one of one-plus

Last week I took a shot at regaling you with tales of spending a week in the hospital and coming home alone. Naturally the perfect followup to that would be (to take a shot at) regaling you with tales of spending that recovery week not quite alone. Yes, even though I made a big thing out of how hard it is to not be well and be alone, versus when you are a one of two, I wasn’t completely alone in my recovery week. Not quite not alone but definitely not alone.

I closed last week’s post with, “When one of two is missing, the void seems bigger than when one of one is gone. And when one of one returns, the welcome home is much less welcoming. I can probably write an entire post on that. Maybe I will someday.” Never to not pick up such a tempting gauntlet as that, I will accept my own challenge. Sort of.

First, to those who had asked, I am fine and anticipate I will grow even finer as the days march by. I made it through the first week out of the hospital without returning to the hospital and that’s not something I can say about all of my discharges. Fortunately, I had a lot of help. As I said, I was not completely alone last week. I had help. Not “one of two” help, maybe more like “one of one-plus.” Between my daughter and my sisters for some physical assistances and a handful of friends for mental, emotional, and at times even comical support, the week moved along faster than I figured it would.

It is a big boost when someone you typically connect with primarily through text messages makes time in her schedule to call at least once a day every day to check on how things are going. It is as big an aid to recovery as having someone stop in to do the heavy lifting portions of the never-ending household chores that one with a newly prescribed 5 pound lifting limit and prohibitions against bending and stretching cannot take on alone. Yes, it is not a secret that physical recovery does not happen, or happens very slowly, without mental and emotional recovery tagging along.

I recall that first discharge from so many years ago, the physical helpers were there but there was a distinct void where someone, some ones, or anyone who might call just to see how things were going could have been. What was most disheartening was that there should have been at least one someone, but the call that came rather than a message of support was of the “I didn’t sign up to be a nursemaid” type. And with it a rather rapid descent from the stratospheric one of two to the heartbreaking loneliness of a one of less than one.

Fortunately, over the years I discovered a handful of contenders willing to be part of my one of one-plus entourage. True, the other one of a one of one-plus won’t be there to help you into bed, or to wake you when your due for medication or a dressing change, or tell you, “Sit still! I’m perfectly capable of making us breakfast,” as I imagine the other one of one of two would, somehow it is easy to imagine they would if things might had been just a bit different. And a one of one-plus will always be there on the other end of a phone call or text message, or email, or even a card or letter when you least expect it, or at least when you least are thinking about it for a while and add to your emotional recovery.

The best one of one-pluses are those who take their role seriously, as seriously as a one of two partner would. Maybe even more. Let’s face it, a lot of one of two partnerships exist because of some compromise or even a little unspoken quid pro quo. Sometimes a lot of quid pro quo. A one of one-plus is more selfless and unconditional. There is nothing you are getting back for your love and concern except maybe someone’s love and concern. A friend of mine, a one of one-plus with me, said “Being one of one can be isolating. Being one of two is ideal. But being one of many makes a community. We all need each other and do better when we feel cared for and important to somebody.” I suppose if we put all my one of one-pluses together we can make a “one of many” community. (Now that might make for an interesting blog too. In fact, that sounds like just the thing we’d post at the ROAMcare blog, Uplift!  Maybe you should make a note in your calendar to check that out this Wednesday.)


Speaking of Uplift! In the latest post we wondered, if “In case” added to your declaration is a positive account of caution and a potential response to a situation, is “just in case” just a poor excuse for a poor choice? Read it here to see what we had to say about that.


Hey, here’s an extra thought if you know someone who could use a hand and you’re feeling one-plus-like. Dinners that can be heated and eaten are great but think outside the oven. Rides to labs or tests are great stress relievers and don’t often run unpredictably late like a doctor appointment may. And back in the food arena, if your someone is a big breakfast eater, a prepared morning meal is just as appreciated, if not more than an evening meal. A French toast casserole, or stack of frozen waffles makes a nice change for someone who may be too unsteady in the morning even to work a bowl of microwave oatmeal. My best meal “gift” ever was a bag of frozen breakfast burritos my daughter worked up. A few minutes in the microwave and a cup of yogurt with fresh fruit and I had a breakfast that kept me well through lunch and the only thing I needed to work was a spoon.


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one of one

The chances are very good that while you were reading last week’s post, I was in the hospital. I don’t know how I ever decided on the time, but for years I have had the posts scheduled to published between 4 and 4:30 prevailing eastern time Monday mornings. Last Monday at 7:30 in the morning I was in route to the emergency room. I’d say don’t worry, it’s nothing serious, but seriously, can you ever say that with a straight face with an emergency room visit a part of the equation. But I can say, don’t worry. I’ve been down that road before.

There are parts of me that pretty much resemble a high school science experiment and to be perfectly honest, work just about as well. Things leak, things creak, sometimes things need a better tightening than the local mechanic, er the office physician can provide. So please don’t worry. In fact, that’s kind of the whole point to this post.

I have a feeling I’ve said sometime before that I had never been inside a hospital other than to work or to visit someone in one for the first 55 years of my life. No broken bones, no falling off bikes, no unexpected allergic reactions. Once I did take a nasty fall while rappelling but that was dealt with in a first aid tent so I’m not going to count that. No, that first part, probably first and second parts of my life, involved minimal medical management. But man did I make up for it since. And all that time, I’ve done it without a significant or even insignificant other at home, rolling bandages, and preparing for my return with anxious anticipation, overflowing TLC, and bowlsful of chicken soup. Nope. Just me.

Oh, please don’t mistake that for self-pity nor misunderstand that nobody is in some home, some where worrying a tad that I return to my home. And they will even stop by with chicken soup or its 21st century equivalent. But there will not be that person who when she might step out into the porch for the day’s mail, holler back to the neighbor “No, he’s not on a trip but was admitted to the hospital a couple days ago. How nice of you to notice and ask. I’ll be sure to tell him you did.”

Kind of funny isn’t it.  An odd thing to think about. But it’s been thought before. I had one hospitalization that went on for several weeks. At the time, it wasn’t unusual for me to be away for some days at a time for something work related. No one might have even realized I wasn’t at a conference in Las Vegas until the priest on the second Sunday I was in the hospital included me when he asked for prayers for our sick parishioners. I know no one would have noticed because that’s exactly what my next-door neighbors said when they popped in to visit that Sunday afternoon.

When one of two is missing, the void seems bigger than when one of one is gone. And when one of one returns, the welcome home is much less welcoming. I can probably write an entire post on that. Maybe I will someday. Not today. Today I’m going to try to get to sleep a little earlier than usual. Yesterday was my first full day home. Hopefully whenever you get around to reading this, I am still home.


Gene Kranz was the director of NASA mission operations and is noted for the modern mantra, failure is not an option. Or is it? We say what we think in the latest Uplift!


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Best Laid Plans and All That

Ah, the best laid plans of men and morons. Get your vaccines, get your booster, have your supply of masks for the rare moments when you allow yourself time out of your own hovel, do NOT plan on entertaining a crowd bigger than maybe two. Still, you get covid.

Still, I got covid. And I got it bad. Yes that’s why it’s been over a month since you’ve seen a post from me, I got it bad, bad. Now before we continue, who ARE these people who get covid and are back at work in 2 days, smiling and grinning and passing ridiculous legislation like they had nothing more serious than a nose job adjustment. And just who ARE their second cousins who can’t go into the office but will work from home. I am not kidding when I tell you that I couldn’t remember how to turn on my computer one morning. Maybe it is because I have so many serious health issues to start, including being immunocompromised, that my body figured anything nonessential was really not essential!

Let me take you through what really happens when you breathe masklessly in the same space as some poor soul like me, from the first “hmm, I’m tired,” through hospitalization and a variety of transfers, to making follow-up appointments with all the medical community where more morons lurk in elevators and parking lots “defending their freedom” from the inhumanity of 40 square inches of material across their faces.

For weeks I’ve been trying to figure out how I became infected. I do as much on line, by delivery, or curbside pickup as I possible can for my shopping. Although sometimes it just isn’t possible and a quick trip into a store to the counter and back to the car is called for.  I wish I could but I can’t say I have ever, ever, ever been anywhere where masking was 100% (and/or 100% properly) executed. So since the beginning of the year there have been a place or two where I could have been exposed. I really should have known better and continued to Zoom or stream religious services but I went into the building where loving neighbors as themselves seemed to be a foreign concept and after two weeks I redirected myself to on-line religion again. That was also 1 week before the first sign of something in the body not functioning the way the anatomy books indicated.

The date was January 8, a Saturday, and a day I had spent most of it putting away Christmas decorations. I attributed the new cough to the dust and detritus generated from wrapping and packing. January 9, I woke to chills and shaking and a fever that would have made a dandy show and tell for an infectious diseases lecture.  A Sunday trip to the local urgent care center resulted in confirmation that my blood pressure and pulse were up, my coordination was down, that was a dandy looking sweater I was wearing and yes, you could fry an egg on my forehead. A swab was sent on mission up one nostril and out the other (actually it just felt that way but both nostrils were attacked from below), and I was given instructions to drink “literally gallons of water,” and check the electronic chart for results the following morning. January 10, shortly after the pair of acetaminophen tablets seemed to be kicking in, the phone beeped its “Message from My Chart” beep and I fumbled my way through the facial recognition security (apparently I looked enough like me even that early in the morning) to get to the results  – positive.  Crap. Calls to everybody in my family who may have been around me from January 1 (seemed like a good date to pick to me and all 3 other people (I told you you I don’t entertain big crowds!) agreed) and to my primary care doctor, who as fate would have, was recovering from his own battle with SARS-COV-2. Thanks to my weakened immune system, he managed to get me scheduled for a monoclonal antibody infusion, but unfortunately scheduled 3 days in the future. That’s okay, it’s the stuff politicians and former presidents got, I could wait.

Not Vaccinated SectionOn Thursday January 13, I drove myself across town to one of 3 clinics administering the more precious than gold elixir. About an hour later I actually felt better. The fever was low-grade rather than raging, the shaking and chills were reduced to a mild tremor, the squeezing headache relented, and the sore throat, eyes, sinuses, nose, in short everything north of the neck stopped hurting.  I figure in 2 days I’ll probably be breathing again. Ha!

For the next 18 days I woke each morning to take my blood pressure, pulse, temperature, and oxygen levels, always the same (good, good, low grade, good) then I pretended I was Howard Hughes, sitting alone in a darkened room watching movies, one after another. As long as I sat I was comfortable. Whenever I moved, I would become physically tired. Doing two things at once like standing and cooking, took as much out of me as a quick 5k around the neighborhood. I could do my own cooking but I often had to rest between cooking and eating, in the process, discovering that lukewarm eggs really do taste as nasty as reported even though I never had reason to question it before. I got neither better nor worse, but never “bad.”

That changed on Sunday January 30, my 3 week anniversary of the nostril invasion and subsequent positive test result. I woke up to my usual unchanging vital signs, made my breakfast, rested, ate my breakfast, rested, cleaned from breakfast, rested, then considered a nap. And for a few hours it was yet another day in the endless line of days that I was told would be always tiring and be slow to recover from. And then it hit me. Exhaustion like I’d never felt it. I could not walk across the room, the 14 foot room, without stopping partway and resting. Deep breathing was absolutely impossible, as was standing up straight. Shallow breathing was almost as impossible. In fact, breathing suddenly seemed a nee and elusive concept nit yet learned. Fortunately, my sisters had just stopped by to see how things were going and we commissioned their car as a civilian ambulance. The question was asked which hospital and answered without my input, one about 15 minutes north. No, I gasped, turn here. A mere 2 miles away was a new neighborhood hospital with full ER services.

I’ll spare you the details of the hospitalization, the tests the scans, the multiple IV attempts before hitting vein, the ultimate transfer to “the big hospital” because the current site couldn’t comfortably deal with the multiple problems I have and felt it was safer for me there. More test, more scans, more questions (yes I do know I have only one kidney, duh), more doctors!

To make a long story short (yes, yes, I know it’s much too late for that), all the days in and tests reviewed indicate my oxygen is fine and my lungs quite clear, I just cant breathe. With lots of exercise and home based therapy, I can strengthen the muscles that work the lungs which is where the virus decided to attack me and be back to my baseline by summer, maybe? (Everybody else gets pneumonia, I have to be different!)

So I leave you with this. If you’re going out, please wear your masks. Maybe you feel they infringe on your right to who knows what and who really cares, but when you don’t wear it, you are infringing on my right to live. Sorry but – I win. Wear your f-ing mask!

A serious send off – seriously, wear your mask, wash your hands, don’t breathe my air. If we were in the midst of some sort of global automotive crisis you know  darn well you wouldn’t take mechanical advice from (shudder) politicians, so don’t get your medical advice from your mechanic. If you’re really feeling the need to protest, don’t get vaccinated and put only yourself at risk for a cruel and unusual death. Leave the innocent bystanders standing please.

Counting Chickens

As I write this, a few minutes before 4:00pm on May 28, it is a year to the minute that I was getting home from what I hoped would be my last dialysis session. In 12 hours, I would be waking up for a ride to the hospital to have a kidney transplanted into me from my sister. For months after the evaluation process identified her as a candidate and a date was set, the staff at the dialysis clinic would say to me, “it won’t be long now,” or “are you counting the days yet,” or similar words of what they certainly thought were ones of encouragement. I met each one with “I’m not counting any chickens” That last day I think I said, “thanks, you’ve all been nice enough to me you but I hope I never see you again.”

We’ve now made it to a minute after 4:00pm on May 28 and it is juat about a year to the minute that the phone rang with a call from the transplant surgeon’s office. “Doctor wants you to come in this evening so she can run a new CT scan and do as much site review as possible before you get to surgery.” Because of previous abdominal surgeries my insides did not conform to the textbook illustrations budding surgeons poured over in their early med school days. They didn’t even conform to the messy real life version most people walk around with that present to surgeons many years past the book learning phase. Even though I had been scanned and rayed and imaged from every imaginable angle (and 1 of 2 unimaginable) I saw her point. I called my chauffeur who doubles as may daughter on her days off and asked one of them to take me to the hospital. But I still wasn’t going to start counting any chickens.

You’ve read the tale. The operation was a success but the implant didn’t take. Nineteen days later I was finally discharged with instructions to resume dialysis. 

I never felt right at dialysis after that. Not mentally or emotionally not right but physically not right. In the best of times, and there are best of times in dialysis they just aren’t very good, one doesn’t feel right. It’s hard in the body and although it leaves you with sparkling clean blood (I used to refer to the dialysis unit as a bloodromat) it also leaves you with headaches, dizziness, tingking or numb extremities, a little bit of nausea, a lot of muscle cramps, and the need to sleep for 48 hours when you get to do it all over again. But this “not good” feeling was different. All of the above multiplied plus more and others and few etcetera. 

Discussions with the doctor led to new and different tests which led to yet another tale. The transplant didn’t work but I was getting better in spite of it and became one of the few who have successfully been discharge from chronic dialysis.

So, now on the eve of what would be my first kidneyversary celebrating a new normal I am celebrating 4 months of being relatively normally normal.

I still have blood drawn every couple of weeks and see the doctor every couple of months. I still watch my diet, my fluid intake, and my other medications. I still pray every morning and every night. But I don’t still go to dialysis. 

And I still don’t count chickens!

One other thing, my sister is still doing well also. Thanks Sis!

 

Lighten Up! (Hospital Style)

It’s high time to lighten things up around here. Just because I am still, yes still(!) in the hospital doesn’t mean there aren’t things to poke fun at. In fact, much of what goes on around here is worth poking fun at.

So far, nobody woke me to offer me a sleeping pill. Yes it has been done. However I have had the same person offer me a laxative literally (seriously I’m going to use literally as it literally is intended) right after helping me back from the bathroom with … well, you figure it out but Adrian Cronauer would have credited it to a cup of strong cappuccino.

Diets are an interesting phenomenon in hospitals particularly when one has abdominal surgery. You start out with nothing but sips of water. You progress through clear liquids to full liquids to soft and then regular food. All the while each step gets modified to meet your specific health needs like a cardiac or renal or diabetic diet. I have yet to figure out why. When you’re on clear liquids you barely have the strength to left spoon to mouth so that goes right back barely touched. By the time you can eat solid food you’re chowing down on the sandwiches and cookies your family is smuggling past the nurses station and you’re too full to bother with the hospital’s offerings. And their food always tastes bad. You know it’s bad but if you had to describe what is bad about it you find those words have yet to be invented. I’m on Day 17 of this hospitalization so I’ve had some time to think about this. I’ve decided it’s the taste equivalent of when you walk into an elevator and you know somebody was there wearing a cologne more suited to a Turkish whorehouse than anywhere else on earth. So I suspect.

20190610_185905-2You recall my rants regarding remote controls. Too many buttons, too little function! Back in the 70s (yes, I really am that old) nurse call bells were pretty much that. In fact, the first hospital I worked at kept actual bells to distribute to patients in the event of a power failure. Today’s call bell alert mechanisms control lights, television power channel and volume, bed position, sleeping alarms, and might actually summon assistance by way of a two-way radio communication with a disembodied voice from somewhere deep in the building. My particular remote control/Dick Tracy wrist radio gets a lot of abuse pulled across the room, dropped on the floor, and otherwise tortured. This is an absolute true story. All of them are but you are going to say “Oh come on now!” when you read this so just keep in mind, this is an absolute true story. Among other things, my call button controls the room light (button A), controls a reading lamp (button B), controls the TV (TV), and summons assistance (stick figure of some bald dude). I was ready to call it another unsuccessful day and pressed button B to turn the reading lamp off but instead the main room light came on. Checking that I was indeed pressing the right button I tried again and the main light went off. Then I pushed button A because why not and the TV came on. Pressing button A a second time yielded no results so I pressed the stick figure button to report my equipment malfunction but instead of lighting up indicating a call had been initiated, the TV went off and the reading lamp came on. At this point I was back to having the reading lamp on and everything else off. I figured I could fall asleep under those circumstances and left well enough alone. Eventually someone would be in to check my blood pressure and I would report the broken control then.

I could go on with other curiosities like footwear particularly among the anesthesia staff, status boards, and isolation procedures but I might need some lighter topics next week too.

By the way, if I follow you and you haven’t heard a peep from me and are concerned, some sites I can reach through the hospital guest WiFi, some I cannot, and some change day to day. I am better and just waiting for some labs to stabilizer before I can be set free on the world again. I’ll catch up with my required reading then.

We Tried

I wish I had a happier update to pass along but last Thursday we lost the kidney. We knew we were entering unfriendly waters, weren’t certain it was going to take and had the best team we could want, but the transplant was not meant to be. They all aren’t. Even something with a 97% chance of happening flawlessly has a 3% shot of not working at all. I suppose you could say the long shot came in. I can tell you what happened but people are still working on the why to go with it.

On the first implant, the donor kidney almost immediately picked up color indicating blood was flowing through it. By the following morning blood flow could not be detected and an ultrasound indicated a possible clot in the artery leading to new to me kidney. The decision was made to go back inside me, remove the kidney, clean things up, then return it. This is where we were at the most recent post.

For the next two days, various imaging tests indicated blood flow to be good, marginal, or inadequate – not consistently nor in that order any given time returning any of those results. But laboratory tests indicated an improved renal function. It raised questions. It can happen, in fact it’s not unusual that flow and function decrease or diverge in the first week after transplant. After a week though, results continued to show too much discrepancy between lab function and imaging. After much consultation and while considering risks versus benefits it was decided the only conclusive answer would be achieved by actually exploring the area and physically examining the kidney.

It was found that blood was flowing into the kidney but not through the kidney. The small veins inside the kidney were again clotted, turning the kidney into an anatomical water balloon. The danger of rupture resulting in peritonitis was too great and the kidney had to be removed.

Now that kidney is being examined by pathologists to try to determine the cause. Was there a defect in the kidney making it prone to clot, is there an undiscovered defect in my blood making it prone to clot, or was there a combination of immeasurable or unknown factors resulting in the clots.

The disappointment is huge but the potential is great. If there is something organically “wrong” with that kidney these events might have happened to it while it still resided in my sister potentially rupturing in her and causing her all sorts of untold problems. If there is a defect in my blood it could be that a potential life threatening condition might now be identified and treated. If there is a defect caused by the combination of my blood and her kidney it could that mean future donor and transplant candidates may undergo even more rigorous screening for compatibility.

Some consequences are more immediate. I continue to be hospitalized while I recover from these three operations. As an impatient I’ve received dialysis and my response here will aid in determining if upon discharge I return to dialysis at my pre-surgical order and schedule. My sister will continue her post-operative tests and appointments. I may not have been a successful recipient of her kidney but she was a quite successful donor and will now forever bear the scar of her sacrifice.

So the journey does not yet end. We’ve merely come to the inevitable fork in the road. It might be too early to tell which path to take or it might mean neither path is best but a whole new trail must be blazed. Something good will come from this. It might not be the result that we wanted but “good” and “want” are not guaranteed to overlap. Stay tuned.


Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)
Spare Part (May 22, 2019)

Close But No Cigar -Yet (June 2, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

Close But No Cigar – Yet

If things went according to plan this should be Day 5 for me as an official kidney transplant recipient. Actually I don’t know if that’s an official designation. I don’t believe it comes with a membership card or even a secret handshake although it is an ever growing cohort.

I started with that “If things went according to plan” because we have somewhat deviated from that plan. Sometimes things are going to go as well as a textbook procedure, maybe with a minor glitch creating a minor challenge that makes a learning opportunity for everyone. Then there are the things that happen to me.

Sometime last Wednesday a kidney was removed from my donor angel, walked into the operating room next door to that activity, and placed into my body. It was a moment unlike any other. Literally. The organ was a sewn into place, arteries and veins connected, clamps opened, “dirty” blood flowed in and “clean” blood flowed out one way to be recirculation while waste flowed out as urine to its ultimate elimination. It was working! And it continued to work for about 18 hours. Then the reason consent forms came to be came to be realized.

Without getting into the many reasons that could have caused it to happen, partly because specialists are still trying to determine all of the reasons that might have caused it to happen, the blood stopped flowing. I immediately was prepared to return to the operating room where the kidney was removed, arteries and vessels cleaned of some newly formed blood clots, the kidney bathed in an anticoagulant solution, new ties and connections again attached the new kidney to my old body, and then the cleaning process reestablished although at a less than optimal rate.

The kidney was saved, the kidney was working, but to exactly what degree and for how long is still yet to be determined.

As I am writing this samples of my blood are being sent off for examination into why it is clotting at a rate the would not allow the process to be without the corresponding infusion of anticoagulants. Perhaps in another week I can share the reason or reasons and some resolution for it. Until then I can tell you the good things that have happened.

The earth angel who parted with one of her kidneys for me is well and at home already establishing a new normal that remarkably resembles her old normal and doing it much faster than expected, waiting anxiously and praying devoutly for me to to do likewise. Her former kidney is doing its job well enough that I for the first time in almost 3 years lived through a full week without once being attached to a dialysis machine! And we made the right choice of transplant centers where I have never seen such coordination of care and research happening to see that her kidney successfully transitions to being my kidney in its new forever home.

I am walking and eating and generally being a pest to the doctors asking for more freedom of motion, less dietary restrictions, and answers, please more answers. In general, if asked how I am feeling I am clearly feeling better and stronger than a week ago. But I also know I am not yet out of the woods or out of the the weeds or wherever one gets out of when things are not working at their tip-top-pi-est.

I also feel closer to the donor than I have for not just a week but for almost 57 years. That was how long ago the girl who shared her kidney with me was brought home by my parents and introduced to me as my new little sister. Like most siblings particularly a middle and a youngest, we spent many childhood years fighting for attention. Now we are fighting together and discovering even after all these years, new reasons to get our way. Only now finally a common way! Someday soon we will have our answers and we will get our way. How can I let her down?


Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)
Spare Part (May 22, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

Spare Parts

I’ve been terribly inconsistent posting but I have a very good reason for that. I’ve been making room for a new kidney!

In the last kidney update from a couple weeks ago I said I was starting the annual testing to remain on the transplant list. Just as I was starting those we got word that we had a live donor match! In fact we had two!!

Since you’ve come along this far on the journey, please join me for this step.

From some posts on a support group page I took it that multiple matches although not common are neither rare. I suppose there could be two absolutely identical donor candidates. More common is the possibility of multiple “perfect marches” with cadaver donors. That would be because with a cadaverous donation only the organ is considered. With live donors, although multiple kidneys might match they are attached to people still using them and their lives rarely perfectly match. Considerations for age, family obligations, location, post-op support, and probabilities of future health issues not uncovered in the donor evaluation must be made. If there still is no decision then they have decide how they will decide. I suppose in the extreme, say if the potential donors are identical twins, they may go as far as a flip of a coin or rock paper scissors. Our donors aren’t twins and they were able to make a determination without resorting to playground games. They got together, made their decision, and notified the hospital.

That decided, pre-op testing began. For the recipient this is the same as the annual testing with some additional lab studies. For the donor, pre-op tests include only a chest x-ray, EKG, a complete metabolic panel lab study, and a complete blood count (CBC). All these can be done within a 30 day window leading up to surgery except for a “last minute” final blood and tissue typing. Last minute would be within 10 days or so of the tentative transplant date.

At this point that date indeed is still tentative. All these tests and studies will be reviewed again by the transplant team. Only after an affirmative from that review is the date finalized. Even then the surgery can be “unscheduled” by any member of the team, the recipient, or the donor.

The surgeries themselves aren’t difficult procedures considering the lifesaving result. The donor operation begins up to an hour before the recipient. In our transplant center this a robotic procedure controlled by two transplant surgeons in attendance. Long before this the decision was made which kidney will be removed. After its removal the renal arteries and veins are shunted to the remaining kidney, the unused ureter is tied off, and the donor goes to recovery.

KidneyWhile the donor’s surgeons are finishing their procedure the recipient’s receiving location is prepared by a second surgical team. The recipient surgery is performed through an open incision and two attending transplant surgeons, in my case one of them also a urological surgeon, will operate. Unless there is a medically necessary reason, the recipient’s native kidneys are not removed. The donated kidney will be placed in an abdominal lower quadrant, usually the right although in my case because of previous surgeries and that space already occupied, it will be placed in the left lower quadrant. The renal vessels and ureter from the native kidneys are transpositioned and the recipient is closed up and sent off to recover.

Typically the donor remains in the hospital 1 to 3 days, often ambulatory the same day of surgery. The recipient’s stay is usually 3 to 6 days, hopefully walking and building up an appetite on post-op day 1. When they go home there are lots of other things that have to happen for both to live healthy, full lives. After all, that is the point of that.

When we get to that point I’ll be sure to keep you up to date in just as excruciating detail as you have become used to. After all, that’s the point of this.

Oh, when will all that be? Well… our presumptive surgery date is next week! I’ll have my last pre-transplant dialysis on Tuesday then eat ravenously because I am ordered nothing by mouth after midnight, every surgery’s first order.

Then, if all goes well I’ll get a new, slightly used spare part. Stay tuned!

——

Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)
Caution: Rough Road Ahead (Nov. 19, 2018)
And The Wait Goes On (Jan. 24, 2019)
A Worldbeater of a Story (March 14, 2019)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)
Make Mine Rare. Or Not (Feb. 28, 2019)
Parts is Parts (May 6, 2019)

 

 

What I Did On My Lost Day

I’m a day late. I’ve been a dollar short for years so that’s not news but the lost day is something I really tried to avoid. I knew yesterday was going to be a potential for not posting so I was going to get something written and scheduled on Wednesday so there would still be some words for you on Thursday. I’m still not so sure why but I felt I should. Unfortunately there was a power outage here Wednesday evening. That’s pretty rare for these parts and I took it as an omen that what I was going to post wasn’t worth the time or energy. I hadn’t given it a thought that my energy provider would have agreed with me so dramatically. Anyway, there would probably still be time on Thursday even considering what I had on tap for me.

Yesterday I had a simple, quick procedure at the hospital. Nothing medical is ever simple or quick but those words are used relative to what could have been. Still it wasn’t quite the whole day lost and I should have been able to write but for a couple issues.

The procedure was scheduled for 12:30 and took about 25 minutes. That should have left a great deal of the day except it didn’t. Here was the actual schedule starting Wednesday evening.

Wednesday
6:30pm – dinner
8:00 – consider a hot snack since I won’t be able to eat after midnight.
8:02 – electricity goes out
8:03 – stub toe in kitchen trying to make peanut butter sandwich
8:04 – apologize to neighbor for language
8:10 – find chair in living room, sit
8:11 – boredom sets in
8:45- give up hope of snack, go to bed

Thursday
12:35am – startled awake by lights, tv, furnace, abruptly coming back on
3:05 – return to sleep
8:00 – wake up, throw away coffee made before remembering restriction not allowing food or drink after midnight
8:40 – finally settle on appropriate “loose clothing” per instructions
9:15 – ride to hospital arrives
9:35 – clean up coffee cup and plate from coffee and danish ride has while waiting time to leave for hospital
9:45 – leave for hospital
10:25 – arrive at hoping outpatient registration
10:30 – assigned to room, put in silly hospital gown, stuck for IV, labs drawn
10:45 – wait
11:44 – transported to procedure room
11:45 – wait
12:20pm  – sedated
12:25 procedure (yay!)
1:00 – return to room for recovery
1:02 – first food since Wednesday evening (graham crackers and ginger ale (yum))

BOC1

1:11 – enjoy remaining sedation
2:00 – discharged
2:45 – stopped at pharmacy for prescription
2:46 – wait
3:05 – pick up prescription
3:15 – arrive home
3:20 – nap while daughter makes dinner
4:30 – dinner
5:00 – turn TV on for evening news
5:01 – fall asleep in front of TV
10:30 – wake up and go to sleep

Friday
8:57am – Wake up
9:00 – wonder what I missed for the last day

And that’s why you’re getting Thursday’s post now. This is it. Have a good day.

 

 

 

Caution: Rough Road Ahead

I don’t think I’ve ever started a post apologizing for not posting. As much as I find myself an interesting fellow I can’t imagine any of you (if there are any of you still reading) working yourself into a lather because I’ve deprived you of my drivel these many days. But that’s just it. It’s been many days. Many more than I’ve ever gone without posting unless I was unconscious in a hospital bed. That’s just plain rude so for that I apologize.

Technically though, I have been unconscious in a hospital bed but just for a couple of hours. And I’ve been awake on a hospital bed a few days but not any of them in a row. Let me start in the middle for you and maybe that will clear things up.

When we last left our kidney transplant journey there were potential donors being poked and prodded, tested and vetted. They still are but all are nearing their finish lines. Will any be found as able as they are willing? The best I can say is we’ll see.

Until then, dialysis continues to be the means by which my own, slightly overworked and underappreciated kidneys are given a hand doing what they used to do best. Smoothly is generally not a term used to describe how dialysis goes. And it isn’t. Three weeks ago at an anything but routine dialysis session (routine also not descriptive of the dialysis procedure) my fistula imploded. You remember my fistula. It’s a pair of blood vessels surgically connected then anchored just below the skin so the dialysis nurse can shove two needles about the size of ball point pen cartridges into the arm to get the blood to and from the dialysis machine. Repeated stabbings cause scarring and plaque to build up inside the fistula and about every six months the surgeon runs a catheter through my arm by which he can clean things up in there. There is a fairly descriptive description (which is truly the best kind of description you can have) along with a couple truly disgusting pictures (and when describing a fistula, disgusting is truly the best description you can make) in a post from earlier this year.

Even with careful maintenance, sometimes the fistula just fails. That’s what happened to mine on November 6 which just happened to be the day after the last day I posted anything. Coincidence? Umm, not really. After repeated attempts to get a needle seated properly in the fistula with nothing but resistance to show for it, the nurse declared my arm a no dialysis zone. Unfortunately that did not give me carte blanche to swap the dialysis recliner with a seat at the Chinese restaurant down the road although lunch would have been welcome since I rushed through breakfast in order to participate in the American election process. Instead I was able to swap that chair for a bed at the hospital outpatient surgery area and await an emergency clearing of the fistula.

To make a long story short (I realize I’ve already exceeded that marker but it sounds good and I rarely get to use that as an opening line), after two more attempts with equally poor results, everyone admitted that the fistula was no longer a viable and a temporary catheter was tunneled into the right external jugular vein. It was during that procedure I had my previously noted period of unconsciousness in a hospital bed. (I get to be awake during the cleaning procedure, known as a fistulagram, and can actually watch the progress. It’s fascinating stuff but I’d still rather see a Bond, James Bond movie any day of the week.)

CVCThe unfortunate thing about dialysis catheters is that unlike say administration ports one might receive chemo through, they terminate outside the body and do so on a pair of tails. I’m posting a drawing so you can better see what I am trying to describe. (I could take a picture of my actual catheter but it’s not a selfie I’m anxious to snap and if you just type “dialysis catheter” into your favorite search engine you’ll get no end of new disgusting pictures to peruse at your leisure.) The part of the catheter inside floats and can actually be felt depending in where the tip resides at any particular moment. Reaching for anything higher than one’s shoulder, which given my modest height is anything off the counter, means moving the catheter around in there, also rather obviously noted. And because there is really no good way to anchor the outside tails, any movement or position change comes with a reminder that there is a part of you that isn’t really a part of you.

Fortunately I have the opportunity to be unconscious in a hospital bed again next Thursday when a new fistula will be fashioned into my other arm and I’ll get to have the catheter removed as soon as the new fistula completely heals and toughens enough for dialysis use. That shouldn’t be much after Ground Hog Day.

Just because I was having so much fun at the hospital, last Thursday when I was preparing to return to the world of blogging, I received a call from the dialysis center. The labs drawn earlier returned with a critically low calcium level endangering my health on any number of levels and I was instructed to return again to the hospital, this time to the emergency room where orders would be waiting to repeat the test and administer IV calcium if still returning a lower than normal level. It was, they did, and I got to recline on the sixth hospital bed (but conscious for five of them!) in 11 days.

And you thought getting on a transplant list was going to be boring between the listing and the planting.

Related Posts:

Transplant Journey Posts

First Steps (Feb. 15, 2018)
The Next Step (March 15, 2018)
The Journey Continues (April 16, 2018)
More Steps (May 31, 2018)
Step 4: The List (July 12, 2018)
Step 1 Again…The Donor Perspective (Sept 6, 2018)
And The Wait Goes On (Oct. 18, 2018)

Other Related Posts

Walk This Way…or That (March 9, 2017)
Looking Good (May 18, 2017)
Technical Resistance (May 25, 2017)
Those Who Should Know Better (July 24, 2017)
Cramming for Finals (May 3, 2018)