Neuronata-R Visit 1 Experience

Visit 1 Preparation

Three to four weeks prior to first appointment the hospital coordinator requested answers to a series of questions, including flight and hotel information. It is the clinic’s policy to arrange and include the cost of four taxi trips each visit:


  • From the Incheon (ICN) airport where international flights to Seoul arrive to your hotel on the day of your flight arrival. 
  • From the hotel to the hospital the day of admission 
  • From the hospital to the hotel on the day of discharge  
  • From the hotel to the airport on the day of your return flight 

Your travel companions can take these rides with you at no additional charge, and note that tipping is discouraged in South Korea. 


The coordinator also asked about my meal preferences on the day of admission for which she supplied a foreign menu options sheet.


The name of my primary caregiver was also requested. It is expected that the caregiver traveling with you will be providing the bulk of your care, including feeding, showering, restroom, and dressing/grooming assistance. Direct nursing care may be less than one may be accustomed to in a typical American hospital facility.


My language translation preference was also requested, but interpretation services are currently limited to English and Russian only. There is no additional charge for this service.


The coordinator also inquired about my current physical abilities so she could best prepare the hospital equipment and transportation.


An estimate in Korean Won (86,950,000₩) and U.S. dollars for the treatment costs was also provided. We were given the option to either pay in full up front ($77,427) or make two separate payments, one before the first visit ($35,688) and another before the second visit (to be calculated after the first). The cost for each option was based on the estimated cost in Korean Won converted to U.S. dollars.  For payment in full the exchange rate used in the estimate ($1 = 1,123₩) was the average daily rate over the past 4 months, and for the split payment estimate the exchange rate ($1 = 1,130₩) was the average they calculated over the past month only. It should be noted that the actual hospital bill may be higher or lower than these estimates and patients are required to pay the difference or receive a credit based on the actual exchange rate at the exact time of the wire transfer. 


We chose the split payment, and our contact prepared an invoice and wire transfer instructions that my wife took to our local bank branch office. The person requesting the wire transfer must be named on the account the funds are being drawn  from, and expect to have to do this in person and pay a fee- our bank  charged $50. The transfer should be initiated at least a full calendar  week before the admission date as you will not be discharged from the  hospital during your first visit if this payment is not received. Our transfer took just two days and our contact confirmed receipt two days after the transfer. The exchange rate at the exact time of the transfer ended up being $1=1119₩. I would bring a copy of the transfer receipt with you on the trip just in case. 


Before traveling make sure to contact your credit card companies so they know there will be foreign transactions on your cards. I have found that credit cards offer the best foreign exchange rates, even when including the foreign transaction fees of about 3%. We got a poor exchange rate for cash/paper bills at the Toronto airport before departure. I've heard ATMS are a good option so I will try that on visit 2.


Don't forget to buy a wall outlet converter for powering electronics!


I recommend contacting the airline you are using to let them know that you require a wheelchair before your flight. If you mostly use a walker or cane, now is not the time to be a hero. Any international airport is going to be huge, and the last thing you want to do is fall, injure yourself, and jeopardize  your entire trip before even getting started.

21st Floor at Hanyang University Hospital

21st Floor at Hanyang University Hospital

Visit 1 Travelling

I traveled to Korea with my dad and a cousin. I brought both my non-powered wheelchair and my rollator, but I stayed in the wheelchair as the rollator doubled as a decent luggage cart until check-in, where it was bagged by the attendant and put in the oversize luggage cart. I have to say that the biggest (and unexpected) benefit to wheelchair use is priority passage through  check-in, security, and customs. The airlines and airport staff will  bend over backwards to assist you in the airport  and on the plane- let them! Since I brought my own wheelchair, I was placed first in line to board the plane (at least in the economy  section) and the passengers using the airport-provided wheelchairs were lined up behind me. At the end of the gate I was transferred to an aisle wheelchair and my own wheelchair was  gate-checked on to the plane. The attendant then brought me to my seat, which was an aisle seat in the middle section of the plane. Since our row had three seats this worked out, as my traveling  companions could easily exit the to the other aisle without having to  get past me. 


A friend had suggested trying to get a  bulkhead seat (right behind a different section) for more legroom but  those seats were not available, and that ended up being OK as that is also where the baby bassinets go. It is a 13 hour flight so there was plenty of crying! The noise-cancelling headphones were  another suggestion that DID work out. There are reasonable cost units  available online for about $50 and up. I tried to get up every 1-1/2 to 2  hours to minimize stiffness and reduce the likelihood of getting a blood clots/DVT, of which I already know I am at an elevated risk.  If the person in the seat in front of me got up, I would too by grabbing on to their seat back. I would also use the  armrest of the seat across the aisle from me to pull myself up. Luckily my knee strength still allows me these options.  The biggest challenge for an ALS patient on a plane are likely to be the restrooms, of course. I tried three methods to get there: requesting the aisle wheelchair, holding on to seatbacks  as I walked down the aisle, and finally holding on to my cousin’s  shoulders as he walked in front of me. In the end using the aisle  wheelchair felt the safest as even the slight plane movement during our smooth flight was enough to make me feel more unsteady than I felt comfortable being. The restrooms on the Boeing 787 were  just large enough to fit a second person standing, if necessary, but  would be a challenge for two people and the aisle wheelchair. That may  need to be tackled on a future trip. 


Upon arrival in Incheon we had to wait until everyone else deplaned before using the aisle wheelchair to exit. I was transferred to my own wheelchair at the gate and pushed through  the entire airport by an attendant. We bypassed the regular  long lines for customs and immigration and were processed quickly and efficiently. We then went to baggage claim where my rollator was waiting on the oversize luggage cart. We piled our checked bags on to the  rollator and then moved to the exit. Our taxi driver  was awaiting us with my name plainly visible on a sign. He helped us in  to his minivan taxi which did require a decent step up.  If you need a  fully accessible roll-on transport van let the hospital coordinator know  ahead of time. The trip into Seoul will  take 1-2 hours depending on traffic and where your hotel is, so you may  want to hit the restroom and grab a drink before getting into the taxi. 


We stayed at the “Stay Seoul Residence” which is the closest hotel to the clinic that I could find. I can’t recommend it, however, as despite being advertised as handicap  accessible it shouldn’t be considered so in any capacity. The only entrance has about seven steps and our room had a 3 inch step immediately inside the entrance. The rooms are small and the bathroom was tiny with a tall  threshold, as it was actually a shower room with a sink, toilet, and a shower wand attached to the sink faucet. Although it was a convenient walking distance down a relatively steep hill from the hospital (and very inexpensive) we will be looking for another hotel for trip 2

Flying to Seoul

Flying to Seoul

Visit 1 Hospital Stay

The next day another taxi met us at  8:30am at the hotel and took us up to the hospital. We met our contact  right at the door and she brought us to the clinic office. We also met our interpreter, Anna, who would remain with us for the majority of that day through discharge the following day. After watching a short  video on a tablet that explained the process and set the expectations for the treatment (cutting the progression rate in half for a few  months), and reviewing my progression timeline, family history, and current ALSFRS-R score, I met with the head of the  clinic, Dr. Kim. I am reasonably good at understanding accents so I  could understand his English fairly well, although my companions had  more difficultly. Overall I felt positive and confident with the team he had there, including the doctor who would be performing the BMA (bone marrow aspiration). 


My room wasn’t available yet so our  interpreter bought us around to a few areas in the hospital to take care  of a few routine tests prior to the BMA. These included some blood  draws, x-rays, and an EKG.  These were done in a very efficient  manner, perhaps seeming rushed to the typical American method.  The  x-ray required me to lie on a hard table, which may be more challenging  for more wheelchair dependent people. By that time it was lunch so our interpreter brought us to a restaurant on the  hospital grounds that served a variety of tasty Korean dishes. When in doubt, go for the bulgogi, which is a thinly sliced and marinated beef served in a broth with rice on the side- it’s delicious! By the time lunch was over my room was ready so we were finally  brought up to the VIP suite on the 21st floor. I had chosen the smallest room, which was clean and pleasant. The room includes a cot  for a caregiver to stay in the room, which is strongly recommended  (perhaps required) by the hospital staff. If you are only traveling with one other person you may even elect to skip a hotel room for your caregiver and just have them stay in your hospital room.  The bathroom (with shower) was a comfortable size,  although I think having a swing-in door was a poor choice. 


The BMA was scheduled for 2:30pm and I was given 25mg of the IV pain medication pethidine (Demerol) starting ½  hr. before the procedure. I laid on my side (my choice as to which) and curled up (though not as tightly as the intrathecal injection  at MGH) and then given a lidocaine shot at the incision site. The BMA  was performed in the room I was staying in, which I was surprised at as it was clean but certainly not sterile. My BMA for the BrainStorm Phase 3  trial had been done under general anesthesia in a full operating room. Collection of the bone marrow proved challenging as the doctor performing the procedure said I was depleted,  possibly because of my previous BMA, although he believed that was long  enough ago that I should have replenished by now.  He needed three extraction sites to gather 60ml,  which is on the low end of the 50-80ml that he would typically harvest. He got in contact with the manufacturing facility during the procedure to ensure that  amount was sufficient. I am adding more protein  to my diet as well as iron and calcium supplements to boost my marrow  production for next month and beyond. This is a big concern for me as I  may not wait a whole year repeating this procedure if it is successful, and apparently even that wasn’t enough. The  collection procedure took about 1-1/2 hours, about 3x the normal  length.  Pain was manageable, but I did request additional lidocaine as  the doctor entered the second and third injection sites. 


The most uncomfortable part of the procedure was the 6 hours I  had to lay on my back after it was done. They put what they call a “rock” directly under the incision sites, which were about 1cm apart, so my body weight would apply pressure to the area. The rock was actually  more like a bean bag that might be used in a  backyard toss game. It was as effective as it was uncomfortable though,  and there was hardly any residual bleeding.

 

I had dinner fed to me while I was  lying flat, which was tasty steak.  Expect better than average food quality and limited American and Russian menu options in addition to the Korean options.  After a Korean history and politics discussion with our interpreter I watched a movie on my tablet to pass the time. I recommend bringing one with some movies and shows already  downloaded on to it from home. Although there is very good WiFi, Netflix  will recognize that you are in a foreign country when  you are on it and will limit what shows and movies you can access. If  you’ve already downloaded some on a tablet you can watch them by turning  off the tablet’s WiFi connection.

Lunch before the BMA

Lunch before the BMA

Visit 1 Discharge

The best part about laying on a rock for 6 hours is how amazing you feel  when it’s gone! After a good night’s sleep and a filling American  breakfast I was discharged the next day. Our prearranged taxi took us to  the Days Hotel and Suites in Incheon, as I wanted to be close to the airport for our early  departure the next day.  The wheelchair accessible room was fantastic and the hotel was very nice. They have a restaurant right there, but we  took a stroll and popped into a little family-owned  place instead. There the people were as friendly and helpful as everyone else we met in Korea, and we had another good meal. The next morning we had breakfast at the hotel before taking a taxi that the  hotel arranged over to terminal 2. There is a shuttle  to Terminal 1, but Terminal 2 is farther away. The trip is only 15,000-20,000 won. By dropping the last three digits you can quickly estimate the cost of anything in U. S. dollars, making this ride about $15-20.  The flight home was uneventful. I recommend trying to sleep on the flight for 4-6 hours during the time when the place you are going to is also sleeping to minimize jet lag.  


Although this visit had no direct benefit to me, it was exciting to be laying the groundwork for my next visit and first injection!

Incheon at Night

Incheon at Night