January 29, 2012 I began my journey to Philadelphia for my fifth ICU inpatient Ketamine infusion at Hahnemann Hospital. I flew from Orlando to Philadelphia where my youngest cousin Joyce and her middle daughter Ainsley picked me up at the airport and took me to my center city hotel.
Although Joyce is 18 years my junior (and her daughter 50 years my junior almost to the day); of my first cousins she and I am probably the closest as adults as I am to any of my adult cousins. It was great to have that time to catch up to her. Once I got settled into my hotel, I got a visit from a high school friend (Donna) who I hadn't seen in close to twenty years. It was nice to have a one on one chat to catch up. Shortly thereafter, a RSD friend (Diane) who I've never met in person, arrived at the hotel to take bring me a pizza steak (a Philly special that we don't get in FL made by her son!) and to take me to supposedly meet some other friends at RAW in center city. We had time for the three of us to chat before we had to leave for the restaurant. It was as if we'd always known each other through our interactions on a Facebook group for people with RSD looking for information and support on Ketamine. (Ketamine Klub for CRPS/RSD Patients)
At 5 p.m. Diane and I headed over to RAW, expecting a party of 10. By 6:00 we realized that it was only going to be the two of us, so we had a very nice dinner together. Although Diane and I had a great dinner, I have to admit that I was really disappointed that old friends and family member didn't make it over to RAW. I alway say that the people in Philly are so much more friendly than here in Orlando. In the 5 1/2 years that we've lived here, I really don't feel like we have any friends here; so I was really disappointed that only one friend and one virtual stranger came to see me in addition to my cousin Joyce who picked me up from the airport. I guess I have too high of expectations of people.
After dinner, Diane headed home. It was a long anxious night for me. Although I had had coma Ketamine twice, inpatient Ketamine at Hahnemann four times before (as well as multiple other ICU stays at Hahnemann for other treatments as well as regular admissions on their neurology floor) and dozens of outpatient Ketamine infusions; I was very anxious about my upcoming admission. I think that no matter how familiar you are with the procedure; going into the hospital, especially the ICU is frightening or at least anticipation of it is unnerving. Perhaps even more so if you are a RN and know all of the things that can potentially go wrong.
It was a very long sleepless night. The Thursday before, I had received a call from Hahnemann's admissions office telling me that I would receive a call early in the morning telling me to come into the hospital and to report to the 4th floor. At 5 a.m. I accessed my portacath. This is an IV port in my chest that provides IV access. No, it is not normal for the patient to access their own port. It is something that I am anal about. I have always done my own port care since one was placed in 1999. I know that my sterile technique is excellent. I guess it is something that I have some control over in a situation that a patient has very little control. Before every hospitalization or procedure, I always access my own port. I like a specific needle and I'm allergic to the Tegaderm that most facilities use (I use Op-site which most facilities don't have and my IV equipment provider provides for me). I also have experienced long waits while the hospitals find a nurse who is port certified to access the port upon admission; so I've gotten into the habit of going into the facility with it already accessed using my own equipment.
I waited and waited and no phone call. RSD Facebook friends started texted me..."any call yet?". No call. It was 7:00 a.m. and no call. I knew that the other Ketamine patient had to go to the OR and get a port put in (something I only knew because of our Facebook group otherwise I wouldn't have even known what was going on with the other Ketamine patient due to HIPPA laws. My doctor has 2 ICU beds held every week for an inpatient Ketamine admission). 8:00 came and I decided to call admissions. They said that there was no bed available and they'd call me. I doubted that this was so since normally the Ketamine patients are discharged on Sundays. Most likely it was that the nurses weren't ready for an admission. Finally at 9:30, I decided just to check out of the hotel get a cab and go over to the hospital and wait there as I was going crazy in the hotel room (which was freezing and had no separate thermostat for the rooms). I went down to the desk and checked out. They got me a cab for the three block ride to Hahnemann but my body was now used to FL weather and I just couldn't handle the walk around City Hall dragging my luggage in the cold to Hahnemann. I had to go to admissions on the first floor to sign a paper that said that if my Blue Cross didn't cover my Medicare Co-pay (which it had in each of my other admissions) then I would pay the difference. Just as I was signing the paper, my cell phone rang and it was admissions calling to ask how soon I could be there. I told them now. So they said to report to the 4th floor; room 405. They didn't say that it was direct admissions. This part had all changed since my last admission in 2009 when you checked in on the first floor admissions where I was at the time.
I made a quick call to my husband knowing that it would be the last phone call that I'd be permitted to make until my discharge, texted my two daughters who were at work by then and unable to accept phone calls and texted one of the administrators of our Facebook RSD group to let them know that I was finally being admitted so that they could post it to the group. I then put my phone on airplane mode so that it could act as my iPod for music and not a cell phone any longer and headed towards the elevators that I had taken from the first floor dozens of times before. I'd always made that trip alone as even when I lived in Philly, I'd always been dropped off at Hahnemann either because my husband was out of town and I'd taken a cab into town or my husband dropped me off early and went to work and I just waited in admissions until they had a bed.
When I got to the fourth floor, there was no room 405. I looked perplexed and someone asked if I needed help (they saw me dragging a huge suitcase as I had to have everything I needed for both hotel stays plus the hospitalization with me). I told her that I was looking for room 405 and she had no idea what I was talking about. I spotted a sign that said "direct admissions" and told her that this was most likely where I belonged. If there was a room number then it was most likely on the open door and not visible. I went into the room and the admission process began. For whatever reason, I became more at ease. Talking to the admitting nurses and being in "my element" made me more at ease; as crazy as that sounds.
Once they did all of their paper work and vital signs there was the long wait for the transportation team to take me in a wheel chair up to the ICU. I find this sort of ironic since I walked from the first floor admissions office, where I signed the form that they needed, up to the direct admissions office but policy doesn't permit you to walk from the direct admissions office to the ICU. That's hospital policy for you!! I was taken to a room without windows that was smaller than the clothes closet that my husband and I share in our bedroom. There was a bed, a chair and a tiny sink for the staff. That is it. It was directly behind the nurses' station so it was very noisy. I had to keep asking everyone who came in and out to close the door or I could hear everything that the staff was saying. The only light was a fluorescent light directly over the bed and extremely bright. Of course I couldn't control the light or the volume on the TV because the control was broken.
Blood work, and EKG and chest x-ray (to check port placement on a port that's been in place since 2007 and they'd already taken blood from) were all done. The critical care nurse practitioner (NP) came in and introduced herself, took a history and did an exam. She explained that it would be her team that would follow my care in the ICU. Next the neurology chief resident came in and did his assessment and explained that Dr S would be in later. There were residents, nurses, techs, etc. in and out all afternoon. Finally I asked if I was ever going to get lunch. The nurse said, "oh that came up hours ago, let me order you something". Of course breakfast in the hotel was at 6:00 a.m. - 7:00 a.m. because it was meant for businessmen so I was starving.
Eventually IV fluids were hung and potassium hung because my potassium is always low when I'm hospitalized but normal when they check it as an outpatient because they use different values inpatient than outpatient. This was an issue though out the hospitalization. Once the Ketamine was hung, you can't give IV potassium as it is incompatible with IV Ketamine. Since my potassium continued to be low in spite of multiple dosages, they had to keep giving it to me orally, first as a horrible liquid. I then asked why they couldn't give it to me in pill form; as I knew that it came in a pill form. The nurse asked if I as good at swallowing pills? I said yes, so for the rest of the week, I got the potassium in pill form. I'm sure my level never reached the inpatient level because it never does. I predicted it to the admitting nurse when she drew my initial labs. It is so stupid that there is a difference between the levels inpatient and outpatient and that they are so anal about the slight difference.
Finally in the late afternoon everything was in place to start the Ketamine. The nurse could hang the bag, but the doctor had to actually push the start button on the IV pump. IV Versed was pushed and I was told that there was a shortage of IV Ativan so that I would have to take that by mouth. Let the fun begin!! They start the Ketamine out at 10 mg per hour and increase it by 10 mg per hour every hour until you reach 40 mg per hour where it remains for the next five days.
Now, I have mentioned before that I have had a lot of Ketamine over the last ten years and I have developed quite a tolerance. Most people feel a bit tipsy or goofy when the Ketamine gets to the 40 mg per hour; at least that is how it has been described to me. It doesn't have that affect on me. I am able to have a perfectly rational conversation with someone at that level. The reason that they do not allow patients to have cell phones or computers while on Ketamine at Hahnemann is because they may do something goofy that they may regret later. If you are caught with a cell phone, it will be confiscated (I found that out in 2009 when I tried to call my husband). This time, I explained to the nurses that although this was an iPhone, it was on the airplane mode so that it couldn't be used as a phone and that I was using it as an iPod. It is acceptable to have an iPod to listen to music during your Ketamine infusion.
Immediately after being given the IV Versed, I would get a little bit sleepy, but it didn't last long and with all of the noise and interruptions, I really didn't sleep. One of the precautions that was taken was that an ultrasound tech did an ultrasound of both legs to check for blood clots. Being immobile (and long plane flights) can predispose you to blood clots which can travel to your heart and lungs and be fatal. This ultrasound tech lived in the Orlando area near my home for a while. There was a particular incident that happened in my subdivision in 2007 when we both lived here. During my ultrasound, we were discussing it in great detail. Eventually she made a notation about how I was able to hold a rational detailed conversation in my chart as most of the Ketamine patients sleep during her exam. When Dr S made his rounds that evening, he asked me if I wanted to see a friend of mine who works with him. I said "I've known him for 29 years". His response was "my wife has known me for 42 years but that doesn't mean that she wants to see me". To which I answered "let me rephrase that; we've been good friends for 29 years, of course I want to see him." That confirmed that I was far too awake and rational so he told me that they needed to sedate me with other medications so that I would sleep because I was far too awake. When my friend came in I told him that this might be the last rational conversation that I have for a while because Dr S plans on snowing me. We had a nice visit and it was our only visit but Dr S wasn't really successful in snowing me. With all of the blocks and procedures that I've had over the past years since 1998 when I began treatment for my RSD, I've been given so much sedation that the standard sedation just doesn't snow me.
Additionally, it was arranged for me to have a block to help with the RSD in my face. It was done on the right side of my neck as the RSD on my right side is worse than my left side. It was done right in my ICU bed with the Ketamine running. It wasn't able to be done until Friday due to the doctor's schedule otherwise, he would have injected the other side on another day.
Because I have a neurogenic bladder, I catherize myself 4 times a day. Well the critical care NP assumed that I would be incapable of that, plus they have to have control over things like that; so the nurses had to do it. The nurses would have preferred that I have a foley but the NP was afraid that I would be unable to urinate afterwards and that would hold up my discharge so she wanted me to be straight cathed like normal. Some of the nurses were quite rough. Upon discharge I was quite sore.
I also have very sensitive skin, as do many of us with RSD. I asked that the cardiac leads be rotated. I even gently pulled some of them off so that they had to change them but I still ended up with "burns" on my chest where the leads had been that I am still applying cream to to get to heal.
Back to the Ketamine, Monday through Saturday morning the Ketamine ran at 40 mg per hour, I was given the Versed and Ativan and a routine of catherizations, meals, change of shifts, doctors' rounds, etc. settled in. It seemed as though there was always someone in my room and sleep was very disrupted if at all possible. Again, other people have reported to me that they slept the entire six days and have no memory of the entire hospitalization but this was not my experience this admission nor the admission in 2009. I can tell you every TV show that I watched and every song that I listened to on my iPod.
By Sunday morning, my Ketamine was weaned off (in 10 mg/hr intervals just as it was increased), the IV fluids were discontinued and I was ready to be discharged. It had been arranged that my Mom's sister and her husband would pick me up from the hospital as you need an actual person to be there for discharge and they would drive me to a hotel near the airport. A friend who I've known for 30 years, from Syracuse NY was driving down to stay with me until I would fly home Tuesday. My discharge instructions were no activity for 2 days. When I got to the hotel, my Aunt and Uncle dropped me off around 11:00 a.m. and my friend wasn't due to arrive until 4 p.m. I was starving. I texted my friend Diane who graciously agreed to bring me some food. Since there were no showers and they didn't allow you to wash up with anything other than microwaved antiseptic bath wipes in the ICU, I headed to the shower. That was so exhausting that I laid down for a nap. Having not really slept for a week, I was exhausted.
Ketamine really helps to pull the edema that RSD causes out of your body, plus they are pumping you full of IV fluids. Additionally, I had asked my cousin Joyce to bring me bottled water for the hospital to be sure that I would stay hydrated because hospitals are always dry. Well, in the hotel I didn't have bottled water, slept most of the day/evening/night Sunday and all day Monday forgetting to drink and barely eating. Tuesday I flew home and flying is also dehydrating. Big mistake; because by the time I got home, I wasn't urinating at all; even when catheterizing. I started pushing the water, had my husband get cranberry juice to help my bruised urinary system from the rough catheterizing. Fortunately after 24 hours I was starting to rehydrate myself and avoided being rehospitalized for dehydration.
A word for the wise, if you go for Ketamine, remember as you are sleeping it off after, have someone wake you up on a regular basis and force you to drink a glass of water hourly so that this doesn't happen to you. I never thought to have Amy do it and my husband would never have thought to do it. I figured it out on my own when I was home, but it was almost too late. I had no urine, no tears and probably should have gone into the ER for hydration but any RSDer knows what a nightmare it is for someone with RSD to go into the ER. Since I wasn't vomiting and didn't have diarrhea, I knew that I could hydrate myself orally. Had I experienced one of these two complications, I would have either called my PCP for an order for home IV fluids through my home IV company or gone into the ER for hydration.
The first 48 hours at home, I felt very depressed. Dr S did give me a prescription for Ativan 2 mg to take as needed. I take Ativan for sleep and didn't want to add to my tolerance. Besides Ativan is for anxiety and not for depression and may have added to the depression. I felt that the depression was from coming off of the Versed and Ativan that they were giving me every 4 - 6 hours in the hospital to try to make me sleep. Had I not felt more like my self in 72 hours or if I had any suicidal ideations, I would have called my psychiatrist (who I see every six months to manage my anti-depresion medications) immediately or if it were after hours called a crisis hot line. I know myself very well having dealt with depression since shortly after my accident 16 years ago on March 4th. By Wednesday, I was feeling better. It is very important whether you are receiving inpatient or outpatient Ketamine to monitor your mood because some people do become anxious or depressed. I remember that I felt depressed in the past after Ketamine. I don't think that it is the Ketamine itself as they are now using it to treat depression. I believe that it is the other medications that they give with the Ketamine that when stopped trigger depression.
I hope that by sharing this most recent experience of inpatient Ketamine, it will give those of you who are considering an inpatient Ketamine treatment some idea of what it is like. I am in the process of setting up follow up outpatient infusions here in FL in Miami at Dr S's suggestion rather than traveling back up to Philly on a regular basis.
I have also set up Botox injections for mid-March to see if we can do something for these chronic migraines. Dr S also recommended that I see a hand surgeon about the severe pain caused by my carpal tunnel syndrome to get steroid injections into my wrists. That is scheduled for February 16th.
((((HUGS))) to all