Counting Chickens

May 28, 2020Michael Leave a comment

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!

Selfish Is…Deuxième Partie

March 30, 2020Michael 6 Comments

Was is just 4 days ago I posted a sort of breezy, lighthearted look at our new normal? (Surely you remember the new normal way to make a frozen cappuccino at home.) Unfortunately the weekend brought us back to lots of the old normal of name calling, blame laying, and old fashioned selfishness.

As more and more cities, counties, and states across the US and many other countries are falling under shelter in place orders, this from the letters to the editor section of the local paper is an example of what is unfortunately becoming a common response:

Once again, we are sacrificing the future of the young for the sake of the old. We could, at considerably less cost, attempt to keep the economy functioning at a high level, and safeguard seniors.

People over 70, and all those at high risk, regardless of age, should be banned, not encouraged, from leaving their homes. Resources should be made readily available to them: free delivery of groceries, medicines, even alcohol. Old people love “free.” They even exercised when Silver Sneakers was introduced, so I’m sure most would go along with this in an effort to save the country.*

More than other comments that follow every online article about the impact of the novel corona virus this letter struck me as a particularly insensitive read. I don’t know if I should preface this with “oddly enough” but oddly enough in Allegheny County, Pennsylvania, my home county and that of the letter writer, those over 65 testing positive with COVID-19 account for only 14% of the total, and the 25-49 age group made up 45% through Sunday, March 29. Perhaps the young adults also need some risk mitigation.

The writer’s cut-off age interested me. How did 70 become the magic number? Is that how old his or her parents are? Or grandparents? Is that the age the letter writer thinks is the average American’s life expectancy so anybody over that is in bonus time anyway? The average life expectancy in the U.S. is 78.7 years. Pennsylvania is a little less friendly to the elder crowd with an average life expectancy of 78.3 years. Perhaps the writer knows Allegheny County is stingier still with a 77.9 year expectancy. Still that is many years from 70. Maybe the writer is willing to sit at home for 7 years and 10 months now to get a head start on … on what I’m not exactly sure. (Life expectancy data generated by the Robert Wood Johnson Foundation.)

I have to admit I smiled a little at what the letter writer must think are the greatest concerns of our senior members of society – “grocery, medicine, even alcohol.” Is that what we are considering the new necessities of life? What, no free delivery of the TV Guide or People Magazine? Perhaps he or she should pick up a Bible. Whether in Matthew or Proverbs or Deuteronomy there are plenty of references to man not living by bread alone. Are the septuagenarians and older never to be allowed to worship as they wish? I suppose we dispense with their freedom of religion, not to mention that of speech and assembly. We will give them plenty of freedom of fear though. Oh, it’s supposed to be freedom FROM fear. My mistake. But hey, you gotta love that “even alcohol” tucked in at the end of the writers list of necessities. “With alcohol all things are possible” is the new battle cry, right after “wash your hands” or maybe “drink heavily and lick your hands.” I’m wondering if that might a window into our writer’s personal wish list of essential items he or she is having difficulty securing during our time of sheltering in place. The virtual happy hour is not so happy when you all you have left is the company and conversation.

But then the writer wants to take away company and conversation. He or she wants the oldest Americans “banned, not encouraged from leaving their homes.” Although the CDC is in fact encouraging seniors and those most vulnerable to remain indoors as much as possible, all health experts agree that isolation is itself a deterrent to healthy living. Valtorta and Hanratty* conclude “Lonely or isolated older adults are at greater risk for all-cause mortality,” and “The effect [of loneliness or isolation] is greater than that of other well-established risk factors for mortality such as physical inactivity and obesity, and comparable with cigarette smoking.” Clearly this is why among the list of permitted out of home activities (grocery shopping, medical appointments, and such) exercise is included.

The writer also seems a little confused about the cost of “free.” He or she singles out the Silver Sneakers program which is most often identified as a Medicare Advantage plan additional benefit available to Medicare recipients at age 65. I wonder if the writer realizes Medicare is not free. Even those plans on TV advertised as “zero premium” plans aren’t zero dollars. Those advertised premiums are in addition to the basic premium the government charges seniors. Medicare premium payments are withdrawn every month from the Social Security payment. In those odd instances when an individual receives Medicare but is not drawing Social Security benefits, a bill for direct payment is sent. (Something to keep in mind if Medicare for All mimics the current Medicare program. Free it isn’t.)

I’m most distressed over the assumption that we are “sacrificing the future of the young for the sake of the old.” What happened to “30 is the new 20,” “40 is the new 30,” “60 is the new 40?” There is no old, at least according the merchandisers there isn’t. Or wasn’t. “At what age do you begin to not care?” the cosmetics company asks. I suppose we should be asking, “at what age do you begin to not care about?” Considering that the 25 to 49 year olds are responsible for nearly half of the identified positive cases in the county should the under 18 group with less than 2% of all positive results be asking that largest group of infected individuals to be sequestered so the truly young’s future is not sacrificed for the sake of that of those older, even if those older aren’t what we might consider old? You know, geese and ganders and all that.

Over a spring weekend that saw nature act as normal bringing 17 tornadoes to the middle of America we need to stop following our own natural instincts and be better than normal. We need also to be nice. I could have been nicer myself and not used a few hundred words to disparage somebody’s Freedom of Speech. I’m sorry I wasn’t as nice as I want others to be. I’ll do my best not to let it happen again. Just not today.

* This is the complete, unedited letter, “Keep Seniors Home,” to the editor, Pittsburgh Post-Gazette, March 30, 2020.

**Valtorta N, Hanratty B. Loneliness, isolation and the health of older adults: do we need a new research agenda?. J R Soc Med. 2012;105(12):518–522. doi:10.1258/jrsm.2012.120128

And now for some good news…

March 23, 2020Michael 5 Comments

We interrupt today’s wailing and gnashing of teeth to bring you some good news. Naturally there is a lead in.

I was sitting around on Saturday thinking of all the places I’d most not want to be. This is unusual because for the most part I think of the places I’d most want to be. Usually it involves water, sand, palm trees, a boat, and female companionship. Specific female companionship if you must be that nosey (or nebby as we would say here). But last Saturday the thought was of the least desirable place, even with the right companionship. Not surprisingly, the place I’d least like to have been on Saturday would be a dialysis clinic.

Let’s think about that for a minute, then we will move on to the news. My county as many other cities, counties, states, and countries, now has a shelter in place order. The rule is pretty simple, don’t go out unless staying in endangers your life. And don’t go anywhere if you are experiencing symptoms. For the everyday ordinary dialysis patient (or more appropriately the every other day ordinary dialysis patient) it’s a no brainer that staying in is more hazardous than going to the clinic. And the everyday ordinary dialysis clinic staffer needs no fewer brain cells to also conclude that staying home endangers lives. But it’s the second part that is difficult to reconcile. No matter how you might be feeling, that trip is one of life sustainability. You can’t get somebody to pick it up for you while they are at the store.

I was in a good place to think the last place I’d want to be is at a dialysis clinic, the extreme dedication of the staff and their love of their mission to serve a population defining the area between a rock and a hard place notwithstanding. I was in a good place because I was in my own livingroom recliner rather than the one I spent so many Saturdays in at the clinic.

Yes, no dialysis. Okay, if you’ve been following along with me over the years you have a right to be confused. The last thing I wrote about my kidney health was that the transplant last summer did not take and I was back on dialysis. By the way, after still more scans and tests they are no closer at determining why the transplanted kidney clotted so rapidly and completely. But what they had noticed last fall was that my renal function lab tests were stabilizing. Then new questions arose. Everybody’s tests go up and down as function fluctuates, particularly in a patient like me whose renal dysfunction is induced by factors elsewhere in the body. But these were not fluctuating. They were improving. Steadily.

Adjustments in treatment were made, ultimately pared down to only 2 three hour treatments per week, fully half of what a weekly treatment total had been not too long ago. Weeks went by and weekly labs continued to return surprisingly encouraging results. On January 23 I left the nephrologist’s office a free man, well perhaps more a dialysis parolee ordered weekly outpatient lab test and every other week appointments with a call-in on the off weeks. Last week after nearly two month of that routine I was given a appointment three months in the future. I had stabilized! At least for the near future. At that point I thought comfortable enough to tell somebody other than my daughter and sisters and you guys get elected.

There is no good reason that kidney function should improve. It’s not unheard of but it is rarer than correctly picking all five numbers plus the white ball. I’m crediting my reprieve to Someone Up There showing a particular kindness to me and expending a miracle on that.

I feel particularly grateful, the break coming at a time when going to dialysis could be just as life threatening as life preserving, and pray that the patients and staff at clinics around the world will be safe and free of all complications, even those not COVID-19 related.

And I know now I have to figure out why me and what I am to do with this unexpected opportunity. Sitting around thinking of the places I’d rather not be is not it. I’ll keep you posted.

Now go wash your hands!

Don’t worry, be happy!

One more time, with feeling

March 12, 2020March 11, 2020Michael 2 Comments

I’ve been missing. Ever since the middle of last week I haven’t been all there. Or all here. Depends on your point of view I suppose. By Friday I ended up in the emergency room. Nothing horrible but with my history and the ever present compromised immune system, things that aren’t horrible for many others usually get a “go to the ER” response when I call the doctor to see if there are any open times in the day’s schedule that I might get squeezed into. So off to the ER I went and from there off to an inpatient unit were I relished in playing with all the buttons on the bed making it go up and down at the push of … well, a button.

For all the complaints health care takes in general, the system we’ve put together is pretty remarkable. I might be biased having worked in the system for longer than some lifetimes but I’m still impressed when I have to put on my patient hat. Or more appropriately, my patient gown. And yes, there is still nothing appropriate about those! Even an unbiased user will see more good done by American health providers than what the lawyers advertising on daytime television would have you think. I’ll put on my jade colored glasses and wager that as you are reading this there is a personal injury law firm somewhere in America readying suits claiming injury because some organization had a better test, a treatment, a vaccine, or all the above to combat covid-19 but put profits ahead of patients.

I can’t help with any of that. I do not have reassuring words for those concerned about the pandemic and have only prayers to offer for anyone who lost a love or has a family member or even him or herself suffering from a corona virus induced illness.

What I can offer is the personal observations of someone who has been chemically immunosuppressed for twenty years and for whom handwashing and social distancing is a way of life.

The chance of infection from any virus spread by touch will be minimized by minimizing touching where the virus may reside. Since you cannot see a virus assume anything you touch is contaminated. You have heard it ad infinitum but one more time won’t hurt. Wash your hands. Sure go ahead and sing happy birthday if you want but if you scrub them well and get between each finger and up to your wrist, you will take at least 20 seconds doing that. If you think you’ve washed them enough today, you haven’t. Do it again. If you can’t wash your hands, use a hand sanitizer with at least 60% alcohol. Then as soon as you can, wash them again with soap and water. Before you touch your face pretend you just ate a rack of barbecued ribs and have to take our your contacts.

When possible, stay out of crowds, wipe down surfaces like supermarket shopping carts with available cleaning wipes. Rooms you typically clean weekly, clean daily, things you typically clean seasonally clean weekly, anything you haven’t cleaned yet this year, clean! Opt to order from the menu rather than choosing the buffet, and there is no “five second rule.” If it’s not on a plate, don’t eat it!

Do not buy up all the masks at the store if any are even left. They will not help you not get the virus because it isn’t terribly active while airborne. By taking all the masks out of circulation for people who need them like recent organ transplant recipients or severely immunosuppressed individuals who need them as a matter of everyday precautions, scary novel viruses notwithstanding.

The best thing you can do if you aren’t feeling well is to stay home. This is not to say that everybody who doesn’t feel well is infected with the corona virus. Any illness is going to make you more susceptible to any other virus and you become a greater threat to anybody who is immunocompromised.

You have heard the symptoms are similar to flu symptoms. Flu symptoms are similar to bronchitis which is similar to pneumonia and so and so on. To help you determine that you don’t have covid-19 but may be looking at an oncoming cold I’ve put together a quickie comparison of the most common upper respiratory conditions.

Always consult your physician for diagnosis and appropriate treatment

Please remember this is not a diagnostic tool. If you are experiencing any of these symptoms call you doctor. If you’re lucky, you’ll get to see him or her in the office. If you aren’t, I’m in room 428.

Have a Heart, Please

February 13, 2020Michael 2 Comments

For such a short month with only 28 days, 29 this and every Presidential election year affording candidates an additional 24 hours to make fools of themselves, February is chock full of imposters, sequels, and me too holidays.

The most famous of non-holidays comes up next week but has been in full fledged celebration by car dealers, furniture stores, and discount houses for weeks now. Of course that is the never authorized, not recognized Presidents Day. Not being an official national holiday has not stopped business from taking advantage of consumers with “the biggest savings of the year” nor unions taking advantage of businesses with demands of yet another day off with pay. Of course the real holiday is Washington’s Birthday, never celebrated on his actual birthday because that would mean the loss of a 3 day weekend in most years. Bonus points for anybody who can identify Washington’s actual birthday without Google.

Looking for a reason to drink to excess and St. Patrick’s Day is a whole month away. Don’t fret or fear, Mardi Gras is here. What started out a few hundred years ago as a day of atonement and confession before Lent begins has morphed into “let’s eat everything in sight, have parades all day, drink all night, and show our boobs (pardon me) in exchange for a string of plastic beads.” Although the date varies because Ash Wednesday varies because Easter varies (you remember those days, right?), it most often is during February that merchants along Bourbon Street grease the poles outside their establishments to deter drunken idiots from trying to climb them.

For 134 years a peace loving furry woodland creature has been forecasting Spring’s arrival in a quaint Pennsylvania town. Of course this is commemorated in the most important day in the modern calendar, February 2, Groundhog Day. Sometime, details are sketchy exactly when, meteorologists began celebrating National Weatherman’s Day, now known of course as National Weatherperson’s Day on February 5. There’s logic to this they say. That is the birthday of John Jeffries, purportedly the first to record daily weather observations. That would be fine. Many professions recognize their pioneers. But this year I noticed on February 5 more news snippets decrying Punxsutawney Phil’s bold prediction of an early spring with repeated references to his predictions being accurate only 40% of the time. I did a little research on this. Phil is predicting for 6 weeks! According to National Weather Service data although a 7 day forecast is accurate 80% of the time, a 45 day forecast (about 6 weeks) has an accuracy rate of 40-50%. Hmmm. Methinks and all that jazz.

February is the month of love recognized as National Weddings Month (I would have thought June, no?), Creative Romance Month, and Affair to Remember Month (no clarification if that refers to the movie or a tryst), with International Flirting Week (for the not so serious?) tossed in on the month’s third week. But if those and the chocoholic’s dream date Valentine’s Day don’t fill your bill we can now add, and on this very day, Galentine’s Day. A day with origins similar to and about as real as Festivus and Friendsgiving which are now also apparently really real. And yes, the wanting to be next to be really real, Palentine’s Day is making inroads also. And here all these years I’ve been sitting at home alone without a romantic other half to celebrate. Gee, who would have thought one could make a holiday out of picking up the phone and asking a couple friends to go out for a drink. I would have have missed the boat and called that something like Thursday but then I’d have missed out on the greeting card conscesssions. (Oh yes you can. Check out your local card shop.)

One day in the month that should be a real deal holiday with cards, gifts, TV specials and days off for proper celebrations (with pay if you can swing it) is February 14, no, not the flowers and chocolate day, but National Organ Donor Day. Hop over to organdonor.gov to find out about how organ and tissue donation works and how to register to donate. Ah, the gift of giving your heart to someone. Now that’s true love. And nobody will throw beads at you.

Orange is the New Gold

November 4, 2019Michael Leave a comment

Sunday November 3 was the coldest Sunday since spring had sprung some 7 months earlier. And what was I getting ready for at 6:30 that morning? I was going for a walk, a Kidney Walk at of all places, the Pittsburgh Zoo.

This particular Sunday stroll was in support of the National Kidney Foundation, and organization in support of kidney disease education, treatment, and support. Like so many other disease focused organizations, money raised by the NKF goes to research for treatment and to find a cure for kidney disease. But it also provides direct assistance to those suffering the disease right now by assisting patients, families, and caregivers through resources including health checks and screenings, drug discount programs, and peer support made possible by fundraising activities.

Since I had begun chronic dialysis 3 years ago I recieved helped from the National Kidney Foundation but was never able to show my support for the organization. For the first time since my diagnosis my entire immediate family was able to register for the walk. The Kidney Walk does not carry an “entrance fee” nor a “suggested donation.” Your entry fee is your willingness to show support. Your donation is what you want to give or can raise from friends and family to support your personal cause. This year 2300 Pittsburgh walkers raised over $255,000 for those causes and I’m happy to report that my family was responsible for one of those thousands. Walkers included kidney transplant recipients, kidney donors, dialysis patients, care providers, and those many friends and family members on foot, in wheelchairs and strollers, with the help of canes and walkers, and even physically carried by others.

Unlike many others walking I was diagnosed without any of the classic risk factors or warning signs. The major risk factors for kidney disease are high blood pressure and diabetes; family history and obesity are also major contributors to that risk. Some of the common early warning signs include nausea and vomiting, irregular heartbeats, pain in the lower back, and shortness of breath. I had and still have none of those. My kidney disease is caused by complications from an autoimmune disease and was revealed through routine lab studies at regular checkups. Like many walkers I doubted I would ever find myself relying on dialysis for life or undergoing a kidney transplant. And most unfortunately like many other walkers I found myself both of those. Most fortunately though, my disease was discovered and I was able to join in the walk.

Orange was the color of the day at the zoo. Although kidney disease awareness is typically represented by a green ribbon, the National Kidney Foundation has adopted orange and black as the organization colors. Orange shirts, hoodies, caps, backpacks, and even baby strollers marched on a three mile trek among the animals at the Pittsburgh Zoo to bring awareness to chronic kidney disease, a disease that affects nearly 40 million American adults with another 200,000 diagnosed each year. Over 800,000 of those patient are in end stage renal failure requiring dialysis or a kidney transplant.

To us it doesn’t matter what color was worn. The money raised is the gold at the end of the rainbow.

It’s All Falling In Place Now

September 23, 2019September 22, 2019Michael Leave a comment

Listen up…today is the first day of fall, the onset of autumn, the equinox (at 3:52am at my longitude). It’s also the best day to get your flu shot. Yes this post is going to be more PSA than post but if you can’t trust me, who can you trust.

It’s time you get a little background so you have at least a little faith in me when I say GET YOUR FLU SHOT! And I’ve been doing this blog for almost 8 years so I guess you deserve some background information. (Really, eight years. Can you believe that? My first post was on Nov. 7 2011.) (woah). November also marks my 40th year as a licensed pharmacist (Nov. 12 1979). (double woah) Of those 40 years I spent 32 of them working in hospitals and four of them I taught undergraduates at college of pharmacy and administered continuing education courses for registered pharmacists.Then last 4 I’ve been living the Life of Riley and let me tell you, Riley really doesn’t live a high life.

But I still have my license and keep up with my annual education requirements so I think I can still speak about drugs pretty well. And when that drug is the flu vaccine I can tell right now who should NOT legitimately get the annual flu shot. Nobody! Okay, as the people who give away free stuff, like your cell phone carrier, there are some exclusions. Maybe 10 of them. Not 10 exclusions, ten people. Not 10 groups of people, ten people. That’s how many people 2 years ago (the last year with complete data available) had anaphylatic reactions to some component of the flu vaccine in the United States. Ten. Out of almost 8 million vaccines administered.

To put that in perspective, out of 56 people who got the flu that year 10 were hospitalized. And almost eighty thousand people died. That’s 10,000 more people than were at the Super Bowl last January.

Considering those numbers, why would you not want to get a flu shot. Hmmm?

flu

“I never get the flu.” Lucky you but by getting the flu shot you help minimize the flu’s effect on the very young, the very old, and immunocompromised which depends on the “herd effect,” that is the more of the mass that is resistant to a pathogen the less severe its effect to the individual.

“I get the flu from the flu shot.” No you don’t. The flu vaccine is a dead vaccine and it cannot give you the flu. You may experience some discomfort at the injection site, it is a needle being stuck in you arm after all, and you may experience some tiredness while your immune system is doing its thing (which might go on for up to 48 hours), or you could be getting the flu because you waited too long to get the flu shot!

“I’m immunosuppressed or take immunosuppressive drugs.” So am I and so do I and I have and for almost 20 years. I’ve had a fkubsjotbgirveacj one of those years and I’m still here, other issues notwithstanding. The prohibition to vaccines for immunosuppressed individuals is restricted to live virus vaccines (MMR, Oral Polio (not used in the US any longer, the injectable vaccine is not a live virus), Chicken Pox (but not the new shingles vaccine). As we already noted, the flu vaccine is a dead, inactivated virus.

“I’m allergic to eggs.” Sorry, this excuse want out of business before I gave my first shot. Today’s flu vaccines are not grown in egg media. The initial antigen is still grown in eggs so there is the slightest chance that an egg allergic patient can experience a reaction. If that reaction is just hives or rash get the shot, if it’s shortness if breath have it done at a doctor’s office or hospital rather than at a campaign like at work unless you work at a doctor’s office or hospital. If you’re still concerned there is a product that is completely egg free. That is Flublok (r) by Sanofi Pasteur. While we’re talking about it, no vaccines contain aluminum, or mercury and most do not contain thimerosal. No single dose vaccines contain thimerosal or latex and some multi brands are stoppered with non-latex materials. Again, if you’re concerned about any allergies, ask. There is a flu vaccine right for you.

“I got the shot but still got the flu.” Unfortunately this can happen but if you should get the flu even though you had a flu shot for the season you are probably going to experience a less severe reaction. Why does this happen anyway? The flu virus is a cunning little critter and it can mutate during the season. Or you might have had the timing wrong when you got your shot, either too early or too late.

That brings us to timing and why the first day of fall is the best time for you to get that flu shot. Immunity from the shot does not happen as soon as the needle plunger squirts the solution into your arm muscle. It’s just there to get your own immune system ready to fight off the flu and that takes time, about 4 weeks to get to an effective level. Once your immunity is established it will stay at effective levels for up to 24 weeks. That takes us from October through April, bookending the usual flu season.

So, trust me. Get a flu shot today.

We now return you to your regular blog posts.

We Tried

June 9, 2019Michael 6 Comments

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)

Close But No Cigar – Yet

June 2, 2019Michael 7 Comments

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

Spare Parts

May 22, 2019May 22, 2019Michael 8 Comments

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.

Kidney While 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

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Don't Believe Everything You Think

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Selfish Is…Deuxième Partie

And now for some good news…

One more time, with feeling

Have a Heart, Please

Orange is the New Gold

It’s All Falling In Place Now

We Tried

Close But No Cigar – Yet

Spare Parts

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