The Hospital Stay: the uncut version.

Melissa.

I’m not sure how to describe the whole hospital stay. Thanks to the miracle of retrograde amnesia and a generally optimistic personality, I’m already over-writing the unpleasantness with “it wasn’t too bad.” At the time, it was probably everything you would expect for a hospital stay. Except, remember that this was my first surgery and I had no idea what to expect.

If I was reading this and intending to have this surgery soon, I would want know the details. I like to be prepared. I’m a born girl scout. I’m going to assume you are all the same. Before I get into details I just want to extend my thanks again to Professor Campisi and Drs. Boccardo and Corrado Campisi. I know I don’t have any experience with other surgeries but they seemed to go above and beyond the call of duty. They were always making enquiries about how I was doing and visiting. The nurses also were very kind and always a bell call away. In fact sometimes they came so quickly it seemed like they must have been hovering outside. Or they had roller-skates on. I forgot to look.

So, details… after the surgery, you are on bed-rest for three days. I mean complete bed-rest. You have an IV initially and a catheter and I had two drains coming from the incision. So, no fantasies of sneaking up and using that ensuite. It was my first experience in adulthood of being completely incapacitated. I had to say I did not like it but then again I have been independent (My family call it stubborn or pig-headed. Whatever) since I was a pre-schooler. It was not the being washed or changed by nurses or being poked and prodded in places few people see. I expected that bit. It was the other little things, like the time I had to call a nurse just to turn off a light. Or ask my Dad to fetch me everything I might possibly need before he left for the night, so I could arrange them in arm’s reach, just in case.

All of that would have been just as difficult and uncomfortable at home but not speaking Italian did add yet another layer of difficulty. I learnt the words for sick, pain, help, thirsty, etc. But I could not communicate the level, location, or type of pain without hand gestures and facial grimaces and the nurses eventually sending for someone who spoke English. You can communicate a lot non-verbally but I was unable to say, “Yes, I have some pain but no, I don’t want painkillers. It’s bearable and this way I can tell when I’ve moved too far. Then I won’t make that movement again”. I’m just not that talented at charades. It was also a bit lonely not being able to chat away to people. Once we had said hi and talked about New Zealand (rugby seemed to come up a lot) and the weather, I ran out of Italian. I would have liked to have properly thanked the girl who cleaned my room each day and talked to her; she seemed nice. Again, we were limited to smiles. Thankfully they are universal.

But I have to say, the language difficulties did create some funny moments. The nurses and catering staff went out of their way to make me feel at home. Maybe it was just part of their jobs but they genuinely seemed to care whether I was feeling good or not and that I had everything that I wanted. Twice two male nurses sat down and translated the menus for me. This was hilariously entertaining, especially when we got to rabbit. Seeing a grown man act out a rabbit twitching its nose complete with rabbit ear-fingers was very funny. I did not have the heart to tell him I was a vegetarian. I also made numerous mistakes with food all by myself. Often I selected some very funny combinations of food for meals based on wild guesses about the menu or assumptions that the food would be the same as at home. For example, I imagined that the mozzarella would be baked or in a sauce or something. Not just a ball of fresh mozzarella. Oops. Still, it was nice added to the tossed salad.

What else to say? The five-day stay in the hospital was uncomfortable, undignified, and awfully boring at times. It tested my patience and having the internet connected on the second day seemed like the world had opened up again and made me realise how privileged and probably spoiled, if I’m honest, my life usually is. It was elective surgery after all and I’d been able to make that choice. I was being given the opportunity to get full function in my leg again, if everything went to plan, not something that is offered to every person with lymphedema. Probably less than five percent of people with lymphedema can elect to have the surgery, due to the cost, despite the fact that I think most could benefit from it. I’m not meaning to navel gaze, just comment on the fact that I am aware of how lucky I am. Something I used to give myself a stern talking to in the middle of the night. You know that time when you’re lonely, sore, and, if you weren’t too grown up to admit it, you just want your mummy? Hmm... I hope that’s not just me.

And then, suddenly, we reached Day 5. Drains and tubing were removed. I gained a new appreciation for that ensuite and the energy required to reach it. Even if I did require the assistance of two nurses at first. I was upright! I was walking! I was able to look out the window and see the parking lot! This was excitement; clearly my world had shrunk more than a little. We were discharged on the morning of Day 6 and headed back to the B&B to recuperate. Phase two of the treatment programme was over. 

Phase three was about to begin. This, actually, was where things got a little hard for me. I'll write about them briefly, in case it happens to you too. If you're delicate little flowers with stupidly fragile skin like myself, that is!

Surgery Saturday

Melissa.

Well, the big day had finally arrived. Unfortunately, as is my usual habit, I was up with the birds. Fortunately, Italian surgeons appear to also keep these hours, as Professor Campisi and the team made a brief visit to my room before 7.30am. I can’t remember what we talked about; I guess there isn’t much to say. ‘Good weather for surgery’ hardly seems appropriate. Anyway, it was a brief visit and then I was left with my thoughts. Then, it sunk in that being the second surgery of the day is not a good thing. I was ready to go now! I’m not very good with waiting. Patience is not on my list of virtues.

Thankfully Shannon, Shawn’s sister, came to keep me company. I’m not sure she realises exactly how grateful I was to her for keeping me amused with funny stories and book discussions. I’d like to think that I helped to keep her mind off Shawn’s surgery but I think I’d be stretching the truth a little there. Eleven am slid by. Eleven thirty. Uh-oh. What happened to the schedule? Just as I was about to panic; some for myself and some for Shawn, the smiling nurses came in with the pre-meds. Now, you all know that I’ve seen ER, so, of course, I was waiting for the meds to kick in and for me to suddenly become drunkenly funny. There’d be some witty one-liners exchanged and I’d leave the impression that New Zealanders were masters of comedy. This did not happen. Maybe there wasn’t enough time for the comedy side-effects to kick in? I entered the operating theatre about 25 minutes later. That was it, right? I’m actually really funny, there just wasn’t enough time.

I thought the operating theatre would be bigger. There would be lights everywhere and a viewing platform for spectators. But, like many things in Italy, it was compact and efficient. One of the scrub nurses was an hilariously funny man. He appeared to be in his sixties and spoke remarkably good English but in a thick accent. He was fascinated with my eyes; I guess blue/green eyes with gold flecks are unusual in Italy. Good thing he couldn’t see my hair. He spent about two minutes just staring intently into my eyes. We could have been half an hour with the hair. He asked what I did for a job. I told him Psychologist. Ah! He said “perhaps I could therapise him?” I said I didn’t have enough time. We laughed. See? I am funny. The lovely anaesthetist turned up at this stage and administered the anaesthetic. No mask, no demonstrating my prowess at counting backwards, just my eyes closing.

I wake up in my bed. A little shaking, a little nausea, a little pain. All managed wonderfully well by the nurses. Professor Campisi and the other surgeons are there at some point; the surgery went well but took longer than expected due to the large amount of inflammatory tissue in the thigh that the body had produced as a reaction to the sea urchin toxin. He removed all this before joining the lymph system to the veins. Not that I took all this information in after the surgery…I have a good memory but not that good! I remember the visit, I remember Dad being there and some beautiful roses, and then I slept and remember little apart from nurses changing the IV in the night. A lazy Saturday really, with all the sleeping I did!

Real hospitals are nothing like ER

Melissa.

We entered the Casa di Cura Villa Montallegro with some trepidation. Or at least I did. It transpired that I needed to have a chest x-ray first up. I missed out the previous trip for some reason. For a while it looked as if they were going to make Shawn have two but my guilty conscience got to me and I confessed. Sigh. Nice people really do get nowhere.

Anyway, after that we were taken upstairs to the third floor (surgical ward) and shown to our private rooms. I liked mine; the bed was the main focus (clearly that was where the most important person was going; so that made sense) and the room also contained pleasant blue furniture, an LCD tv, a view of the parking lot, and a private ensuite. I would hardly use the ensuite but it’s the thought that counts-right?

We then tried to venture downstairs to get some dinner. The nurses gave us a funny look as we passed but we took no notice. Everyone gives us funny looks here; there’s no point in trying to decipher them all. Turns out we should have paid attention. FYI the restaurant does not open till 7:30pm no matter how longingly you stare at the menu at 6.15pm. The nurses at Villa Montallegro are very polite and agreed that it was sensible of us to have visited the restaurant in advance. It wouldn’t do to get lost, you know.

After dinner, we met the anaesthetist and the third Italian surgeon, Dr Francesco Boccardo. Both of them were very welcoming and took the time to answer my questions. Dr Boccardo speaks very good English and is very handsome. I’m getting the feeling that this may be a pre-requisite for becoming a surgeon in Italy.

I’d like to block the next bit out. Unfortunately I have a good memory. Prior to this, I was mostly treating the event like staying in a hotel. I’ve never had surgery before so I’ve nothing to compare it to but ER and, sadly, real hospitals are nothing like ER. Let’s just say that the subsequent enema and shaving completely punctured that fantasy. I took to my bed not long after that and was pleased to find it comfortable and that I slept.

Next up… Surgery Saturday

Home Sweet Home

Shawn.

Living in the B&B above Professor Campisi's clinic is a real treat; its comfortable, and there are others who share the same leg/arm maladies. Each person gets a private bathroom and there is a kitchen where I can cook my lunch and dinner with the other guests. My breakfast is ready every morning at around 8:30 and Maria, the B&B boss, has a good sense of humor. Today for instance she performed an impromptu  sashay in front of the French doors. But more about that later...

We are located on the fourth floor of one office building. In another building, but conveniently directly across from our breakfast table, is an office which  takes up the fourth floor in that building. Melissa and I don't watch television because all the stations are in Italian; though come to think of it, I could probably watch Animal Planet. But I digress, back to the office across the street—our own personal live reality show. We tune in every morning about 9:00

Today 'L'ufficio' (The Office) was really interesting. Well, compared to other days when the employees just sit at their desks and look at computers. So today, the man from window 1 darted over to the man from window 2 where an animated discussion took place. I wish I could read lips or at least had a pair of binoculars because they chatted for a long time. This in itself was unusual. All of a sudden they both ran out of the room. Was there a fire? Perhaps someone left the espresso on the stove for too long? We are desperate to know what is going on. (Like I said, we don't have much action around the homestead...)

But hold on, a new cast member has joined 'L'ufficio.' I must have been looking down at the woman who has the lemon tree on her balcony because when I looked up again I only caught a glimpse of the back of the new cast member in shiny cowboy rain-boots. Intriguing. We guess she will become a key player in future episodes. Then Maria, the boss of the B&B, performs her own little show for 'The Office' on the fourth floor. Luckily the cast of 'L'ufficio' are absent so we are the only ones to witness her show and I must say it was very entertaining. Hip gyrations included. It doesn't take much to get a chuckle around here. 

Tune in tomorrow for another exciting show of 'L'ufficio'.

My only Italian shoes so far

As noted before, SENSIBLE people will bring suitable shoes to Italy. But then again,  I never claimed I was sensible!

Melissa

Well, I had thought that I had sunk to a new low when I acquired the beige compression stocking back home. I was all ready to sign myself up for a Zimmer frame and a life aka Bridget Jones where I would die alone and be eaten by Alsatians...but I was wrong…

Enter the giant bandaged foot and the impossibility to get shoes to fit comfortably. After wearing my running shoes with the laces undone for the past two days since arriving, I just could not bear to wear them any longer. I found myself coveting the crocs worn by the nursing staff at the pre-operative check yesterday. Crocs! You see how low I have sunk. Luckily, one other patient was recently wearing what looked like grandpa slippers and Shawn got the address off her for the orthopaedic shop.

This shop was quite the eye-opener. It sells everything from wheelchairs to braces to stockings to dental gear and blood pressure and portable fat monitors (I was quite intrigued by that one and wondered if you put it on you to measure your body fat or if you stuck it in your food. Unfortunately my Italian reading skills, while miles ahead on my ability to parley, did not stretch to gadget packaging). Nestled amongst this was a glass display of the most heinous slippers and clogs imaginable. No plain black shoes available; no, this season’s orthopaedic shoe is all about the colours; maroon or leopard print or pond-scum green with reindeer on them. I kid you not. We were momentarily buoyed by the sign on the top of the cabinet that showed crocs (Dr Scholl here) but alas, the shop assistant said they did not stock these. 

So, we picked the least hideous clog slipper in a charming off-white colour and asked for 2 sizes too big. Being mirror twins, our plan was to buy one fat-foot pair and one normal-foot pair and trade. To our embarrassment, the clog-shoe did not fit. Nor did the next size or the size above that. The lady kept shaking her head when we asked for bigger ones. No, no - that was the biggest she had and no, they did not stock men's shoes. Her look said, what were these crazy foreigners wanting with men's shoes?

We were about to give up and resign ourselves to living with cramped feet when she emerged from the back with the holy grail of orthopaedic slippers. Behold them in all of their elegance; black with a lovely crepe sole. The upper is made of the softest black felt and the shoe is lined with faux sheepskin. Over the toe is Velcro in a t-shape so that the entire front upper can lift away from the sole and fit in a swollen foot. On the heel, more Velcro allows adjustment for slim or corpulent heels. The whole thing is finished with a cheerful stripe of piping around the front. What more can you want? They are absolute bliss to wear - no burning heels or pain across the top of the foot where the running shoe cut in. I feel somehow like a naughty little kid wearing my slippers in public. Okay, so they may be classed as a public menace as some elderly Italian lady almost fell off her scooter ogling them at the traffic lights but who cares; it's like walking on air!

Pre Surgery Check in at Casa di Cura Villa Montallegro

Shawn
Melissa and I are scheduled for pre-op at the Villa Montallegro prior to surgery this coming Saturday.  We head off in the cab at 7:30 a.m. still half asleep. So glad I don’t have to go through this on my own, its much easier to distract yourself from upcoming surgery when there is someone else to chatter to, though perhaps Melissa would like to be silent; I don’t give her much of a chance.

The receptionist is expecting us and asks for the ‘documentation’ or passport as we check in. It seems as though everyone in town wants my passport/documentation. I bought some very stretchy clothes at H and M and even they wanted passport. Weird. But back to the hospital.

First round of tests was the usual—blood work and pee in a cup. Flunked peeing in a cup and promised the nurse I would return to fill up the cup later. Melissa passed.

Next we walk to ultra sounding. As far as I could tell, the ultrasound was to determine if I had any organs because with each pass of the wand over an organ the technician would report. ‘Spleen ok.’ ‘Liver ok.’ Good to know. Fatty the leg did not receive an ultrasound, perhaps the doctors will visit fatty later? Indeed, just as the thought crossed my mind, the receptionist appears and says, ‘You come back at 12 for one more test.’ I have a self-contained-inner-temper-tantrum, its now only 9:30 and I have an hour more of tests and don’t have time to make it to the B&B and back which means I need to stay here, which is ok but I’m starving and I’m very crabby when I’m hungry. I valiantly try to explain this without sounding like a spoiled Americana. ‘I will call the doctor and see.’ 

After the ultrasound, the receptionist pointed out the door and said ‘Rosso Dr. Maura’ we interpreted this to mean, go see dr. Maura (a cardiologist) in the pink building.  Dr Maura, a tall stately fellow, greets us upon our entering and ushers us both into the room. Thus far, we’ve been through several exams together—not something you’d typically find in America. He speaks English fairly well, which is helpful when he takes the history AGAIN. I’m first on the exam table. Blood pressure, heart sounds all ok. 'Take off this.' He says as he points to my bra. Well he’s a doctor after all, and Melissa is in the room, so I do as he says. So, I’m on the exam table half dressed when he opens a traveling box and extracts some goo and tapes. Tapes are placed at various parts of my upper half and then he pulls out all sorts of plastic/rubber-encased wires, which are hooked onto the tapes. I’d say there were about 8-10 wires. Finally, come the heavy metal ball bearings, which suction right to my chest. I can now play a string game on my chest between the ball bearings. Nothing hurts, its just weird and of course, my heart is fine!! I could have told him that to start with! Now back to the white building, but first we have a break for a snack.

Find a perfect café, partake of some delicious treats and cappuccinos, and walk back to the white building. Villa Montallegro, where we sit—for an hour with our fat bandaged legs.

Gimli from ‘The Hobbit’ enters the room. Not kidding. Short ruffian, built like a tank, black long rough scratchy beard complete with small braid at the bottom of the beard. Did I say he was wearing cut off jean shorts? He was. I try not to stare; he stares at my leg and me. I stare back. It’s a staring contest. He wins. He looks to scary to stare at, he might go all dwarf on me. Finally, a very harried and crabby looking doctor enters the reception. I hope he’s not our doctor. He is. Melissa enters first and after 20 minutes or so come back out and says, ‘thought I was going to get rid of the bandage but he only cut a hole in it.’  My turn.

He’s still crabby even after I greet him with a toothy buon giorno. ‘Un-cover your pantaloni’ an obvious statement if there every was one. Boy, these Italian men have a way of making a girl swoon! I uncover my pants; thankful that I purchased some new undie pants from the H and M. He motions me to turn over and clips a small hole in the multi-wrapped bandage behind my knee. I feel a tugging and peek over my shoulder to witness him sweating and pulling at the thick bandage. ‘Cut if all off because I don’t like it.’ I say. He has a good laugh. More ultra sounding, this time to see the blood flow through the veins. I guess its ok on one leg at least. I don’t know because he is not one of the ‘kiss and tell’ doctors like the other three were.

Finished the pre-surgery appointment after 4 hours and  head off in the direction of the taxi, confident we will find one at the nearby piazza. We don’t find one so we take the bus. After a nice tour through Genoa on the bus, we get off but are no closer to the B&B than where we started. This is a problem, but not to worry as I spy and stop a passing police car.

‘Buon giorno, we are lost, we need Via Assarotti, can you help us.’

He gets out of the car and talks about buses, taxi’s, and train—none of which we know how to find.

‘Yes, but can you just drive us, we are lost’ I say the latter in case he didn’t understand the first time.

Laughter. ‘It is not possible for me to drive you.’

At this moment, my Apple i-phone inexplicitly takes his picture.

‘Thank you.’ He says with a smile.

He leaves and we amble slowly in the direction he pointed in hopes of securing some sort of transportation. Again, we find the bus stop and a piazza. Where there is a piazza there is usually a taxi. Not only is there a taxi but the same policeman comes forward pointing at us and explaining our ‘lostedness’. I love the Italians. They are so helpful.

Treatment at the Clinic

Melissa.  Treatment starts each day when the clinic opens at three pm in the afternoon. Each treatment session runs for a minimum of three and a half hours. I had absolutely no idea what to expect for this bit, except that I had a vague idea it would involve squeezing stuff out of my leg but couldn’t imagine how it would work. What I’ve gathered so far is that it is a three-step process (four if you are lucky enough to have a massage session). I’ll explain each step in a bit of detail. You kind of move round the clinic in a circuit, always doing the therapy in the same order, and emerge again on the other side of the waiting room.

First up is a little device I refer to as an over-sized Christmas stocking but not as festive. You enter a little cubicle and sit on a bed. The stocking is placed over your bandaged limb and connected to a pneumatic pump. It squeezes tight (so tight my toes burned at first), holds it for about 20 seconds, and then releases the pressure. Repeat this another 180-270 times and your time in that cubicle will be up. There are about 15 people getting treatment at once (although some are staggered by an hour as there are only about 10 of some machines) and everything is run on timers. All you can hear (aside from mumblings in Italian – or conversations if you are a local) is “Simone”, “Simone” (The name of the lovely technician who gets people in and out of the equipment). “Simone, Simone”, we all cry plaintively until she comes to release us. You can't see out of the cubicle, so you have to cry out when your timer runs out, so that you can be released from the stocking.

Then you shuffle on to the next room. Prepared Italians will wear lovely little sarongs as they move about. Ill-prepared New Zealanders will walk around in their underwear. The second treatment consists of about 14 cuffs (I'm guessing they were blood pressure cuffs in another life) that are wrapped overlapping from toes to groin up your leg. They work sequentially from the toes upwards, giving the highest pressure at the toes, until all the cuffs are tight and then they all release. Repeat a million times.

For future patients: Are you getting the idea that the treatment takes a long time? If you have the attention span of a gnat, as I do, you will be bored after the first ten minutes and be ready to read War and Peace for some excitement after about half an hour. BE PREPARED; take books, music, your laptop (although no internet access), knitting (if you are more talented in a crafty way than I am), crossword puzzles, whatever. Just be prepared to be sitting there for hours at a time. And don’t worry, there are bathroom breaks!

The final machine is the weirdest, in my mind. It reportedly creates negative pressure in the abdomen (where the pressure is usually positive) forcing it to act as a suction for the veins and lymph system to suck stuff out your leg (Simone, I hope I’m doing your explanation justice here. All misinformation about this is entirely my fault). You lie down on a padded bed and place your legs in a metal tube that covers you to your waist, where material closes tightly around it. When the machine is turned on, this material tightens periodically creating a seal, and a vacuum occurs around your legs. I think this procedure is quite pleasant and I’ve actually fallen asleep during one session. This one only lasts half an hour.

Last up; the massage session. This doesn’t happen very often. In fact I’ve only had one so far but it was so relaxing! You enter a room that has an ordinary looking massage bed in it. Lily will un-wrap your leg – bliss! but also gross due to the total neglect of shaving for the past week, Ugh. Then she fires up a machine that would not look out of place in a Dr. Who episode. It also reminds me of that robot with all the arms that cries “danger Will Robinson!” Lily then proceeds to vacuum/lux/hoover (or whatever you call it) your leg. Honestly, that is what it feels like. Tiny little inch-squared vacuum-cleaner on the foot and ankle area, working up in steps to a 4-inch x 4-inch vacuum cleaner for the thigh. Whatever, it feels amazing!

And that’s it folks. Repeat for increasing lengths of time each day and you too should hopefully see some serious shrinkage going on. I was amazed at how much my leg shrunk in just two sessions. What a pity New Zealand has no lymphedema experts that I could find or I would have been onto this months ago!

Meeting the Professor

Shawn
Here's the thing about Genoa—it's hard to locate an address, especially if you walk from your hotel  for 'a bit of exercise and fresh air.' My advice is take a taxi unless you happen to be staying on Via Assarotti  where the Professor's office is located. 

My feet hurt because I have chosen to wear a pair of my new shoes. Not the wisest decision I’ve ever made. After asking 3 people, my sister, Shannon and I finally head in the correct direction. Fortuitously we stop at a sort of 7-11 and find the doctor’s office is just across the street. The street numbers are difficult to decipher. Some numbers are black and some are red. We are looking for Via Assarotti 46 black.  I’m telling you it was a miracle we found the office. After pressing the buzzer on Professor Campisi's name plate (why can’t you just walk in buildings?) we entered to find an iron cage elevator directly in front of us and a pharmacia on the right and an unmarked door on the left. So we just stood there and besides that we were tired. A women opened the door on the left.  'Dr. Campisi?' ‘Si.’   We thankfully followed her and waited no more than 15 minutes, which is a very enlightening 15 minutes. ‘Cured’ people come in with full-leg-bandages on and then the not so fortunate, people whose lymphatic disease has progressed. I’m glad I am taking control of my health.

Shan is my ‘health secretary’ and she takes her job very seriously. At first she said’ ‘I will just bring my knitting and sit outside in the waiting room. To which I replied, 'oh no you’re not, you are going to take notes with my computer and pay attention.’ It’s easy to say this when you are not only bossy but also the older sister. The doctor comes in and shakes hands. He speaks English fairly well, is fluent in French and of course Italian. It is good Shan is with me because I still have a few communication problems and she speaks both French and Italian.


Here the history of ‘fatty the leg’ unfolds as he reads the notes emailed from my vascular surgeon in the United States. ‘I will now visit you.’ I take this to mean the exam will begin and shed my boots (still uncomfortable) and my pants. I do this in front of everyone, as I don’t know where else to go. He leads me to a step stool,  and takes pictures of my legs with the macchina fotografica (camera) but not before he picks up all my clothes, and puts them into a previously unseen dressing room. Ok so that’s embarrassing. Next, I march over to your standard exam table where he does a lot of poking of my leg. ‘You have pitting, this is good, you are still at a stage where you will get the most benefit from surgery, you have IIa Lymphedema.' My previous doctor did not categorize my lymphedema and certainly did not recommend surgery. It's all rather daunting. Anyway, at some point, I started dithering which I'm liable to do, and that is when he became very emphatic and said 'surgery as soon as possible, ASAP.'


I left the office and promised I would call the following day. He has a very busy schedule and I realize he is making time for me because I happen to be in country and he is concerned. He is an easy man to like and I feel very comfortable with him.


 

 

Melissa

Now, I don’t know about Shawn but I was pretty nervous about meeting Professor Campisi for the first time. I, being quite the little geek, had read all of his research articles before coming and had been really quite surprised when he had replied in person and so promptly to my email enquiring about the surgery. I was expecting to hear from his secretary and had even signed myself off as Dr. Ryan (a title that I don’t use that often as it isn’t that necessary for my job at the moment) so that I would sound more impressive than I was! So really, I should have been prepared for the more than hospitable welcome that I got.

We (Dad and I) were ushered into Professor Campisi’s office and made very welcome. Unlike Shawn, I did not have a thorough history taken by the Professor, as I had already provided him with much of the information before I came. The more she mentions Type A personality, the more I look the other way and whistle. I just choose to think of it as being helpful…. Anyway, we talked about my results and how microsurgery held the best chance of a permanent remission of swelling in that leg. I really didn’t have any questions about the procedure; I’d already committed myself to it before I’d made the long plane trip and, as I said, read all the articles I could find on LVA (Lymphatic Venous Anastomoses – joins between the lymph and venous system to provide a new route for the fluid out of the limb) techniques around the world. Quite frankly, if he had asked me to stand on my head for a few weeks to drain the fluid, I would have done it!

Next came a quick examination to make sure that I was a good candidate for surgery (I think that’s what we were doing anyway). Despite Shawn telling me that there was a little changing room next to the bed, I promptly stripped off in the middle of the room when requested. Thankfully the Professor was too polite to mention that little faux pas.

For future patients, there IS a changing area in his office – it is right opposite the bed. However, if you do get changed in public, the Professor will very helpfully place your clothes in the little cubicle for you.

Now, not being a medical doctor, I can only guess at what the next tests were for; heart rate, blood pressure, breath sounds, and a quick look to see what the flow of blood is like through the major veins that run from the abdomen/pelvis through the legs and back again. It is important to have good flow in those veins; there is no point re-routing the lymph fluid into those veins if they are not strong enough to take the extra pressure. I guessed from Professor Campisi’s face that I had passed these tests. Whew!

Next came the unexpected bit; being introduced to my first set of multi-layer compression bandages. Yes, this happened at the end of the first meeting; I guess the sooner you start the treatment the better.

For future patients: be prepared for the bandaging and bring either a skirt (kilt for the boys) or very large and stretchy pants. Oh and shoes that can accommodate the Michelin man-sized foot you will have. Do NOT be like myself and wear a pretty dress and lovely boots or you will find yourself leaving the clinic barefoot and in your underwear. Of course, this is not the only time I have paraded around the clinic in my underwear. I’m afraid that I may be giving the impression that New Zealanders do not like to wear pants. Oops.

The bandages have been an endless source of fascination to me. Despite having had them changed several times now, I am still not certain how many layers there are. I lost count at about seven; little crepe bandages around each individual toe and the top of your foot; a light stocking up the leg; foam wound round like candy stripes up the leg; several layers of cream coloured semi-stretchy bandages, starting tight around the foot then loosening a little as they go up; um, a thick woven cotton tube covering the whole leg; then a light white stocking over the foot up to the knee; and plenty of helpful medical tape to hold it all in place. Expect your entire limb to double in size anyway!

That’s all for the first meeting. I think it took about two hours in total. Next up – the pre-treatment process…

Planning a Month long Stay in Genoa?

Shawn
I discovered Professor Campisi BEFORE I came to Italy and decided to contact him AFTER I arrived on the off chance he could see me. Why didn’t I contact him before? I too am stymied by that question, so I’m blaming it on Meno-fog. I blame most things on Meno-fog.

Professor Campisi returned my email within 24 hours and I saw him three days later. The trains may occasionally run late here in Italy but not Italian medical system—at least not Professor Campisi’s office. My sister accompanied me to the appointment where the Professor interviewed me extensively (fat leg history) and proceeded with the medical exam. End result being Type IIa Lymphedema.  He advised a treatment protocol to take place ASAP that included surgery. “I am at your disposal.” He said. I don’t know when, if ever, I’ve heard a doctor/professor say those words to me and in a very urgent yet sincere manner. Certainly enough to give one pause for thought. Right then I knew I would have surgery. Time to get my ducks in a row and tell my family.

Fortunately for me, I have a husband who is very organized. He changed my plane flight to leave a month later and started with the process of wire fund transfer for the hospital and Professor Campisi’s physician fees. The wire fund transfer for the hospital HAD to be done BEFORE I checked in. It was a signifigant chunk of change.  It was two days prior to the Thanksgiving holidays. And then there is the matter of insurance.

After only three (push the following button if you want to speak to . . .) I spoke to a real person at the insurance company. He took many notes and entered them in my file. I may have 75% coverage. This was good news except he said something about appropriate codes for tests, etc, for insurance company. Are you kidding? I’m in freaking Italy. Was there such a thing as transcontinental insurance codes and if so were they in English? This required a visit with Daniela, the head honcho in the clinic and the Professor’s wife and if I may say, a SAINT. Daniela—also a Type A personality, what luck! Two organized people on my team. She immediately called the hospital to get an estimate of the hospital charges—in English. Professor Campisi composed a letter for the insurance company describing my diagnosis. This was accomplished within one day. Like I said, I’m loving the Italian medical system. Daniela faxed all paperwork to another very sympathetic person at the insurance company. Now I just had to ready myself for the hospital and my month long stay.

As stated earlier, I didn’t plan this BEFORE I arrived in Italy. If I HAD planned this earlier, I would have brought.

1.   An adapter for my computer, which varies from country to country.

2.   Lots of movies to play on my computer.

3.   Italian phrase book.

4.   Stretchy pants. Leggings will do but buy leggings that are bigger than your usual size. Sweat pants are too hot and I don’t mean that in a sexy way.

5.   Long skirts. Think ‘boho chic’ or ‘60’s hippie’, whatever works for you. For you men out there, go kiltish!

6.   Long tops to go over your pants/skirts, unless you don’t mind walking around in your undies while traipsing from machine to machine in the clinic. BTW—no evidence of thong underwear thus far, it’s just not done.

7.   Melissa and I found an orthopedic store and bought two pair of orthopedic shoes. One size 9 or 10 (40’s Italian sizing) and one size 7. How fortunate we were the same size with opposite legs needing surgery. There is a nearby shop with all sorts of orthopedic stuff in it.

8.   Knitting—so I’m not a big knitter but I’ve lots of time to practice while in prison the hospital followed by therapy sessions in the doctor’s clinic.

9.   Headphone and iPod.

           A kindle or some sort of e-reader.

            Decent pajamas or at least a bathrobe to wear around the B&B.

Thanks to my sister, I’ve cobbled together about two days worth of stretchy clothes, but I must say, I’m no fashion plate, not that anyone cares. BTW—one of the thin bandages that the doctors use for wrapping the leg makes a great hairband!!

How Not to Prepare for a Month in Italy

Melissa 

Decide you are going to go to Genoa, Italy for a month to have treatment and surgery and make that decision a mere ten days before you go. What’s the matter, you like pressure right? Let’s leave the tiny matter of how you will pay for the trip aside; thanks to very generous relatives that is resolved after a couple of days and will be sorted upon your return. Okay, make a list; flights, accommodation, packing, time off work (you still go to work for that week and a half; you’ve got client commitments), insurance (including house insurance to be sorted while you’re away), foreign money, inform family (this will take up many, many unanticipated hours), get checked to make sure you’re safe to fly, oh, and then remember you’re committed to a paddling trip in Nelson for a race for the middle weekend. Remove three days from your schedule. Remind yourself that you like pressure and sleep is over-rated anyway.

Enter the many, merry, mishaps along the way. Find flights online – sorted! Discover that your credit card has a limit on it and will not allow you to purchase business class tickets. Have minor meltdown in small café on the way to Nelson. Be saved by teammate whose phone you use to call travel agent to book flights on your behalf. Discover that if you transfer money to an out of town travel agent your bank will ring you to see if you really want to do that and twice more when you transfer funds to Italian surgeons. Nice to know! Arrive in Nelson, race – not your best effort due to above lack of sleep and minor meltdown but still third is nothing to be sneezed at. Weekend is lovely and peaceful as brother is running interference with the family and fielding phone calls. Remind yourself to buy him something nice in Italy.

Final week: Gradually check off each item on the above list. Some things are easily sorted; thanks to friends who have travelled before and provide useful things like power adaptors and travel clotheslines. Some take more time and phone calls and more patience than you feel you have. Don’t worry, you will get there in the end. Final night, pack: passport – check, laptop – check, useful travel things – check and feel smug about these; clothes – check.

1. Things that you did not pack and you will wish you did; skirts, more baggy pants, more pictures of New Zealand to show people, and your mP3 player as the laptop is not always practical with its short battery life.
2. Things you will take that are of no use to you whatsoever: most of the travel stuff you were so proud of yourself for (you can dry underwear on the heater in the bathroom, which also has plenty of towels so your travel ones are not needed), pretty tight-fitting clothing, and your so so cute blue argentine knee-high boots (go and give them a quick pat in the wardrobe. Poor lonely things. Go on, there’s no one watching).
3. Things that were an absolute "save the day" item and you would consider selling your soul for if you ever repeat a trip like this: your laptop and its internet capability, House DVDs that play on your laptop and remembering to bring headphones, your camera (because your Dad’s will die on the trip and you can give him your to use to keep him amused while you are under house arrest after the surgery), your Dad (hunter gather, chef, bag carrier, and endless source of amusement as he refuses to speak Italian and has many misadventures while shopping. Not so good as a nurse and managing anything related to illness but don’t worry, the universe will provide other people for that role), and a book purchased in the airport under your usual rule of the most number of pages for the least amount of money. Mr Stephen King, your “Dome” story is a great hospital read. Hats off to you.

Then your adventure begins; more than 30 flying hours later, one expensive airport taxi, one moment of over-sleeping in Milan due to the 30 hours flying, one missed train but free breakfast in hotel, one moment of panic when finally in Genoa and trying to get to hotel (okay, more than one moment), one rush of pride at mastering the metro with only a handful of Italian words, one lovely pair of English girls who provide a map of the city, one short walk to hotel with only a few mis-turns on the way and one eyeblink later and you are safely ensconced in the B&B with your new friend Shawn ready for the treatment to begin. And you were worried it would be difficult? Pshaw!

Introduction

Welcome to our blog!

Written in real time, this blog diaries our experience at Professor Campisi's clinic for the treatment of lymphedema in Genoa, Italy. It is intended to be an humorous account of our daily activities and to capture all of the 'beginners' mistakes we made along the journey.

If, however, you would just like some information about lymphedema and microsurgery or about how to become a patient of Professor Campisi's, please click the links on the sidebar.

We hope you enjoy this blog and don't forget to leave a comment or ask a question,


Melissa and Shawn