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!

 

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)

 

 

And The Wait Goes On

It’s time to bring you up to date with the kidney search. Okay, now you’re up to date.

Seriously, not much has happened since my last update other than the donor pool continues to march (swim?) (you know – pool, swim. okay, I’ll stop) toward completing all the required tests.

Actually, that is reportable. Three candidates are all moving along but are at different stages. One has completed all of the required steps and is waiting for the transplant group to review everything. One is awaiting a test date for the final step. One has one last test to complete before moving on to the final step.

So, everybody is through, near, or approaching the “final step.” What is it? It’s a CT Scan of the pelvic area including the kidneys and surrounding structure. If a candidate gets that far and nothing has derailed the process, the transplant surgeons will use the results of that scan to determine if the potential donated kidney exhibits any obvious defects that will disqualify the donor, which kidney would be harvested, and if the surgeon would need to consider any special procedures for retrieving the kidney.

So it’s been a while since they started the process and all are getting close to completing it without being disqualified. Yay! But it has been a long time, over five months, since that first phone interview. It’s not like in the movie where somebody holds up a sign at a hockey game that says “Need a kidney, Call me!” and the following scene they are being wheeled into the operating room.

What have I been doing while all this is going on? Other than my regular dialysis sessions, as I reported in my last Transplant Journey post I had a new fistula fashioned. Unfortunately, the central venous catheter that was placed so I could have dialysis until the fistula is healed, hopefully sometime next month, failed and I had to have a new one inserted the day after Christmas. I also hope to be able to report sometime next month that at least one potential donor has been cleared and we are awaiting a transplant date.

Until then we keep going on with our lives like nothing remarkable is going on. When you stop to think about it, other than I actually got basil to live indoors so far this winter, nothing remarkable has is going on. Yet.

——

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

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)

 

 

 

 

And The Wait Goes On

It’s been 6 months since I wrote the first post about the kidney transplant journey I’m on. Since then a lot of tests have been performed, a lot of blood and urine analyzed, a lot of x-rays and scans shot. Three months after that first post I reported I was officially placed in the list to await a transplant and if any willing and available volunteers could be evaluated for a potential live donor transplant.

Right now we’re still waiting for donor evaluations to be completed. It seems a long time but it really isn’t. Maybe to a chameleon but not to a human type person. Not even to a human type person waiting for a kidney transplant. With the possibility of waiting up to 5 years, 6 months is nothing, just 10% actually.

But it is long enough that now I’m thinking. Not good stuff all the time. Some of it is good. It’s amazing that of my 3 closest living relatives all three are willing to put themselves through this process. Then that gets me thinking would I for them? I’m sure. What about for a more distant relative…a cousin or cousin’s offspring,? How about a really, really close friend or child of a friend? What about a not so close friend? An acquaintance? A fellow church member or coworker? Stranger? Some people have said yes to all. Altruistically, I’d like to say sure I’d say yes to all. Realistically I know I wouldn’t. But where would the line be drawn? We know intentions are always better than actions but how close are the two when the reality is losing a major organ.

My driver’s license says “Yes I’m a donor. Feel free to use me. Um, but please wait till I’m gone and the only voice I have is this little plastic card.” Would I be willing to say “yes I’m a donor” while I can still speak those words? I suppose I already have. I mean, I’ve donated blood. Does that count? Does it count if I’m a true trypanophobe, which one has to get over if one is going to survive dialysis. (By the way, numbing creams and sprays really do help if you should be interested.) But donating blood isn’t like losing a body part. Blood grows back. Sort of. Kidneys don’t. No way.

Another thought that sporadically pops into my brain is a biblical question. God fearers learn that God not man determines life, thus the opposition to euthanasia and capital punishment. But the converse never seems to be debate. Churches are a main provider of support to transplant recipients even to the point of holding fundraisers to provide financial assistance. If God, not man determines life, is a transplant a means of man extending life? Or is it maintaining life to get the recipient to what would have been the natural ultimate endpoint?

I hope all these thoughts are just my mind doing its thing to fill the void left by the manic pace I underwent doing my evaluation and testing phase and it will quiet itself as it gets used to the waiting period. Maybe after it’s had its fill of playing ‘what if’ games it will settle down and think more productive thoughts like why shouldn’t Seattle get an NHL franchise.

—–

If you’d like to re-read all the posts in this thread as well as other related posts, I’ve put links to all of them on one page. Go here, to join the journey.

Related 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

Step 1 Again…The Donor Perspective

Now that I’ve been added to the kidney transplant waiting list the hard work begins. Finding a donor. On one hand you can sit around, stay healthy, make sure the transplant center has your current contact information, and just wait. On the other hand, you can try to find a living donor and go through all new sorts of levels of stress.

My immediate family has dwindled to a pair of sisters and a daughter. That would not be a good hand to hold in poker. But all three have expressed interest in donating and that closes the odds. They decided they would go through the donor evaluation process before we would ask if we should look to others. All three are currently in the process but at different stages. Two have been determined to be acceptable matches, one still awaits those results, and none is anywhere near completing the battery of tests donor candidates face.

You remember all the examinations and tests I had to go through? If you don’t, type “kidney transplant” in the site search bar and refresh your memory. We’ll wait. … Ok, ready? Well, as the saying goes, you ain’t seen nothing yet!

Like mine, their first appointment was a phone interview, a few basic questions designed to screen for obvious exclusions like diabetes, untreated high blood pressure, or various cancers. Also like mine, their first on site appointment meant lots of tubes of blood, a chest x-ray, an EKG, and face to face interviews with a nephrologist, surgeon, nurse, social worker, and transplant coordinator. Unlike mine, theirs also includes a donor advocate who is also a previous donor.

Like my first appointment at the hospital they left with a handful of appointments for follow up tests. Unlike mine, theirs were unlike mine. Where mine were targeted to make certain I could sustain the rigors of the operation and maintain the required follow up to prevent rejection, potential donors are tested to make as certain as possible that they are as healthy as possible and will be able to withstand the rigors of life with a single kidney.

Potential organ donors must be at least 18 and not more than 70 years old. That’s quite a range and obviously an 18 year old is going to be and is going to expect a different level of health than a 70 year old. My potential donors are just shy of 29 and a little over 67 years old. The one in between just turned 56. Three different stages of life, three different batteries of tests. Any single test can exclude the person or become the focus of a follow-up test. Surprisingly the youngest has the biggest list of baseline tests. As she explained it, the reviewing nephrologist said a 48 year old who is healthy today has a pretty good chance of still being healthy in 20 years. He has already passed the age when chronic illnesses would have taken hold even if they aren’t obviously obvious. Being healthy today means less to the 28 year old and how she will be at 68, 58, or even 48 so her testing will be more in depth and her expected results more stringent to mitigate missing sign of problems that might develop in the future.

In all cases they are going to get the best physical they’ve ever received. And if they pass all the physical exams they even get to have a go with a psychiatrist.

That’s just in case you thought you were nuts giving away part of your body.

——

If you’d like to re-read all the posts in this thread as well as other related posts, I’ve put links to all of them on one page. Go here, to join the journey.

Related 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)