Lymphedema Post-Op Instructions—Compression—Swimming—Compression

Professor Campisi is very explicit about his post-op instructions.

"You must swim everyday. You must use the pump twice a day and more if possible. One hour in the morning and two hours in the evening. Try to use the pump at the lunch also. Do this for six months."

Surgery for lymphedema is a very precise and delicate surgery. Professor makes it very clear in broken English that surgery can be done only once.

"What if there are complications?" I ask.

"There will be no complications if you follow my directions." He says in an insistent and forceful voice. I've noticed Italians get excited about a lot of things but even I admit that not following his rules would be disastrous. After-all, I live in the United States and he's — well, he's in Genoa, Italy. Somehow I don't think Skype would be effective for an office visit. So, I'm following his rules.

I wake up early (for me) and pump for an hour while checking my email. I'm then off to swim for an hour at the local athletic club but not before I visit the nearby Starbucks for a cuppa. Coffee does wonders for my swim stroke, although I must admit the coffee doesn't hold a candle to Italian coffee. I don't care if I don't get to sit down in the coffee shops in Italy, it's worth standing up with the locals for a good cup of coffee.

At the athletic club, I swim back and forth and use the kick board and my hand paddlers. I'm only missing a floaty toy. And for God's sake I have to remember to step in the shower before jumping in the pool or one of the 'sitters' will get after me. It's been know to happen. Apparently the people who sit in the chairs watching the swimmers have nothing better to do than make sure the swimmers follow the rules. Sheesh.

"Did you take a shower? You just got out of the steamer. You sweat don't you?" Said a very cantankerous sitter.

"I'm on my way old dude, I'm a rule follower you know." My sarcastic voice totally goes right past him.

"Thank you." He says.

Shit, now I feel bad. Why can't I follow the rules like everyone else? Well, at least I'm following Professor Campisi's rules.  Only two more hours of compression pump for today and six thousand hours for the next six months, however in this case, following the doctors orders is paying off. My leg is slowly shrinking day by day.

At Least the Nurses Were Nice

Shawn
Here's the thing about surgery and being a patient or paying guest in Villa Montellegro. And I do mean 'guest' because the staff treat you as if you were staying in a 5 star hotel. After your procedure is finished, you say to yourself, well that wasn't so bad but of course you are on drugs at the time and they haven't worn off so really you don't remember the stay in the hospital or the surgery or anything. And if you do remember, well then I'm sorry.

But before I get into the whole hospital stay, I want to express my appreciation to Professor Campisi and Doctor's Campisi and Boccardo who are the finest surgeons I've ever met and their care is beyond reproach. They care about the 'whole person' not just the precise beauty of a stitch. 


After surgery I experienced some pain as I was waking up. (This in itself was a bit unusual for me because I've only had surgery in the United States and both times was completely numb when I woke up.)  But then the drugs kicked in and it was all good. In fact I only had pain killers for the reminder of the day of the surgery and then not again. I just wish there was some sort of quick fix for staying in bed for four days. But there isn't. Melissa seems to remember three days in bed. For me, it was four days because I had surgery early in the morning so I count that as day one.

So you are confined to your bed for four days and able to eat a full meal on the second day. Of course once you eat said meal, you will have to relieve yourself. A catheter works well for number one and the dreaded bed pan for the rest. It's not good but it has to be done, especially if you want to eat some more of the tasty hospital food. Not kidding. The hospital food was very good—if you didn't order all white food or two entrees like I did. Not that a giant ball of fresh mozzarella, mashed potatoes and cauliflower are a bad combination . . . 


Day four brings release from catheter, drain (not as dreadful as it sounds) and standing on your own two feet—unless you keel over as I did. Don't get up in the middle of the night without assistance! This will bring extra nurses, blood pressure cuff, and lots of monitoring all because you wanted to walk to the bathroom which at one time was doable. Have no fear, you only have one day to go and it's not like you are in a torture chamber for goodness sake! Except I felt like I was in solitary confinement. Luckily my husband stayed with me the entire time. He went well beyond the call of duty when he scoured the city for English magazines and newspapers because unlike Melissa, I had no Internet. 


You are free after breakfast on day five. No one has to check you out! Just stop by the reception desk and check out. Take a cab back to your hotel or the B&B above Professor Campisi's clinic and take a rest for the rest of the day. Doctor's orders.

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

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!