Post-tx day #375. A short Odyssey.
I had planned a 2 week trip.
It all started right, driving down to Raleigh overnight after seeing Sideshow on Broadway, arriving on the 26th at April's, where I caught a few hours sleep, and then together we traveled on to my brother Marc's place for Thanksgiving, which was quite nice. (Marc and Sophia cook up the best turkey I've ever had.) It was a nice couple of nights there, then back to Raleigh. There I took a hard-earned vacation, playing the role of house-husband to April as she finished classes and started finals. I also visited Heather James regularly, as she is still in ICU following her transplant in early November.
But trouble was in the waters. I'd been coughing a lot lately, feeling junky, bringing up the green stuff we CFers know all too well. I was ordered to get labs drawn early, on December 5th. Many values were out of range; some newly so. Also, the people who love me had been gathering their arguments to help me insist to my doctor that I get the P.A. knocked back with orals or IVs...*something*! My cough did NOT sound like what a transplanted person should sound like.
And so, with the help of Calypso -- uh, I mean April, I was deposited at Duke early on the morning of the 10th for my one-year checkup. Labs, PFTs, chest Xray, then consults with Dr Reynolds and Dr Wolfe. A sharp turn of treatments was discussed and scripts sent out, among them a change from tacrolimus to cyclosporin, in an attempt to control my tremors. Of course, neither doctor had yet the benefit of having results from my bronch, which was scheduled later. So some things were guesswork, such as assuming I'm not in rejection (and it turns I'm not anyway). We talked to both doctors about a plan for going on IVs. Reynolds didn't see the need, mostly because he couldn't see my lung infection on xrays nor hear it. Wolfe was more direct and weighed the benefits and risks of more hickmans vs a port at about 50/50. Take note of that. It is about to become very important in this story.
That evening, April's family, Mom and I, my good friends Greg Williams and Alice Neff, Jim Keefer, and Lauren and Mark James came to a celebration dinner for April and myself, it being a year for both of us. Along about desert time, another guest arrived for a moment: Brian Levy, master of the winds.
Earlier, I had heard that he was in town, packing up the last of Ellie's belongings. As that must be a miserable task, I thought maybe he'd like a nice dinner and invited him to join us that night. He said he could drop by only briefly. And so he did. Introductions were made, etc. Before he left, he hugged me and I him...and then we hugged each other a bit tighter.
For me, everything stopped. I don't know how Brian feels about it, but for a moment I wasn't just hugging the grieving father of one of the best transplant friends I'll ever have, but I was hugging Stacey too. And hugging Ellie herself. And hugging Manda Thom and Kenna Taylor and hugging Jenna Rose and Brian K. Johnson and all the other CF friends I've lost all the way back to the first one whose funeral I attended, Richard Shannon. I was hugging their grieving spouses, their children, their parents. I was hugging all those people who mean so much to me, but am otherwise so powerless to comfort. Brian was the outer shell of a matrushka doll of memories and patients and caregivers, containing all within.
Shortly after that, the evening turned on a dime. I began to get sick. And by the time April and I were leaving, I just turned to her and asked "Do we get Anticlea to vote on this, or do we just go directly to the ER?"
I had been explicitly told by Dr Todd, who did my bronch, that if the symptoms of my previous post-bronch illnesses showed up, especially the shaking and chills, I was to go the ER without question. And that began a not-wholly-unexpected hospital admission. At least I didn't have to go to ICU this time. Before I left the ER, my temperature had begun to climb even as I still shook with chills. I'd also lost my ability to void. My blood pressure started to rise and fall unpredictably. All part of the pattern. It's a form of minor sepsis from the biopsies combined with lethargic recovery from anaesthesia.
My first night, on 9300, was miserable. I was introduced to two types of urinary catheters I hadn't seen/felt before. Sleep was almost non-existent. This is how a hospital works. By the time I was moved to 7800 after less than 36 hours on 9300, I'd enjoyed four blown peripherals and the musical stylings of a guitarist named Steve. He actually was quite good and the music was relaxing. All part of the Arts In Health program at Duke.
7800 was better. I spent six days there walking laps, looking at walls, listening to the charming music from the hammer dulcimer player who came to visit, putting me under her spell. Lots of tests, Xrays, and meds. A few visits from endocrinology. But, mostly, thinking about Ellie. Replaying memories so they won't fade. Taking a peek at her memorial picture, which will soon hang on the walls, and starting to come to some peace with her death.
Dr Snyder, whom I like very much, was attending for the weekend and she takes the "what is making my patient sick" mystery very seriously. SHE heard my cough! Plus, a nasal swab turned up MRSA in my sinuses. My IVs were changed to sterner stuff and time in IR was requested. Dr Todd was my attending the rest of the week. Under her watch, I got a port placed on Monday, which was a TRIP. A whole story in itself. She didn't let me go the next day because I was running a mild fever and she was taking no chances, given my previous history. I finally got out Wednesday evening. Thankfully, Mark James, Heather James' father, was able to pick me up and take me back to Raleigh. He was patient and helpful as we had to pick up meds at the specialty pharmacy, and then went on the hunt for a nebulizer. Mark is another one of those people in the CF world whom I think I'll forever be friends with. The whole James family has become next-to-kin.
There is more to the story, details and sub-plots, you know, but I won't dwell on them now. I spent a whole day resting at April's. I was exhausted. Yesterday I packed up, wondering where all this STUFF came from and headed north, where I overnighted -- at April's! This time outside Philadelphia. First time visiting the fam on home ground.
It was an unexpectedly long journey, with the Fates perniciously plucking at the tangled skein of my life... but here are my cats and my awesome tenant, and so many friends...
Tonight I am reminded that home is where the heart is; as long as your heart is not lost in the whirlpool of memory or eaten up by grief. Crawl up the slope of the shore, slay your enemies, claim what's yours, live your dream. Peace.
I had planned a 2 week trip.
It all started right, driving down to Raleigh overnight after seeing Sideshow on Broadway, arriving on the 26th at April's, where I caught a few hours sleep, and then together we traveled on to my brother Marc's place for Thanksgiving, which was quite nice. (Marc and Sophia cook up the best turkey I've ever had.) It was a nice couple of nights there, then back to Raleigh. There I took a hard-earned vacation, playing the role of house-husband to April as she finished classes and started finals. I also visited Heather James regularly, as she is still in ICU following her transplant in early November.
But trouble was in the waters. I'd been coughing a lot lately, feeling junky, bringing up the green stuff we CFers know all too well. I was ordered to get labs drawn early, on December 5th. Many values were out of range; some newly so. Also, the people who love me had been gathering their arguments to help me insist to my doctor that I get the P.A. knocked back with orals or IVs...*something*! My cough did NOT sound like what a transplanted person should sound like.
And so, with the help of Calypso -- uh, I mean April, I was deposited at Duke early on the morning of the 10th for my one-year checkup. Labs, PFTs, chest Xray, then consults with Dr Reynolds and Dr Wolfe. A sharp turn of treatments was discussed and scripts sent out, among them a change from tacrolimus to cyclosporin, in an attempt to control my tremors. Of course, neither doctor had yet the benefit of having results from my bronch, which was scheduled later. So some things were guesswork, such as assuming I'm not in rejection (and it turns I'm not anyway). We talked to both doctors about a plan for going on IVs. Reynolds didn't see the need, mostly because he couldn't see my lung infection on xrays nor hear it. Wolfe was more direct and weighed the benefits and risks of more hickmans vs a port at about 50/50. Take note of that. It is about to become very important in this story.
That evening, April's family, Mom and I, my good friends Greg Williams and Alice Neff, Jim Keefer, and Lauren and Mark James came to a celebration dinner for April and myself, it being a year for both of us. Along about desert time, another guest arrived for a moment: Brian Levy, master of the winds.
Earlier, I had heard that he was in town, packing up the last of Ellie's belongings. As that must be a miserable task, I thought maybe he'd like a nice dinner and invited him to join us that night. He said he could drop by only briefly. And so he did. Introductions were made, etc. Before he left, he hugged me and I him...and then we hugged each other a bit tighter.
For me, everything stopped. I don't know how Brian feels about it, but for a moment I wasn't just hugging the grieving father of one of the best transplant friends I'll ever have, but I was hugging Stacey too. And hugging Ellie herself. And hugging Manda Thom and Kenna Taylor and hugging Jenna Rose and Brian K. Johnson and all the other CF friends I've lost all the way back to the first one whose funeral I attended, Richard Shannon. I was hugging their grieving spouses, their children, their parents. I was hugging all those people who mean so much to me, but am otherwise so powerless to comfort. Brian was the outer shell of a matrushka doll of memories and patients and caregivers, containing all within.
Shortly after that, the evening turned on a dime. I began to get sick. And by the time April and I were leaving, I just turned to her and asked "Do we get Anticlea to vote on this, or do we just go directly to the ER?"
I had been explicitly told by Dr Todd, who did my bronch, that if the symptoms of my previous post-bronch illnesses showed up, especially the shaking and chills, I was to go the ER without question. And that began a not-wholly-unexpected hospital admission. At least I didn't have to go to ICU this time. Before I left the ER, my temperature had begun to climb even as I still shook with chills. I'd also lost my ability to void. My blood pressure started to rise and fall unpredictably. All part of the pattern. It's a form of minor sepsis from the biopsies combined with lethargic recovery from anaesthesia.
My first night, on 9300, was miserable. I was introduced to two types of urinary catheters I hadn't seen/felt before. Sleep was almost non-existent. This is how a hospital works. By the time I was moved to 7800 after less than 36 hours on 9300, I'd enjoyed four blown peripherals and the musical stylings of a guitarist named Steve. He actually was quite good and the music was relaxing. All part of the Arts In Health program at Duke.
7800 was better. I spent six days there walking laps, looking at walls, listening to the charming music from the hammer dulcimer player who came to visit, putting me under her spell. Lots of tests, Xrays, and meds. A few visits from endocrinology. But, mostly, thinking about Ellie. Replaying memories so they won't fade. Taking a peek at her memorial picture, which will soon hang on the walls, and starting to come to some peace with her death.
Dr Snyder, whom I like very much, was attending for the weekend and she takes the "what is making my patient sick" mystery very seriously. SHE heard my cough! Plus, a nasal swab turned up MRSA in my sinuses. My IVs were changed to sterner stuff and time in IR was requested. Dr Todd was my attending the rest of the week. Under her watch, I got a port placed on Monday, which was a TRIP. A whole story in itself. She didn't let me go the next day because I was running a mild fever and she was taking no chances, given my previous history. I finally got out Wednesday evening. Thankfully, Mark James, Heather James' father, was able to pick me up and take me back to Raleigh. He was patient and helpful as we had to pick up meds at the specialty pharmacy, and then went on the hunt for a nebulizer. Mark is another one of those people in the CF world whom I think I'll forever be friends with. The whole James family has become next-to-kin.
There is more to the story, details and sub-plots, you know, but I won't dwell on them now. I spent a whole day resting at April's. I was exhausted. Yesterday I packed up, wondering where all this STUFF came from and headed north, where I overnighted -- at April's! This time outside Philadelphia. First time visiting the fam on home ground.
It was an unexpectedly long journey, with the Fates perniciously plucking at the tangled skein of my life... but here are my cats and my awesome tenant, and so many friends...
Tonight I am reminded that home is where the heart is; as long as your heart is not lost in the whirlpool of memory or eaten up by grief. Crawl up the slope of the shore, slay your enemies, claim what's yours, live your dream. Peace.
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