Tiantan; the area where the hospital is located; means Temple of Heaven. After looking at the Google map of the area we knew we were close to Tiantan Park and the said Temple.
Saturday and Sunday; the PT room is close for machines cleaning, maintenance etc… I suppose some can also rest as I swear this is a hard job to do from 08:30 to 17:30 – Very Physical.
Thus we had the good ol’IVs in their plastic pints and suddenly all seems empty.. As an alternative I had hyperbaric treatment. It is not a kind of couffin where I could lay down and rest but…
I’ll try to describe. They fit a kind of inflatable suit on your legs ankle feet (each side separated with 4 cushions) and it inflate; deflate sequentially and alternatively roughly 3 times a minute.. Pretty strange sensation and due to the very bad shape of those parts in my body it was actually painful (I could not stand it on my right foot). It stays an hour and it seems like forever as you have to lay down.
But it finishes and as I’m not the kind to go back from adventure; I suggested we try a walk to the close Temple of Heaven.
First “Clash” with the caregiver: “too hot sunshine too far too dangerous too…”. Mmmhh.. Ok; I let him know he can get an extended lunch since afternoon was free of activities. It is the first (and maybe the last) time I see Beijing I will see as much as I possibly can of it.
We then pretend to the nurses we’d like to eat something outside (tough job but she finally believe ~or~ gave up) and out the gates we are… Mikalina must have that envy to see or experience things like me because we were accomplice in that ignominious crime of disobedience with the “well-thought-for-you-system” that characterize pretty well the beautiful country we are journeying in.
On the road (about 20 minutes pushing a wheelchair in the sununder the trees) the avenue is quiet; very few peoples, some bicycles, mopped, taxi-cabs and other vehicles I’d hardly describe but that fits in a cyclist-only lane. Beautiful trees border it and the road outside is not busy, there are cars; but nothing like I have seen on the TV about Beijing. But I haven’t seen much, so I can’t really say; just describing as honestly as I can.
There we arrived. It is big; huge. I will try to upload some pictures but it seems going for as long as the eyes can see. It looks really nice and well maintained. Unfortunately; we tricked the nurses for a lunch and as this is a “trial escape” we don’t want them to get suspicious. Therefore; we slowly retreat to the safe environment of the PuHua North Ward Room 17.
A bit later; our guardian came back and no one noticed. We bragged of course; letting him understand he’s chicken when a 20 years old girl can make what he said was “foolish”.
I rest my case but I believe he will have to adapt or spend his duty time alone sleeping in the room…
All is fine so far. I have got my fix of IVs, my PT and TCH acupuncture as usual.
I had a heart echography to reassure the Doctor that his ear-piece was really worn out. In fact I had a heart pounding chest in the morning but I blame the week-long constipation for it.
All results cleared the engine.
Real result of that complain was a purge given by the nurses to empty my intestines. I can not stay sit on the toilets therefore you may imagine the rest…
We had a short promenade and dinner after that, then sleep.
Morning was as usual; except I had to miss the PT session of 11:30 because it is my first MSCT.
It is very short and very long… Procedure to inject the stem cells lasted roughly 20 minutes; they picked me in the room at 11:00 and I was brought back a bit before 11:30.
Now the long part is that I have to stay supine completely horizontal for 6 hours…
They transfered me from my bed to a litter and we went to the Operating Room. No one else is admitted and pictures are strictly forbidden, so I can’t tell much of the equipments and of the way they proceeded. As for me; I had to bend forward, knees to chin (well; toward the chin). I just felt a subtle sting in the middle of my back for the local anesthesia and the rest was entirely sensation-less. Back to the room I watched the ceiling until 18:00 and then gradually sit back. I had the acupuncture session tho since it can be done either sitting or laying down.
I felt absolutely nothing like headache, nausea or other inconvenience already reported by other patients. As a side note; they said it could be different each time so I just consider this one ‘lucky’.
Just a 20 minutes walk later the evening; we ordered some Korean food which was pretty good from a small restaurant in the neighborhood.
And bed early 20:00 because our caregiver has to go home and to put me in it before. I try then to communicate but my handling of a mobile in the bed tend to force me reading e-books instead. When Mikalina call it a day; she turns off the lights and I rest in Morpheus’ arms quickly…
The 3rd day was not a significant day. As usual I got my 2 IVs in the morning, Acupuncture at 14:30 and physical therapy the remaining time. Nothing special to notice; except many Doctors visit and the visit of the Neurologist in charge of my case.
She explained the partial results (some analysis seems to need more time). re-confirm the upper spinal cord plaques, insignificant spots in the brain and no any active inflammation for now; which confirm my thought that the MS is dormant for now and has been since few years.
What puzzles them is the degree at which I am disabled regarding the amount of injuries seen as plaques. According to them I should be in better shape. Another possibility is that the previous inflammations were very aggressive and made significant damages at that time and only partially healed. We probably will never know.
I’ve got a chronic UTI (Urinary Tract Infection) which is due to my long use of catheters and an hyper-thyroidism probably due to the use of medications such as Prednisone or other anti-inflammatory.
Tomorrow I will get the first stem cells transplant via a needle in the spinal cord. I am ready and I feel in capable hands.
DAY 2, July 4th
I was awake around 6:30 as usual but tried to stay focus on what I’ll have to tell or ask. I was put on bed the Monday with interdiction to eat or drink after 00:00 for blood tests and urine / feces collection. Thus I waited; but right after 7:20 a nurse arrived and draw an handful of tubes for diverse testing or analysis. I get 2 IV in the morning and was given 1 of them right after that. It is a small one and lasted about 20 minutes only.
An abdomen echography was scheduled at 9:30 and lasted roughly half an hour. As I can tell they looked liver, kidneys, bladder..? And perhaps more.
I had right after that an MRI to rescan my spinal cord which wasn’t detailed enough on the scans fro TaiDa Taiwan.
Unfortunately; Mikalina was not permitted to get in exam rooms and anyway pictures are strictly forbidden in those areas. But except the frequency at which the exams/procedures are performed; it all looks like any MRI, echography and tests rooms…
I could at last have a coffee and small cake at 11:00 and after that go to the rehab/physical therapy (PT) room. For the past 12 years I have stayed days after days in my wheelchair and thus my legs are completely atrophied. Tendons, mucles, bones, joints… Each square centimeter that the expert touch is in pain, I wish we were 12:30 already 😀
Afternoon went slower, Acupuncture, another PT session (softer) and much talks with the doctors, telling again and again the story for each specialist I have seen.
Mikalina was able to go to the supermarket in the afternoon and brought the dinner along few things we didn’t bring with us.
After 5:30PM; we went for a walk but stayed in the hospital premises not to alarm the nurses…
Another point is that the caregiver that will help us 12 hours a day has been introduced to us. A sturdy guy; not particularly skilled either, but willing; that doesn’t speak 3 words of English. That still OK; people of good will do not care much about that. Mikalina’s Chinese is perfect so all is fine.
We went to bed early; I have been exhausted by all the PT and all the beds/wheelchair transfers. I have bruises everywhere; but I do not complain; everybody does his best.
The 3rd of July it is. “THE”Day. As we booked an early flight in order to arrive on the first day as early as we could; we had to wake up accordingly.
We arrive at the Taoyuan Int’l Airport a bit before 7:00AM. We utilized the usual Van Service which was on time. The Airport personnel was aware of our arrival and waited to help use registering and weighting the luggages. I flew in the past with China Airlines; the “real Taiwan Airlines” and always have praised their services but this time was really Premium! I can not tell how much good care they took of me and my Daughter Mikalina who accompany me for this adventure. Wheelchair from the counter to the plane’s seat. Since we arrived first they had plenty of time to accommodate us with all we needed.
The flight was hyper-smooth. At this time of the day most voyagers continue their sleep during the 2:45 hours of the trip from Taiwan to Beijing and all is quiet and comfortable. Both of us were too excited to sleep tho and we watched a movie; listen to radio or read some e-book on our phone. The seats in the plane are a bit tight for me but for 3 hours it is not of major concern. The Economy Class of a 747-400 as they all are.
At arrival; the same care awaited us and we were taken from the airplane seat to the exit door by the airline/airport services where my own wheelchair waited, extracted from the cargo along with our luggages. The airport of Beijing is huge and between the terminal and the luggage kiosk there is a ~5 minutes ride in a transit system (on tyres by Siemens for the curious).
At Taoyuan departure as well as at Beijing Arrival; we were passed throughout the “Diplomatic Doors and Checking” so all those procedures were very fast and without any bump.
Temperature was of 28ºC in Beijing. No blue sky, a kind of ‘low ceiling’ but I can not determine if it was haze or pollution. The Coordinator of PuHua Hospital (Kathy) was waiting for us as promised. We got to the bus where I had some difficulties because I suppose the fact that I even cannot stand was forgotten and it has been necessary to haul me in the back seat. The driver was skillful but not particularly strong so it has been a bit hard. But well, small issue. Ride was less than an hour, we arrived about noon at Tiantan Road; PuHua Hospital. I was unloaded from the van by a much more trained man and we were directly lead to the room.
Kathy left us for an hour to rest and cool down; wash a bit and take refreshments. Around 3:00PM; we have been introduced to some personnel; nurses and care givers, some administrative talks and papers. After that; the Doctor saw me for a brief talk, just the premises and a general layout of what was gonna happen to me.
I have been seen by 3 neurologists, 2 chiropractors, 1 TCM Doctor and I got my first acupuncture treatment: needles in the arms, legs and belly.
It quickly arrived time to eat dinner and Kathy helped Mikalina (my Daughter) to find a very close food stand where she bought us each pork noodles and we feast on it. We could connect directly to the public wifi of the hospital but in PRC China all communications like Facebook; Google, Line are banned so we had to reset many communication channels before being able to connect. But I will try to make a separate post about connecting and computers.
Emptying luggages; re-insuring friends and family and we were ready for the start of the whole stuff: Day +1 – Next time…
It was a very nice evening, cozy but charming. The dinner made by the Belgian Chef Kevin was delicious as usual; Carrot Soup served first and a choice between Bourguignon Beef or Bouillabaise after. Dessert and coffee; all excellent. The variety of drinks at Glory Fusion is legendary in our small community; so we had plenty of choice of wines, beers, or liquors.
The real aim wasn’t to really raise money; tho we did. The gathering was more a ‘family’ reunion with close friends and those who wanted to have a drink and wishing me luck before July 3rd take-off.
Attendants List: Bénédicte Lin, Benoit Massé, Bernard Berger, Bruce Deng, Claire Glorieux, Jean Pignon, Jeff Yang, Mikalina Jurgelevicius, Nathan, Philip Chan, Ray and an anonymous kind couple who join us during the event.
List of Attendants; thanks for their Generosity, Kindness and sense of Humanity. I am Humbled by So Much Good Will and Love,
Allan Patterson, Allen Lu, Andrew Page, Anthony Van Dyck, Athena Lien, Aurélia Autret, Bénédicte Lin, Benjamin Harvey, Bernard Berger, Bruce Berkman, Bruce Teng, Carlton Harris, Cathy Chin, Chris Teunissen, Claire Glorieux, Constance Chao, Dale Holmgren, David Chard, Douglas Rapier, Duli Chang, Duncan Wagner, Eric Hong, Esther Lee, Evelyn Philbrook, Gail West, George Yen, Henry Wong, Jack Whiteford, James Chard, James Thomas, Janet Farn, Jason Su, Jeff Yang, Jennifer Feng, Jim Klar, Jim Mehren, Joël Cicéron, John Brebek, John Hardyment, Jon Hodowany, Jorie Wu, Josephine Chen, Joshua Brown, Karine Pénot, Kish Harkishin, Larry Fan, Larry Philbrook, Lisa Meyer, Marc Sancho, Marc Van Lommel, Marian Angele, Mark Howe, Matt Cleary, Mélodie Wu, Merritt Croker, Michael Boyden, Michael Lien, Mikalina Jurgelevicius, Nicholas Gould, Patricia Kortmann, Pats Chard, Peggy Pai, Peter Kurz, Philip Diller, Queenie Huang, Richard Jones, Richard Murray Nobbs, Richard West, Rik Van Droogenbroeck, Robert Campbell, Robert Lee, Robert Marshall, Robin Winkler, Sandra Hong, Sandra Hung, Sandra Ko, Smith Liu, Stefan Schulze, Stephanie Huffman, Steve Smith, Suzan Babcock, Tammy Turner, Thomas Kuiper, Todd Lawrence, Trent Clowater, Vanessa Van Dyck, Wan-Chao Chang, Will Barnard, William Brekke, Wilson Ko, Winnie Wang, Woody Meyer, Yasung Chuang
Bayshore Pacific, British Chamber, C.P. Yen Foundation, Engaging Minds, Rotary Club of Taipei, TBLF, Trenchant Tech