Email updates for Dr. Scott's seach for a kidney - and was fortunate to get one!! Feb 19th, 2023!
Hi, I'm Dr. Scott (Schneider) and this is my email "trail" of the updates I have sent out about my search for a replacement kidney. I've tried to set them up by dates, starting with the first announcement of the search, up to the current time (in reverse order - so if you are new to the page, start at the bottom and read upward!). This was easier to create than to deluge new people with all the old updates!
Feel free to share this page with anyone you think might be interested! If you want to be added to the actual email list, please let me know! ( sschneide@ltu.edu )
Post-transplant Update 4.5 – 08/17/23
So, this is a minor update based on the last one (link at the bottom if you want to scroll back through).
The three-phase salvo of treatments that I went through .. they were designed to deal with a particular set of antibodies that were trying to reject the kidney. Lowering the immune system to fight the BK virus allowed them to rise up.
[It was pointed out from one of my past updates that I was using the term “bad antibodies” – I meant that in the context of what they were trying to do .. antibodies try to remove the foreign bad stuff … that’s a good thing .. but when these particular antibodies wanted to attack the new kidney {that I’ve grown especially fond of} – I decided to characterize them as “bad” .. they are tools, they are doing their job … we don’t want them to do that particular job!]
So, had some test result updates – all looking very good. The BK virus dropped way down low – probably will not go dormant as it is with most of you, but if it stays low level, we are fine with it .. trust-but-verify, we’ll keep occasionally checking on it. That’s good, because the rest of this mess was caused by trying to fight that!
HLA blood test shows the antibodies that we were trying to target. When they rose up, one particular one was relatively weak, and one other one was strong .. and so we started the infusions and filtering. Well, the upshot is, the weak one dropped below detection, and the strong one severely decreased (and should continue to do so). There was one other “rejection” test that was done – sent to California for processing .. came back with a number that is slightly lower (good!) than the amount of ‘normal’ rejection that we would see after a transplant. {I mean, this *is* a foreign kidney, you would expect the body to try to reject it a little, even with the anti-rejection drugs .. and so there is a “normal” level .. my number was slightly lower than that.}
Taken all together .. (oh, and the BUN {blood urea nitrogen} and Creatinine are both dropping {good!}) – these are all excellent signs! The other positive notes, they are increasing the anti-rejection drugs back to where they wanted them .. and the hemo catheter that was used for the filtering is now out! (Obviously, can still do IV treatments if something is needed in the future), but I’m back to being human+ (no plastics, plus an extra kidney!).
The treatments took a toll on my muscles/stamina .. starting to build that back (also, was on high doses of prednisone/steroid to help fight the BK – threw off sleep habits .. weird nerve deadening in the soles of my feet). Muscles starting to feel more normal (will probably have some lingering tremors in arms/hands – again, no complaints, just observations! I’m very fortunate in the big picture!). Sleep improving. Also fortunate to have the TIME during the summer to deal with all of this, *BEFORE* school starts (next Monday, yikes!) With the hemo catheter out, and only a tiny incision that is healing nicely, with small shower patches I can take normal showers again. [Um, I was showering daily .. but it was a sideways, protect the giant shower patch, dry it as soon as you can, hurry up .. kind of process - good thing I didn’t check blood pressure after those showers!]
So, in theory, things should calm down now and settle in to the new/better normal. I’m so grateful for all the expressions of support and encouragement – some days are a slog, some are easier .. but I know that I have a little help from my friends, always!
Scott
Post-transplant Update 4 – 07/21/23
So, haven’t posted in awhile .. still on a post-transplant medical journey it seems. Bottom line, I’m basically stable, and still have the freedom that a transplant can give me – no complaints.
It was always going to be a balancing act .. keeping my immune system “up” *enough*, but holding onto the kidney. The anti-rejection drugs (necessarily to some level for the rest of my life) will suppress the immune system so that it doesn’t try to reject the new kidney. Unfortunately, that allows other things to start to rise up.
The first was the BK virus (80% of the population has this but basically dormant due to your immune systems) – think of it like the gut-bacteria, we humans co-evolved with some of these things, but the immune system tamps them down. Until you alter the immune system. The BK doesn’t specifically have symptoms or ill-effects (like cold/flu) – but it can threaten the kidney. So, you take steps to ramp up the immune system a bit to fight the BK. Oops, now you have to worry about rejecting the kidney and/or letting other antibodies start roaming around with the heightened immune system.
The fight for the BK started with prednisone (steroid) – main effects for me was the water weight gain (up to about 8+ kg at one point – no comfortable since it happens within a week’s time). I had some massive doses, spread out, so water weight was going up and down (luckily, though I’m on a weekly taper, the water weight is dropping off much faster this time – body must be getting used to it). We are basically winning the fight to suppress the BK, it should stay down (or so low that we don’t worry).
Ok, while fighting the BK (named for the individual where it was first “detected” – not “Burger King” as my brother called it), some antibodies started showing up to threaten the kidney. There is a three prong approach .. stop production of those antibodies, neutralize the ones floating around, filter out the antibodies from the blood.
Phase 1 – “Ruxience”/Rituximab .. this is an infusion (think “bag on a pole, dripping into an IV in my arm”). I’ve had one round of that, there will be another at the end. This tries to halt the production of the bad antibodies (but will also stop some good ones – balancing act). I tolerated that infusion just fine (whew!). About a 3-4 hour treatment.
Phase 2 – IVIG – this is an immunoglobulin IV (“bag on a pole”) – this seeks out the antibodies and “caps” the offending parts of them, to neutralize them against attacking the kidney. Again, have had several of these – tolerated fine. Benefit to the IV treatments .. bag on a pole is mobile, can get to the bathroom as needed – useful because often 3-4 hour treatments.
Phase 3 – Plasma pheresis – filter the antibodies out of the blood (mostly the bad, some good). (Different machine, but *very* similar to the hemo-dialysis.) Since about mid-march, I was back to being fully human (with an extra kidney) – had no ports/tubes in me (both of the dialysis ports taken out on the same day). Back to being semi-bionic – have a hemo port in the shoulder (seems to be a utility port – used for hemo-dialysis or plasma pheresis, etc. – *exactly* the same port that was installed in the hospital, used 3 times for hemo-dialysis, luckily not needed after discharge from the hospital). Have had two sessions of this – tolerated fine, but you are locked to the machine – no bathroom trips (would need to use a urinal if necessary). Luckily these are “only” 2 hours long – I’m careful in the morning with fluid intake, and thus lasted for the session. To reference a balancing act again .. then I have to “fluid up” because it is harder to do the IV when dehydrated. (The plasma treatments are 8am .. IVIG are 1:30pm … plenty of time {too much!} to hydrate and get something to eat in between. (BTW, the bag that has the plasma and antibodies looks yucky .. better out than in!!)
So, at the end of these treatments, I’ll be severely (temporarily) compromised. The transplant team also wants me to be “in earshot” – in case any of my lab numbers change drastically, or more treatments are needed. [Sitting on a pontoon boat in the middle of 7th lake, with no cell contact, and 10 hours driving away from Detroit .. doesn’t seem to qualify.] Coupling those together, it killed my plans to go the Adirondacks for vacation. Luckily, my mom will still be able to go for one week, same week as my sister’s family and our friends, the Sylves crew. For me, it will be 2024 (but Mom and I, and the others) had a great trip last summer .. that will tide me over!
There were a number of people that I would miss at Inlet this year. My sister was driving my mom out to Detroit (Mom has been here several times, Debbie hasn’t) – her husband Kevin and youngest Kelly were stopping in Cleveland for the Rock and Roll Hall of Fame (luckily the “Get Back” exhibit was still open!). So, I would get to see them, but not a bunch of other people. Wait, hold the phone .. though she didn’t know at the time of planning that I would have to miss Inlet this year, my sister, the force of nature, arranged a surprise 6-cough .. 6-wheeze … 60th birthday party for me, on campus. Family, friends, colleagues, the rest of Debbie’s crew, all from multiple *decades* of my life showed up! Along with many of the people I would miss at Inlet. There were many clues to the party that I completely missed along the way – it was a blast!! So, that will tide me over during the week they are up there, and I’m not!
I would say, in the past, that I’ve struggled with patience. I lean much more to “immediate gratification”. I waited 3 years on the kidney database, and though two years of dialysis. ***[I think I’ve told this story before, but, remember, I’m an old, so I have an excuse. The PD dialysis had me hooked to a machine overnight – could get to the bathroom and most of the way down the hall. After the transplant, they had me charting fluid intake, but also fluid output. About midnight I had used the urinal, and measured and dumped it – but needed to write down the number (wouldn’t remember by morning). Blair had set up a meds/paperwork table in the living room to organize everything {this is something like 20 bottles, and 30+ pills a day}. I wrote down the value .. and then paused, and looked around .. looked back at the end of the hallway .. and realized that for 2 years, I hadn’t gotten past the end of the hallway at night – I now had the freedom to stand in the living room at midnight!! {Something I confess I should probably take more advantage of these days – ha!}]*** Now, 3 years wait, and 2 years dialysis … that’s relatively *short* - am certainly not complaining! Based on my blood type, I was facing 5-7 years on the national database (if not for the force of nature sister that created a media campaign to shorten that time!!). Those years taught me to be more patient and to see this as a necessary journey that couldn’t necessarily be rushed (unless you have a sister like mine!). The aftermath of the kidney transplant .. that will involve recovering from the surgeries and then taking care of the kidney (by eating right and exercising .. something I had started doing during the wait time to help hold onto whatever kidney function I could .. and to be ready for the transplant). Right? – smooth sailing at that point, right? Well, the necessary balancing act had other ideas .. the journey continues as we work out the kinks in the system. The transplant team has seen the kinds of things I’m going through many times (every patient is different, and has a different menu of things that can happen). They have successfully reversed situations like this – and they are throwing the main three salvos at it to take care of it. [Fortunately, being the “lazy bum in the summer” teacher that I am, this is the perfect time for days-long series of appointments at the hospital – would be nice to settle this now, and leave me free to teach {in person, first time since covid started .. will be masked and safe}.]
Would rather have bypassed this part of the journey, but it is what it is. At least you get to pick up some of the medical jargon along the way!
I have a few more adventures to go through, but I’m doing fine, getting great care, still have my freedom (though I’m back to putting on shower patches over the hemo port .. I’ve gotten good at it) – in the grand scheme of things (and considering others in far worse shape with kidney issues), I have no complaints!
Will probably send a quick follow-up update in a few weeks, as we see the progress of these salvos and can then predict the future a little better. Feel free to share this (and the link that should be in the email) to anyone – or let me know an email address if they want to join the mailing list. Also, feel free to ask any questions you want .. I try to ask as many as I can of the team – to help me frame the treatment and know what things I should be watching for (in lab results or via symptoms) – so I’ve got answers for most of the questions you might have – or can find them.
Kevin (brother in law) is my Beatles guru .. the phrase (during the party and during this whole kidney process) that keeps going through my head is: “I get by with a little help from my friends!” Thank you, friends and family, for the help!
Scott Schneider
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
Feel free to share this email/link with anyone - and if people want to join the email list, just let me know!
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
It was only a matter of time – they had done a biopsy and saw that the kidney was in perfect shape (no sign at all of rejection) – so, just needed to wake up. It would start with increased fluid output (I’ve been tracking how much liquid I consume, and how much I output). My native kidneys could output about a liter of fluid a day (and the nighttime dialysis could add another liter). That was their limit (and not filtering properly, thus the need for dialysis). I’m currently putting out about 2.5 liters (without any dialysis since March 9th). Taking in about 3L of fluid a day (which is rough, but we want to keep the kidney flushed to help it wake up).
Then, there are some indicators in the blood (that usually lag behind the increase in output) – phosphorous, creatinine, and BUN [blood urea nitrogen]. Before the transplant, I needed to take phosphorous “binders” when I ate, to try to limit the phosphorous that came in (because the nighttime dialysis couldn’t remove it) – and was never very successful – couldn’t get it in range. The BUN and creatinine were still “too high”, but managed with the PD dialysis. [When I had the hemodialysis in the hospital, that could drop all three of the indicators better than the PD dialysis.]
The phosphorous was the first to drop (and is now actually at the *low* end of the normal range – something I haven’t been able to do for more than a year!). Slowly the BUN turned around and started dropping, as did the creatinine. (The creatinine is now at about 2.7 .. want to get it below 1.3 .. but it had been as high as 12 – dangerously high. It hasn’t been 2.7 for about the last 5 years!)
The BUN is the fascinating (to me) indicator … I can track my cognitive awareness to the rise or fall of the BUN. When high, I get into caveman mode .. can barely string thoughts or sentences together. My poor brother Blair got very good at interpreting my grunts and gestures, and straining to hear my very quiet (tired) voice. As the BUN drops, my mind clears and I can actually use my words and thoughts (kind of a nice feature!). The BUN and creatinine are basically on a straight line downward slope toward being in range .. probably within a few days they will be in normal values – which is so amazing to see, after so many years of them being high.
My energy and stamina are increasing .. sleeping is a little erratic (but that’s related to some of the meds), but am getting enough rest each night. I do have some hand/arm tremors, from the anti-rejection meds, not unexpected. All in all *small* prices to pay for a new lease on life!
This week (basically all on Thursday), I’ll have both of the dialysis ports removed at the hospital (recovery should be minimal from those procedures .. since I’m being sealed up, as opposed to opened up with tubes exiting). That’s confirmation that the team has decided I’m done with dialysis, and thus don’t need them – a very welcome sign. I’ve tried to see the different positive indicators as a “good sign”, but decision to remove the dialysis ports is a concrete and definitive indicator that my new life has started. [In the transplant world there is a “tradition” of having a “second birthday” – mine is Feb 19th, when I got the new kidney!]
My plan is to go back to (Zoom) teaching starting next week. My physics colleagues have selflessly covered my classes (I’ve been trying to do some background work, grading, etc. to help them out – but they have been amazing and generous with their time! I can’t thank them enough!). As long as I’m cleared by my transplant team, my other goal is to attend Commencement as Grand Marshal again this May!
I’m so grateful to so many people that have supported my journey. Among all the support, my sister Deborah (and her family) stands out as the architect(s) that created the media campaign that I believe brought my name to the right people to allow me to get this gift of a new kidney. My brother Blair has been my caregiver, interpreter, communicator-to-the-outside-world, and chauffeur to my twice-a-week clinic visits. He can luckily work from here over the internet, but he is sacrificing a great deal of time, and I’m very grateful. I’m starting to shift the balance of chores and keeping track of meds, as I get stronger – but not yet cleared to drive yet (I think he secretly likes driving my jeep, so he’s not in a hurry for me to start driving!).
Sorry, this got sort of long, but wanted to try to cover all the bases. I’ve been fortunate to get a great gift of a new kidney, and thus an extended life. It is now my responsibility to take care of this kidney as it takes care of me. I’m up to the task, and am grateful for all the encouraging support that I’ve gotten from so many people – I’m humbled and thankful.
Take care of your kidneys, people .. and be kind to your siblings and family and friends, you might depend on them more than you knew!
Onwards and upwards!
Scott Schneider
So, I was discharged Feb 27th (from the transplant). Some of the delay was the ice storm (one of them) that took out my power. Since the kidney was still “sleepy” – they wanted me to do my nighttime dialysis at home, to take the edge off the bad numbers (creatinine, phosphorus, BUN {blood-urea nitrogen}). Needed power for that. Sprung on 27th, Blair (my brother) and I set up shop, got into the rhythm of the pill schedule.
Have clinic visits mon/thurs morning .. wednesday night March 1st, got something (a pill?) stuck in my throat - could breathe fine, but pills wouldn't be able to go do without backing up. Went to clinic and let them know .. at same time, based on my labs, they had decided they wanted to install a hemo-dialysis port (below my right shoulder in the front). The PD (nighttime) dialysis is sort of a blunt sword .. and takes off fluid (normally good, not when you want to flush a sleepy kidney). Hemo lets them "dial in" what they want, and not remove fluid. Based on the two things (throat and hemo) they admitted me again (March 1st). As of this writing, I’m still here, but *should* be able to go home tomorrow.
Then began the rollercoaster of procedures (mostly working on the throat issue), but also the hemo. Throat turned out to be scar tissue from previous acid-reflux events .. they used a "balloon" to stretch open the esophagus a little (a standard procedure that people sometimes have done). The downside of all the procedures was that I had periods where I couldn't eat or drink (because of anesthesia). Also not good when trying to build strength and flush kidneys.
The throat is resolved. Have to chew food well (and avoid acid reflux!). In the waiting time, they did a biopsy of the new kidney (also standard if not fully awake after 2 weeks). The excellent news is that there is zero sign of rejection - so it is *just* sleepy, and *will* wake up. [There "might" be signs it is starting, in terms of output .. the bad numbers dropping always lags behind the fluid increase.]
It is impossible to sleep well in the hospital - too many noises and constant interruptions (for vitals, pills, etc.). I'm catching some naps here and there, but once I get home, I'll have ability to sleep (no PD at night .. will probably be some hemo sessions at a clinic during the day). The delay at the moment is trying to find an appointment slot for me at a clinic - once they have that as backup, they can release me [*hopefully* tomorrow!].
I *assume* my recovery at home (un-interrupted) will be much quicker than so far ... this has been a saw-tooth of gains here .. should be a steady rise at home.
With sleep will come the ability to concentrate that I've been lacking. It has been great to have Blair as my spokesman to get the word out (and take copious notes when the medicos come by for consults).
We had shifting-sands under our feet with all the medical procedures and discussions. Blair is amazing at being able to keep everything straight and take notes. But that also meant that we didn’t update all the channels of communication at the same rate. Some people (such as my family or Blair’s family) might have known all of this long before the information got to you – in places, we asked them to hold onto it – rather than have to answer questions they couldn’t answer (because *we* couldn’t answer them either). So, please be patient with the lines of communications!
All indications are good at the moment. Hopefully the next update will confirm that! Thank you so much for all the messages of support (and celebration at the overall good news)!
Scott (Schneider) (Dr. Scott) (MUD Scott) (Uncle Doc)
[Sorry if this news is a surprise (energy flattened, could barely talk to Blair) and/or you get this multiple times (blasting out) ... and please share this message as you wish]
I'm humbled and grateful to have received a new (to me) kidney via an anonymous deceased donor! I'm so grateful for the support and encouragement from all of you over the past few years. [Gift of Life made the connection possible, and all thanks go to my sister Deborah (and her kids) for the media campaign that got me the attention.] [My new second birthday (in transplant tradition) is 02/19] The operation went smoothly (new, third, kidney is in my right front side - they don't remove kidneys if still have some output, which I did). But it is a 'sleepy kidney'- they are deprived blood during transport, and about 1/3 take longer to wake up and start filtering - usually happens in a week or two .. transplant team very unconcerned - they've seen this delay many times. Until it starts working fully, they are doing some (aggressive) dialysis as a bridge. Problem is that leaves my energy flattened and my mental facilities at slow speed. I have my wonderful brother Blair here by my side as a caregiver, translater of my mumbling, and note-taker. Took me 3 days to put this message together in my head! There is another delay to me going home .. power out in the icestorm. [I'm carefully not looking in the direction of my sister, who pleaded with me to get a whole-house generator! ] In theory, power will be back today .. should mean I can go home tomorrow (Monday). My appetite is slowly increasing, so that should bring up my energy level. I'll try to responds personally to messages in next few days, but mental and physical are only slowly coming back (59 years old .. I don't bounce back instantly.)
Love and thanks to you all!
Scott (Schneider) (Dr. Scott) (MUD Scott) (Uncle Doc)
Kidney Update #13 - 11/08/22 - To quote Maxwell Smart (Get Smart), "I came *this* close."2
So, eventful last few days. A very kind and gracious couple had made a direct donation offer for a dying loved one's kidney. They do extensive testing/matching to make sure it will work for the recipient - unfortunately, it wouldn't be a match for me. But this is the closest I've gotten.
This was waiting up until midnight to hear the go/no-go from the transplant team. This was my kind and generous colleague also sitting by the phone until midnight to see if she was going to make a midnight run to get me to the hospital. This was my brother with the airlines on speed-dial ready to book a flight.
Was told there could be dry-runs like this .. frustrating, but grateful for the possibility (and the kindness of the donating couple). It did point out that my plan-for-during-and-after-the-transplant needs a great deal of work .. like get a reasonable plan in place! This was building the landing gear in the air kind of activity (but my kidney support team {family/friends}) were amazing airplane mechanics! (Ok, done with that analogy.)
I'm grateful for the continued support from everyone .. and for the people that I might not even know about that are applying to be tested on my behalf .. or all the people that are sharing my donation message!
This is frustrating .. but Ramstein, at volume, helps ... as does, strangely, the Partridge Family Album .. I mean .. Point me (in the direction of Albuquerque) really 'slaps' (as the kids {used to?} say).
On to the future ... and please VOTE!
Scott
Please consider helping to share the message - and many thanks for all the support I've already received, and will receive in the future!
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
Kidney Update #12 - 09/29/22 - Media blitz
So, thanks to my (younger, as she constantly points out) sister, Debbie, and her great kids and husband .. I have a new social media "blitz" that is starting to roll out.
There is a facebook page : https://www.facebook.com/profile.php?id=100086153897983
There is a main website (with some very gracious testimonial videos and way too many pictures of me wearing strange attire) : https://www.kidney4scott.com/
You might even start seeing digital billboards around town! (Or an ad on my jeep, once I can get it scheduled.)
Please consider helping to share the message - and many thanks for all the support I've already received, and will receive in the future!
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
Kidney update #11 – Still stable, still waiting.
[I’ve added some people to this Kidney update email list .. if for any reason you want to be taken off the list, please let me know!]
Very sorry for the delay between updates. I forget that *I* know things are stable (and my family knows), but others might get worried about the silences. So, no problems currently .. I’ll do some catch-up and then make a request for help at the end. And, to illustrate how *sloooowly* I take suggestions about the need to update .. way back during the Men’s Soccer Alumni game .. two former VB players (Varvara Gromakova and Mackenzie Fisher) sat near me and gently prompted me to send out updates .. that was about 17 years ago (subjectively) … sigh … but, here it finally is!
I’m still stable (looking at all the various indicators from monthly blood draws, still on treadmill at least 5 times a week, appetite good, mental state still somewhat dubious [I threw that one in for my brother!]).
I joined the Kidney database back in about August 2020, I just had my second yearly meeting with the team. (I have blood draws each month for the team, and have regular draws/meetings at the dialysis clinic to monitor how the dialysis is going – I’m meeting all the targets so far.)
With everything basically stable, I sort of settled in to this “new normal” and was “just waiting” for something to happen – but the meeting with the transplant team was a little bit of a wake-up call to me. Yes, I’m stable .. *now*. If my health stays the same, and the dialysis works the way it is working, I can keep this train rolling along. *But*, I’m approaching 59 years old .. I can’t count on this level of stability forever. While I *should* be able to stay stable long enough to get a deceased donor kidney (my blood type, O, is on the 5-7 year average wait) – time is ticking away.
I’ve sent out emails and Facebook messages – I’ve asked people to advertise as they could. I’ve made videos to explain my situation and my need.
I’ve had some very generous people step forward to get tested, I’m very grateful for anyone that did, or considered it. Unfortunately, as of this writing, there isn’t a direct match yet. [I do have an AB-type paired match .. which means if there is an O donor paired with an AB recipient .. we could do a criss-cross match. I’m lucky and grateful to have that possibility, but that involves more people, and thus less likely than a direct donor match. I need to seek other blood type cross matches, just in case.]
I think I have to take my “plea” to the next level(s), but I’m not exactly sure what that might be. So, here is where I make another request.
I’m looking for suggestions on how I could advertise to get an O donor (and or cross-type donors). I’m grateful for some friends and family that have offered help, and I might rely on them, but they also have their own demands on their time. I’m wondering about something in the “professional” category. Are there social media firms, or PR firms, or advertising firms, that specialize in finding donors? Should I consider billboards and/or bumper stickers for vehicles? If I only had an emu named Emanuel, I would be more noticeable! [If you don’t know what that last sentence means, I urge you to google emu Emanuel .. and just enjoy the cute weirdness!] Have you seen/heard-of other donation campaigns, and how were they advertised? [Apologies if you might have already told me this .. I refer you back to the “dubious mental state” comment!]
I’m not asking anyone to “act on my behalf” yet .. I’m a little hesitant with some options (maybe I have to get out of my comfort zone a little more). I’m looking for ideas/suggestions!
One possibility is to build more of a social media (Instagram, tiktok, etc.) presence with some short physics-y/astro-y videos, and then slide in the kidney information. I would need some help increasing my SM IQ/skills. But, I see that as a slower background grass-roots project .. as opposed to some bigger, more immediate, “advertising” project.
So, if you have ideas, or have seen other donation request “systems” – please let me know!
As always, feel free to share this email/post as you see fit, and if you want to be removed from the email list (or add another address), please let me know!
Now, if you’ve gotten this far, and now that I’ve made this request for information, I have to pre-apologize for the fact that I’ll be in and out of email contact for the next month. Please don’t read anything into any temporary silence in answering a message/post!
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
I've created a video to help me search for Kidney donors - it is a little goofy, but gets the information out there, and there are links to a master site.
Here is the video link: https://tinyurl.com/kidney4scottvideo [this is a youtube video]
Here is the master site (which contains a link to the email site also): https://tinyurl.com/kidney4scott
[Some of you may be new to this email update list .. there is a link at the bottom with a "repository" of previous updates that I sent out - at any time, if you want to be taken off the list, please let me know!]
I would appreciate if you would be able to help me share that video on social media platforms (I'll share it on FB, if we are friends, you can reshare from there - or post it wherever).
We had a bit of a scare in the summer with my hemoglobin level - that seems to have stabilized - will check it every two weeks, and will need a monthly shot to stimulate the kidneys. [As a reminder .. this is basically a case of anemia, low red blood cells. The kidneys make a hormone called erythropoietin (EPO) - at least they are supposed to. The EPO tells the body to make red blood cells and the hemoglobin stays in a good range. So, the monthly shot is an erythropoiesis stimulating agents (ESA) - to remind the kidneys they still have some work to do!]
Nearing the end of my 8th month on dialysis - about 15 months since I started with the transplant program.
My brother was initially "deterred" from donating because of BP and BMI issues .. he took that as a challenge, and lowered both substantially - and was able to make it all the way through the testing. Unfortunately, he, like my sister, will be fine if they keep their kidneys, but they can't donate one. The transplant center takes the health of the donor very seriously - I'm happy for that - though it also can be frustrating.
As I said in the video .. I do have a "paired donor" connected to me, a friend that is type A - so we need to find an A recipient with an O donor to do a criss-cross match. More connections than a direct O donor, but I'm very grateful for that possibility.
If someone is a B blood type or AB .. and is interested in donating, they could also join the paired donor program. There is information on the Beaumont website (on the main page above).
So, I go back to the waiting game - hopeing that the video sharing might bring some more possibilities.
Classes are going well (zoom) - even ran an astronomy session (moon and planets) in the quad (everyone masked). I've been going to home outdoor games (MSOC, WSOC, and WLAX practice or alumni game). Glad to be there to watch them play (and have thermal-insulated rain suit for Michigan fall weather) - frustrated that I can't watch the inside (civilized) sports such as VB and BB! But, in time!
I did want to take the time to say how grateful I am for the concern that people express, and the interest in following my story - and the efforts (seen and unseen) that people go to on my behalf! I'm grateful beyond words.
Thanks again for any sharing you can do of the video or the links!
Scott
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
[There is a Beatles reference in the subject line!]
Sorry it has been awhile since the last update .. to quote Ferris Bueller, "live moves pretty fast." (If you are new to the updates, there is a link at the end to catch up.)
I'm still stable, but have discovered an interesting new failure mode of the kidneys .. they are responsible for creating a hormone erythropoietin (EPO) that tells the body to make red blood cells. So, this is basically anemia. When the kidneys fail, they stop producing EPO .. and need an ESA shot (erythropoietin stimulating agent) that gets the kidney to produce more EPO. (Here is a nice explainer if you are interested: https://www.kidney.org/atoz/content/what_anemia_ckd )
*Unfortunately*, I found this out the hard way .. I do blood labs every month at the clinic .. I did one in August and then skipped town to go back to Poughkeepsie to be with my Mom for the month of Aug (we had a great celebration of life ceremony for my dad on Aug 29th). The hemoglobin had been dropping for a few months at that point. [Now, I was riding high in May, June, July .. on the treadmill at least an hour a day, every day .. hemoglobin was above 10 {on the appropriate scale} - got to 13 at one point.] In first week of Aug, I had the blood lab, but left town before the results came in. I was in Poughkeepsie and got a call that the number was down to about 8 .. go get a test .. it dropped (in those three days) to 7.7 .. that's fast and bad. So, time to find a GI specialist to make sure there isn't some bleed going on internally. Amazingly, I was able to schedule a colonoscopy/endoscopy within a few days. There was just one snag .. before they could do that, I needed my hemoglobin level higher .. I needed a *transfusion*.
Alarm bells started going off in my head .. my transplant team instilled in me the importance that transfusions have to be done "the right way" to make sure they don't introduce any antibodies to my system (that can later cause problems with matching with a donor). This is basically only a problem for pre-transplant patients .. a normal transfusion patient doesn't need to worry about it. [Hmm, not knowing if someone isn't going to *become* a future transplant patient .. maybe these steps should always be followed? Not my circus, not my monkeys .. a question for another day.]
So, I gathered all the info I could on what type of transfusion (has to be "leukocyte poor" - meaning doesn't have the antibodies) - and kept repeating that like a mantra. It *appears* (the transplant team only tests me every three months for antibodies) based on the paperwork that the transfusion team did everything right .. fingers crossed.
Ok, so .. colonoscopy/endoscopy (meaning .. "both ends") scheduled for a Wednesday .. thus prep day was Tuesday .. *that* Tuesday happened to be the day when the Arts and Sciences college (within the University) is doing an all-day retreat to prep for the fall term. I was going to be on zoom anyway (from Poughkeepsie), but I had to let a few people know why I would keep hopping out of the zoom session "as needed" (for the prep .. you know what I'm talking about right, don't make me explain it!).
Ok, colonoscopy/endoscopy basically found no issues .. whew, that's "good" (in that there are no bleeds internally that would explain the hemoglobin drop) .. but still doesn't solve the problem - so we turn to the ESA (which I had on the 7th of September .. takes several weeks to ramp up). The hemoglobin was a little over 10 from the transfusion .. has dropped down to mid 8's, but have the ESA that should start to work. Will have weekly blood draws to monitor the hemoglobin (and maybe adjust the ESA hormone shot dosage).
On a side note, I decided that if it is an outdoor game, and I can control my entrance/exit (so, our athletics field), I'm going to try to visit some of the team games (this would be soccer in the fall .. and WLAX in the spring - already visited a WLAX practice). WSOC was last wednesday - sat in the nose-bleed seats (up high) and away from everyone .. cheered like crazy (first time since March 2020) .. Thursday, I remembered that by this time of the semester, my voice would have been much more in tune from cheering .. it was pretty raw! Saw MSOC on Saturday .. voice wasn't as raw on Sunday. It will improve if I get more chances!
So, still in a waiting/monitoring status .. am fortunate to still be able to teach over Zoom for this semester and most likely next (and then post transplant, if covid is still around, I'll have to, because of the immune suppressant drugs). Grateful for all the support from everyone!
Hope the end of summer (and start of Fall .. tomorrow) is treating you well!
Oh, *something smashed into Jupiter* .. oops, look at the time, gotta get this sent out ..!!
Dr. Scott
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
Kidney Update #8 -07/21/21
[You may be new to this “kidney update” email list – there is a link at the bottom with past updates to help you catch up if you wish.]
First I have to start with some sad news .. my dad (Dudley Scott Schneider) passed away last week, peacefully in his sleep. He had been in hospice for over a year but he passed peacefully. [I was fortunately able to get home, first time in 15 months, in June to see him and my mom.] The family is doing well, I’m currently home in Poughkeepsie right now. A service in celebration of his life will be held on Sunday, Aug 29th from 12-2pm at William G Miller and Son Funeral home in Poughkeepsie (and online on Zoom - link will be on the website). [https://www.wmgmillerfuneralhome.com/] I’m looking forward to hearing stories of my dad, because he was a storyteller (and the acorn didn’t fall far from that tree!).
My dialysis/kidney situation remains the same .. waiting to see if I can find a donor, but all my numbers are stable with the dialysis program. I’m coming up on my 1 year “anniversary” of joining the kidney database .. I’ll repeat my appeal for a donor on email and social media and would appreciate if you would help me expand the reach of the appeal (as you feel comfortable). I know some have stepped forward to be tested, and unfortunately no matches yet, but I’m grateful for anyone that shared the appeal, or tried to get tested! I have a scheduled-a-year-ago meeting at the Transplant center on Aug 5th (so, not an exciting-news meeting, a “check-in” meeting) – I’ll wait and make the appeal after that, in case there is useful information from that meeting.
I move a small army of stuff when I travel .. but have gotten good at tearing down and setting up my “MASH” unit. I can do “delivery drops” of some of the solution supplies, so that I don’t have to cart that across the country.
I have a small nagging issue at the moment .. dialysis patients sometimes get an “itchy skin” reaction (for me is basically my upper back and arms). I know now (as if I needed a reminder) .. I would make a *terrible* vampire. All the accounts (presumably fiction) that I’ve read talk about an eternal “itch” of the blood hunger. It didn’t help that soon after the itching reaction started, I also got hit with a bout of poison ivy. So, if any of you had calamine lotion stocks and bonds .. that’s why they just jumped! One cause might be a phosphorus issue (as in too much). As I might have mentioned, the dialysis can try to reduce sodium and potassium levels (I’m supposed to be careful of my diet to avoid intake), but it can’t deal with phosphorus. So, at the moment we are trying a “blocker” pill to take out the phosphorus. I double-checked with the dietician that she didn’t give me a “week’s worth pill” version (to me the pill seems to be about 3 inches long and an inch wide .. probably exaggerating a little). Luckily since I have lost weight (intentionally), I’m able to tolerate the larger pills.
This brings me to another thought .. in case you see me on Zoom or in person .. I’m intentionally down to close to 180 lbs – it would be noticeable (I hope), but it has been carefully done with the intention of giving a future transplant kidney the best chance of sticking around. I think I still look healthy (am on treadmill several times a week), but if you haven’t seen me recently, that might be a little surprising – thought I would give you a heads up.
I’m staying masked out in public – I’m *reasonably* sure that my immune system was able to mount a response (because I got the vaccine just before/during the start of the dialysis) – but I obviously do have a weakened immune system at the moment, and see no reason not to play it safe. [If you are unvaccinated, and or hang around with unvaccinated people, I would hope you would be responsible and wear a mask around me. But, I have my mask to try to protect me from the irresponsible people. Yes, that can be considered a “subtweet”, in the parlance of the “yutes”.] I have less hope about an immune response *after* a transplant .. those numbers don’t look good in initial studies, but there might be a need for a third vaccine shot. [I saw a good analogy, if anyone {raises hand} has gotten hepatitis vaccines {as part of the prep-him-now-while-we-can-engage-the-immune-system plan}, they are now given in 3 shots .. because that works the best. So, we might not need to think of covid vaccine “boosters” .. we might end up thinking of it as a three (or two) shot regimen. But, I’ll happily fight that battle if I’m lucky enough to get a transplant!
That’s where things stand right now. For a variety of reasons, I’ll be teaching on Zoom this Fall semester (most of LTU will try to be back for in-person classes). Unfortunately, due to the uncertainty of my immune system and the variants (and the willfully unvaccinated) – I’m not sure in-person cheering for my LTU athletics teams will be possible (for me). So, this Fall will be a re-run of the Spring for me (except weather will get cooler over time instead of warmer .. weird).
Hope everyone is safe and enjoying some good summer weather (however you define good!).
Dr. Scott
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
Kidney Update #7 - Ides of May - 05/15/21
[There is a web link at the bottom that can be shared with anyone – contains this update, and all the others, plus contact info for me and for the Donation people.]
Everything is pretty much status quo .. which is a good thing! We are monitoring several indicators for the dialysis effectiveness – all are holding steady. I’ve got the energy for an hour on the treadmill just about every day. (I asked one of the WVB players, also one of the sisters in the sorority I advise, what her treadmill settings are … she said an incline of about 15 and a speed of about 7. I got to about incline 8 and speed 3, and started to feel like my body was exploding at about half the speed of light .. I’ll stick with 4 and 2.7 .. and survive the session!)
The BUN shows that the dialysis is taking out the toxins at a good rate. There is a Kt/V (which, when I first heard it, sounded like an equation .. it is!) – this tells the rate that the toxins are coming out. We’ve done a specific test which has me leave a solution in overnight (instead of cycling) and then going to the clinic (while full .. not fun .. like driving after a Thanksgiving meal), drain, fill again, then sample every few hours (checking the changes to the solution).
It turns out I’m a “low transporter” – which means I *might* need to increase the solution % at some point, but I have plenty of room to grow. I use two 5-liter bags a night .. to get 8 liters through the night (4 cycles of 2 liters). I alternate the solutions (1.5% and 2.5%) as to which is the “first” bag (the one that gets completely used, the second bag only uses 3L. Since we have 7 days in the week (odd number .. thanks to the 5 naked eye planets and the sun and the moon, we are stuck on 7!), I needed a way to keep straight when I switch the bags .. since one is TWO point 5 % … I use that bag first on TUEsday and Thursday and SaTurday. Clever huh? (Pointing to my head .. “there’s no off switch here!”). There are three levels .. 1.5, 2.5 and 4.5% .. so if I need to adjust the solution %, I have room.
I’m “fully cooked” with the Moderna vaccine – and had a mild reaction, so it would appear that *at this point* I’m able to make anti-bodies and should be protected. In unknown situations, I’ll still be wearing a mask, because .. of course .. there is no reason NOT to, in my case!
Unfortunately, post-transplant .. the situation looks a little more grim. I’m keeping an eye on the information that is available for people that are immune-compromised and it doesn’t look good in relation to the vaccines. It doesn’t appear as though people with suppressed immune systems can create the antibodies (this is *VERY* new and uneven data). Now, in theory, I have antibodies now, I don’t know what kind of protection that might transfer into the post-transplant time (I’m assuming to fight a covid infection .. or any other infection .. the body needs to keep making antibodies). As you might know .. once I’m fortunate enough to get a transplant, I’ll need to be on anti-rejection drugs to allow my body to hold onto the kidney. These drugs suppress the immune system (which is why transplant patients need to be very careful about getting exposed to sick people). So, again, poor timing on the part of my kidneys to schedule this failure during a pandemic! There might be the monoclonal antibody treatments that might be available (essentially importing the antibodies needed to fight covid that my body might not be able to create after the transplant). I’ll keep an eye on the research and the options. *Obviously*, I would not hesitate to get a transplant, even though there will be some unknowns afterward. Dialysis is keeping me stable, and can for a long term, but I need to have a transplant to ultimately survive. (Yikes, turned serious there.)
Speaking of transplant possibilities. Sometimes I get approached by people that are interested in more information about donating. I’ll answer whatever questions I can, and I’ll point them to the Royal Oak transplant center (info is in the first appeal email I sent .. found on the archive link below). Now, if the potential donors are willing to share information with me, I might be able to follow along with the process, but they are under no obligation to do so, and once they contact me, I only *respond* to questions/emails/contacts from them .. I don’t pester them about where they are in the process. I also value their privacy and also am aware that people might be willing to donate, but for a variety of reasons, it might not work out. Therefore, looking forward, there will come a time when I might find out about some possibilities, but I won’t share that information until something is more solid. That’s protection for the donor, but also for me, in terms of not being able to give answers if I don’t have them. So, I’m hoping to get to that stage where I know something, and even better, when I can share it because the plans become more concrete. I hope you’ll be patient with the process – believe me, I’m learning a great deal about learning to wait over the long term – that’s not been one of my skill sets up until now!
I have several bird feeders, and started the old hummingbird feeder (the feeder is old, the hummingbirds are relatively young) – I have a fancy new horizontal hummingbird feeder, but have to figure out how to hang it and keep it horizontal! {Also have a trail cam coming that I’m hoping to use to get some up-close bird shots). No hummingbirds yet, but they’ve shown up at my parents place in NY, so should only be a matter of days!
Until the next update!
(Dr.) Scott
Here is an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link):
http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
Kidney Update #6 - 04/20/21
First, announcing an "archive" of my email updates - in case you are new to the email list, you should start here (feel free to share this link): http://vnatsci.ltu.edu/s_schneider/DrScottKidneySearch.shtml
I started the PD dialysis on March 10th - so it has been a little over 5 weeks. Everything is going very well. I'm getting used to the nightly routine - and mostly sleeping reasonably well.
My analogy is "hitting the red lights" .. most people are on about a 90 minute sleep cycle (you go deep and then come back light about every 90 minutes). The cycler machine is also on a 90 minute cycle. So, if I am awake for one of the transitions, I'll probably wake up at all the transitions (hitting all the red lights). But, if I can stay awake until halfway between the first two, then I'll be deep during the next transition, and usually sleep through it (hitting all the greens).
I'm doing blood labs every month, and we video-meet (clinic staff + my nephrologist) to discuss. We needed to miss the one at the start of April .. and I had blood labs that showed the creatinine level rising (that's bad) .. got a little freaked out (since dialysis was in full swing by then). It was explained to me that we are going to stop looking at that indicator (we *know* the kidneys have mostly failed .. that doesn't give us useful information). We want to watch the BUN (blood urea nitrogen) and the Kt/V (hey, that looks like an equation).
The KT/V indicator is the primary one to tell if we need to adjust the solution % that we are using. (K is rate at which urea {the toxin in the urine} is removed - liters/minute .. t is time in minutes .. so top of that is # liters of urea removed .. bottom is body fluid volume). There is also a BUN (blood urea nitrogen) thing that can be tested/tracked. THOSE are better indicators that the dialysis is working (and/or if we need to increase/decrease the concentration of the solution), than the creatinine.
Looking at my old BUN numbers .. rose from 50 in Nov up to 72 in Feb, then down to 67 .. NOW, down to 50 and stayed at 50 in the next blood draw .. it will probably stay about that level because the dialysis is definitely working to clear out the toxins!
The dialysis is NOT a replacement for the kidneys .. so these numbers will never match "normal" numbers until I'm able to get a kidney transplant. But, the dialysis has kept me stable (and will continue to do so, theoretically for years, but hopefully will get a transplant before then).
I don't have any specific news on a possible donor. Remember, unless a donor specifically tells me they are in the system, I won't know, because of donor confidentiality. And, even if there might be people in the system it would be too early to announce anything (to protect the donor's privacy and to not get anyone's hopes up until things are more definite).
But, as I said .. I'm very stable right now and the dialysis is keeping me out of the danger zone - thus, I can wait the time I need to wait!
I just had my second Moderna shot today .. asked the nurse if I can start eating used gum off bannisters (the way Buddy the Elf does in the movie "Elf") .. she said "wait two weeks". [I had set the "tone" of the interaction by asking if I was going to get a third eye appearing in the middle of my forehead after the shot ..]
My sister-in-law, Lisa, is my Moderna Fauchie Ouchie buddy - we got them both on the same days!
So, things are rolling along - hope everyone can get vaccinated soon!
Until next update!
(Dr.) Scott
Kidney Stuff Update
Long post, since I haven't updated in awhile.
Short version - dialysis going well so far, feeling good.
We last left off with me scheduling the Dialysis training (to be able to do home dialysis, mostly at night, mostly). [Sorry, had to add that "Aliens" reference as soon as it appeared in the sentence!]
The PD (peritoneal dialysis) catheter allows me to connect to a bag-on-a-pole to add fluid to the peritoneal cavity, or use a "cycler" machine at night (it adds the fluid, lets it dwell, then drains it, and repeats 4 cycles).
The training went very smoothly (5 mornings over at the dialysis clinic). Becky was very patient with all my questions (and yes, since I'm a geek, I asked to bring the training materials home so that I could study them to prep for the sessions).
Each day we would run through a dialysis session .. Thursday and Friday were spent on the bag-on-a-pole manual method. They start with that because I could *always* do that (even during power outages) - so, have that as the backup plan if necessary. [Also, in case I get an infection in the peritoneum, I would use a bag to introduce antibiotics .. but, as Becky said, "You're not allowed to get an infection." - So, I've got that going for me!
There is a very specific order to cleaning the table surface, getting the supplies, setting up the "organizer" (holds the various hoses .. from bag, from me, and to drain bag). If I made mistakes it was cleaning hands too much {that is, earlier than needed, but always when crucially needed}. There is one moment when I'm switching my catheter end, to the bag system .. that's where the sterile insides of both systems are vulnerable. Those are the steps I wanted to study and practice in my head .. am now very comfortable with the manual system.
Luckily, I will rarely use it - because the cycler system, while more involved, is easier for me. It involves a cycler machine, a series of hoses in a "cartridge" that gets put in the machine, two solution bags on top, and a drain line (to shower or toilet .. the choice matters, as we'll see!). Similar cleaning rituals to get started, but the machine is basically a computer - so it has a screen that steps you through each step - just follow the directions! There are many hurry-up-and-wait moments as it calibrates itself at different stages. There is a heater on the top where one bag goes, so that the fluid that goes in me is "reasonably" similar to body temp {more on this!}. It manages all the exchanges .. there are four of them programmed, each 90 minutes of "dwell time" (time the fluid sits in me, absorbing the toxins), add in the fills and the drains and it works out to about a 9 hour process. So, I have to start with "what time do I want to be up and ready to go" and work backwards to make sure I have time to get the process started. [I *could* stop at any time if necessary, but obviously better to let it run its course.]
So, home visit by Becky on Wednesday to check my setup and run a quick session (to make sure the bed level and the machine level were alright .. fluid pressure levels and all that).
Wednesday night was my first session by myself. Got everything set up, started process .. went through first fill (not a bad feeling, especially when lying down, but noticeable, will need to get used to it). Aaaannd, got a drain alarm! I've been trying to train myself to sleep on my back (knowing this was in my future), but still turn to one side or another during sleep .. I think that my part of the hose got a little kinked when I rolled to my side .. I've gotten better at keeping the hoses free as I shift positions). I know how to clear the alarm, I checked my hose and the drain hose (both 20 feet long .. so that drain can be in the bathroom, and I can go there if needed while still connected). Came back and reset and had no other issues.
Didn't sleep much that night though .. every 90 minutes (of feeling full) there is a draining (and that has some twinges as the fluid level gets low and the catheter has nothing to pull on, except me), and then a fill .. and the fill temp that first night was a little cooler than body temp. I'm not sure it would wake me if I were asleep, but didn't help with trying to fall asleep. And, I chose the toilet for the drain line. Big mistake. Every 90 minutes, I could hear that water go into the toilet .. and thus I had to go up and go myself! [Spoiler - switched to drain right to shower drain the second night .. silent!]
So, not much sleep, but everything worked. And, I pulled out an extra liter of fluid. [The dialysis process will remove toxins, but also excess fluid. I'm fortunate that my kidneys can still make fluid, but not as well as if healthy, so this is a side feature of dialysis.]
Becky gave me a call to check in, and her first comment was "you probably didn't get much sleep did you?" Did I mention how excellent she was? She also mentioned that the modem connected to the machine (to transmit data on the exchanges) didn't connect to their computers. There is a USB drive that is also storing the data, and I have monthly visits to the clinic, so I can bring that until we get it worked out. I, the computer geek, decided to see if there was something not set right in the machine (if my patient number wasn't correct, it wouldn't transmit properly). I got into some of the setup screens, and couldn't find anything, but then got trapped on a "touch your finger here" on a moving crosshairs. [Did I mention the machine is a touch-enabled computer screen?] Oh well, can't get anything useful - shut it down - tech support could figure out something later.
[Vaccine news .. I'm "cleared" by everyone, in that no one in the kidney system has any objections to me getting the vaccine. It's now a race between Beaumont, the dialysis clinic, or Oakland County to see who gets to me first. I'm safe and stable, so I'm not breaking my neck to sign up in 17 different places - but will get my "Fauci Ouchie" as soon as I can!]
So, on to night two (last night)! [Now, at this point, you might be wondering, but how are you feeling? Other than tired-from-lack-of-sleep .. I feel pretty good .. not sure if it is in my head or not, but I do feel a little more clear-headed and have more energy .. that's the way it should be once I start filtering out the toxins, but this might be more psychological than physical at the moment. I'll take it!] Ok, get all the stuff ready - start up the machine .. about two screens in, it won't let me click the NEXT button ... the settings for the size of the bags was right (5L), but if I tried to change it .. I couldn't seem to set it back .. was hearing beeps, but screen wasn't responding to my touches. When I tried to shift to other menus, in pressing one button, it would be as if I had pressed the neighbor instead. You've probably guessed .. I screwed up the screen calibration earlier in the day!
When in doubt, call Tech Support (number *right there* on the machine, with the serial number and the software version ... I'm sure they enter those when I tell them, and it pulls up a simulator program of *my* machine). They clued in right away what I had done .. got it calibrated again, and I could return to the process.
Last night I actually slept a fair amount of the time. I think I remember only two drains, out of the four. It helped having the silent shower drain too!
Machine makes wheezing noises (I mean, so do I, machine, so do I) .. but I think I'll get used to it. I have an whole-house AC that seemed really loud the first few days I was in my house, but easily got used to that.
So, with two data points behind me .. we are off to a good start! Tremendous amount of un-avoidable medical waste (with bags and tubes, etc.) - since it has to be rigorous enough to ship, but single use.
As part of my get-in-shape-for-a-kidney-transplant, I did a great deal of walking this spring and summer .. but started getting winded more quickly in the fall {plus found it very hard to balance temperature changes .. my house sits at about 76 most the time - my cold-tolerance is temporarily shot}. Have an exercise bike, but prefer walking [and when I'm out in the world walking on nature hikes .. the jeep is 1-2 miles away, thus I *have* to get back, so could stick with it] Exercise bike was a decent one, but that is more strenuous exercise and I need to build up stamina again .. and prefer walking. So, I ordered a treadmill .. should be able to have it here and running (or walking) sometime this week.
My exercise bike obviously heard me ordering it .. when I moved it into a storage area, it severely stubbed my big toe. [Somewhere my friend and colleague Valentina is muttering "wear slippers or shoes" - she caught me twice waving from my front porch with either bare feet or sock feet!] So, the machines are rebelling.
Speaking of which, in the back of my mind, I'm toying with the idea of referring to hooking up to the dialysis machine as "jacking in to SkyNet".
As I said, a geek.
So, I'm more stable than before, medically speaking! On with the waiting game!
Hope everyone else is safe and fine also - go get your "Fauci Ouchie" shot as soon as you can, if you haven't already!
Scott
Jump to topMinor update - Dialysis catheter checked out and healing right on track
Had appointment with the dialysis center to check on the PD catheter and run a short "test" to make sure all the internal connections are working fine (basically a pressure test). Passed with flying colors (someday I'll look up the origin of that phrase)!
Really like my dialysis support person (Becky) - very easy to talk to - very practical - meets my questions at the right level.
Have more training in first week in March, then will have a home machine where I can do the dialysis at night while I sleep (a more gentle kind-on-the-poor-kidneys process than hemo dialysis, especially since I have my mobility and mental facilities {such as they are} - I can take control over it myself - better in the long run).
For now, to keep the tubing manageable, I have a very stylish mesh webbing containment system (I'm trying to avoid saying the word girdle ..). I'll spare you the actual picture, but it alleviates my concern about how I keep the tube from moving around too much, esp at night. Will have a sterile gauze pad on it always (better to protect the interface with the skin), but this constrains the tube from moving .. should be barely noticeable under clothes (but that's too low to be seen on Zoom anyway). I'll have to experiment with how much (vertically) of the webbing to use to find the happy medium between containment and "full body stocking".
Baring a quicker transplant, this was the inevitable next phase (dialysis) .. I struggled with taking this step because it seemed like a door was closing, but it was closing anyway, regardless of what I did. This is the next phase .. a bridge to the eventual transplant. And, I will feel better once the actual dialysis starts (in a placebo effect, I'm fooling myself that the small amount of dwell time today actually made me feel better .. more likely it is less scary than it was before, and that has lifted my mood). It will also make it easier for my body to deal with the transplant when that comes .. since it will be in a healthier (albeit machine-maintained) state than it is now. Take care of your kidneys - it is weird to see a tube sticking out of me.
[ I *still* object to my surgeon forbidding me from calling myself a Bionic Man. Yes, this is "low tech" ... but it is "more tech" than I've had before. Maybe Incrementally Bionic Man? Like he's an expert abou . oh, right .. nevermind. My Yelp review of him will be confusing for future patients. ]
Jump to topKidney update – 02/11/21 “*Not* a Bionic Man” - but everything ok so far!
So, this might be a slightly abrupt jump forward in the story for some – but this is the morning after getting the PD (peritoneal dialysis) catheter (thin flexible tube, inserted through the stomach muscles into the peritoneal sack that encloses your internal organs. This will allow for home peritoneal dialysis (fluid will put pumped in to that area, it absorbs the toxins that my kidneys can’t handle, and then siphons it out .. can be done at night, so it doesn’t interrupt my daily schedule) - mentioned this in the last update.
I specifically checked with the PD surgeon and he says I *cannot* refer to myself as a “Bionic Man” now .. he said “this is too low tech for that.” [He’s a fan of physics podcasts .. so, obviously I lucked out in finding him!]
Shorter version – this morning I have the normal-ish twinges of discomfort you might expect from this .. will try just going with Tylenol instead of heavier stuff (have it, but hope I don’t have to use it). In the post-op instructions .. the care for the incision is 2 pages, the Opioid warnings are about 63 pages! (Ok, not quite, but Tylenol-type pain killers seem to be working fine.) Everything seemed to go fine!
Ok, if you want the longer version .. let’s step back and go through the story. My sister-in-law Mary (my brother Blair’s wife’s sister) agreed to drop me off and pick me up (due to covid restrictions) over at Ascension (where the surgeon works). She rigged the back of her car with painting plastic dropcloths and blue painter’s tape to seal off an airspace (she works in a High School). It was perfect! And, similar to what Valentina Tobos (my physics colleague/friend at LTU) had suggested if she needed to do any transports in the future. I think I’m going to enter both of their names in NASA’s “So you want to seal off a quarantine area with duct-tape and plastic sheeting” contest! So, being the smart-ass that I am, I came out of the house when Mary arrived wearing a fake Space Helmet (as though I had a separate air supply). [And, just now, I realized I forgot to say my joke .. that I had been working on for *DAYS*, when I got in the car … “Ok, Mary, we both start holding our breath starting … NOW.” Opportunity missed!]
*I* was thinking of just driving myself – but hospital insisted .. and I had somehow missed it in my prep, but I’ve lost my driving privileges until Saturday (um, abdominal surgery … duh .. but I didn’t think about it). So, if anyone wants an excellent experience with transport to kidney-related surgeries .. I’ll pass along Mary’s number! She has plenty of blue painter’s tape!
Went through check-in (and then texted Mary to “release” her .. had gotten a call the day before, that my voicemail had not delivered until 10pm, that I needed to “pre-register” by phone – wanted to make sure that wasn’t going to be a problem) and got gowned up. Ok, I have an advanced degree, but it is in physics, not medical science .. why do gowns seem so confusing?? In this case, one of the arms was “unsnapped”, and I couldn’t wrap my mind around how to put it on until I realized that had to be snapped – then the shape looked familiar [“um, this seems to be the one for the “one eyed, one armed, Flying Purple People Eater?”] {Ok, that’s a joke for a certain older segment of this email population .. and yes, I know it is “one horned” .. but that doesn’t fit the joke!}
Very nice people, all the way around – many repeat questions about when and how much I had last eaten .. but I’ve seen “The Verdict” with Paul Newman about a dozen times, so I had prepped properly! Had a bed in a double room (but luckily no one showed up in the other bed) – for the start, and then post-recovery. Ascension is a teaching hospital – had trainee watching when they started the IV. My only complaint was that I was getting intake questions from another nurse while this was happening, and I wanted to hear/”watch” the IV discussion! (I can’t literally watch the needles going in, too squeamish, but the process was fascinating to hear the “tricks” of getting the right pressure in the pressure band .. and that I had excellent “spongie” veins .. yes, I know you are jealous. Having that room meant I could lock all my stuff in the closet (made it easier to have phone in beginning and end when I was killing time). Moved to the pre-surgery/post/recovery room, for more anesthesia-related food/drink questions – for each new person, I tired a variation of my “hey, when they change the next IV bag, can I get Cherry flavor, or maybe Lemon?” [I *think* from the reactions I was getting, that the jokes were well-received .. if some eye-rolls .. but not “oh, great, another jerk that has to delay my job with his stupid jokes” – I’d like to think I’m delaying the job with clever jokes.]
Had people in the beds next to me both before and after the surgery (for different situations) .. they were in far worse shape than I was .. reaffirmed how relatively fortunate I am!
My surgeon saw me there to check-in .. that’s where he dashed my hopes of the Bionic reference. Sheesh, doesn’t he know about bed-side manners? Did offer to put in a micro-chip with it, to track me … now I’m imagining that there is a faint beeping noise coming from under the bandages!
At some point they lay me back and put the anesthesia into the IV .. they made a comment about “ok, there you should go”, and I remember saying “bye, bye!” [sadly, I didn’t hear the applause and general laughter that I *assume* happened after I said that].
Woke up – could tell that I had had surgery, but not in any major pain .. everything seemed to have gone perfectly. [Much shorter actual operation than anticipated .. but delay in getting the surgery room available .. Mary was getting a little worried waiting for the post-op call – but everything went fine.] She sent the word out to my family via email .. and not too long after that, I was back in my room, with my phone, and could text/message people.
They went over all the post-op stuff, filled the prescription for the opioid pain killer (if needed), and then it is a waiting game. [Side note .. so far, I’m doing fine with just Tylenol … going to avoid the opioids if I can .. the post-op instructions are 2 pages .. the Opioid warnings are 63 pages {not quite}. If you’ve heard me talk about jelly beans or candy or sweets .. you might suspect {as I do} that I could have an addictive personality, so I’ll pass on them if I can help it.] The waiting game is to make sure I can empty my bladder (they did a scan to see how much liquid was in there) – this would be a post anesthesia thing, not kidney related. I tried a few times, but wasn’t really working, so we wait. Got a warm compress, and they offered me sweet sweet coffee!! (Ok, didn’t take it with sugar, I mean it was wonderful warm caffeine!). So, that’s two methods to help encourage the bladder. Now, sigh, I have to reveal the third .. and this will cause me future grief of the gloating .. was texting with my sister, Debbie, and she mentioned (I think this happened after her emergency appendectomy) that she was in a similar situation .. and “don’t stress if the river doesn’t run yet!”. At that moment, I had the welcome feeling that I was waiting for .. remember the warm compress and the coffee too .. let’s not forget them, it is not *all* about the power of Debbie’s words .. no matter what emoji taunts she uses in the future!!!
So, that was my ticket out! Had let Mary know what the delay was, and she timed it perfectly to arrive only a few minutes before they cleared me to start the exiting process (so she, and I, didn’t have to wait long). Long traffic jam to get onto 696 – and stopped at a Burger King to get a sprite (had a breathing tube, and had gone >12 hours without liquids until the wonderful coffee) – I’m telling you .. they made a mistake and put ambrosia (nectar of the gods) instead of sprite – it felt GREAT! Now, I was two coffees (and now a sugar pop) “under my belt” as it were .. so Mary should be congratulated for surviving that mile-a-minute conversation on the way back! She had kindly made some dishes/snacks for me to bring back to my house (in the hospital is where I found out about the no driving until the weekend .. should have figured it with abdominal surgery, but didn’t think about it! – so the food was a welcome addition to what I have stockpiled here). I’m telling you, you should ask for the recipe for her multi-layer taco dip, and her “Chicken KaZAMM” (pretty sure that’s the name … but when you ask her for it, for some reason she will immediately start laughing .. go figure.).
I tend to toss/turn a bit when I sleep – had considered just spending first night in recliner, just in case, but decided to try to bed. Having carefully/safely lost weight since the start of the serious kidney issues, I find I can mostly sleep on my back if necessary .. with a pillow under my knees, that worked to put abdomen in good position. So far, seems to be healing fine – will change dressing Saturday for a new one for a few more days (have to check how long after that). Will have appointment with surgeon in 2 weeks as follow-up (but, he said if everything is fine, could cancel that if I want .. I’ll probably keep it just to double-check).
Now, at the moment .. this starts, ideally, a 3 week healing process before I would have to use the dialysis catheter. I’ll get trained (maybe as early as this week?) on how to use the cycling machine (cycles the fluid in and out overnight .. information was in the last update, but I can answer more questions if you have them). But, this way (the tube, and the training), when I get to the point that I need to start the dialysis, I’m ready to go right away. So, hoping I can delay the symptoms for at least three weeks! [If it turns out, for whatever reason {no symptoms or a kidney transplant gets scheduled}, having this tube is just a good insurance policy, and would just be taken out after the kidney surgery.]
So, that’s the status at the moment. Very good experience, recovery *seems* to be very straight-forward and to paraphrase Tom Petty “just the normal pains in here”. So, crossed-fingers, because that’s how healing from abdominal surgery works, right?
Scott
Jump to topMost likely on to the next phase
So, had a bit of a scare two weeks ago .. creatinine level rose dramatically (higher than December) (that's bad .. means kidneys are failing more .. the % function drops when creatinine rises). My nephrologist suggested I check in to the hospital overnight to do an IV drip to get the creatinine level down. It did, slightly.
Jump to yesterday, two weeks after that, had another blood draw .. unfortunately the level was even higher.
Now, I'm not having the symptoms that would require dialysis .. *but* the numbers are heading in the direction that says I need to prepare. So, I have a consult next week about getting a PD catheter. That's for a home peritoneal dialysis (sounds scary, basically it is an overnight filtering to compensate for what the kidneys aren't doing). Here is a good explainer ( https://www.kidneyfund.org/kidney-disease/kidney-failure/treatment-of-kidney-failure/peritoneal-dialysis/ ). [I'm hoping the "fill the belly" will not make me look like Santa Claus!]
This was a step I was hoping to avoid, but it is a bridge to the eventual transplant, and I'm fortunate to have that ability to have this bridge.
It's been suggested I should inquire about different flavors of the filtering fluid .. and whether I can get the filter machine styled in LTU-Blue .. I'll keep you posted!
Scott
Jump to topAnnouncing my kidney search - can you help me spread the word?
I've started to announce my situation on social media. Up until now I was keeping it private, as opposed to secret - but, I need to get the word out to see if I can find a donor. It would be a great help if you could share this "letter" (I have a PDF and an image to make it easier, depending on how you share it). I'll share it on my Facebook feed after I send this email. I'm happy to try to answer any questions you have about transplants (and there is info in the letter about how to contact the Beaumont Royal Oak team directly if you prefer)! Thanks, in advance, for any help you might give me in sharing this! [And, if you wish to be taken off this email chain, please let me know .. if I had my druthers, *I* would be taken off the email chain too!] (Dr.) Scott Schneider
Links to the original appeal - jpg and pdf version - feel free to share!
ScottSchneiderKidneyLetter.jpg ScottSchneiderKidneyLetter.pdf
Jump to topAnnouncing my kidney search - can you help me spread the word?
Friends and family,
I’m not good at asking for help, but this is something my physics equations can’t seem to solve. Unfortunately, my kidneys have decided to fail (during a pandemic, how rude!), and I’ll need a kidney transplant. My prognosis should be excellent, and a live donor means better longevity for the kidney than a deceased donor. [I am on the kidney database waiting list for deceased donor kidneys, but that is 4-6+ year average wait time for my blood type.] There are over 100,000 people on the kidney recipient wait list – a live donor would be a better option (and shorter wait).
I might be able to get a kidney from a living donor within a year if we can find a compatible match. The blood type (mine is O) has to match, but strangely it doesn’t matter the +/-, as it does with blood donations .. kidneys are weird, go figure. Additionally, kidney donors can’t have diabetes, unmanaged high blood pressure, or kidney problems themselves (that last one should be obvious). The donor doesn’t have to be biologically related to me, just needs to be type O and healthy enough to donate (and willing, obviously). [Since I’m a professor, and my social media happens to have a fair number of students connected, for what should be obvious moral and ethical reasons, the donor cannot be a current student.]
A direct O-type donation is most likely the best. There are possibilities of a paired-donation. (Say Donor Sally is type A, so she can’t donate to me (type O). Recipient Jim is type A, and Donor Billy is type O so can’t donate to him. But, if Donor Billy is a match for Recipient Scott (me), and Donor Sally is a match for Recipient Jim .. then the team can “swap” those donations. That is a little more rare {because of all the pieces that have to fall into place}, but it happens, and the longest chain had over 30 patients/donors!) I think initially, the team would like to find a type O donor if possible.
The transplant team takes great care to ensure the safety and longevity of the donor, and have a rigorous screening process to protect the donors. My brother and my sister immediately volunteered to get tested. They are both fine, but for various reasons, they won’t be able to donate. As much as I would gladly accept one of their kidneys, I’m grateful that the donor team was looking out for their best interests, and had exacting standards to meet. But, it is a serious commitment on the part of a donor. They will not let you donate if it will affect your longevity. (Your remaining kidney will actually “ramp up” its filtering to compensate for the missing kidney.) Additionally, it is a surgery, and there would be a recovery time of about 4-6 weeks, and a no-driving restriction for about 2-3 weeks, in addition to a 2-3 day hospital stay.
One resource to learn more about being a donor would be here : www.ExploreTransplant.org and the Beaumont Royal Oak Transplant team that I’m working with is here : https://tinyurl.com/yarnoze4 (this is a shortened URL for the Beaumont link) with a phone number of : 800-253-5592, Option 4. There is a questionnaire for potential donors, and various links for information, as well as a donor booklet that is required for you to read prior to filling out the questionnaire. I can try to answer any questions about this, but if you want to ask more privately to the team, use those links/numbers.
The decision to be a donor is a very personal one, and there are many factors to consider. I’m grateful for all the support and encouragement I’ve received. I’m grateful for any potential donor that might step forward to be considered. But, I will make no judgement over anyone that does NOT wish to come forward to donate. I’m grateful enough if people can share this message with potential donors or other advocates.
The universe, in its completely uncaring nature, decided to throw this at me during a pandemic, which complicates everything. But, I’ve been able to gather a wonderful collection of humans around me that are very gracious in their support – and words fail me as I type this (getting very dusty in here right now).
[At the moment, though my kidney function is very low, I’m reasonably stable and don’t yet need to have dialysis. But, I think that is in my near future, so I’m grateful that dialysis will be an option (a “bridge to the transplant”) when I need it.]
I have plenty of stuff to do here on this third rock from the sun, and am only halfway through Clone Wars (to get ready for Mandalorian) .. I’m not planning on going anywhere!
Thank you for any support or passing along of this information! Please share this anywhere you think it might help, and don’t hesitate to contact me with any questions!
Dr. Scott Schneider (sschneide@ltu.edu cell: 248-880-7177)
Of the 68 visitors to this page, you are the most recent! Thanks!!
