What Do You Do When the Rug is Suddenly Pulled Out From Under You?

I think it is telling in some way that I have actually put off writing about this “event” for as long as possible. I wonder if I believe that writing about what happened is somehow reliving it. Maybe part of me is not ready to again experience the fear, the loss of control, the dependency, the surrender, but perhaps that is just the part that needs to face what happened to get some closure and move on.

No one plans to spend 24 days in the hospital. When I woke up on Friday morning September 4, 2010, in my regular bed, I didn’t know I wouldn’t be sleeping in it that evening, let alone even be seeing our house again until late September.

“The part can never be well unless the whole is well.”  Plato

(I am recapping this paragraph from Dermatowhat?? Pt. 7 because I think it is important to note the events the day of.)

I remember sleeping more than usual. I remember not being able to swallow very well even without food. I remember making a vega shake and drinking it during the day. I remember feeling extra lethargic and thinking that a walk outside might just revive me; give me some needed energy. I remember taking a walk around the block, including a bit of a hill, around 6:15 pm. I remember coming home and reaching for my pills but deciding against it as I was unable to swallow. I remember feeling dry and reaching for water. I remember not being able to swallow for several seconds and then I remember my heart starting to beat fast as if it was kick starting my body, like when you get a rush of adrenaline.

Then I remember calling Dave.

I think I was sitting on the couch and when I went to speak to Dave, the words came out strange-somewhat slurred, perhaps because of my dryness. Mostly though words took a lot of effort. I realized I was speaking unnaturally-not connecting my words-very mechanical-like a robot. Dave was asking me questions like, “Do you know who you are?” I answered, “Yes, I am Lisa.” “Do you know where you are?” “Yes I am at home. I am on the couch.” “Do you know what day it is?” etc. I could respond but not connect thoughts. It wasn’t conversational. I could tell my speech was altered too but didn’t want to panic. Dave was at least 40 minutes away picking up a friend in Half Moon Bay, and I needed to stay as calm as I could until he returned home.

I remember walking around the house from room to room as if going through the motions grabbing my shoes, standing near the door, as if knowing I would need to leave to go somewhere but not exactly sure where or why.

When Dave arrived home, I recall being at the door ready to go, and he and his friend Ed, both with medical training, convinced me to sit while they did a quick assessment-checking my eyes, my pulse, my skin, etc. Someone suggested I get up, perhaps to check blood pressure or circulation. I remember two things that were strange upon trying to get up: (1) my speech started returning to normal, and (2) I had no ability to lift my body. I actually checked and felt my legs to make sure I could still feel my legs. I had sensation, just total weakness. It was then we jointly decided the ER would probably be the right place to head. I wasn’t questioning this decision at the time.

“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illness. ” Hippocrates

I remember only a few details of Friday night’s Emergency Room visit, such as getting an IV, blood tests and a CT; not being able to drink and being incredibly thirsty, and finally getting admitted Saturday morning after many hours waiting. I also remember Dave sitting next to me crazy worried, having not eaten any dinner and having not slept all night. I remember trying to convince him to eat something and finally to just go home and get sleep. The ER doctors were apparently scrambling to figure out what was wrong or happening. There was no rheumatologist on call late night. I remember someone calling my rheumatologist, waking her up, I assume to get her assessment and recommendation for treatment. I recall she was actually on or going on vacation. I felt badly about having to disturb her. I recall her recommending and receiving a high dose-like 1000 mg-of prednisone and not being able to stand when the doctors or staff asked me because my upper and lower body were both completely weak. I recall an intake nurse asking questions about what items of value I had (why I remember that I’ll never know!)

Hospitals are not places of rest. I learned this quickly! Saturday early am I was admitted fortunately to my own room at Kaiser Hospital S SF, and I remember a lot of activity. Many night and morning nurses, doctors, other staff, a dietician, etc. coming and going, introducing themselves and telling me who would be attending to me for the day. They had a white board that they used to indicate who would be the nurse, daily staff, etc. I was so out of it and so tired but don’t remember sleeping much because someone was constantly there to take my blood pressure, temperature, blood, stick monitors on my body, administer medicine (e.g., 2x daily crazy painful heparin shots because I wasn’t moving), ask me questions, and of course the first few days, to give me a bedpan since I wasn’t able to get up… that was a new experience-and one that made me feel quite dependent and a little embarrassed.

mom's avatar

As soon as I was able, after I was admitted, maybe Saturday morning around 7:15 am,  I called my mom and told her I was in the hospital.Without even asking, she told me she’d be on the next plane she could and would come from AZ to be there. She knew Dave worked full time and how much of a burden it would be for him to take off work. We were both extremely grateful. Sometimes, when you are in the hospital with strange people around you, having your mom there with you is the best, most comforting therapy there is.

“Sickness shows us what we are…“

I remember my rheumatologist coming in and deciding on a plan with me. The plan was to give me high dose prednisone for at least 3 days, do neurologic tests, work on the swallowing, have a soft foods diet, and do that endoscopy that the gastro-enterologist had scheduled for 2 weeks from the date I last saw him… I’m sure there was more, but it seemed to me I was just being shuttled back and forth between MRIs and procedures and sleeping when I could rest. The endoscopy wasn’t pleasant, but at least they gave me something to partially sedate me. I do remember actually feeling the tube either go in or out and not enjoying that sensation!

After a few days on the high dose prednisone, I still wasn’t able to stand and had so little strength in my upper and lower body. My blood work didn’t show elevated enzymes like they would expect for a flare of the DM. I remember a neurologist coming in-one I’d actually seen before who conducted my EMG in 2008-testing my strength and telling me “not right” “not normal,” but I already knew this because I had no strength. I think this is when my rheumatologist decided we needed a Plan B. She convinced me to try the IVIG again, remembering that I didn’t tolerate it very well in January. She said they would administer it over 5 days and 8 hours a day and give me all the premeds to ensure a very slow drip and low side effects. She also said they’d try IgA poor (meaning it would have less  IgA antibodies), again to minimize side effects. I agreed.

IVIG

I remember being switched to the ICU to be monitored while on IVIG the first few nights. The first night my heart rate kept slowing and setting off the alarms making it crazy to sleep. I remember being poked and then woken and given a really salty medicine. It was potassium. Apparently my potassium was low several times at the hospital. Dave was with me that night, and I recall he kept telling the nurses that my heart monitor kept beeping (which they knew because they were monitoring me!).

I was tolerating the IVIG but not able to notice a significant difference in strength. I remember different hospital physical therapists coming to my room and working with me to stand on the edge of the bed, with assistance from belts to keep me upright and more stable, otherwise I would just lean over and could fall back down. Standing was difficult and took effort and energy. Then again, everything seemed to take energy! I also wore leg compression that squeezed each leg automatically timed every 30 seconds or so to bring oxygen to the leg since I was not standing much or walking. The nurses worried about blood clots, and compression and heparin shots were treatments that prevented them. After 2x daily shots, the compression looked really good.

Orange Green and White… I can’t eat another bite!

I also remember the hardest thing for Kaiser staff to get right was my crazy restricted diet. It was enough that it was entirely mechanical foods-(super soft), which I came to term orange green and white-but I was gluten free, sugar free and dairy free too! It’s no wonder that they kept getting it wrong and bringing me milk with a meal! The orange was either carrot or sweet potato or a mixture of the two. I quite liked that flavor. The green was usually peas, and the white was either chicken (after 12 days I could not eat any more white), potato or rice mixture.

I think at some point I asked mom to bring food from home to supplement orange green and white, but it is no wonder I lost weight, in addition to muscle mass, in hospital.

And mom stayed. She was with me at the hospital day in and day out, through doctors and tests, naps and occasional tv or movies (though I remember very little concentration to watch anything!). Dave would visit each night after work and relieve her shift so she could go home and get some sleep! During the first few days, mom and Dave took night shifts too as being on all that heavy medicine left me jittery and more anxious perhaps than usual! The nurses were wonderful about bringing a sleep chair into the room. I remember visitors daily, but it was so surreal feeling. I know neighbors visited, friends called and came and left wonderful flowers and cards; it seemed someone was always there with me; someone was always coming or going. I just don’t remember a lot of conversation or having energy to talk much. Thank you if you visited me. I know your spirit helped to brighten mine! I felt blessed and loved!

I do remember one of the first few nights watching Princess Bride with close friends and Dave because there was a VCR in that room and someone brought movies! My attention span was pretty short. I don’t recall even being on a computer or reading anything for weeks in the hospital. I sort of just surrendered. Allowed the doctors and nurses to treat me; allowed young male nurses to bathe me in bed or help me to the commode; allowed myself to be poked and prodded daily and didn’t fight or assume any control over most things. I was a patient, but it didn’t feel like me in that hospital room. It was as if I was going through all the motions but not really all present. Reacting to all the crazy stimuli being thrown my way.

Here’s the crazy thing. While mom was with me, dad was doing the same thing with my grandma in AZ. She was admitted to a hospital to treat infection and had to undergo a 2nd knee surgery (she last had one in 2009). She was on IV antibiotics and needed to stay in the hospital to get treatment and then rehabilitation. She was 93 at the time (and now doing great at 94!) Dad visited her every day.

One event made me realize just how vulnerable and empathetic I was. One women nurse who was treating me was talking and telling me that her son was severely disabled and unable to receive much from disability. I was really upset about this for some reason and questioned why I was able to receive such good care, have such support, love and compassion while someone else who needed it did not. Perhaps my heart was just much more open in the hospital.

One other crazy event? The San Bruno PG&E gas explosion that killed 8 people and destroyed 37 homes! I recall Kaiser was the triage center for the explosion/fire that happened just a few miles away September 9th, 2011! I heard the call on the loudspeaker for Code Blue I believe, and for all available staff to gather and help. It was truly amazing and heartwarming to know that everyone was coming together to help for an incident of this magnitude so close by! Some of the nurses I spoke to had extended their shifts to help out. The roads were crazy, and I remember Dave and my sister-in-law dealing with the impacts to get to the hospital, and mom having to take an alternate route home; it was a tense few hours!

At some point my case/social worker recommended rehabilitation. At first I just wanted to go home, and the idea of spending more time in the hospital didn’t appeal. Further, rehabilitation would be at Kaiser hospital in Vallejo, far from where we lived and where Dave worked. My understanding was that rehab would be pretty intensive, involving several hours a day for physical, occupational and speech therapy. I was barely able to stand for more than a minute at the time. How would I be able to undergo physical therapy for an hour? But when I began to think about where I was in terms of my dependence, and what it would be like at home-without any accommodations to walk, to make food for myself, to go to the bathroom (I was still using a commode right next to my bed), to bathe (I was getting bed baths for 12 days and hadn’t had a shower!), to get around the house (they would have ordered a wheelchair and walker), and what extra burden it would have been on mom, I opted to go to rehabilitation. My mom of course wouldn’t be anywhere else and extended her stay to come to Vallejo with me.