2014 Ketamine Infusion

Allison is back at again. Two years seems to be the magic number between inpatient stays. Allison started her treatment this past Monday evening and it is now Thursday or day 4 of 5. Ketamine is flowing and Allison is pain free. The side effects are strong but she is handling it well. She is being closely monitored.  Visiting hours at HSS are 11a to 9p but I have managed to sneak in and out early and late. The hospital staff have been top notch and very caring and understanding to Allison's needs. Things are going well and there is hope on the way for those suffering with RSD.
As always, in hope.
Greg

Day 3 and 4-Ketamine Infusion Therapy

Allison's journey continues as she calls her ketamine trip, Allison in Wonderland.  All signs point to an overall positive treatment and if Allison can go another year or longer being pain free, the trials and tribulations that she has gone through this week has all been worth it.  She has been pain free for the past 2 entire days while the ketamine keeps pumping throughout her body, in hopes of resetting her pain receptors in her brain.  HP and the Deathly Hallows have been keeping us busy, half way through the book in 3 days, not too bad since I have had to reread chapters to Allison has she soon forgets what I have read and the need to go back for chapter reviews.  Allison has been asking about everyone and wants to know how everyone else is doing along with her family rather than focusing on herself getting better.  She has apologized repeatedly to me about having to deal with this "life" we have to live to the point that I had to tell her as nice as I could, Shut the Fuck Up!  She actually laughed and just said, "ok".  Part of the treatment requires an epidural, numbing her lower extremities, so that the ketamine can works its magic.  The epidural was pulled today and for the next two days, she will be on straight ketamine, 65ml per hour over the next 36 hours or so.  How she does it, I have no idea.  The only siude effect that seems to be bothering her is after she falls asleep and wakes uo, she does not know where she is and there are "demons" and "monsters" in her room that she has too fight off, telling herself it's all a hallucination.  It's a catch 22, because when she does fall asleep, she says her dreams are vivid and she is pain free in her dreams, doing things she wouldn't consider doing in her "real" life, and then wakes up, scared because she has to fight off her dream world and reality, trying to decipher between the two.  Well, another day down and one full day to go.  She will be titrated down late Friday night into Saturday morning and we will be on our way back to New Hampshire.  It is expected that she will have about 2-3 weeks of feeling a bit sluggish and nervous, (schizophrenic type side effects), but will be feeling completely normal, (fingers crossed), with each passing day.  Thanks for everyone's kind words and support, it is much appreciated.

In Hope,
Greg

Day 2-Ketamine Infusion

Day 2 has gone well. Allison has tolerated the increase in ketamine each hour and as of 10p tonight she was up to 52ml an hour and by the morning hopes to top out at 65ml. She had PT this morning and did well with that including using the bathroom on her own which she was very proud of. She managed to eat a little for all 3 meals today and even napped for about an hour during the day. I managed to read the first 8 chapters to Allison of HP and the Deathly Hallows, which made the 12 hours I spent with her today, fly by. Her nurses have been great, which really helps Allison feel more comfortable and less nervous and stressed about S#$%$@! the bed due to not feeling anything from the waist down due to the on-going epidural. All of her vitals are great, urine output is normal and her pain is at a 1 to non-existent at this point which are all good signs. She is uncomfortable though with tubes and wires coming out of all parts of her body but is starting to see the light at the end of the tunnel. If she does well during the night tonight, it should be smooth sailing for the rest of the week as she will have maxed out on the amount of ketamine she can receive. It definitely helps being a pro at receiving these infusion, which to date is over 100 for her. Thanks to everyone following along or getting updates via facebook, (I just heard Google cringe at me using the F word). In hope, Greg PS BTW...Griffin went 0-2 with a fielders choice RBI, in his 7-8 year old little league game tonight, which tied the game and made a charging and fielding play at 3rd tonight to throw out the runner at 1st base along with making some plays at 1st base. Way to Griffin! Mommy and Daddy are very proud of you. That's all for now as my large meat pizza is on it's way to the hotel. Dee-Lish!!!!

Day 1-Ketamine Infusion

So....our day started at 530a this morning as we traveled to NYC to the Hospital for Special Surgery. Needless to say, it is almost 630p now and Allison has just been admitted. Once she is set up, I should be able to see her and spend the last hour or so with her before the hospital closes its doors to visitors at 9p. I have been given special priviledges for visiting as Allison is in her own isolation room so I will be able to spend 9a-9p straight through with her each day this week, which I am sure she will enjoy. Most visitors at this hospital only get 10 minutes once every hour starting at 10a and ending at 7p. It's a long 12 hours but I will not complain as Allison is hooked up to machines and wires, almost reminiscent of that when Anakin Skywalker is transformed into Darth Vader. Once the ketamine starts flowing, I think Allison believes she has the force. There won't be much more to say tonight but I will have a full report tomorrow morning once I see Allison for the first time following an entire night of her infusion, which last time was not pretty. At least now, she knows what to expect so let's keep our fingers crossed, (Griffin told us he would have his fingers crossed the entire time Mommy is in the hospital). In Hope and Love, Greg

Here we go again...

Allison has gone approximately 2 years after having her 5 day inpatient treatment of ketamine at the Hospital for Special Surgery in NYC. She is scheduled again for May 14-18 and her pain symptoms have become too life interferring as she had to leave her teaching job on medical leave this past April along with having to increase her medications. She also was having outpatient ketamine more frequently which was a sure sign that she needed higher doses over a longer period of time to experience significant relief while obtaining and sustaining quality of life once again. We are asking our family, friends, and supporters to send Allison, warm thoughts, positive energy and prayers as she takes another journey down the road to recovery. I will keep everyone updated each day as I did before as Allison fights to be pain free. In Hope, Greg

Update

First of all, sorry for not keeping followers of this site up to date more frequently that I have done.  I guess in part that is a good thing as my wife, Allison, is overall doing well.  There are still ups and downs despite the frequent infusions that she receives throughout the year.  Right now, she is on average completing a 3 consecutive day 4 hour infusion of 240mg of ketamine about 4-6 weeks apart.  Thank God insurance covers these costly visits!

The thing about the whole issue is that my wife does more than she should but who could blame her after not being able to do much of anything for the past 15 years of her life.  Since her 5 day inpatient procedure last June 2010, she has lived a new life but at times puts too much on her plate as she "feels good" and will do whatever she wants to do.  It finally catches up with her and begins feeling the "burn" thus needing infusion treatments.  She has yet to find a balance in her life and does not know her limits until she is in pain.

The most important thing to keep in mind is to do what makes you feel good and that is what she does.  If she needs to take a day off and rest, she does, if she needs to take vicodin, she does, if she feels like she can ride rollercoasters all day, she does.

Live life to the fullest and keep hope alive.  Keep fighting and don't give up hope because once that happens, the fight is lost and RSD will have won.

Update

Thanks for the comments.  I forget to post as often as I had in the past, partly due to the fact that my wife is doing so well following her 5 day ketamine infusion.  I will do better in keeping people updated in our journey.  Yes, Allison is currently on a regimen of having a three consecutive day, 4 hour ketamine infusion of 60mg per hour, every other month.  Her pain levels are very low and she is almost off all pain medication with an exception of a vicodin here or there.  Keep in mind that she still needs to relax and not overdue herself, which is easy said than done since she has been limited for so much of her life in the past 13 plus years.  Her pain doesn't get any higher than a 4 and that is after a week of working.  She mostly hangs around the 1-2 range but is able to do just about anything without over doing it.  She knows her limits, which is good.  There is a possiblity that she will undergoe a second 5 day infusion within the nexy year too knock out the symptoms completely, depending on the recommendations of her doctor's.  The good thing to know is that a huge portion of her procedure was covered by insurance after going through the appeals process.  We even had enough money through our fundrasing efforts to make a donation the the Neurology Department at Drexel University for continuing there research to find a cure for RSD.  Good journey.  Keep the faith and know that there is hope.  I would recommend the short journey of the ketamine treatment, even though how mentally exhausting and terrifying it was compared to a lifetime of continuous agony and pain both you and your family members have to deal with emotionally for not being able to help your loved one with RSD and the physical pain they are experiencing everyday of their life.  If your wife is physically healthy regarding her heart and other organ function, I would totally go for it.  Feel free to write anytime and again, I will do my best to keep up on the blog.