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.