Jim's Medical Journal

Category: Medical Journal

  • No, I’m Not in the Hospital – But Enjoy This Image

    No, I’m Not in the Hospital – But Enjoy This Image

    Well it’s September. It was not the best of times; it was certainly not the worst of times.

    This photo was taken just before Christmas. It’s a selfie. This is as I was waiting for them to transfer me into the ICU. As I recollect I woke up this way. Couldn’t figure out why my right eye was so dry. The combination of medication, low blood oxygen, sleep deprivation, pneumonia, etc. was really slowing me down. It took me a few moments to figure out that I had cold oxygen blowing on the right side of my face. On one hand, you’re not too concerned how you look when you are wheeled into the ICU. On the other hand, you don’t need half your face frozen so the staff up there thinks you had a stroke.

    I’ve completed moving all of the posts over from CaringBridge. I like this better (hope you do to.) Project took much longer than I ever expected. The photos of Chicago are all (blatantly) stolen from someone I discovered using Mastodon. The pictures are ordered in a random or haphazard fashion. Any apparent nexus between the photo and the post is purely coincidental. It was a lot of fun to go read the posts and comments from the early days. Many thanks for all the love and support.

    So what’s been going on over the last six weeks? As always, it’s been interesting.

    We didn’t know it at the time, but when I was writing the last post I had a urinary tract infection. This was causing grit – like fine sand particles – in the urine. They would build up and clog the catheter. Then we would have either (a) leakage, which meant that everything got wet which caused a huge problem for everybody, or (b) there would be no leakage, the bladder would get overfilled so I would end up sweating with a fever, high blood pressure, and a pounding headache. I’m not sure which was worse, but Suzie would say the former. Seriously though, I was pretty sick, couldn’t do much, and it went undiagnosed for far too long.

    One of the more serious challenges of people in my condition is that we don’t feel much pain in the paralyzed area. A friend recently told me his “tale of woe” of when he had a kidney stone. Big baby said it hurt like hell. Well for me, I could have titanium golf ball lodged in a kidney and never know it. Here’s a for instance (and my apologies if this is TMI:) over the last few days there’s been a little blood in the urine. We have no idea where it’s coming from. Maybe there is a honey badger crawling around in there. But I don’t have any abdominal pain. Thankfully, I already have a CT scan scheduled for this Saturday. Hopefully it’s nothing. But if there is a golf ball inside one of the kidneys we’ll find out.

    While I had the UTI, a couple other conditions came passing through (pun intended.) At one point we’re pretty sure I had the flu. Took a Covid test; it was negative. Then it seems I had a cold or something. Don’t know. Just know there was a lot of coughing. And bizarrely, I experienced a bit of day-night confusion. While not feeling well, I’d take a nap in the afternoon and then not be able to fall asleep at night. Then I would be tired, so I want to sleep a good part of the day. When this gets going, medications don’t really help. I’d down 10 mg of melatonin and 12 mg of Ambien and nothing. Awake and wired for hours.

    Here is another “fun fact” about spinal cord injuries: it can be really challenging for the body to monitor, and thus control, body temperature. Maybe I have a little bit of a chill so we grab a blanket. But the chill won’t go away so we grab another. An hour later I’m sweating, but actually still feel cold. When I’m healthy we pretty much have this under control. When I’m under the weather this can be extremely challenging.

    Hopefully we have all that behind us now. My life is like an episode of House (a medical drama that ran on Fox in the 90s. Which I highly recommend BTW.) If only we could solve all of my medical riddles in 44 minutes.

    So you got an email? I hope you don’t mind but I (also blatantly) stole all of the emails from CaringBridge. It should be one-click to unsubscribe. My plan is to try and write one of these posts every 6-8 weeks. I’ll send an email out letting folks know there is a new post. That’s it. I’m not going to try to sell you car insurance… but if you’re in the market, I gotta guy.

    If anybody wants to subscribe to the email list, use this link: https://jb03.com/medmail/?p=subscribe&id=1

    Please feel free to share the website. I’m not going to post this on Facebook or Twitter. If you wish to, please go ahead.

    We’ve been running an experiment on the Sunday calls. Recently Zoom had a little snafu with their terms and conditions. It seems that they want to save the video calls people make and use the data to train AI. Not saying that’s the truth; saying that there is some confusion on the matter. Nevertheless, I find the whole “big data” thing a little creepy. So I’m testing out a self hosted solution where the calls will not be recorded or even intercepted by big data. There is a learning curve; but I think we got it covered.

    Standing chitchat, Sundays at 3:30 Central. Here’s the link: https://law03.com/call/k3coyx4k
    Update 10/18/23: The time remains the same however using a new link for the chitchat: https://jb.jb03.com/call/e35vvpp9

    I think that’s it for now. The wounds are healing, very slowly. I try to do my shoulder exercises several times every day. It won’t be long and I’ll be able to do the chicken dance.

    Thanks again for all the support.

    Be kind and be well.

  • Coughed Up a Lung (Not Really)

    Coughed Up a Lung (Not Really)

    A couple posts ago I mentioned how the trach was falling out, went to the ENT, was supposed to have surgery, yada yada yada. In the process of copying all of the posts from the Caring Bridge site I realized that I had forgotten to tell an epilogue to that story.

    Now I say “an” epilogue because “the” epilogue is still being written. But see, I’ve already gotten ahead of myself.

    Exactly when Suzie and I first noticed the trach was not sitting correctly is lost forever in the annals of history. Returning home in December from eight days in the hospital was challenging. We were dealing with my pneumonia, the holidays, wound care, her and Clara traveling, my family in town, another hospital visit in January… We had a few things going on. The truth of it is that I was in pretty bad shape; spent a lot of time struggling to breathe. O2 stats were terrible. We were focused on just trying to keep the lungs clear by sucking out mucus.

    Sometime in early February we started having trouble getting the suction tube through the hole in the trach. Not every time, just some of the time. One thing led to another, which led to another, which forced an appointment with the ENT. For reasons that are not exactly clear, it always takes a couple weeks to get in with that guy. We saw him on February 23 and things quickly started to get better. This was covered in the March post. If you missed it, it can be found here.

    Things generally improved throughout March. Coughed less. Used the nebulizer less frequently. And generally felt better as the month progressed. Not 100% mind you, but certainly better.

    April 4 was a Tuesday morning. Clara went off to school. Suzie walked the dog. When she got back we set up a nebulizer treatment and she went off to make herself a coffee. While she’s gone, during the treatment, I cough up what I think is a glob of phlegm which flies clear through my mouth and hits the nebulizer’s mask. (My coughing is much improved.) When Suzie comes back in I say, “Hey, I coughed something up into the mask that we should probably clean out.” She asks me, “Where?” Slightly flummoxed I’m like, “I know I coughed up something and it should be in the mask.” “Dude, there’s nothing in the mask…. Oh, wait.”

    “What the hell?”

    There was nothing in the mask. It was on my shirt. Suzie started reaching for a pair of gloves. Putting them on she decided they weren’t enough. She thought it best to pick up whatever it was, using a piece of gauze in her already gloved hand. When I saw it, I didn’t blame her.

    It was about the size of a peanut. Kinda shaped like a kidney bean. It was covered in blood. And I had just coughed it up.

    What does one do in a situation like this? There was a lot of ‘thinking aloud’. Should we go to the ER? Maybe skip the ER and go straight to church. Call 911? What on earth would you tell them? “911 what’s your emergency?” “Hi. Yes, um, I’m a 52-year-old male, quadriplegic, and I just coughed up a baby alien.”

    In the end cooler heads prevailed. It was decided that we would simply do nothing for a few minutes. Suzie kept asking me if I felt okay; I felt pretty good actually. The object was secured in a Ziploc bag. At that moment the situation was under control. We had a lot of questions, but there didn’t appear to be a medical emergency.

    I called my primary care physician’s office, explained that I just coughed something up, and wanted to see somebody that day. They had an opening that afternoon, so Suzie and I started making preparations to go see the doctor.

    Because I’m something of a frequent flyer over at the medical office, I know my primary care physician pretty well. I also know his partner who is the hospitalist and would see me every day whenever I was admitted. While Suzie and I are sitting in the waiting room, in walks the partner. After the perfunctory “heys” and “how you doing” he looks at me sternly and asks, “What happened to your trach?” So I relay the story about the trach falling out, going to the ENT, and not wanting to have surgery. He says, “I agree with the ENT.” We chat about a few movies, tell him that we are there to see my primary care physician, say our farewells, and he disappears into the office.

    Not two minutes later the partner reappears, says the PCP is busy with something else so we get the deal with the partner today. Once settled in the exam room we get through the coughing up a bloodied peanut story and show the doctor whatever it was in the Ziploc bag. He considered reaching into the bag with his bare hand but corrected himself. Once gloved up, he looked at it. He poked it. He squished it between his fingers; it had the consistency of squeezing two gummy bears together. He had no idea what it was, but we were all thinking the same thing so he just went ahead and said it. “I think this is a piece of lung. You need to go have a bronchoscopy today. Like right now.”

    Somehow I was already prepared for that answer, Suzie however was not. I think it was the look on her face that made the good doctor quickly reconsider and start back–peddling. “Wait. Hold on. Forget I said that. Let me go get [my PCP] and let’s see what he says.”

    It doesn’t take long and in walk both doctors. We get past the hellos and my primary doctor asks, “What happened to your trach?” So, again, I go through the story about the trach falling out, the ENT visit, and not wanting surgery. And he says, “I agree with the ENT,” then he turns his attention to the baby alien. He looked at it. He decided he better put gloves on. Then he poked it. He squished it between his fingers. After a moment or two he’s decided what it isn’t, “It’s not a piece of lung tissue.” But no opinion on what it IS.

    While my primary doctor starts looking for something in one of the cabinets, the conversation returns to the subject of my trach. We talk about the potential need for suctioning, oxygen levels, CO2 levels, risk of infection, and whether it would be difficult to schedule the surgery in the future. But one point I asked, “Am I supposed to go the rest of my life with the trach?” Both doctors simultaneously replied, “Yes.”

    With that, my doctor – who had been poking at the glob with the wooden end of a Q-tip – stops what he’s doing and says, “Maybe you don’t need the trach. And maybe this is the best way to actually find out if you need it or not. You have been without it now for what, six weeks? If you make it three months you might be okay. If you make it six months, you will probably be okay. If you make it two years, I’d say you’re out of the woods.”

    Taking a look at the progress of the Q-tip peanut surgery, everyone could see that it was starting to come apart. Not in chunks, like meatloaf. It was not disintegrating, it was unraveling. It was like a long worm that had been bunched–up and folded over. It was a giant jellybean shaped gummy bear of a blood clot. The trach had already been out for six weeks. How long the clot had been there no one knows.

  • Bosco’s “You Absolutely Should Not Read This” Update

    Bosco’s “You Absolutely Should Not Read This” Update

    Greetings Happy Campers,

    Here we are on the precipice of summer! The other day Suzie, Clara and I sat in the backyard for a few hours and got some sun. The Mrs. kept telling me my skin was too soft and delicate so I spent most of the time in the shade. It was nice to sit outside and not need a blanket.

    On the medical front things are going pretty well. I hate to jinx it but we have had slow, yet consistent, improvement since we removed the trach at the end of February. My lungs have been pretty clear for the last two or three weeks. We have a nebulizer and have gone from doing breathing treatments twice a day to only once or twice a week. If the weather stays warm (if we don’t need to run the heat) and the humidity stays up, I’ll probably just stop them altogether.

    It’s a funny thing being able to breathe without worry. I started coughing in November; didn’t really stop until early May. When you’ve spent six months doing something it’s really weird to not do it anymore. Whenever I used to move (or be moved) stuff would always be shifting in my lungs. We would play the game of sit up, lay flat, cough, sit up, breathing treatment, lay flat, cough, sit up, lay flat, repeat. I still have the anticipation of having to go through the routine. Waking up and being able to breathe is actually kind of stressful.

    Sometimes you don’t realize how crappy you were feeling until you feel better. Hindsight being 20/20, I can now tell you that I was really sick – like really really sick – in December, January and into February. So the good news is I feel much better. The bad news is I have so much energy I’m not quite sure what to do with myself. I do have a list of things, little projects I have been meaning to get started on, that I hope will keep me busy. Feeling better going into summer is a good problem to have.

    On the physical therapy front, I have been doing occupational therapy at Advocate (Lutheran General) for the last several weeks. It’s going pretty well… if I would do my homework. I got a whole bunch of exercises that I’m supposed to do a couple of times each day. Some days we reach that goal; some days we don’t. But I do think some progress is being made. We’ve also come up with a lot of ideas for making things a little easier, like eating and maybe using the computer. I can’t use a mouse, but we’re getting to the point where I can almost use a trackball. That would be much better. So there is improvement albeit very slowly.

    I would be remiss if I didn’t include a few words about wounds. Now let me give you a Pro Tip: do NOT, under any circumstances, perform a Google search for “wounds bedsores” and then click on Images. DO NOT DO THAT! Should you perform those steps, the consequences are severe. You’ll have to smash your computer monitor or your phone until it is in tiny pieces. The pieces will have to be put in a blender so that they can be turned into dust. That dust and the blender will have to be burned and the ashes will have to be buried someplace that you will never visit again. Once buried, the earth will have to be salted to be sure that nothing ever grows there. As I say, consequences.

    As for my wounds, they are healing. Back in December I must’ve been sleeping funny one night in the hospital. Ended–up with bedsores on both legs where your leg meets your butt. Now I’m no doctor, but from what I can tell there are three stages to the wound healing process. The first stage is known as “the profanity stage”. At this point the wound is fairly new and no one really knows what to do. It appears to me, the medically approved treatment method at this stage is a combination of repeated swearing coupled with copious navel gazing, and the use of a scalpel. At this point the wounds actually have to be made bigger to remove any dead skin and expose fresh skin underneath. A doctor does this manually with a scalpel trying to avoid anything important like tendons or ligaments.

    Next comes what I call “the maggot stage”. At this point you are waging a war against dead tissue. I guess new stuff will not grow with dead stuff on top of it. And I guess some tissue is always dying and so it’s kind of like trying to fill a bucket with a hole. I should mention that I have been going to the same wound care clinic for over a year. So we kinda know everybody there; and the staff there has gotten pretty comfortable with us. A few weeks ago we were talking with the nurses there about how disgusting these wounds can be and one volunteers, “Oh we’ve seen people come in with maggots.”

    For the record, modern medicine has its own solution to the dead skin problem that does not involve fly larva. There is some special sauce that costs $1000 per tube that you put inside the wound and will dissolve the dead tissue. But if you want to do it the old-fashioned way I’m told it works and that nature does a pretty good job of cleaning–up. So there are options.

    Once you win the war against the dead tissue, the wounds enter the third and final phase (which is not yet cleverly named.) Now the wounds should expose healthy tissue and we really only need to help it along and keep it clean. Because we, as Americans, generally have a crappy diet and don’t eat enough muscle and connective tissue (a topic for a different post) modern medicine has created a collagen wafer which can be broken up and put in the wound. The wafer dissolves over two or three days and helps new fat and skin grow. Keep everything clean, change the dressing as needed, and you have accelerated wound healing.

    Thankfully both of my wounds are now in the final stage. If everything goes well they should be healed in a matter of weeks. A person in my condition will always have to be vigilant, but getting these wounds healed would be a major milestone. I have been contending with a wound in some form or another since the accident.

    Friendly reminder that if anyone ever wants to chat I do have a standing zoom call every Sunday at 3:30 Chicago time.

    Here’s the link: https://us02web.zoom.us/j/86244670091?pwd=YTQvYytVd2k0czJRTVdpd0l2UjJrZz09

    As always, thank you for all the kind thoughts and prayers.

    Jim

  • Jim’s February Update

    Jim’s February Update

    Happy March Everybody!

    Hard to believe it is March already. I guess it’s a lot like the country song goes, “days go slow and years go fast.” A person in my condition appreciates the mild winter and looks forward to spring (as long as it’s not too rainy.)

    At the time of the last update, we were waiting for the results of sputum culture test. That turned out positive for pasteurella, again. Was given a 10 day cycle of antibiotics and expected things to get better. They didn’t. So I called my primary care physician, said that the antibiotics really didn’t clear things up, and maybe I needed other 10 day cycle. He thought that was a stupid idea and if I was still having large amounts of thick mucus that I should take it up with my pulmonologist. I don’t know why but getting an appointment with that guy is a pain. He’s always booked a month out. Needless to say, some frustration there.

    Sometime in January we noticed that the trach was not sitting properly. We didn’t think too much of it –– I had just been in the hospital and if was a problem someone should have noticed it –– and so we just kind of let it go for a few weeks. But it started to hurt a little and we had some other issues so we went to the ENT. He removed the trach, did a little cleaning, poked around with his scope, and proclaimed that it was not going back in. He said that I needed surgery. No big deal right? He would get me admitted that day and put me on the schedule for the next day. I just needed to go to the ER to get admitted.

    There were a whole bunch of little reasons why that plan did not sit well with me. One was the way he tapped his nonexistent watch when he said, “I wish I had more time to spend with you.” We left his office telling him that we were not going to the ER, we were going home, and we would go to the ER later in the day if necessary. As the Mrs. and I talked about it during the day I settled against having surgery. I just figured I could always change my mind. The first few days were kind of harrowing. Everyone was nervous and felt that we were always 15 minutes away from calling 911. But things have definitely improved. It appears that the ill fitting trach was the source of my respiratory problems. I am still coughing some stuff up, but nothing like it was. And lung function – as measured by pulse ox – is much improved. Today we hit 98.

    On the rehabilitation front, it has been an adventure over at the Shirley Ryan. The story is long and complicated (and I will spare you the details) but this is my last week there. I am looking at some other places to do rehab. Will make a decision this week. I mean, rehab will continue, just not at Shirley Ryan.

    As always, many thanks to all of you who have expressed your support. Know that it is appreciated.

    If anyone ever wants to chat I do have a standing zoom meeting every Sunday at 3:30. That’s Chicago time. There is a usual cast of characters but all are welcome. You can think of it like a “Jim Open House”. Yes, I generally give a quick medical update. But after 3:45–50 it’s pretty much general chitchat. We usually go until 4:15 or 4:30. Be forewarned that if I’m not feeling well I may skip it. But either Bob or someone in my family should be there to let you know.

    Here is the link: https://us02web.zoom.us/j/86244670091?pwd=YTQvYytVd2k0czJRTVdpd0l2UjJrZz09

    Until the next update my friends Be Kind & Be Well.

    Jim

  • An Update from Jim Bosco

    An Update from Jim Bosco

    Happy New Year!

    Well, what I say? Many thanks to all of you. Special shout out to Bob who has been there and done more than anyone could ever have expected. Should probably also point out that I have the greatest father on the planet. His unlimited patience, kindness, and generosity has made the impossible possible. But to all of you who have visited, washed a window, wrote a card, said a prayer, sent the text or even positive vibes my way, know that it is greatly appreciated.

    So what’s new with me? Well, I just got out of the hospital, again. But let’s back up a bit. So last December, 2021, I spent the month doing some rehab at Shirley Ryan downtown. Then in January of last year I moved home to focus on healing some open wounds. It has been a heck of a year. A few rides in an ambulance and hospital stays later, together with some excellent wound care from my wife, and the wounds are nearly healed.

    Here is a quick list of last year’s excitement: Got a UTI in February. We let it get a little out of hand, it turned into sepsis. I was talking gibberish so we had to go to the ER. From there we had a good run. In August, a simple outpatient surgery turned into a three day extravaganza. September, got the Covid. October was great! Sometime in November I started coughing; it didn’t go away or get better. In December had to go to the ER for something that turned out to be rather trivial but nevertheless ended up getting admitted. Turns out that stuff I was coughing up in November was pasteurella. Three days in the ICU. Almost had to be put back on a ventilator, but the IV antibiotics did their thing and after nine days I was sent home.

    Recovery from the lung infection has been slow. The coughing and wheezing continued. Last week we noticed a little bit of blood in the thick white balls of pus. My doctor would not have it; back to the ER. So a few days later and I am back home while we wait for test results to find out what now may be growing in the lungs. I should’ve paid more attention in sophomore biology. Mad respect to those geeks with their Gram stain’s and slide cover slips. Those kids grew up and literally saved my life.

    So what now? I have been admitted into the “day rehab” program at Shirley Ryan in Glenview. Starting tomorrow I will be going there for two hours of rehab twice a week. If I make any progress –– show promise? –– I will go three days a week. It’s impossible to know what to expect. Every spinal cord injury is different. I ask if muscle twitches are a sign of progress. “Could be; could be nothing” they say. There is an old joke about a guy who asks his physical therapist, “You think I might be able to play the violin after all this therapy?” “Sure, maybe.” replies the therapist. Excitedly the guy says, “Boy that would really be something!” “Why?” asks the therapist. To which the guy replies, “I couldn’t play the violin before.”

    So there you have it.

    A most gracious THANK YOU to all of you. I look forward to catching up with everyone more personally. Please reach out anytime via call or text. Don’t worry if you miss me or I don’t respond immediately. It may take a couple of days but I will call or text you back. Emails also work, but I’m only on my laptop couple days a week.

    Be well my friends.

  • Bob Took This Photo

    Bob Took This Photo

    Bob was running for Minnesota State House.

    When he needed someone good-looking to model his campaign apparel, Bob knew where to look.

  • Inaugural Van Ride

    Inaugural Van Ride

    Today was a landmark day for Jim.

    He took a ride in his brand new van to a doctor at the local medical complex. Less than one mile away. It will always be remembered because it was raining to the hospital and on the return trip. Several routine tests and the results are expected in a few days.

    The first-time getting Jim in the van proved to be a little challenging. Seems the dealer provided a new set of safety straps to secure the wheelchair to the floor. It took several minutes to install them. The hospital has a curb cut at the front door to allow the chair to roll down the ramp and into the building. In addition, it has a large overhang, so the patient is not in the rain for the approximately 12 feet to the door.

    Jim commented the van has real shocks, seems the medical transport hired prior was a rough ride. The van weighs 4500 pounds and does ride smooth. The extra weight is for the all the special hydraulic equipment to run the doors and ramp. When the doors open the van kneels several inches, so the access ramp is not to steep. Also makes it easier to push the patient up the ramp and into the van.

  • January 19, 2022

    January 19, 2022

    Today was Jim’s first day out of the house. He rode in the Elite Company van down to Shirley Ryan’s rehab center where he had a meeting with his doctor. As luck would have it, while in the doctor’s office he had an Oxygen level drop and had to be suctioned.

    Thus, the doctor prescribed some additional things to do with respect to suctioning and his care. He will be getting regular treatments during the day for his respiratory condition.

    In addition, it was the first time that he used the new lifting platform that lowered him from the front porch down to ground level. A distance of about 42 inches. This means it is now possible for him to have a van equipped with a ramp and a device that will hold the wheelchair in place during the ride, and be driven to doctor appointments. For that matter, the van could take him to Walmart or Trader Joe’s, or any other place he chooses to shop.

    Jim’s old Ford F150 was cleaned and pressed and is now ready for the used F150 market.

  • January 17, 2022

    January 17, 2022

    Today was a little cold at 26 degrees.

    The workers installed the Lift at the front of Jim’s house. He is now able to be wheeled out the front door to the Lift. The Lift will take him gently down to the ground level. From there someone can wheel him into a waiting transport taxi equipped for persons in wheelchairs.

    It will get the first test on Wednesday when he has a trip planned to the rehab lab. The doctor there wants to track his progress.

    Jim has good and bad days with respect to his sleeping habits. Susie is working on getting him to sleep more.

  • Jim Moves Home

    Jim Moves Home

    Today was a banner day for Jim as he has moved from the Shirley Ryan (SR) Ability Labs to his home on Odell. Superior medical transport was the firm that brought him back to Odell Ave. The staff at SR was truly super. They packed up six moving cartons. All of Jim’s personal items along with a good supply of bandages and pads.

    The task of opening all the boxes and putting all the things away will be large. With about 12 different medications and a time table that takes an entire 8 1/2 X 11 page.

    Jim’s dog recognized him at once and could not resist jumping on the bed. The SR home team sent someone out to hook up all the. Items., vacuum pump for the wound, humidifier as a respiratory device, motors in the bed that waves the mattress so you don’t get bed sores. Jim has made good progress in the 38 days he spent at SR. He was thought to steer his electric wheel chair with the movement of his head. He can lift a spoon with his left hand to his face. In another couple of weeks he may be able to get that spoon to his mouth. He is home with an RN all day that will provide, therapy, insure medications are administered in a timely manner, turning ever couple of hours. Facilitate the movement from bed to chair and back. Provide a timely bath or shower.

    Today was a banner day for all the Bosco’s.
    Cheers,
    Joe Bosco