Monday, January 30, 2012

A case a nerves

I'm sitting in a hotel room less than a mile from Hahnemann, too nervous to go get the free breakfast waiting for THE phone call!

Even tough I've done this several times before, I just want to get it started & not be sitting here freezing in this hotel room with nothing to do! I am tempted to just jump in a cab & show up, but as a nurse Iknow how disruptive that Canberra to a Monday morning. First impressions can make or break a hospital stay. So I will sit here impatiently freezing.

I listen to how badly so many other are doing in our group & wonder if I belong here? I know that over time, we get used to the levels of pain that we once thought were unbearable but some how you feel guilty because you've adapted and although the pain is worse than your "norm"; you don 't interprete it in the same way & with the same intensity as those who have had RSD less than...say 10 years.

Is it because we have accepted this level of pain as normal & don't expect it to be any different and only seek treatment when it breaks out of our "norm" or is there another reason? I hope in collecting the stories & perspectives of some of my fellow RSDers over the coming weeks & months to figure some of this out!

Well still no call so I'll get something hot to drink to warm me up then give Hahnemann a call. Did I say how much I hate waiting???

Sunday, January 22, 2012

The Grieving Process and RSD

The Countdown Begins

One week from today my journey for my next Ketamine treatment begins.  I have mixed feelings.  No one wants to go into the hospital, no matter what the reason, except perhaps to give birth.  As a RN, I know all of the possible complications of an ICU stay and try not to dwell on them.

The fact that this particular treatment requires you to be completely cut off from your family and friends makes it a bit more scary.  They do not permit telephones of any kind in the room.  Family members can only call the nurses' station to check on you.  Visitation is frowned upon as they really want you to just sleep.  Computers are not permitted either; so basically you are cut off from the outside world.  The reason for this is twofold.  The first is that Ketamine is an anesthesia and makes you a bit loopy.  Additionally they give you other medications that have sedative side effects to prevent hallucinations that can be caused by the Ketamine.  They do not want you to do or say something that you would regret while getting the medication.  Secondly, they want you to rest and sleep as much of the time as possible to let the Ketamine do it's job.  Outside interference may prevent the Ketamine from giving you the best possible outcome.

Having been this route several times, I understand this.  That doesn't make it any easier to not speak to your husband or daughters for six days.  As a nurse, I know that due to the decrease in reimbursements by health insurance companies (which by the way don't actually pay for nursing per say) staffing isn't as good as it used to be and nurses are doing more than they used to do; often the nurses are stretched very thin through no fault of their own.  When in another situation, I recommend that family members stay with the patient but in this situation it isn't permitted.  Loss of control of your environment is a scary situation for everyone.

The part that I am looking forward to is that the evening before my admission, I am getting together with some friends and family at a chinese restaurant in Center City Philadelphia.  Some of them are RSD Facebook Friends, some are friends that I grew up with, some are friends I knew when I lived in the area and some are family members.  Other than 8 years when I lived in the Syracuse NY area and the 5 1/2 years that I've lived here in FL; I lived my whole life in the Greater Philadelphia Area.  There are a lot of things that I miss about the area including many many people, pizza steaks, TastyKakes, Philly Soft Pretzels, hoagies, and much more including the sports teams.  The only thing that don't miss is the weather but that's another story.....

The plan is that I'll arrive next Sunday and be admitted Monday.  I will be in the ICU at Hahnemann Monday - Sunday if everything goes according to plan being discharged on Sunday.  I have a friend coming to stay with me at a local hotel for a couple of days while I regain my strength so that I can fly home Tuesday 2/7/12 to continue my recovery.  Ketamine can be very draining as can lying in bed for 6 days doing nothing.  It is amazing how lying in bed for 6 days can cause you to become weak.

Hopefully in addition to the increased RSD pain that I've been experiencing since October, my Phila neurologist will be able to pinpoint the reason for my daily headaches (mostly migraines), and come up with a plan to treat my severe carpal tunnel syndrome as people with RSD are not good candidates for the carpal tunnel release.  We have a 50% chance of developing RSD in the hand where the release is done.  Without the surgery, I will eventually completely lose the use of the right hand (which is the worse one) and then the left (which is not far behind).  My FL neurologist is wondering if the release is done with Ketamine followed by the 6 days of inpatient Ketamine would decrease that risk to a reasonable risk.  My FL neurologist is not an expert on Ketamine so he is deferring to my Phila neurologist on this subject.  Otherwise, my FL neurologist recommends doing nothing.

This week I need to prepare documents that I will need for my admission, such as my Living Will, medication list, an appreciated medical history, a copy of the lab work that I had done last week and then get together the things that I want to take with me.  I want to spend as much time as I can snuggling to my dog Nemo as I will miss her.  If only hospitals realized that people would recover much better with their pets rather than without!  Nemo has to board next week (which fortunately she loves).

Off the subject; today is my youngest daughter's, Kim's, 28th birthday.  I don't know where the time went.  It seems like only yesterday that I was at Booth Maternity Center having her and yet 16 of her 28 years; I've had RSD.  That's more than half of her life she has had a mom that is only partially functional, but still managed to read all of her homework assignments (before the technology that she has now that reads to her) and type for her (before the technology that speaks what she types); so I think that we managed very well.  No, I couldn't take her to the barn for her riding lessons.  Her grandmother and father did that but they managed to get me to her competitions.  I didn't make every parents' night at school (stairs at school were not doable for me) but I made sure that her dad was in town those nights and went to the girls' back to school nights.  We managed.  One of the funniest things was trying to guide Kim when I was non-weight bearing on crutches (before she had a guide dog).  She would accidentally kick the crutch out from under me while we were walking then grab onto me to prevent me from falling. We didn't go out too much during those weeks without help.  Fortunately it was only a 6 week period in 1996 unplanned and a planned period in 1997 when I had fusion surgery.  The first time around, my car was totaled and I wasn't driving for most of it anyhow.  You would have thought that we would have thought it through the second time around.....but we didn't.

I was chatting with my fellow administrators the other day about the grieving process involved in RSD and in any serious or chronic illness and how important it is to go through that process in order to be successful in your treatment.  If I get a chance this week.  That will be the topic of my next entry because I feel so very strongly that one of the most important things we need to do is to work out our psychological recovery in order for us to have a physical recovery...more on that next time.

Monday, January 16, 2012

A Fallen RSD Angel

I would like to preface this post by saying that I have the permission of the mother (Leslie) of this fallen RSD Angel (Andrea) to talk about her daughter as at this point, it is still too painful for her to sit down and write her story.

This weekend, I was reading posts in the Ketamine Klub on Facebook (which I am a co-administrator); which is part of my morning routine. I came across a one line post in the middle of a thread.  It read "My daughter died from the Ketamine coma treatment".  Other than one of my  newest administrators, who had only been appointed the day before, no one seemed to have noticed this post.  I immediately responded to the post on the thread and sent this mom a person message with my condolences and to let her know that if it wasn't too painful, I would love to hear her daughter's story.

As you know by know, I consider myself one of the "pioneers" in receiving Ketamine  (someone else called me that because it sounded better than guinea pig).  Well Andrea was also one of the pioneers of Ketamine.  She went to Germany in 2002 for a Ketamine coma and was pain free for 19 weeks.  Unfortunately, her insurance would not cover the outpatient infusions so she wasn't able to receive follow up Ketamine.  Her pain returned and she got sicker.

At some point after her RSD returned, she needed a heart valve replaced which requires that you be on Coumadin for life.  Her RSD continued to ravage her body and in 2008 arrangements were made for her to return to Germany for a second coma treatment.  It was at that time that the program in Germany was closed and Andrea's dream to return to Germany slipped away.

Andrea always fought for others with RSD.  She started an organization called fighting4us.  She was always trying to help others. She got RSD from a chipped bone in her foot at age 13 and lived with it for 13 years.  Andrea was a fighter herself.  Although I never met her, through messaging with her mother, Leslie, I feel as though I knew her. I know that I would have liked her because I admire her already.  

In 2009, arrangements were made for Andrea to go to Mexico in February for a second Ketamine coma.  The medical staff there knew that she had the valve replacement.  Andrea's cardiologist and her Philadelphia neurologist both gave the clearance for the coma treatment.  The staff in Mexico knew that Andrea was on Coumadin and that they would need to put her into the Ketamine induced coma and bring her out of the Ketamine induced coma more slowly.  While Andrea was in the hospital, she was switched to Heparin (which is normal protocol).

Leslie describes Andrea's coma as being more restless in Mexico than in Germany.  She said that she slept peacefully in Germany but appeared frightened in Mexico and had to be restrained because she was thrashing about.  As they were about to bring her out of the coma, Leslie states that the family was sent home to rest being assured that Andrea would be brought out of the coma slowly and that the full staff would attend to her.  When they arrived in the morning, Andrea was wide awake.

A day and a half after she woke up, Andrea's heart gave out.  Andrea passed at 26 years of age on February 11, 2009; far too young.  Andrea's cause of death was heart failure.  No parent should have to burry their child.  No parent should have to watch their child suffer with something as hideous as RSD. Unfortunately, as we all know too well, many children do suffer with RSD.  My heart goes out to Andrea's parents for having to do both; watch their beloved Andrea suffer with RSD and having to burry her!

For those of us who have RSD, we know the pain that Andrea suffered in her short life.  For those of us who are caregivers: mothers, fathers, spouses of RSDers, we can identify with Leslie and Gus in their intense pursuit to find any relief for their beloved daughter and can't even imagine the pain that her loss must feel like.

I like to think that we go into these extreme treatments, like coma Ketamine, with informed consent, knowing the risks; but do we all really know the ultimate risk of the treatment.  Everyone who goes into a treatment is someone's son or daughter, could be someone's mother or father, sister or brother.  I am not saying that you should not have these treatments.  What I am saying is that you need to be sure that you know what all of the risks are and that you are willing to take the ultimate risk and put your family through the ultimate outcome before you decide to go through this treatment.

Since I am a nurse, I knew what the risks were going into a Ketamine induced coma.  I weighed those risks against what the quality of life that I had at the time.  When I had the Ketamine coma; there were no other Ketamine options like there are now.  There was no inpatient awake.  There was no outpatient infusions. I also had faith in the German health care system.  My father and uncle were born in Germany and I had distant relatives that still lived there.

Andrea's story has touched my heart for a whole host of reasons.  Andrea is one year younger than my oldest daughter.  I can't imagine not having been able to spend the past three years with Laura in my life.  Andrea spent half of her life fighting RSD and yet helping others fight RSD.  From that standpoint, I want to be just like Andrea.  Although I never met her, I have thought  about her and her family a lot over the weekend.  

After my coma in Germany, I spoke to many patients and their families who were considering going to Germany about my experience.  I gave them suggestions about what to bring with them, what to expect during the coma treatment in German, etc.  It is very possible that I spoke to Andrea or Leslie prior to their trip to Germany.  I hope that if I did, I made a positive impact.

Andrea, I hope that your story will cause people to stop and think about all of the risks before they make the decision to go to a foreign country with a less sophisticated health care system than that of the US.  Again, I'm not saying that we shouldn't go.  I'm saying that we all need to do our homework and know everything that we can about the treatment, the facility, the doctor, the risks, etc. before going to have the treatment. You need to weigh the quality of life that you currently have against the potential risks of the treatments.  Ultimately it is your decision and it should be an informed decision.

Perhaps when Leslie and Gus are feeling stronger, they can join us in our fight to get all insurance companies (see the link on the Ketamine Klub to Erin Brockavitz's web page to tell your story) to cover Ketamine here in the US.  Had Andrea's insurance company covered her outpatient follow up Ketamine after her trip to Germany PERHAPS (of course there is no way to be sure) it could have held her coma treatment. If, like Jon Haag, coma treatment were available here in the US PERHAPS (again there is no way to know because people die here in the US too) coma Ketamine would be safer.  At least, we wouldn't have the expense of paying out of pocket, travel and treatment would be available to more people.  The more a procedure is done, the safer it becomes.

Leslie and Gus, thank you for letting me share this little part of Andrea's story.  She must have been a remarkable woman.  When you have her foundation set up, I would love to share information about that with my readers as well.  No parent should have to burry their child and no child should have to endure the horrors of RSD.

A Fallen RSD Angel

Let me preface this post by saying that I have permission from the mother of this fallen RSD Angel to talk about her; as at this time it is still too painful for her to put pen to paper so to speak.

This weekend on our Ketamine Klub page, I saw a posting that made my heart sink.  There was a one line post.  "My daughter died from this

Tuesday, January 3, 2012

A more recent Ketamine Article and preparations for Ketamine

As most of you know, I'm going in to Hahnemann later this month for Ketamine.  I've had Ketamine over the past 10 years and have been in on it from the start at Hahnemann.  I found this article that I found very informative.

Today I made my reservations for my flights and hotels.  I arranged for a "care taker" for the few days that I am in Philly after I'm discharged.  Now I will be putting together my music and hospital kit.  I've been working on getting over bronchitis and a sinus infection which hopefully I've finally beat.  Now the weather has gone from warm and sunny to cold and windy so I will most  likely stay inside until this wintery weather passes.  The good thing about Florida is that winter weather doesn't last long.  We get big swings in temperature in the winter but it doesn't last long.  The swings reak havoc on migraines and RSD but I guess that it is better than sustained cold weather.  I need to concentrate on staying well, getting blood work and an EKG done and preparing some meals for my return next month.  I'm sure that my hubby will be traveling while I'm in Philly so I will have to board my little Nemo.  Fortunately she loves the place that she boards and I know that they will spoil her.  If my mom weren't wintering in the FL Keys I would bring her up and she would stay there.  That's what we did in 2009 when I was inpatient at Hahnemann.

Now that the holidays are over, my focus will be on getting prepared for my trip to Philly and on getting myself back in better health!