Tuesday, March 31, 2009

Day 6 Treatment

Emma had 200mg of ketamine over 4 hours again today. She came out appearing to have had "a few too many" and was quite comical for an hour or so afterwards. Apparently Pink Floyd on the ipod was what put her in such a happy mood and she insisted that she had been to space
and was surprised that she could still breathe there. Perhaps it was the dark side of the moon? She walked up the stairs of our house afterwards though was a bit wobbly. She has not slept this afternoon but instead has read her new book "New Moon" (a part of the "Twilight" series). We've all had a quiet day reading as it was cold out again. We've just closed off the day toasting marshmellows on the open fire.

Monday, March 30, 2009

Weekend sight-seeing

We've just had a great weekend sight-seeing. Emma had a very hard day with back pain on Saturday but we were still able to drive out into the Pennsylvania countryside to the Amish "Dutch Country". We were amazed just how many horses and carts we saw. It was a very strange place - the horses and carts were mainly driven by boys or men with no passengers. The carts are old style but with modern rear-view mirrors and indicators. They race along highways battling tour buses and on-coming traffic. It appeared that the women were home sweeping - the most common activity we saw at the farm houses. We drove around the countryside for a couple of hours. I had told my boss that I was tired of technology and that I might stay with the Amish but we didn't really make contact so I'm still not sure about that one. Sunday we had a slow start and then went to the Philadelphia Museum of Art (photos from the steps of the museum are below). Emma's health was much better on Sunday and we all had a great time and felt very cultured. We were surprised at how many of the classics were in the museum; Monet, Renoir, Picasso, van Gogh etc.

Saturday, March 28, 2009

5th Day & First Week Complete

Emma has finished the infusion today in high spirits. The infusion was over a longer period today so the patients could be more coherent when the Dr did his rounds. Julian and I had a chance to speak to the Dr after the infusion and he said he was pleased with the progress to date. Emma is less sensitive around her neck and arms and is now able to wriggle her toes on her right foot - her toes were pretty much frozen before. Her hands are still warm and overall she is doing really well. He said that next week is where we will see the most improvements.
It's now 2.30pm and instead of sleeping Emma is keen to go for a look around the neighbourhood so we are off shopping!

Friday, March 27, 2009

4th day of Treatment

Today the ketamine infusion was increased to 200mg over the 4 hours. Emma is feeling good now after a deep 5 hour sleep this afternoon, but towards the end of the infusion she got quite upset - a bit disorientated and also with pain. The barometer pressure dropped last night/this morning and when this happens it causes an increase in pain (unfortunately happens in all RSD patients) and for Emma it causes an increase in her muscle spasms in her right foot and leg. It is part of the infusion protocol that they periodically test her pain levels at various points. Some nurses have simply asked "If I squeezed you foot that'd be a 10 out of 10 right?" while others actually do the squeezing which causes a lot of pain. She has been given some Zanaflex (tizanidine hydrochloride) 4mg morning and night to help with the spasms. Dr S. is trying to find another doctor here that will treat Emma, as an outpatient, and perform a spinal procedure for the muscle spams. Emma has had these spasms for years but nothing has been prescribled to her before. Dr S. has also recommended more nerve blocks for the spasms in NZ. While Emma has the infusion we are not allowed in the room as it is kept quiet and limited light as most patients sleep. During the infusion Dr S comes and sees the patients and discusses their condition with them. We have been told that we will get a chance to have a catch-up with Dr S. tomorrow. Its 8pm now and Emma is feeling good and eating well.

Thursday, March 26, 2009

Emma's View

well had my third treatment of ketamine 2day, feel much better than i did the day before, as i was given medication to stop me being sick. But still can't wait till it's over. I'm looking forward until friday so that i can take the iv out of my arm... it's getting really itchy!
2moro I'll have the maximum dose of ketamine (200mg) so hopefully I'll cope with that dose and can continue with that dose until the end of the treatment.
Sleep back at the house after treatment has been amazing, i haven't had such a good, uninterrupted sleep in years.
Looking forward to coming home and seeing more results from the treatment (hopefully a decrease in pain!!!)
Love to you all,
Emma xxoxx

Photos at the clinic

In the Infusion Room before the treatment started. That's not a bad smile after a 5Am start! There are 11 of these chairs in the infusion room and there have been 6-8 other patients having the same treatment at the same time.

5AM starts are catching up! This extra sleep came in handy when Luke and I had an 8km walk to Chestnut Hill this afternoon.

Day 3 Treatment

Another 5AM start to get Emma to the infusion room by 7AM. Today she received the same dose as yesterday (150mg of ketamine over 4 hours). She is taking 1mg of lorazepam morning and night to avoid the bad dreams that ketamine would otherwise cause. She calls these her "Harry Potter pills" as Harry was given something similar after a clash with "you know who". She continues to have midazolam at the beginning and the middle of the infusion to help with nausea and today she was also given something else to stop her being sick. Tomorrow the dose of ketamine will be taken to 200mg over 4 hours and she will continue on this for the rest of the week and all of next week. After the infusion Emma comes out tipsy and quite wobbly. The unsteadiness results in me carrying her up the stairs when we get back to our house. She has something to eat and then falls asleep. She says that she is sleeping the best she has in years. Dr Scwhartzman has said that no-one with RSD sleeps well. After 3-4 hours sleep she wakes and is very hungry again - has a meal and then, of course, a big plate of icecream.
The weather is improving - temperatures have risen quite a bit. Today's walk for Nikki and Luke to see the Liberty Bell while Emma had the infusion was at a relatively balmy 4 degrees C.

Wednesday, March 25, 2009

Day 2

Day 2 and Emma's ketamine infusion was increased from 80mg to 150mg over the 4 hours. They had originally planned for day 2 to be at 100mg but she coped really well with the previous day. Tomorrow's dosage is likely to be at 150mg. Emma was sick a few times at the end, but overall is coping really well with the treatment. After Day 1 we could see some signs of the treatment starting to work for Emma. One thing is her hands which are normally cold and clammy, are now dry and warmer.

Tuesday, March 24, 2009

Our Phili Neighbourhood

Thanks to all of our family & friends in New Zealand for the emails and feedback on the blog. Emma loves hearing from you all. We all really appreciate it.
We are renting the upstairs section of a house in Mt Airy - Germantown, Philadelphia. The place is working out well but a tad chilly! A couple of electric heaters and a big open fire that puts most of it's heat up the chimney! Spring seems to be here according to the trees beginning to bud & blossom but there is a cool wind most of the time. It takes us about 30 minutes to drive down to the hospital in the center of Philadelphia.

Emma has slept for a few hours this afternoon after the treatment and is back to her cheeky old self and her usual appetite for ice-cream has returned.

Strollin' in the 'hood

Upstairs - Our place

The neighbourhood is filled with beautiful old houses

Co-op store across the road provides the food and has a great community atmosphere

1st Day of Treatment

The treatment went well today. We arrived at the hospital at 7am and Emma had an IV line put in by 7.30am. She was taken to the infusion room and given a lazy-boy chair to sit in. She had with her a pillow and blanket, and mp3 player, so she was quite comfortable. She was first given Midazolam at the beginning of the infusion and again half way through, this is to combat potential side effects of the ketamine. Emma tolerated the 4 hour ketamine infusion well and tomorrow they will be scaling up the dose quite a bit. It's now 3 hours after the treatment and she is sleeping back at the house. The staff have been really good to Emma and making a fuss of her. Emma is Dr Schwartzman's first NZ patient. I have just read that Dr Schwartzman has been judged America's top Pain Physician and one of the top 3 Neurolgists in 2007-2008 (as judged by 50,000 expert physicians), so we think she is in good hands! Dr S. has said to Emma (and us) quite a few times that she is "one tough kid".

Monday, March 23, 2009

Emma's Photos

The White House

World War II Memorial

Mid-air squirrel

The squirrel Luke and I fed

Sea Turtle bones at the National Museum of Natural History (BEST PART... Fred's great granddad)


Well... been in America for over a week and missing home lots!
it's really cold in philadelphia and can't go outside without millions of layers!
Went to Washington DC in the weekend... was even colder than phili if that's possible.. got too cold an had to go back to our hotel, well i did any way.
The white house was much smaller than i expected... and really white!!! spose that goes without saying though.. there were secret service people on the roof, kinda freaky.
went to the art museum where there were really cool photographs by Robert Frank.
I got to feed this really cute squirrel so i'll post a few photos of it... and other cool stuff we've seen.
Treatment starts tomorrow so pretty hopeful about the outcome :D

Thursday, March 19, 2009

More photos

Newport Beach, Orange County, California

Philadelphia. Emma's appoinment was in the building behind.

1st Visit with Dr Schwartzman

We arrived in Philadephia yesterday and the weather is quite similar to NZ only with a brisk wind but not too cold. Today Emma had her appointment with Dr Schwartzman at Drexel University Medical Hospital. It was reasurring to meet with a Doctor that has had so much experience and knowledge working with patients that have RSD. He explained many things to us and gave Emma a thorough examination and said she has full-blown/full body RSD, not just her foot/leg where she exeriences the most pain. Through this exam he pointed out to us symptons that Emma has that had not previously been connected to this disease. It was really reassuring and gave us lots of hope. Emma begins treatment on Monday and Dr S. and his team have a special infusion room where they treat RSD patients daily with the treatment Emma is scheduled for. They showed us the room where several patients were undergoing the treatment. He explained that 50% of people that have the coma treatment (that Emma won't have - only available in Germany and Mexico) are pain free but that the outpatient infusion that Emma will have has more varied results. He said that there will be improvement but it is unknown to what extent.

Monday, March 16, 2009

Friday - Double Black

Yes - two Friday the 13ths in a row as we crossed the date line. We'll call it lucky though. The only issue we had was that the rental car company were out of both GPS's and maps. We travelled from LAX to Anaheim using only an A4 size photo copy map of LA. We found ourselves on the pacific coast highway which surely was not the fastest route but quite interesting and we eventually found our hotel about 4 hours later after a battle with a strange numbering system on our street which is 10 miles long. I spent the evening downloading the USA western region map for our own GPS and wishing I had done that before we left. The car is a dodge charger which impressed Luke - we needed a full size car to fit the wheelchair in. Not much room left for luggage! Yesterday we had a great day at Disneyland and had fine navigation there by none other than Darth Vader (via our GPS). Today's travelling was navigated by Hannibal Lecter whcih made for a few interesting moments on the freeway. We seem to be running on LA time in the mornings and NZ time in the evenings which simply adds a few hours extra in the day. So as it's about midnight and we've walked the mean streets of LA all day (and survived!) we'll call it a night. Highlights of the day - Meal at west hollywood. Lowlight of the day - parking in LA's fashion district - was expected to surrender my keys so that attendants could juggle the cars all day as there was not enough room. Quite another world in that part of town - the rest of downtown LA was practically deserted as it was Sunday.

First few days in LA

The flight over was good, and most of us managed to get a few hours sleep. Emma travelled reasonably well, much better than we expected. We are now up to date with the movies. Saturday was a full-on 12 hour day at Disneyland and it certainly lived up to its reputation. There were thousands there and huge queues at the rides, with the most popular being over an hour. Emma was given special treatment and was able to enter through the exit lines and go straight to the front - there's got to be some perks to being in a wheelchair!

Sunday was a sight-seeing day spent covering Down Town LA, Hollywood, Beverley Hills & Santa Monica. Also saw some famous stars on Hollywood's Walk of Fame.

LA Photos

Downtown LA - Pershing Square - where are all the people ? (Sunday)

Pershing square - LA


Luke becomes jedi

Main street USA - Disneyland

City Hall - LA

Thursday, March 12, 2009

Final tests complete and ready to go

Quite a few tests were required before heading to Philadelphia. A full series of blood tests, cardiology tests and a psychiatric clearance were required. The test that proved most difficult to have was a Tilt Table Test. All of the hospitals in our local area had long waiting lists and could not do the tests for several months - which woudl be too late! Thanks to Christchurch hospital for fitting Emma in at short notice. Our only backup option for the test was to have it in Philadelphia at a cost of $1000 US so flying to Christchurch was a great saving! Emma was picked up in Christchurch by her Grandmother, had the test and then spent a very pleasant weekend with family in the south. Emma fainted on the Tilt Table after 10 minutes or so. Her blood pressure returned to normal quite quickly and so it was a good result for clearance for the ketamine treatment. Unfortunately the Doc grabbed her RSD foot to help her gain her balance after fainting. :-( :-( I think Emma needs to wear a sign when seeking medical treatment "Don't touch the foot!".

So tomorrow we fly out Auckland to Los Angeles.

Sunday, March 8, 2009

My Overview

My name is Emma and I have Reflex Sympathetic Dystrophy (RSD), commonly referred to as Complex Regional Pain Syndrome (CRPS). I have suffered from this pain condition for six years, since the age of 10 and it has completely changed my life. I first got RSD from a minor sprain injury, and was diagnosed with RSD months later. My life became a battle in which I had to fight the pain to continue my life. I had to give up all sports which I had previously loved and it took me a long time to accept that I wouldn’t be able to run again like I once had with so much joy. I have tried all the typical treatments for RSD including sympathetic nerve blocks, acupuncture, physiotherapy, tens machine, pain medication… but nothing worked and the pain has continued to get worse. A good day is a day in which I can cope with the pain. The pain is always there, but I am able to smile and laugh and feel the joys of life. On a bad day the pain is all I am able to see. A bad day is a day where I have failed to lock the pain away and once again it comes to control my life. It is hard for me to describe the pain as it varies greatly and there are often so many different types of pain, often at once. The most continual pain is the burning sensation. It is as though my foot has been placed in a fire, and I can’t pull it away. It continues to burn.