Showing posts with label stem cells. Show all posts
Showing posts with label stem cells. Show all posts

Wednesday, November 18, 2009

Reflections

Odette:
Monday.

Laying in my bed all hooked up and waiting to be wheeled upstairs for my very last stem cell treatment.  I've skimmed over our words of the last 4 weeks and relived some precious moments and some great laughs.  A month has zoomed by and I know Laurinda and I will take away some life-time memories with us.  I had never visited a Communist country before and didn't really know what to expect, but I admire the way the Government here ensures employment and at least the necessities of life for all.  We have not encountered any hungry or homeless.

The people of China have been absolutely lovely and gone out of their way to make us feel welcome and share a little of their culture with us.  They are so friendly and more than willing to try and converse with us or help us out.  Thats when they are not laughing at us of course...we are still cause for a lot of giggles and whispers.  The only tourists to be seen are here for the same reason...the stem cell treatment.  We have really enjoyed the locals and learning about their ways.  They are also very polite people and seem happy with their lives.

Despite the language barrier, the medical staff have made a huge effort to explain all the procedures, even showing me the vial of spinal fluid they remove from me before injecting the stem-cells so that the volume stays balanced.

Back from my Lumbar Puncture - the Director performed the procedure tonight and was extremely efficient.  The hardest part is the 6 hours flat on my back with poor Laurinda on potty duty.  So, all my beautiful new cells are inside me now and many are already doing their job.  Dr Apples examination yesterday confirmed the muscle strength in my legs is now.....wait for it...NORMAL!!  I also have muscles, 2 of them!  One in each shin.  Its been too long.  Laurinda is busy admiring her tattoo and I am busy checking my 2 muscles are not disappearing.  I am still working on ideas for home.  I need to take Owen to keep up my daily massages and therapy but he just laughed when I asked him.  I can't work out why!

Monday, November 16, 2009

Sunday

A quiet, snowy day in today. Mum's stem cells have been asking for lots of rest and relaxation. Even Superwoman needs to put her feet up. She has her final spinal injection of precious stem cells tomorrow night. Although we had some immediate results and her general condition has already improved, she still has the odd rough day. She is still smiling because she knows that there will be less of those days to come.

Thursday, November 12, 2009

Woeful Wednesday

Odette:

Whoops off to a rough start today all round. Laurinda woke with the Flu (we're hoping it's not Swine) and then got caught in her nightie and had to ask the professor (a.k.a God) to wait a minute while she put something decent on. He wasn't amused.

It seems that is common to suffer from Sciatica pain after/between Lumbar Punctures. It happened a couple of weeks ago, but it wasn't too bad. This morning it started at about 6.00am and I was literally in tears of pain by about 7.00. It was excruciating. I was poked and prodded and questioned by all the staff including the professor. A pain plan was put together and administered. Chinese see pain medications very differently than we do in Western cultures, they would rather fix the source of the pain than administer strong pain medication. Considering I had already had Tramal and panadine forte and I was still dying I was happy to go along with any plan they had. I received electrowave therapy, IV form of anti-inflammatory and 1/2 a tablet of mild pain relief. They also told me to put a towel on my left bum but it is a bit hard with no hot water. It seemed like a lot of things happening at once, but they got it right and within 45 minutes the pain was gone. They sure know their stuff around here. We have been monitored quite closely today- any more pain and there would be NO stem cells tonight! Time is precious, our flights home are booked and we don't want any delays now. I really don't want IVs instead of Lumbar Punctures either, but with 2 hours to go things are looking good.

I got quite excited when another lady arrived with MS a few days ago. We had a big chat and she is in a very similar situation to myself regarding the progression of disease; limited mobility, cognitive difficulties - all the way down to our "Tourettes" as we call it. Unfortunately it has been too cold here to leave the room so I haven't been able to catch up with her and find out if the treatment has been as helpful for her. I hope so. There have been no other MS patients.

Thank the Lord that we both have a sense of humour. Today has pushed us in every way and we are still in good spirits. Once the pain was under control we realised it was to be another day without a hot shower (5 days now...) A solar system was installed a month ago without regard for the freezing Winter that kicked in about a week ago. We are almost at the pulling-out-our-hair stage. The bathroom door handle fell off, there is no heating or extra blankets for our concrete futons and our laptop died. Laurinda is becoming very angry at the poor man that never leaves the computer that has Skype on it, so she can have her daily dose of her babes. I am beginning to fear for both of them.

On no! Now there is not only no hot water- there is NO water at all! Help- send the helicopter for us. Please. They're coming to wheel me upstairs for my stem cells any minute and all I can hear are fireworks. What planet are we on? How can I be receiving cutting edge technology and there is NO hot water? How does the doctor scrub up with NO water? The Chinese honeymoon period is over! Well at least we're still laughing :)

Terrific Tuesday

Laurinda says:

We were confined to our room all day yesterday, so today despite the freezing weather conditions we decided to venture out to the open markets to save our sanity. Our only pair of jeans were away being laundered, so we had to wear our summery 3/4 length pants with socks pulled up and walking shoes (very sexy!). We walked out of the comfort of the heated hospital and the icy wind gnawed at our ankles. We jumped in a taxi and were dropped off at the dogs' heads.

First stop: gloves, beanie, leg warmers and tracksuit pants for Mum who was feeling the cold for the first time in years. Would you believe we had to buy size XXXL men's tracksuit pants and they are skin tight on her! Advice to anyone coming over, don't pack 11 skirts and think you'll buy some jeans over here when it gets cold if you are over a size 12 AUS. Next stop, Beth's Louis Vuitton bag, hmmm not sure if it's quite her style but fingers crossed. Then a couple of outfits for the girls and a pack of 10 Nike socks for less than $1.

Odette says: 

We rushed back to the hospital in time for the second round of PT and electrowave therapy. Today the muscles are still tired and sore from 4 hours of walking on Sunday, the MS equivalent of running a 10km marathon. Big rest in the afternoon while Laurinda popped over to Lottemart for a few essentials. She came back with 'Annie' a beautiful doll who speaks Chinese. The young Chinese girls at the hospital were very taken with her and loved conversing with her and kissing her.

We have celebrated other patients success along with our own. Here are a few of their stories (names omitted for privacy):
  • A little Norwegian girls first steps today. Her dad is over the moon. His dream of having his daughter walk into kindergarten with her friends next year is coming true.
  • Our mate Kev smelled coffee and saw shadows directly in front of him for the first time in 12 years.
  • An American girl left last week able to put her hands out and touch a wall instead of crashing into it as her undeveloped optic nerves began to grow.
  • A little Irish boy has stopped having seizures and his parents are very hopeful for even more positive results.
  • An elderly Chinese lady is seeing light after years of darkness. She was complaining the lights were too bright following her first treatment.
These results are very exciting however, we know that stem cells need to grow and multiply and the best results are still to come in the 6-12 months after we all leave here.



 
 

Tuesday, November 10, 2009

Monday 9 November

Odette says...

Its NOT because I'm stubborn!
Its NOT because I'm too independent!
Its NOT because I wont listen to Laurinda!
Its NOT because I think I'm Superwoman !

Well, ok, it might be a bit of the above, and yes I am paying the price today and only managing to drag myself out of bed for therapy, and yes, I overdid it again big time...but what an achievement!
Yesterday we walked and walked and walked.  Up hills, down hills, up hundreds of steps and over very uneven surfaces all day without a single tablet or whinge.  Our only rest was the chairlift that took us up to the Temple on the Mountain, despite having to line our bums up and hope we made it on as it whizzed by..the damned thing doesnt stop!  There was a bit of a lurch as we more or less fell into it, and off we went amongst much slightly hysterical laughter.  The Zoo was huge and rather sad so I was delighted to arrive at the Buddhist Temple which was surrounded by a pretty lake with ducks and geese.  We saw the Monks chanting and going about their daily business in this idyllic paradise, but it wasnt long before we were nudged back to th 21st Century by the sight of a Monk on his mobile phone.  The day was terribly smoggy but we managed to get some lovely photos and the Temple soothed me spiritually and the pride I felt when Laurinda mentioned how long we had been walking....another day to remember with a smile!

I have felt from the start of this adventure that I need to get the word out...make more people aware of the possible wonders of stem cells, and ideally, even help to make it possible for those that can't afford it.  Its very expensive and without my superannuation, I would not have been able to experience it myself.  Laurinda and I are working on ideas, nothing decided yet, but perhaps something along the lines of a charity based organisation.  There are others here too that are eager to share their successes and we are going to film some footage of real people telling their real stories.

2 treatments to go...Wednesday night and then final one on the following Monday and head for home next Friday.  :)

Saturday, November 7, 2009

Saturday 7 November

Its very difficult to know what's been posted on our blog when we can't see it ourselves, or which photos Jarrod has chosen to display, but everyone seems to want news, so here goes....

CONFIRMED MEDICAL RESULTS

  • Muscle strength in legs.....almost normal!
  • Muscle tone in legs............almost normal!
  • Tingling (pins and needles and elec shocks) in legs...all gone!
  • Blood Pressure....lowest in 7 years!
  • Neuro reflexes...almost normal.
  • Cholestorol....on target.
  • Eye-sight ....improving.
  • Pain relief.... reduced.
  • Anti-depressant meds...reduced.
  • Walking for miles!
  • Weight...stable (ggrrrr)

I had my 4th treatment last night - 2 more to go.  I have organised the last one to be L/Puncture rather than IV.  No problems there.
I cant speak for everyone else, but this is the stuff of dreams and miracles for me.  Now I'm going to plan a whole new life for when I get home.  My new Nikes are getting a work out and I am loving being outdoors again after all this year on my butt in front of my computer or in bed.
I'm going to live again!

...


Laurinda was going a bit stir crazy with cabin fever, so I encouraged her to round up a few patients and carers last night and head out to the Paradise Club.  It was good to see her get dressed up and excited.  She must have had a good time because she was the last one home and was locked out of the hospital LOL.  Being a resourceful girl, she somehow found a way in and to her bed.  She and a few others have organised a couple of cars to take them to the downtown Markets today.  Because I had 2 treatments this week, I had to miss a little therapy, so I stayed in today to catch up.  A nice rest too, so my stem cells can do their thing, and a quick nip over the road for a few treats before she returns.  I have no idea how I'm going to cope without Owens massages each day once I'm home.  I may have to bring a Chinese boy back with me!  Ok, just enough time to sample a few snacks before electric wave therapy.

Here's a few more photos:



 

Sunday, November 1, 2009

Friday 30 October

Odette says...

2 steps forward and one back.

I felt so good yesterday that I overdid it with an evening stroll.  I certainly paid for it today, but Owen gave me extra massage time and Laurinda bought me treats...yum!

It was a beautiful night and we are surrounded by parks all lit up, and with the locals playing badminton and other sports on the concrete...not the grass.  We took lots of photos, but they turned out a little blurry, still working out the camera.  We had a good laugh when we bought that camera at one of the features on it...beauty enhancer...but when I saw the photos Laurinda had taken of me, I had to tell her off for not using the special beauty enhancer feature.

So, a quiet day for me and a couple of jaunts for Laurinda and Ann.  Laurinda is now the proud owner of long, glittery gold finger nails - really not her style but she said they were the tamest ones there!  We also have a few other plans in the pipe lines.  Special back/neck/head massages, some reflexology and a tour of the local brewery where beer is drunk from a bag!  We are also hoping to see Polar Bears, temples, gardens and Olympic Games venues.  We have invited some friends to join us and we will take a van and an English speaking driver.  We have decided to leave the big walking outings until last of all, when I'm back in my Superwoman outfit.

My Roo rang me today..yay!!  We have a phone in our room and it was the first time I had heard it ring, it gave me quite a shock!  It was so nice to hear his voice.

It's Halloween tomorrow and Jack (one of the translators) has asked us to join him on the Trick or Treat rounds.  Luckily we came prepared and have some hilarious glasses to wear.

Can't believe we have been here for over a week.  Can't believe how much stronger I feel and how happy I'm feeling half way across the world from home with my beautiful daughter and experimental medicine.  The stem cells are not the usual ones used from the cord blood, but taken from the wall of the umbilical cord, so it really is new.  These cells are more expensive because they are proving to be more effective for some ailments and injuries, including  MS.  Luckily, being a Guinea Pig means I am only paying the usual price.

We are off to try the DVD player again.  No TV or movies since we were on the plane...big night LOL!!


Odette at the People's Square


 Hackysack




Bad smog today! Compare with photo of the Lottemart below, taken last week! 




Laurinda is very happy with the new nails

Thursday, October 29, 2009

First Lumbar Puncture Stem Cells

Odette: Ooh the pressure is building- it's really the BIG day today! Stem cells via lumbar puncture. Two therapies this morning, now no more for the day so I am rested up and strong for tonight 7.30pm. The Professor came from down town Qingdao this morning and poked and prodded and discussed my case with 10 others. The translator was here but I got the general gist of things. He was much revered and they all hung off his every word. He will be returning daily to monitor my progress. I think the IV that I had was more to see if I had any side effects or negative reactions of any kind. The spinal injections are the REAL ones! I'm very excited and busy telling my mind where I want the cells to go and what they need to do. Fingers, toes, eyes and wings crossed!!

After the cell transplantation. its laying down with no head movement for 6 hours. Oh God! How am I going to make it through the day? I'm already counting the minutes. I doubt this sort of excitement is good for my blood pressure. Here is the Professor's advice:
1. Take a little exercise everyday
2. Enjoy a little rice everyday
3. Smile everyday
4. Bask in the sunshine
Sounds good to me- although the sun is a little hard to detect past the white smog.

Laurinda has gone shopping with Ann. I'm far too worked up to read or try the Internet so I shall just keep trotting up and down corridors. Ok - no more writing they have put in my IV in preparation and Laurinda is back with slippers and nail polish- I can have nice nails again yay!
...

Laurinda: The day has gone so slowly but it is 7.15pm and they have finally come to take mum upstairs for her lumbar puncture. She is so excited. Now I don't know what to do with myself. Perhaps I should do some housekeeping our room is looking a little crazy.
...
Well I didn't get much done, mum was returned safe and sound 40 minutes later. She is awake and smiling from ear to ear. She said they only took two minutes to find the right spot and inject the cells. When the doctor started pulling her shirt down she panicked and said 'what's wrong' but he said 'all finshed'. She didn't feel a thing- a very different experience from her lumbar puncture in Australia! Poor thing is laid up now flat on her back and I was so excited to tell her I found a DVD that would play for her to pass the time- Charlie's Angels but it's in bloody Chinese with Korean subtitles! Oh well we wait with bated breath for tomorrow.........

Tuesday, October 27, 2009

Week 2 - Monday and Tuesday

This morning while mum was receiving therapy, I went to the RT Mart to buy DVDs and camera still no DVDs to be found but I managed to find a camera for $120 so I said I wanted to buy the camera and she told me 'no, none'. Through very broken Chinese and a little help from my phrase book I worked out there were more coming today and she told me in English 'just minute' so I wait and wait and wait. She looks at me funny and I ask 'when?' she rambles in Chinese and I pull out my book to the days of the week and she points to Monday so I ask 'oh delivery today?' She nods. I say 'what time?' and she tells me '4 o 'clock'. Lucky I have learnt some Chinese and had my book with me or I would have waited all day for 'just a minute' haha... so I walk the forty minutes home with nothing but some large blisters. I got back and mum said 'Hey! Where's my lunch? I didn't order lunch because I thought you were bringing me something yummy home!'

So we went to the Lottemart food court for dumplings and a stir fry thing with all the pickled vege and gim chee trimmings. It was very yummy and everyone thought we were very funny trying to order in Chinese. After you order you take your ticket over to central food court cash register area, pay then come back with ticket and wait- didn't take long. I walked off to get mum a drink and it was on the table with her when I returned. When we went to leave we saw the cheap cameras for sale in the food court! So we finally got a camera for $100 and paid extra $20 for a 2GB card and it saves me from walking all the way back to RT Mart tomorrow. So we can now post some photos!

Out the front of the hospital there are street vendors selling lunch but we just haven't been that adventurous yet! It is a strange melting pot of East meets West. We are very excited about mum's first lumbar puncture delivery of stem cells tomorrow. They joke here that it is like taking the lift straight to the penthouse to fix the myelin where it's needed rather than taking the stairs and stopping on each floor.


 

Saturday, October 24, 2009

Therapy begins

It was lovely to sleep with the extra padding last night. Mum had her first PT session this morning with Owen and she feels great. She did stuff she didn't know she could even do. She stood on a balance board throwing and catching balls, walked with weights on her ankles and climbed a huge step 25 times! She received a lovely foot and leg massage too.

Then the Doctors visited again to explain test results. Blood pressure too high, cholesterol too high and optic nerve damage in left eye (mum wants me to write 'nothing too serious' here) but I have now become the smoking/eating police and she's not impressed.

Next was acupuncture where mum lay around for half an hour with needles sticking or her hands, legs and feet. Then the wait.......

3.00pm.....time for her first stem cell injection. Mum says 'let the miracle begin!' She was feeling very emotional at the start after months of planning and hoping, here she was receiving her precious cells. I taped some of the special event but mum was crying too many tears of joy to talk. Mum says she 'feels great, not superwoman yet, but on her way'. She has been resting this evening so she can venture out with me tomorrow. There is no therapy on weekends so we are hoping to do a spot of sight seeing.