Journal entry by Matthew Ward —
Christmas Day- 2019
Awakening
I opened my eyes. Cindy was there and told me that I was in the ICU at Stanford Hospital. I was battered and beaten- not the resplendant new plummage of the reborn Phoenix (I wonder what their trick is?) but I was alive so I didn't see any point in quibbling. There was a strange arm in the hospital bed with me. It was horribly discolored and swollen. I thought it might be mine, but it wouldn't move. "What a cruel trick", I thought. "Trying to frighten me by putting an amputated arm in bed with me". But I fooled them. I wasn't frightened. I just felt sad for the poor fellow.
It turned it was my arm after all. And I felt even sorrier.
I was pretty groggy coming off of the sedation and the paralytic so the memory of that day is
spotty. At some point that morning my daughters and Nate showed up and tried to salvage Christmas by opening stockings and presents. I made it through a couple but that was all I could muster. And my plans for their gifts had been cut short. They were very sweet and said that having me wake up on Christmas Day was a hard gift to beat. Andy drove all the way from Santa Cruz to give me a book.
Visions
In the week that followed I was much the same but the grogginess was spiced up with hallucinations. Having done this hallucination thing before (not referring to my hippie days here), during my first transplant, I have learned that these visions are not frightening and while I don't ask for them, I find them to be interesting, and at times informative. The ones six years ago were very dreamlike. I would be sitting in my hospital bed and a part of what was going on, but all I had to do was close my eyes and a curtain would drop and I'd be in another world.
The December 2020 illusions spanned both real and the dream worlds- open-eyed or closed- and colored many of my "memories" from that time.
I dreamed/thought that the ICU facility was in Bridgeport, California of all places (only a five hour drive from Stanford!). In my addled state I believed that my family could take me to the saloon for a pint and some barbequed ribs. I kept myself alive waiting for this blessed event, but for once they let me down. I guess, given what I'd put them through, that makes us even. To be fair, I was starving. I had lost some 25 lbs through this ordeal and it's a testament to my undying optimism that I actually thought I could manage a trip to a saloon. If I couldn't lift my arm, how did I imagine that I could hoist a pint! Hope Springs Eternal!
I imagined drums and dreamed up a Native American Pow Wow going on outside the ICU. I told Tierney to take me to it and she asked what I planned to wear. I told her "My skivvies!".
Then there were "The Sandblasted People". I first noticed the man. He was usually standing off in a corner of the room observing me. He wore shorts and was shirtless and had ruddy sunburnt skin and for that reason I took him to be Australian. I thought he might be a patient who was wandering around. He was there frequently and never spoke, although once or twice he was wearing the white coat (unbuttoned and shirtless underneath) that announced "attending physician" and he was holding my chart so then I figured he was in charge of my care, or looking out for me. The odd thing about him was his vague features- as if they'd been worn away by the wind and sun, like a weathered sandstone statue. Hence the "Sandblasted" monicker. Then there was the woman. She had the same sandblasted appearance as he did and was wearing a night gown and I took her to be his wife. She was always passing through, unlike him. Doctors, nurses, nurse assistants bustled By in the corridors outside my windows. But the SandBlasted Man just stood there watching.
There were also rats in my room scurrying along the wall next to the door. (I thought to meself, “Humph. Some ICU!”) Big fat furry rats that I could only catch, fleetingly, out of my peripheral vision. No matter how quickly I turned to look at it, it was gone. It was probably the shadows of people’s feet under the door? But...
Passing (Pissing) Time
This was a surreal, dreamlike time that lasted for one to two weeks. Time passed with no sense of fast or slow other than I seemed to be “passing water” every 20 minutes. It seemed to me that my family had deserted me because I would watch the clock waiting for someone to come so I would know I was alive. I hold this "memory" even today, though Cindy assures me that she was there every morning and throughout the day. She would come in every morning with her fresh cup of coffee and I would beg for her to bring me some. More crushed dreams here as I was still on swallow caution and nothing but tubes were allowed down my throat.!
"Kicking Ass!"
An amusing moment occured while I was helpless- hardly able to move or talk, tubes coming out of me and tubes going into me at the Stanford ICU. The head of the ICU, a lovely and very bright woman (who had a habit of starting, or ending her sentences with ("...Head of the ICU for twenty years") came to see me and asked me how I was doing. With a keen sense of irony, I met her eyes and managed to croak out "I'm kicking ass!". Apparently, not being used to hearing irony from the half dead, she thought that was the funniest thing she had ever heard. ("As Head of the ICU for twenty years, I have never heard that answer.") She visited a couple of more times, and each time related how she had quoted me other patients or doctors and gotten more laughs.
I can't for the life of me remember her name, but I believe that, as Head of the ICU for twenty years, she will not be hard to track down. And I also wish her another twenty years as the Head of the ICU
Helpless
I was given a call button and admonished to press it if I needed anything at all. Press it I did to no avail- I was too weak activate the button. I would lay there calling for help and finally just soil my pants. All modesty went out the window.
The same with the TV remote. I couldn’t muster the strength to turn it on or change channels.
To solve some of the soiling it was determined that a “condom catheter” was in order. This is just what it sounds like- a condom with a tube coming out of the end and is a task that is left to the nurses. A big tease, I suppose, as not one but two are required for this task which involves considerable close quarter manipulation of one’s Willie-Wonka. A teenage boy’s ultimate fantasy I think. But no titillation value for an emaciated 68 year coming off of death row.
Scratch that off of my bucket list.
Nourishment?
I was discharged to the “Floor” but sent back to ICU after a few days for oxygen saturation issues.
A feeding tube was run down my nose, through the esphagus, the stomach, the pyloric valve and 6 cm into the duodenum. One of the more uncomfortable proceedures I've had. It had a tendency to work it's way out and so every few days they had to put me through the discomfort all over again! The feeding tube was necessary because there was the possibility of aspirating something down into my already weakened lungs and I was having enough trouble breathing even with the supplemental oxygen. The cool doctor term I learned here was "There has been an Insult to your lungs". No more Insults, please. I've had enough for one life.
Eventually, I was allowed apple sauce. A Nurse or swallowologist would feed appropriately sized spoonfuls into my mouth and make sure I didn't choke. As I was starving, I imagine I looked something akin to a baby bird begging for sustenance. When they deemed me capable, a container of applesauce would appear on my tray table without the nurse and I was left to my own devices. Able to eat I was, but I was not strong enough to peel the foil lid off of the container. Not wanting to bother the overworked staff with the call button, I would have to wait until someone came to check on me.
Torture
They kept dreaming up ways to make me suffer all veiled under the guise of "keeping me alive"! In addition to the aforementioned cruelties I wasn't allowed to drink water. I was parched and would beg and plead for a sip of water or some ice to suck on. If I could have managed to get up on my hands and knees I would have unashamedly groveled. Water was taboo for me in my weakened state for the same reason as food. Apparently when you are on a feeding tube your swallower can get weak and then you can't control which pipe the water goes down. More fluid in my lungs was not the way to go so I was made to suffer for days on end. When the dried saliva caked my teeth and gums I was allowed "lollipops". These are red or green sponges on sticks that Cindy or a nurse would moisten and swab around my mouth. They provided temporary relief. This went on for years it seemed.
I acquired a Swallow-therapist. She would wheel me off to a special room and have me drink various consistencies of a tracer compound which would be imaged. The images were studied and an opinion given which, for a damn long time, deemed me a swallow risk. And the dry mouth and the feeding tube remained.
My glucose levels were checked twice a day (finger prick). Blood was drawn, IVs were installed and they tried to put in a PICC line but failed. I think my body said "Enough" with the intrusions. A central line in my neck (that I wasn't even aware of) was removed. One poor nurse removed the arterial line (another "Hey, where'd that come from?") from my wrist. When he pulled it he got sprayed with my blood! So he stood there for 45 minutes putting pressure on it until it calmed down enough to slap a dressing on. It did not beat his all-time record of patiently applying pressure to an unruly artery.
Lydia
But life wasn't all bad. One of the few faces/names I can remember is Lydia. She was a Nursing Assistant who was working on her nursing license. Every couple of days she would bathe me, and wash my hair. She was very kind and gentle and it felt so good to be clean! I really wanted a shower but since I was a fall risk that was not in the cards.
I also had a regular parade of brave souls who would drop by to visit me. Cindy was careful to control the flow as it didn't take much for me to overdo it. I was very grateful for these well wishers and it sustained me and gave me something to look forward to. I suspect that it was hard for them as I was looking pretty frightening at my end.
Adam
Eventually i got a Physical Therapist and an Occupational Therapist. The OT I don't remember, but Adam, the PT stands out. He was a big ol' bear of a guy who pushed me to start moving. He gave me exercises to do in bed. These progressed to sitting up and finally standing up. All with two or three spotters to catch me if I started to fall. I gave Adam s**t, and he responded by giving me more exercises. The dynamic worked, and I got stronger. I got out of bed because of Adam. I stood up because of Adam. I took my first steps because of Adam! He introduced me to the "Golvo 400". This was a lift aparatus. The way it worked was I rolled on one side and this big green sling was shoved halfway under me. Then I would roll to the other side and it was pulled so it was all the way under me. The cables of the lift were hooked to the sling, a button was pressed and "Whee", I was hanging free. And when I say free, I mean FREE! The thing was, I was going commando under my hospital robe, and try as I might to tuck in the robe and remain discreet, once I was in the air I was completely helpless and all of the junk in my trunk was exposed for all the room to see! I swear that Adam let me swing there for a few extra minutes to get even with me for all of guff I had been giving him. I have since speculated that the designers of this UMM (Ultimate Mortification Machine) did it on purpose- "Hey look. If we just trim away this piece of the sling imagine the view you'd get!" The upshot of it was I stopped going commando.
I went through some trying times starting to get up again. I was so out of condition that my blood pressure would would go haywire whenever I came up out of a horizontal position. It would drop drastically and I would feel very insecure. After this happening a few times I began to get anxious whenever PT came to put me through my paces. To the point where I was afraid to try standing up. Adam had an associate with him who would do a guided meditation with me and it actually calmed me down to the point where I could move forward with physical activity. Those Physical Therapy pros are not just One-Trick Ponies and I think that they are worth their weight in gold.
Closer to Home
After 5 weeks in a hospital bed it was determined that I was well enough to be released to a "SNF" (Skilled Nursing Facility). There was talk of going straight to an "ARF" (Acute Rehab Facility) but I was still so weak that we didn't think I would be able to handle 3 hours of physical and occupational therapy every day. So my faithful, patient, hard-working and loving CareGiver, Cindy, set off to visit the Santa Cruz County SNFs to find the best one. She settled on Pacific Coast Manor located on Wharf Road in Capitola. Only two freeway exits from home! I was still on external oxygen so went by medical transport to the facility and Tierney met me there.
The idea of a SNF is that you still get lots of nursing attention and some physical therapy, but you don't tie up a hospital room.
Next Installment: Life Outside of the Hospital
Awakening
I opened my eyes. Cindy was there and told me that I was in the ICU at Stanford Hospital. I was battered and beaten- not the resplendant new plummage of the reborn Phoenix (I wonder what their trick is?) but I was alive so I didn't see any point in quibbling. There was a strange arm in the hospital bed with me. It was horribly discolored and swollen. I thought it might be mine, but it wouldn't move. "What a cruel trick", I thought. "Trying to frighten me by putting an amputated arm in bed with me". But I fooled them. I wasn't frightened. I just felt sad for the poor fellow.
It turned it was my arm after all. And I felt even sorrier.
I was pretty groggy coming off of the sedation and the paralytic so the memory of that day is
spotty. At some point that morning my daughters and Nate showed up and tried to salvage Christmas by opening stockings and presents. I made it through a couple but that was all I could muster. And my plans for their gifts had been cut short. They were very sweet and said that having me wake up on Christmas Day was a hard gift to beat. Andy drove all the way from Santa Cruz to give me a book.
Visions
In the week that followed I was much the same but the grogginess was spiced up with hallucinations. Having done this hallucination thing before (not referring to my hippie days here), during my first transplant, I have learned that these visions are not frightening and while I don't ask for them, I find them to be interesting, and at times informative. The ones six years ago were very dreamlike. I would be sitting in my hospital bed and a part of what was going on, but all I had to do was close my eyes and a curtain would drop and I'd be in another world.
The December 2020 illusions spanned both real and the dream worlds- open-eyed or closed- and colored many of my "memories" from that time.
I dreamed/thought that the ICU facility was in Bridgeport, California of all places (only a five hour drive from Stanford!). In my addled state I believed that my family could take me to the saloon for a pint and some barbequed ribs. I kept myself alive waiting for this blessed event, but for once they let me down. I guess, given what I'd put them through, that makes us even. To be fair, I was starving. I had lost some 25 lbs through this ordeal and it's a testament to my undying optimism that I actually thought I could manage a trip to a saloon. If I couldn't lift my arm, how did I imagine that I could hoist a pint! Hope Springs Eternal!
I imagined drums and dreamed up a Native American Pow Wow going on outside the ICU. I told Tierney to take me to it and she asked what I planned to wear. I told her "My skivvies!".
Then there were "The Sandblasted People". I first noticed the man. He was usually standing off in a corner of the room observing me. He wore shorts and was shirtless and had ruddy sunburnt skin and for that reason I took him to be Australian. I thought he might be a patient who was wandering around. He was there frequently and never spoke, although once or twice he was wearing the white coat (unbuttoned and shirtless underneath) that announced "attending physician" and he was holding my chart so then I figured he was in charge of my care, or looking out for me. The odd thing about him was his vague features- as if they'd been worn away by the wind and sun, like a weathered sandstone statue. Hence the "Sandblasted" monicker. Then there was the woman. She had the same sandblasted appearance as he did and was wearing a night gown and I took her to be his wife. She was always passing through, unlike him. Doctors, nurses, nurse assistants bustled By in the corridors outside my windows. But the SandBlasted Man just stood there watching.
There were also rats in my room scurrying along the wall next to the door. (I thought to meself, “Humph. Some ICU!”) Big fat furry rats that I could only catch, fleetingly, out of my peripheral vision. No matter how quickly I turned to look at it, it was gone. It was probably the shadows of people’s feet under the door? But...
Passing (Pissing) Time
This was a surreal, dreamlike time that lasted for one to two weeks. Time passed with no sense of fast or slow other than I seemed to be “passing water” every 20 minutes. It seemed to me that my family had deserted me because I would watch the clock waiting for someone to come so I would know I was alive. I hold this "memory" even today, though Cindy assures me that she was there every morning and throughout the day. She would come in every morning with her fresh cup of coffee and I would beg for her to bring me some. More crushed dreams here as I was still on swallow caution and nothing but tubes were allowed down my throat.!
"Kicking Ass!"
An amusing moment occured while I was helpless- hardly able to move or talk, tubes coming out of me and tubes going into me at the Stanford ICU. The head of the ICU, a lovely and very bright woman (who had a habit of starting, or ending her sentences with ("...Head of the ICU for twenty years") came to see me and asked me how I was doing. With a keen sense of irony, I met her eyes and managed to croak out "I'm kicking ass!". Apparently, not being used to hearing irony from the half dead, she thought that was the funniest thing she had ever heard. ("As Head of the ICU for twenty years, I have never heard that answer.") She visited a couple of more times, and each time related how she had quoted me other patients or doctors and gotten more laughs.
I can't for the life of me remember her name, but I believe that, as Head of the ICU for twenty years, she will not be hard to track down. And I also wish her another twenty years as the Head of the ICU
Helpless
I was given a call button and admonished to press it if I needed anything at all. Press it I did to no avail- I was too weak activate the button. I would lay there calling for help and finally just soil my pants. All modesty went out the window.
The same with the TV remote. I couldn’t muster the strength to turn it on or change channels.
To solve some of the soiling it was determined that a “condom catheter” was in order. This is just what it sounds like- a condom with a tube coming out of the end and is a task that is left to the nurses. A big tease, I suppose, as not one but two are required for this task which involves considerable close quarter manipulation of one’s Willie-Wonka. A teenage boy’s ultimate fantasy I think. But no titillation value for an emaciated 68 year coming off of death row.
Scratch that off of my bucket list.
Nourishment?
I was discharged to the “Floor” but sent back to ICU after a few days for oxygen saturation issues.
A feeding tube was run down my nose, through the esphagus, the stomach, the pyloric valve and 6 cm into the duodenum. One of the more uncomfortable proceedures I've had. It had a tendency to work it's way out and so every few days they had to put me through the discomfort all over again! The feeding tube was necessary because there was the possibility of aspirating something down into my already weakened lungs and I was having enough trouble breathing even with the supplemental oxygen. The cool doctor term I learned here was "There has been an Insult to your lungs". No more Insults, please. I've had enough for one life.
Eventually, I was allowed apple sauce. A Nurse or swallowologist would feed appropriately sized spoonfuls into my mouth and make sure I didn't choke. As I was starving, I imagine I looked something akin to a baby bird begging for sustenance. When they deemed me capable, a container of applesauce would appear on my tray table without the nurse and I was left to my own devices. Able to eat I was, but I was not strong enough to peel the foil lid off of the container. Not wanting to bother the overworked staff with the call button, I would have to wait until someone came to check on me.
Torture
They kept dreaming up ways to make me suffer all veiled under the guise of "keeping me alive"! In addition to the aforementioned cruelties I wasn't allowed to drink water. I was parched and would beg and plead for a sip of water or some ice to suck on. If I could have managed to get up on my hands and knees I would have unashamedly groveled. Water was taboo for me in my weakened state for the same reason as food. Apparently when you are on a feeding tube your swallower can get weak and then you can't control which pipe the water goes down. More fluid in my lungs was not the way to go so I was made to suffer for days on end. When the dried saliva caked my teeth and gums I was allowed "lollipops". These are red or green sponges on sticks that Cindy or a nurse would moisten and swab around my mouth. They provided temporary relief. This went on for years it seemed.
I acquired a Swallow-therapist. She would wheel me off to a special room and have me drink various consistencies of a tracer compound which would be imaged. The images were studied and an opinion given which, for a damn long time, deemed me a swallow risk. And the dry mouth and the feeding tube remained.
My glucose levels were checked twice a day (finger prick). Blood was drawn, IVs were installed and they tried to put in a PICC line but failed. I think my body said "Enough" with the intrusions. A central line in my neck (that I wasn't even aware of) was removed. One poor nurse removed the arterial line (another "Hey, where'd that come from?") from my wrist. When he pulled it he got sprayed with my blood! So he stood there for 45 minutes putting pressure on it until it calmed down enough to slap a dressing on. It did not beat his all-time record of patiently applying pressure to an unruly artery.
Lydia
But life wasn't all bad. One of the few faces/names I can remember is Lydia. She was a Nursing Assistant who was working on her nursing license. Every couple of days she would bathe me, and wash my hair. She was very kind and gentle and it felt so good to be clean! I really wanted a shower but since I was a fall risk that was not in the cards.
I also had a regular parade of brave souls who would drop by to visit me. Cindy was careful to control the flow as it didn't take much for me to overdo it. I was very grateful for these well wishers and it sustained me and gave me something to look forward to. I suspect that it was hard for them as I was looking pretty frightening at my end.
Adam
Eventually i got a Physical Therapist and an Occupational Therapist. The OT I don't remember, but Adam, the PT stands out. He was a big ol' bear of a guy who pushed me to start moving. He gave me exercises to do in bed. These progressed to sitting up and finally standing up. All with two or three spotters to catch me if I started to fall. I gave Adam s**t, and he responded by giving me more exercises. The dynamic worked, and I got stronger. I got out of bed because of Adam. I stood up because of Adam. I took my first steps because of Adam! He introduced me to the "Golvo 400". This was a lift aparatus. The way it worked was I rolled on one side and this big green sling was shoved halfway under me. Then I would roll to the other side and it was pulled so it was all the way under me. The cables of the lift were hooked to the sling, a button was pressed and "Whee", I was hanging free. And when I say free, I mean FREE! The thing was, I was going commando under my hospital robe, and try as I might to tuck in the robe and remain discreet, once I was in the air I was completely helpless and all of the junk in my trunk was exposed for all the room to see! I swear that Adam let me swing there for a few extra minutes to get even with me for all of guff I had been giving him. I have since speculated that the designers of this UMM (Ultimate Mortification Machine) did it on purpose- "Hey look. If we just trim away this piece of the sling imagine the view you'd get!" The upshot of it was I stopped going commando.
I went through some trying times starting to get up again. I was so out of condition that my blood pressure would would go haywire whenever I came up out of a horizontal position. It would drop drastically and I would feel very insecure. After this happening a few times I began to get anxious whenever PT came to put me through my paces. To the point where I was afraid to try standing up. Adam had an associate with him who would do a guided meditation with me and it actually calmed me down to the point where I could move forward with physical activity. Those Physical Therapy pros are not just One-Trick Ponies and I think that they are worth their weight in gold.
Closer to Home
After 5 weeks in a hospital bed it was determined that I was well enough to be released to a "SNF" (Skilled Nursing Facility). There was talk of going straight to an "ARF" (Acute Rehab Facility) but I was still so weak that we didn't think I would be able to handle 3 hours of physical and occupational therapy every day. So my faithful, patient, hard-working and loving CareGiver, Cindy, set off to visit the Santa Cruz County SNFs to find the best one. She settled on Pacific Coast Manor located on Wharf Road in Capitola. Only two freeway exits from home! I was still on external oxygen so went by medical transport to the facility and Tierney met me there.
The idea of a SNF is that you still get lots of nursing attention and some physical therapy, but you don't tie up a hospital room.
Next Installment: Life Outside of the Hospital
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