I had not planned to publish this until September... but I'm house bound with nothing to do but eat cookies... so I decided to jot a few things down while it was still fresh in my memory... and before I knew it... voila... it was written. If there is anything exciting or noteworthy to add to this I'll include it in September! Thanks in advance for reading! Me ke aloha!
I have met so many people in my far-flung world travels and adventures... sadly one of the people I never had a chance to meet is Jerry Orbach, he is without a doubt the quintessential broadway leading man... who reinvented himself in almost every venue in the entertainment industry over the years... I enjoyed his performances on and off broadway and in television and film. ( I honestly feel like I saw him in "Promises, Promises" a few years ago)
I really started to think about him regularly when I joined the cast of "The Fantasticks" that included Robert Goulet... I need to back up slightly... I did the show several years before and played the part of "The Boys Father" ... I was way, way too young to be playing the part but aging someone on stage is a whole lot easier than making someone more youthful and energetic...one more small side step... I was cast as the father because at that juncture of my life I appeared more worldly and sophisticated than peers my own age... and as fate would have it... about 12 years later I got a call from my agent asking if I was interested in doing part of a national tour for the show...Not a big fan of national tours I was intrigued and I naturally assumed they wanted me to do one of the two father roles again... but to my chagrin it was for the part of "The Boy" (pretty ambitious score to sing if you know the show and that is partly why I took the part... and I had nothing else going on at the time)... Because of Robert Goulet's age and appearance... he stipulated that the younger parts had to be played by older actors... I guess to make him not look like a fossil... anyway it was for the most part a really dreadful experience, partly because it was the dead of winter and the weather was horrendous and cold everyplace we went until we got to the west coast... but Mr. Goulet's off-stage and back-stage manner left something ( a lot actually) to be desired... I could go on and on with this... but I'll let brevity be the better part of this discourse. ( I actually thought about faking my own death in Detroit).... almost every night on my way to the theatre and on my way back to the hotel... I thought "It must have been so wonderful to do this show with Jerry Orbach playing El Gallo!" I really did not obsess about him too much after that and was sad when he died... when I found out he was an organ donor after death I had a renewed and elevated sense of respect for him.
I looked into it and decided it was an amazing gift of life to someone after you died and easy-peasy because you don't need your organs, eyes, skin, kidneys etc. anymore but could change the life of someone who did need a life saving transplant. It's super easy to register and it's noted on your drivers license.
Many, many years passed... and a friend reached out who needed kidney from a living donor... I thought about it for a few minutes and agreed to do the testing required to see if I was a match and could donate... making the decision was easy... but from the start it was like running an obstacle course and jumping through flaming hoops (Maybe I'm being a drama queen... maybe not)... first came covid that shut it down until the initial calamity was under control... then I was mis-diagnosed with a fatal lung condition that luckily I don't have... that stalled moving forward... then my friend suffered some serious medical set backs that further delayed a donation and transplant. The thing is they will not perform the surgery unless the donor and recipient are in excellent health.... so time stretched on for both of us... every time I began to resent the snail pace the whole thing was taking... I thought to myself... " You are not suffering through dialysis 3-4 times a week and dealing with all the tedious and painful clapback of living with a failed kidney" So just keep quiet and stop complaining and hope your health holds out until all of this is in the rear view mirror... truth be told... this was my friends second transplant... transplanted kidneys only last about 15-20 years.
In terms of testing and interviewing... (three different hospitals and transplant programs) I really did not like the people involved at two of them... and in retrospect... they probably did not like me either... but I showed up for test after test, was pleasant and professional... and I'll go as far as saying cheerful and ebullient even while being condescend to and patronized by the staff at the second program... but I said to myself... none of this is about me it's about accomplishing the transplant successfully...so from 2021 to March 2024 life had a way of throwing punches and testing the resilience for both of us... but when the call came for a donor program meeting this past March... the people heading the donor program for the hospital and surgeons... immediately felt right and in that I thought maybe it's lucky we had to wait for this team... from the start we had hoped to fast-track everything and have the procedure in April... So I started all over again with blood and tissue work and genetic markers for compatibility. I knew all along we were good here from the previous rounds of tests both physical and psychological that included stress-testing, imaging of my kidneys (and about a hundred other things)... and then that dreaded lung issue popped up again... this time I saw a new pulmonologist who knew what he was doing... and not as I suspected from the first one writing and publishing a study of what I was misdiagnosed with a few years before...and we found out I do have a lung issue... that from looking at the scans from 2021 to 2023 and a new one in late April 2024... it seems to be an infection that heals itself, but re-propagates and heals itself again (from the onset in 2020 they wanted to do a lung biopsy and by the time I went for the procedure with a referral from the original pulmonologist ... the surgeon said "There is absolutely nothing to biopsy" and sent me home)... not the six month to a year life expectancy of the misdiagnosis (I only have some minor issues dealing with air quality in the dead of winter)... but most importantly the new pulmonologist signed off on the transplant.
To make a long story short, In the course of about a month you get a complete workup of you and your family's health history and a complete rundown of your present health. I had a meeting with my surgeon and a final meeting with my transplant team with printed instructions pre and post surgery... and a social worker to go over some formalities and other important issues...like my NY Health Proxy etc... etc...
I'm going to side track for a minute... if you don't know me... during the start the first time and leading up to scheduling the actual surgery in late May 2024... I had to plan hospital outfits, and recuperation ensembles... but most importantly I had to cook and freeze several days meals for when I was released from the hospital (this is key... as my partner in crime has been supportive of the decision we made together... and is one of the most amazing people on the planet... except for cooking and kitchen issues... but he is getting better)... About a week before going into the hospital I was in the elevator going up to my floor and someone commented " I love your shoes" (this is always music to my ears) and I said " Oh thank you... these are the I'm donating a kidney so I treated myself to something rather extravagant shoes"... if I live a long and healthy life... and wear these into old age I'll get my moneys worth out of them.
So... fast forward to 29 May 2024... getting ready for surgery the next day is slightly less dramatic than prepping for a colonoscopy... but suffice to say... I get irritable when I don't eat.... so I paid any bills that might come due during my hospitalization and for a few days to recover... and spoke to a couple of people on the telephone... I did not highly publicize the issue until we had a surgery date as we had so many obstacles to overcome and hoops to jump through I really only told a handful of people I was sure were not going to be repeating it... mostly out of a small fear of jinxing it... Someone said "Are you afraid?"...Frankly no I was not because it had taken such a long, long time to get to this point... I had years of reading, doing research (mostly on line) and making notes... that I was not afraid... and I said... I've done a lot of things with my time over the years... but I think this is probably the most significant... "I'm helping save a life... so someone does not have to spend the rest of theirs on dialysis." ... I also found some YouTube videos of my surgeon talking about the program and the procedure... I found them to be reassuring and extremely helpful.
The next morning (stomach rumbling from hunger) I dressed in a jaunty little navy blue and white ensemble perfect with my new shoes... and went off whistling a happy tune on my way to the hospital and checked in at the scheduled 9:00 am and traded my crisp nautical attire for a hospital gown...
for what was supposed to be a 11:00 am scheduled procedure... more lab work was done, and vitals etc... and more waiting and finally a 1:00 pm surgery... it was supposed to take two hours... but If you read back to my work as a stunt double click to read... Landing Jelly Side Up It turns out that the fall I took and sustained a pretty strong blow to one of my kidneys at the Beverly Center may have been the cause for my spleen to adhere to my left kidney ( the one being removed) and the surgeon had to work a little harder to remove it... otherwise everything up to this point has gone great...
The next morning I was on a clear diet (my least favorite next to starving) and not unlike we may have been lead to believe in porn... I had sexy hot nurses attending to my post operation recovery... nothing happened because... well it's real life and frankly... I have never felt less sexy in my entire life... but my mind reeled at the possibilities as I'd never seen them in the wild before. To tell you the truth I had a surreal feeling of being in a hospital soap opera... handsome skilled surgeon, attractive and friendly hospital staff, clean private room and decent food... I have not spent a lot of time in hospitals but in spite of the pain issue it was pretty swell.
I have to say right now, the male and female nurses and the rest of the hospital staff that paraded in and out of my room, and most especially my transplant team... were wonderful, pleasant, professional and a credit to their profession... the only real drama is they want you to get up and walk and drag the IV and catheter around as part of the healing process... and to help eleviate the gas pain from being blown up like a party balloon with carbon dioxide to aid in the surgery process)... most conversation consisted on passing gas, pain issues, urine quality... and bowel movement ( I did not have one until four days after I was released from the hospital)... by dinner I was moved to a regular diet... and had crab cakes that considering I was in the hospital were actually quite good... and as much as I was ravenous coming to the hospital could not finish them... my regular appetite did not fully return until I had been home from the hospital a few days.
The surgeon stopped by to let me know everything went well for my surgery and the recipient which was my final worry with the whole process and felt a sense of relief...I was slated to be released the following day... but due to the complications with the spleen I may have to stay an extra day... although my keen sense of smell was not at it's usual peak level... I was sure I had old man hospital stench and could not wait to go home and take a proper shower. (I took a couple bird baths in the sink during my urination runs after the catheter was taken out (that was a mini-drama)... and trying for the much anticipated bowel movement that I was questioned about several time a day.
The good news is that I was released on 1 June as planned... I had to make a serious wardrobe revision as I was still a bit bloated and opted for easy on, easy off sweats for comfort and ease... So with a car service ordered I made my way home and truthfully I was happy to be home but very uncomfortable and irritable is an understatement... but over the next few days, my usual charming personality returned. The transformative effects of a fresh shave a nice warm shower and clean hair are amazing and should never be discounted... not to mention sleeping in your own bed....From day I was able to get in and out of bed, and eventually take an unsupervised shower and do small things around the house (baby steps) Finally on 7 June my first assisted field trip in public to the supermarket.... dizzy and weak upon return I felt I had made great strides in a week... still sore and urinating more regularly (from all the fluid pumped into me during and after surgery) than I have in my entire life... but I'm not taking the pain medication and I feel like life is starting to return to an even keel... finally my friend was released from the hospital (the surgery and recovery are both much more intense than mine that includes frequent and regular follow up and a quarantine period)... much to both of our relief the transplanted kidney is functioning.
As far as the wardrobe planned for the home recuperative period... it mostly had to be abandoned for the comfort of loose fitting t-shirts and gym shorts... the exception being a stylish silk kimono... for lounging around.
For everything and everyone involved... I think two of the most important qualities necessary to get through the process is a sense of humor and flexibility...the sense of humor part is pretty self explanatory... but because when we started the program in March hoping to fast track for an April surgery... I had to make professional allowances (luckily I'm self-employed)... but my partner in crime Nicholas had to arrange vacation time to deal with being the pre and post surgery care giver and advocate... well as is would happen all his vacation time was used by the end of April (don't get me wrong we had a nice time for three weeks) but I was concerned about whenever the time came for post surgery mostly... it was a last minute shuffle of scheduling and days off (people tend to be nicer about schedule changes when it involves dealing with someone donating a kidney)... but still... the image below best illustrates the journey up to this point...
So post surgery I only had Nicholas' undivided attention for three days... but was assured by the concierge and a few people in my building that they had my back if I needed it... luckily I did not and considering my irritability I'm sure Nicholas was so happy to be going back to work and leaving at least during business hours what felt like a convalescent home from hell...
So now I have to follow up with the surgeon when the dressing and sutures dissolve... I'm pretty sure the scaring is going to be minimal and will not draw any unwanted attention at clothing optional beach or pool venues in the future... The only really noticeable difference for me is the strength and quality of my voice (in case you don't know I make a living singing and doing various types of vocal work)... As soon as I can I'll resume voice classes and exercises and I'm sure I'll be back on my A-Game in no time.
... So the keys to a successful recovery will be maintaining a healthy diet and life style (I've spent almost a lifetime on this so it's nothing new) but with more limited sodium intake and no protein supplements... no lifting over ten pounds for a couple months... I can't be submersed in water during the healing process thus leaving swimming off the board for now (my main source of summer fitness ) and using my core, eliminating tennis (my second source of year round fitness)... the follow up appointments with my transplant team are to be scheduled at six, twelve and twenty four months... as a footnote to all this is if I ever need a kidney I'm at the top of the list on the National Registry Transplant Waiting List (keeping my fingers crossed I'll never need the service)... meanwhile making some key changes in my future choices... I'm giving up Black Diamond ski slopes (I've been weaning off for a few years already) and will focus my alpine adventures to more intermediate areas wearing kidney protection and of course apres ski situations in front of a cozy fire. I'm retiring entirely from sky diving (it's actually been a few years so it's not a big compromise) and even before all this I've been thinking about giving up skin diving in favor of snorkeling... and finally Black Friday Sales events (that I've never done anyway)... so I'll take each situation as it comes up and make the best choices possible.
I want to close with the fact that I was never pressured into this... I made the decision on my own and never felt any coercion or sense of forced obligation (if however you do during the process you need to speak to the advocate on your transplant team)... The decision to be a living donor is yours and yours alone. But please consider it... if it's not right for you there is no shame in that that... but if it is in fact something you would consider to help someones life... remember the life you are saving could be your own someday... It was a long road from agreeing to recovery and I think one of the biggest fears of my recipient was that I would change my mind and go back to Hawaii to my little grass shack...Something I had to sometimes reassure my friend was that "I'll be there for you when the time comes not matter what"... if you do make this decision... don't make it lightly and make sure you are doing it for all the right reasons and stick to your commitment. Everybody's experiences with this are going to be relatively different and unique to you and your recipient... the one thing I can tell you with all my heart is that it's absolutely nothing like it is depicted on television and in film.
Maybe I should have started with this... but you only need one and can live a perfectly wonderful life with a single kidney that just needs to work a little harder and stronger... just like your heart.
Thanks for reading... Please join me agin in September!
