I have ever experienced. We actually slept in United's lie-flat business seats (uncompensated endorsement). Lufthansa got us to Milan, where we overnighted, and trained to Genoa the next afternoon. The Trenitalia website is good for buying tickets, which I did from our Milan hotel. Good thing: that train was sold-out by the time of departure. Most of the passengers were going to Cinque Terre, an undiscovered section of the Ligurean coast.

At the airport...

2009-10-02T11:44:00.000-07:00

...and setting up the blog to share the adventure with Joanne's friends, fans, and family. Here I am promising not to put her picture on the Internets.