Day 15 – Working Harder

This is the last week. I must work harder because the results does not meet my expectations. I have had this stupid headache which (it’s my opinion) induced weakness Thursday and Friday. Those are many precious PT hours where I could have done much better.

Awaking was a bit hard; fatigue I think after fresh air, sun and travel by van/bus. The rash that started yesterday is getting really itchy! I don’t know what started it but MAN! I’d love to have 10 arms and hands to scratch myself…

My IVs fix dealers are here earlier this morning. No wonder; Doctor have to pass by. Actually DoctorS… Three of them; Doctor He and Dr Doctor and her collegue. I will try to get them in pictures and identify them. I have always been bad with names and faces; then they hit me with Chinese; hopeless…

Previous days have been discussed and I made them aware of my feelings. They do not seem to think the same way. They probably want to sell me few more weeks but this is not in my short to middle – term plans.

My plan is drawn since day 1. My last week backup plan is to double the efforts at physical exercise; get botox injected in the ligaments to soften them; Pain killers to let them force on the knees and other ‘jammed’ joints and 200mg of testosterone (20mg Heroine would certainly do too but I doubt they deal it openly, I am not rich enough). Hormones will give me the extra energy I feel I miss during exercising.

They ~really~ don’t seem to like it…It is a bit invasive; it might be painful; it is not in any protocol; we never did that, etc I think I heard that bell’s tone somewhere before… I am at a loss when I see hesitation. I must be at a such desperate level or somehow out of my mind. For my side of the story; I would say I am the free guinea pig (We even pay for it) and it makes sense when you waste most time trying to educate yourself throughout all available means. They probably are scared to slip out of their guidelines; afraid that would somehow influence the flow which they know best… I have no idea and answers to the questions like  “Why wouldn’t you do it?” remain evasive at best; ignored mostly. “We cannot make a blood draw right now because we do not know if the Stem Cells IV are modifying any of the basic values; as we did not panel the needed analyses when you arrive. (sic)”. It really looks like they try to drown the fish, for me, but again; who am I to contradict that. It just seems odd to me that they would not know if their proceeding does influence ‘any’ particle of my body but hey! “Everyone’s different” Hahahaha sure; can’t argue on that.

A dermatologist followed shortly seeing my rashe and decreeting it was the hot day and sweat allergy, nothing serious and gave me cream. At least it itches less, let’s see how it evolves…

I really gave my whole in the PT sessions and even acupuncture was restful this time. The William Tell of Chinese Medecine even introduced few points to me; along with needles-proof.  Four needles in the frontal bone of the skull, more painful this time. Don’t laugh; true: when I bite it feel pain in the middle of the head with those needles, and if I swallow. But well; even getting better ooks like crossing the path of pain.

Nothing compared to my knees anyway. Second session of PT was also intense and I swatted profusely; I was still breathless when back in the room.

I had a good and “oh wow” refreshing shower. Since I cant help much myself in the shower; the caregiver does assist and I was clean head to toes… Felt good.
AND hungry! Damn! I need to eat… Good disease, use to say my Mother when I was a kid. We had ‘doggy bags’ from Sunday and I ate all that was left as beef, beans with chili, spinaches and garlic along with a kind of steam thin pancake you get almost anywhere in Asia.  Thanks Heavens and all the other good beings of this universe, I’ll die with a full belly 😛

Early to bed; but strangely difficult to fall asleep despite the Stilnox sleeping pill… I browsed FB and internet until… Rrrr zzzzz….

Day 14 – A Sunny Sunday

Sunday morning. I obviously have been pretty tired by the Saturday excursion because I went through the IVs while mostly sleeping… The coffee makes me a bit more aware of the situation right after.

I got the Hyperbaric suite and I try to drown myself in water to make sure the headache; if it comes; will be light.

We asked the van/bus to pick us up at 10:00AM and there it was. Same truck it seems; different driver. The driver was also as smooth as the previous one. We have taken a serie of highways, freeways and no any small road; there is an exit right at the Juyongguan (Juyong Pass) Site of the Great Wall.

I haven’t made much kilometers on the freeways or city inner roads, but I have to say that the Beijing area traffic is smooth; drivers looks educated and respect regulations as far as I can tell. It is not Japan; but it is not what we often see in videos of crazy driving in China… I might just be lucky but I report what I see.

We arrived a bit before noon. Traffic was not heavy; a bit jammed at a pay toll. Strangely; there is an access to a freeway to Lhasa (Tibet) and the other side to Hohhot; Capital of the inner Mongolia autonomous region. I guess it goes further to the Mongolian town of Ulanbatar and perhaps further. It is funny to notice that the drivers (both of them until now) do not know what is at the end of the freeway; just that “it goes far in the North”…

The place is splendid. The sun is with us; but the pure mountain air and the stronger wind makes it sweet and warm. What a beautiful day.

I was able to stay on the plateform that is a junction of a descending path and of an ascending pass (I know; it is called in the middle). I watched the people leaving the stairs in front of me and I watch them getting smaller and smaller as they climb the “stairs” that lead to the top tower of the pass. I spot a well-fit guy with a very visible orange shirt and I followed him going up for more than 30 minutes. He did not make it to the top; turning back at about 70% of the full ascension. Perhaps he was late, or tired, or pissed… Or all at once; who knows…

Mikalina tried to go up but was back after the first fly of stairs. She described the steps as being sometimes higher than her knees height. We are now sure ancient Chinese Guards of the Great Wall had strong legs.

Tho I could not go round the place the view in itself was gorgeous. Many tourists; it was Sunday. I guess if all people would paint their country on a world map; a huge percentage would be covered. I distinguished Germans, Australians Sri Lankans and Egyptians who arbored their nationality on their gears. And many others; the anecdote is that the Russian patient I met at the hospital arrived; also in a Van/bus; as we were leaving the place.  I will also make a separate post for the Juyong Pass with most of the pictures we took.

Mr.Yang has been again very useful for this trip. We head back to Beijing and stopped by at a restaurant because we were pretty hungry. We found a nice place but it was on the second floor. Our driver talked to them and an army of waiters grab my chair; went up two fly of stairs to land me in the restaurant.

Great food again. The Goddam headache started again when we were on the road back; but I was thankful we made it up to there. The traffic was a bit heavier entering Beijing; but nothing serious, no any jam. Just a lot of cars bus. Very few construction trucks compared to Taiwan but they probably have different regulations for working hours traffic etc…

I again put myself in bed when we arrived and had an extra pain killer for the evening. I did not get an extra IV of Sodium Chloride this time. It was probably un-necessary.

I also started a rash in my back and my front arms; the nurses said they’ll ask the Doctor to see me first thing in the morning.

And I fell asleep again like a baby…

 

Day 13 – Temple of Heaven Re-Visited

Note: I posted earlier with a mistaken name of Summer Palace. My apologies….

Saturday morning; 6:30. I try to raise my head and it feels ok; I dont know for how long tho. Mikalina woke up; Mr.Yang arrived; cleaning Lady passed by and my favorite IVs freaks pointed their noses early: we mentioned everybody that we will re-visit the Temple of Heaven – hopefully – deeper today.

As PT rooms are close; I had the Super G-suite which massage feet and legs for an hour until 11:00. Then our Needle Geek (acupuncture Doctor) came too; seemingly happy to pierce here and there and even in the plain top of my head “for the headaches” as he said… All went just Ok; I felt something was wrong…

We ate, I tried to start sorting some pictures; as we were waiting 3:00PM to leave; a bit after the sun peaks in the sky. And … Boom! Headache… I had to ask to be put to rest an hour in my bed; took a pain killer and fell asleep almost right away…

At 3:10 I had an emergency; emptied the full length of my intestines and right away felt ways better. The headache was still there but I decided it will not bare us from seeing the Temple of Heaven which is now hanging like a challenge.

Mr.Yang pushed me all the way. He has been on that day a real charm, very willing to show me every corner, even considering carrying me up the stairs of the temple.

Kathy (the coordinator) also planned to meet us and we went four of us around this beautiful place; amazement from amazement in architecture, gardens, a pine trees liitle forest, a hallway in white marble.. But I’ll make a post separated when I have time.

It was about time we came back; around 6:30PM; my head started again to be pretty painful and again I was desperate to be be in good shape for the Sunday trip at the Great Wall.

To be sure to be in shape I went directly to bed; swallowed pain killers and lots of water and put my head to rest.

Fresh air and the sun put me into Morpheus Kingdom faster than I thought it would.

Day 12 – Second Friday

The 14th of July: “Allons Enfants  de la Patrie!” – French National Day. As a native French speaker and being born 1 hour from the French border; those are dates I can’t miss.

Another reason I won’t forget for a while is the persistence of the headache that already occupied all my attention yesterday Thursday. I woke up ok; but a bit battled by yesterday evening.

Nevertheless; because I was awake and wanted to have my day as well as I could; I used the darn same protocol and decided that I’ll sit in the wheelchair instead of staying in the bed not really knowing if the headache will restart; since it is triggered by me raising my head.

Breakfast, IVs were ok, but not brilliants. First PT session was hard; painful and I don’t know if it is related and apparently no one know for sure. I went back to bed because I really wanted to get over that headache as we wanted to go to visit more thoroughly the Summer Palace tomorrow Saturday. It still close to here and this time we persuaded the caregiver to come and help.

Acupuncture, and afternoon session of PT; again harder, I am a bit pissed since I follow all predicaments of the Doctors and Nurses and it does not really pay. We met a Russian Gentleman who came also to be Stemcelled’ but my Russian being as poor as his English; we made acquaintance via an Armenian in Chinese hahahaha – Don’t try to follow; I’m lost myself…

So in bed early, lots of water, pain killers, sleep early. I must be OK for the week-end! We want to see the Great Wall too; it is very close (75Kms) and the van/bus is really a delight, cumfort and price and facility.

Day 11 – The Bad Day

I suppose every journey has its bad moment. My bad day was Today (I hope there wont be any other similar or even worse) so get through it.

I woke up normally; nothing abnormal nor any complain I could make. I had the usual; coffee, IVs Cocktails.
The first bad news arrived: PT Doctors have talked to Osteopath Doctor and Neurologists and arrived to the conclusion at mid-term that there is very little chance they can re-align my knees; legs and feet within the allocated 3 weeks; it would need much more time and efforts; unless a miracle. The other option is surgery on both knees to reduce the encumbering growth of cartilage and possibly bones. It is difficult to judge without an XRay but we cant do that as there is a risk the rays might kill the stem cells freshly injected.

Furthermore; surgery would certainly cost quite an amount of money that I suppose would far out-weight my allocation. Thus; head to the PT and pray…

…and we went to the Morning Physical Therapy session.

It is after that session that I got a beginning of headache. Not too strong yet; but persistent in plain middle of the head. I suspected the day before lumbar puncture but needed more time to assert that.

The TCM Acupuncture session went through and it was still acceptable. I was about to call the nurses but finally decided not to and went to take some fresh air instead before going to the afternoon PT session.

I went to the PT session and there it hit like a truck… I finished with a massive headache and the first thing I did when it finishes was to ask to be put in bed; call the nurses and the Doctor.

Doctor He confirmed that the PTs sessions must be at the origins; too hard too soon after the lumbar injection.

Result was one more huge IV with Sodium Chloride Glucose and a dose of pain killers. And I had to stay in bed the remaining of the day…

Not much fun but I had a great dinner made by Mikalina; my Angel… and went to bed early

Day 10 – 2nd Lumbar MSCT Transplant

Lumbar MSCT

I am not sure it is on purpose that I get this after the MSCT by IV of yesterday but I prefer to think they must have a reason. My question was left without answer but I am not sure they understood or wonder why the heck it would be of interest to me…

Fact is: this time I negotiated a late injection in order to be able to have my PT of 11:00 in the morning. They moan a bit (for their lunch time I guess) but I really am desperate to regain strength and my best hope is that morning session with the tormentor of the morning PT’s session.

Since they already flex my way I kept the advantage and pushed to have  pictures of the procedure but they back off and only allow 1 taken by themselves and handed to me… Well; I will push again at the first opportunity.

This time was a bit more felt (not really pain) than the first one. The procedure lasted roughly the same amount of time – plus the picture taking – and was headed back to the room… Lay down for 6 hours and watch the ceiling while nurses come regularly to take records to populate their data charts.

It lasted until 19:00 and since our caregiver have to leave before 20:00 I stayed in bed; had dinner in bed.

Mikalina prepared a bolognese sauce that we ate with butterfly noodles. I could set the table to type few lines before bed but my knees are very painful in that position…

Day 9 – MSCT through IV

The Morning schedule has been chopped at the break part…

10:30 I was shown the tube with Stem Cells; I was given an introductory perfusion of saline water followed by the mentioned MSC. 3 minutes later a following and tube cleaning of saline water was fed.

I was then temperature/blood pressure/heart beat taken and allowed to attend my PT session under the condition that I will alert immediately the nurses if I feel any uncomfortable or else.

It all went smoothe and even I dare to only have water ’til the dinner I am pretty sure I could have eaten something.

Doctor He (one of the neurologist explained to me the different types and cultures of stem cells and their role by migrating in place of action but you will forgive me if I can not really recall all that; and also dont want to give false information.

As it is Tuesday, Mikalina was able to go to the supermarket and bought us food for the week; as well as few more needed accessories.

She made us a steak pepper garlic. Succulent – and I gulped a full cup of white grape, much better than what I use in Taipei. The food is incredibly cheap if you can stay out of hi-quoted restaurants or delicatessen shops. I will try to make a post of the living cost here.

Tomorrow; second MSCT via Lumbar Puncture; I feel lucky that I do have side effects until now…

Day 8 – Back to Earth

Monday. For the morning schedule; if you are not following it is exactly the same since day 2.

  1. 6:30 Wake up
  2. 7:15 Cleaning Lady pass
  3. 7:20 Mikalina wakes up
  4. 7:40~7:55 Mr Yang (caregiver) arrive
  5. 8:00 Coffee and Breakfast
  6. 8:30 1st part of IV (with 60mg Gangliosides)
  7. 9:30 2nd part of IV (with 10ml Dang Shen Chuan Xiong – for whatever it is)
  8. 10:30 Break and a snack (sniker, chocolate bar, doritos, ham salami…)
  9. 11:30 – 13:00 Physical therapy

The caregiver come back after his lunch at ~14:15.
Afternoon schedule is a bit laxer as to know:

  1. 14:30~15:30 Acupuncture & Chinese Medicine
  2. 16:00~17:00 Physical therapy
  3. 17:00 meeying with Doctor(s)
  4. 17:30 meeting with Nurses at their Shift changing

It may vary a bit but ‘normal day (as Today) are like that.

I also received the dates of the next 4 Stem Cells shots: 11th (Intravenous), 12th (Lumbar Puncture), 18th (Intravenous), 19th (Lumbar Puncture). Therefore Tomorrow will be the first IV with Mesenchymal Stem Cells of another type).

I must also precise that the morning IVs are seasoned with Glucose and Sodium Chlorate (saline water).

After 18:00 we usually take a walk outside the building, having a Coke or Coffee, then back to the room where I try to keep up with messages and blog. Meanwhile Mikalina prepare or go to fetch our dinner and before 20:00 I have to be put in bed because Mr.Yang leaves.

I also try to massage and exercice my arm, legs, joints at each opportunity because the most work is there I am convinced.

Day 7 – Sun and Conspiration

Sunday! I would prefer to not interrupt the treatment but since only my breakfast of IVs and the Anti-G suite for dwarfs’ legs we would have to spend our day doing nothing in the room… Shame… I somehow expected that so already Thursday I attacked to Doctor to ask the permission to leave the premises of the hospital to wander a bit further to thr center of Beijing. She said yes without much hesitation but warned me not to catch cold, be careful yak and yak yoddi yoddi…

Kathy and Mikalina become good  friends – there is only few years difference – and we included her in our conspiration against the gang of nurses in the mirador dominating the entrance of the ward armed to the teeth with thermometers, blood pressure gauges, syringes and clysters of all sorts and sizes…
Kathy, then, ordered the van for us with the idea of viewing as much as we could without running starting by the Summer Palace, then the TiananMen Square and if possible a bit of the forbidden city.
We almost did all…

The Van/Bus could take 8 persons plus the wheelchair so we invited the caregiver to join us but… “Too hot too far too dangerous too…” so rather than giving him the piece of mind that was ready for him I just let him do whatever he see fits his personality and he said he’ll wait for us in the room 😀 Ok; never mind…

Mikalina had set a good plan; it would have succeed. Few things we did not know. 1) the driver knew how to get to the Summer Palace but obviously did not know that it was not wheelchair accessible… We had to walk to another entrance at about 10′ from there.  he dropped us at 11:15 and would pick us at the same place at 13:30. It means we have already 30′ lost because of that and the queues of peoples at both ticketing booths. I was obliged to stay in the sun as there wasn’t a half square meter of shadow in sight; except on the terrasse which is – you guess – not accessible by wheelchairs.

Finally tickets in hands we visited the Summer Palace and I will make a separate post about it. Fantastic, grandissime, huge as in “very huge” and beautiful. I really wonder sometimes about that… We were told one needs 6 hours to see the whole Palace but I honestly believe no one can make it all in less than 2 full days…
At 13:30 Mr.Gao waited us and we get back in the bus thanking the Benz company to have provided this model with air conditioner…
To Tiennanmen Square!

As I trusted the Girls for the itinerary I haven’t checked the map but in fact the farer point from PuHa Hospital Tiantan (South) is the Summer Palace (North-West). And Summer Palace to Tiannanmen Square is 75% back to the start but by the Center-East. My first Beijing traffic jam in Beijing… When a 6 ways’ lane bottle neck in two-lanes exit which open on a 4 ways lane which bottle-neck to an exit of 1 car… And; of course, the sempiternal and planted by all traffic bureau of the world I have seen: the traffic light!

Our very smooth and skillful driver dropped us in a kind of adjacent lane/parking because no car is allowed around the Tiennanmen Square. There the toughest part (for Mikaina) started as she was decided to find an underground passage to the Square but whether there are none or we could not find one… Booths of whatever and bystanders seems to not know that you get down the stairs with a wheelchair with great difficulties and that it often result in a trip to the closest hospital unless you are accompanied by a family of gorillas. Mikalina has shown to have their stubbornness and will but still lack the power; she trade it for a Princess-like appearance…

We were there.  We could not say we see it but cannot say we didn’t. It was 6 lanes across… Not too many cars but it is very big and very far; many buildings on the Square turn their back to the Avenue, and to us just across…
An old merchant of I-dunno-what (fake second-hand teeth maybe) told Mikalina that there was a leveled passage with a traffic light if we circle the places/lanes around the Square to the West… He still probably laughing now…

The places around; actually holds a lot of shops, souvenirs, restaurants, hotels, official buildings, museums, KFC, MacDonald; a tramway that goes nobody knows where but that is “ding ding’ ing” around all the time. Shopping alleys, Beijing Cuisine… Name it -> It is there!

As for the Forbidden City it is even more tricky. The visitors can only get through by the South door which is only accessible from an underground passage between there and the Tiannanmen Square under Chang’An road… Furthermore; only entrance is permitted there and close at about 16:00. You then have to go to the closest exit hopefully accessible by wheelchair and return back to the surrounding at least 1.5km away if you want to shop a bit souvenirs or hit a restaurant to feast on the “Beijing Duck” (or whatever suite you; all restaurants seems to have an extended menu but not all have wheelchair access).
Hahahaha the good joke… I red from the website “Wheel Chair Travel” that it was feasible to make it from Tiannamen Square to Forbidden City, but they never said which chopper land them on Tiannanmen Square 😛

After so much efforts; Mikalina was very frustrated and tired; I could see it in her tearful eyes. We have been all day in a torrid sun – Our caregiver who would have been of great help to Mikalina at least – I got a darn great sunburn – and we failed at 50 meters due to Policies restrictions. (there are leveled passages for pedestrians but they are forbidden and locked since June 1989…

It was 16:00 roughly; tanned by the sun, tired by the journey and the frustration; we decided to bury our sadness under a mountain of food and refreshments in the first good-looking-restaurant-with-an-access-to-wheelchair. Quickly done; 50 meters from where we had our brainstorm.

I am not a fan and rarely goes to “Tourists Spots” Restaurants/shops/whatever but we had no much energy left and the chosen pray to foment our vengeance was in fact pretty far from the crowd. Nevertheless; it was a middle-sized restaurant, with a sell-everything booth at the entrance and the majority of tables can agreement 6 to 8 peoples or even large round tables of 15. We chose a convenient spot on a small table of 6 (8 if you fill the ends) and asked a menu.

Everybody was very friendly; the Lady (pretty girl by the way) who attend our table took the patience to clearly explain the plates we were interested in and honestly suggesting the quantities for two persons.
Mikalina ordered the Beijing Duck as it was one of her wishes being here, along with a dish of tofu in a flat-noodles shape. I am not a bird meat fan (chicken doesn’t eat other chicken, whatever their disguise) thus I chose beef tenderloin in a spicy sauce with a large bowl of spinaches.
My audience: it was very good and the portions very generous; we honestly paid a very democratic price and our gentle hostess packed a good quantity of left over as it is custom in Asia. As we do not have the mobile SIM Card; she used her own mobile; making the number in order to contact our driver Mr.Gao to pick us on that very front of the restaurant. He probably spent his afternoon close by and slept in his truck; as can witness the arrangement of tehe back seats when we got in.

As I suspected; our way back from there took about 25 minutes only before we were in the lobby of the PuHua Hospital again.

We were in the room at about 18:30; mr.Yang our caregiver was surprised in the sofa watching TV (nothing wrong IMO) and he spent the rest of the evening cursing the “too hot day that I got a giant sunburn” and “the too long trip that Mikalina looked so tired” and that he tried to make us speak but we kept him guessing for a long while… Absents are always wrong :p

We are on a tight budget so there were no souvenirs beside the photos; I’ll make galleries later” and the official pamphlets at 75c (6RMB).

Nurses were astonished by my “ability to get red in the sun” and laugh at me – Fair enough…

 

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