The Organ Donation Chronicle of Michael Podolny, Albuquerque, New Mexico
(As posted on his blog: http://de-intimidator.blogspot.com/)
April and May of 2008
D-Day Minus 18 And Counting
Most of the people close to me are aware that in 18 days I should be in the operating room of the Hartford Hospital in Hartford, CT, where I will be donating one of my kidneys to my sister. But since one needs to write about something in one’s blog and 1) this isn’t exactly a common everyday event, 2) it will give me material for at least a month and maybe more to write about, and 3) being open about this has over the last two months has opened a wellspring of uplifting events; it really seems like the right thing to do.
The Journey Begins
It has been almost two years since this odyssey began. Approximately a year ago last winter I got news that my sister’s kidneys were failing. I would say that my family (siblings and remaining parent) is not exactly close. And while if I were a good brother, I would have known this much sooner than I did about, it came to me as shock. My sister lives back in Connecticut and I would not characterize her as the most self-reliant person in the world.
So getting this information, what was I going to do. There was a initial passing thought about donating but with conversation with my father, I was counseled to be very careful about what commitments I made and to really think about the consequences of my actions. That led to a hiatus in activity. But it became apparent very quickly that there were very few people who had expressed any interest in donating and those that did were either not compatible blood types and/or my children. I really didn’t like the idea of my children with so much of their life in front of them to take this risk. And I knew that I was compatible. A nagging feeling began to arise. I was being put into a situation where for once in my life I had to make choice that could affect if someone was going to live or die.
So I began to start reading about live donation and getting an idea of the risks that were involved and what type of commitment would have to be made. I learned that this is considered a very, very safe procedure – but that it was major surgery – and you could die. I also found that I could be out of commission for up to 3 months – Yikes! What was going to happen with my income? I am self-employed. Most of my income is what I generate. Because out legal system wants to discourage any trafficking of organs, it is very, very difficult to get any financial aid to assist a donor. Our financial situation was going to be doubly taxed because of having to go to Connecticut and all the associated costs of funding the travel and staying their. What would be the consequences to my wife if I died? What would happen if I didn’t die but became disabled – financially a much worse scenario? There was a lot to consider.
Weighing The Choices
The choices I discussed last time get going over and over in my head and in my discussions with Wife – what would be the consequences to us to her if the worse happened. At the same time there was this other theme – I could save her life. Or I could let her go on dialysis and wait and wait and wait until maybe she came up on the donation list. And I balanced this against the importance of my life to my family and what my sister’s contribution was.
That was a particularly bad space to be in. How do you judge another persons life. Do you do it on accomplishment? Values? Wealth? What? Ultimately for me the entire conundrum came down to a rather simple thought. If the roles were reversed, would I want someone examining my life and passing judgment on me as to my worthiness to be saved? Hell no I wouldn’t. I’d want them to save my ass.
That sealed the decision in my own mind. But that did not take into account the feelings and desires of Wife. I don’t want to put words in her mouth. I think anyone who is married or has had a long relationship with a partner would be less than happy to have that partner making such a choice. After long talks with Wife I got her acquiescence to proceed.
By now it was getting towards the summer of 2006. We initiated contact with the hospital where my sister was being taken care of, Hartford Hospital in Hartford, Connecticut and began the series of screening tests. This consists of blood and urine tests that identify how well you match or don’t match and how healthy one’s kidney functions are since they’re not going to take a kidney from you if you are having your own problems.
There were a couple of humorous moments here. When you stop in for the first set of blood tests they come out with almost a dozen vials. I think my jaw must have dropped because the technician made a comment about how this was indeed a lot of blood to be taken. Another test is known as the 24-hour urine sample. This requires you to literally collect all one’s waste for an entire day. I will just tell you that it’s a helluva lot! Emotionally once you’ve made a decision like this, you now start to become worried about failing to be able to follow through on the commitment. So it was relief to me when the results of these tests were positive
The next hurdle was a trip to Hartford Hospital. By now they had gotten a complete medical history, ekg, and other general health tests. The trip to Hartford included meeting the doctors, being told what was going to happen, meeting a psychologist (they try to screen out the self-sacrificial) and getting an MRI to find out what the kidneys look like and where they were exactly located.
The results of everything were positive. I was fully approved. We began talking about dates. Our desire was to do it around Christmas time when activity in my business tended to slow down. We began discussing specifics and mechanics of how we were going to arrange for my care and stay in Connecticut and what we were doing business wise. I began to tell various business contacts about what might be happening so that the appropriate planning could take place. We researched mechanisms for financial aid (there aren’t many) and I talked to lots of people who had been through donating. We were gearing up and dealing with our concerns and issues as best we could.
Then we got a call from my sister. Everything was going to be on hold. Evidently the deterioration of her kidney function had stopped and was hovering at a level higher than the threshold beyond which they will do a transplant. We learned that this is not an uncommon situation where a recipient will plateau, hold steady, and then suddenly start having the kidney function deteriorate again. After all of our efforts, we were on indefinite hold.
The Wait And The Call To Action
The wait began in the early fall of 2006. Through first part of 2007 the thought of doing the donation went into the background. There was nothing my sister or I could do. Her condition needed to run its course. To a certain degree it was if it never happened. I couldn’t plan for it so I went forward with my life. Every once and a while someone would ask or Wife and I would bring it up but for the most part it became a non-issue.
Then in the summer of 2007, my sister gave me the news that her kidneys were again failing. My sister is not the subtlest person in the world. Her words were that we could schedule the donation surgery again. I nearly blew up telling here I couldn’t just up and do this that I had to plan things out to ensure the minimal disruption to my business and our financial well-being. Wife in the interim had suggested that maybe there was a chance of a non-living donor being available. My sister was very apologetic and asked if I had changed my mind. I did take a few days to reflect and no, I had not chanced my mind. This was something I still felt was important for me to do.
I needn’t have bothered with my explosion. Because of the time that had elapsed they (the hospital) were starting the process of approving her for a transplant all over again. During the hiatus, there had been a complete turnover of the personnel who were the coordinators for the recipient and the donor. So both of us were dealing with new people that we had no prior contact with. In addition these people seemed very inexperienced and to my mind very bureaucratic.
My sister went through another round of screening and there was serious concern on the part of the hospital after her psychological examination. They asked her to get an outside opinion. I’m not sure what the issue was but I can extrapolate that they were concerned about her ability to follow through on all the requirements following the receipt of the organ donation.
While all this was going on, we are waiting and wondering because the hospital refused to talk to us. There position was until my sister was officially approved, there was no authorization to talk to a donor. I was livid. What about my life? Didn’t my needs enter into the equation? I needed to talk to them. I needed to tell them that I couldn’t just drop what I was doing and run and donate my kidney. My business was at a critical point and I had to plan for my absence. We wanted to do the donation in December when business was always slow. I tried to explain all this to my sister so she would understand but in reality she was caught up in the system too.
The Decision is Made
We watched the dance of my sister trying to deal with system going to her own psychologist and then the Hospitals and back. In the meantime the weeks and months ticked away – September, October, November. We were supposed to be spending Christmas with our daughter in Chicago but we couldn’t make any commitments or reservations because we might get the call that we can do the transplant in December. I’m balancing commitments to my associates at work. What can they expect of me? Wife, who has been so supportive, asks only one thing, that this doesn’t screw up a long planned river cruise in Europe. I keep trying to tell my sister what my restraints are that if it can’t be done December, we are going to have to wait until May.
Finally in December the call finally comes. Sister is approved. Let’s do this in late January. Explosion number two. The hospital is telling me that they only schedule these donations six weeks in advance. I talk to my coordinator and explain the situation (now that I can actually talk to someone officially), how I need time to put my affairs business and financial in order and how May is the time that I want to do the donation. The hospital agrees to my request. In the game of Hospital Bureaucracy vs de-I, it’s 5832 to 1. I’m on the scoreboard!
Of course my sister wasn’t too happy about the delay but with my assurances that I was fully committed to making the donation, she was ok about it. Just a side note for the purpose of full disclosure – my sister never once asked me to donate my kidney and I can say in all honesty that I don’t think she ever even once made the slightest implication of guilt. All she has ever shown was gratitude.
Starting the Countdown
We had set the date, May 14. It was real. We were going to do this. Now the reality of trying to organize my business so that I could maximize my cash in the bank and some how have some momentum for when I came out. I told my associates that from now (January 2008) until the donation was complete that I was going to focus exclusively on earning income and was putting longer term developmental projects on hold. We were in the process of some significant developments with associates having their own challenges and there were lots of questions as to where everything was going to end up. Not exactly a comforting set of thoughts as I’m wondering how we’re going make this all work financially.
Because so much time had elapsed since we had started this process, it was necessary to redo most of the medical tests. Back I went for the dozen test tubes of blood and the 24-hour urine sample. Of course by now I was pro and was non-plussed. Certain tests for tissue sampling and various dread diseases, the hospital in Connecticut wanted to do directly. So in February, I took a trip their.
Around this time a funny thing happened. It had to do with my motivations. They didn’t get challenged. They expanded. I can’t quite remember how it took place but I was becoming very aware of gratitude and specifically my personal gratitude for so much that had happened to me in my life.
It might not seem this way to some, but I feel I’ve had a charmed life. Any time something bad happened; something else happened to bail me out. When I was in the Army, I was supposed to go to Viet Nam – I had orders to go – but there was a one-letter error on the orders. The clerk could have easily said that it made no difference. Instead she said the orders were faulty and sent them back to Washington where we promptly never heard from them again. I was not the best person when I started my marriage or raising my kids. But my Wife had unlimited patience and waited until I got my act together. I had business failures and made bad spending decisions that were ultimately bailed out by relatives. Just in the last few years I have missed major auto accidents by the tinniest of margins. Never had I been put in a situation where I had to make a conscious decision about putting myself at risk for something that was truly important – like another’s life.
But here it was – that situation where I had in fact been offered the opportunity to make a conscious decision – to decide if I was willing to take the risk to save someone else. It was so clear in my mind at that moment that God was giving me a test. Was I going to take all the good fortune for granted as if I was entitled to it? Or was I going accept that I needed to repay all the good fortune I had received. Was I going to be true to the spiritual principles I had worked on for 25 years? Or when there was a risk to my life, was I going to bail?
For me there was no question. And it filled me with even more confidence that this was what I was supposed to and what I needed to do.
Coming Down the Final Stretch
As we moved into March life was getting unbelievably hectic. Fine, I’d made my decision. I was totally comfortable with it. But that didn’t take away from my need plan my life so that this wasn’t going to be a bad financial disruption. I had bought a copy of the DVD, The Secret, for my associate, Ricardo, and we were watching it at his home. It’s all about the power of visualization. I had got it for him but I took the message to heart. I needed to visualize exactly how I was going to power through this to the outcome I wanted. So I started putting lots of energy into that. At the same time I was trying to work as hard as I could to 1) make sure my existing clients were all where they needed to be when I took my hiatus and 2) that I had some business to look forward to when I was able to come back to work.
Other things were happening; signs that I truly had made the right decision. After my visit to CT in February, my Dad had come to the conclusion that his new guide dog really needed walking every day, something he could not do. So he asked my sister to do it. My sister and my Dad have had almost no relationship for decades. Now they were seeing each other everyday – and talking – and communicating. I never thought I would see this happen. Some things with my associates that were real question marks suddenly just resolved themselves. All of a sudden after years of effort, we were seen new business being developed by people other than me and in places other than New Mexico. And on top of it, totally unasked for, a financial benefactor offered to provide me with financial support for the period when I couldn’t work and had the extra expenses for being in CT. A huge psychological burden lifted.
We had our trip to Europe coming up and I wasn’t excited. I should be working. Even with the benefactor, I should be doing everything in my power to make sure the business would be in good shape. Up until the night before we left, I was working and when we got on the plane I had done virtually nothing to be ready for our trip.
It’s Becoming Reality
The chaos leading up to the trip was ultimately very beneficial. I was in fact tying up lots of loose ends with my business and getting things into position to go on autopilot for the period that I was to be down. The vacation itself was great. I really wasn’t thinking about anything other than what we were doing which was a blessing. On the flight back, my mind turned back to what was about to occur.
My associates and I made a decision to make a public announcement via our E-Letter of my unavailability during the surgery and recovery period. Our list is around 1000 and I must have had close to a hundred emails expressing support not to mention all the expressions of support from friends, clients and associates. It has been very humbling and touching.
My associates were doing a phenomenal job. We have new business opportunities being lined up for following the surgery. All the client work is in good shape. We had a financial hiccup with a lot of slow paying receivables that put Wife and I into a little panic. But with the help of our associates we put that to rest.
Wife and I did a lot of talking – a lot of making sure we were on the same page and were OK with the decision.
More miracles within the family – my father prodded me about making sure my sister had the proper support over the first few weeks after the surgery when there is the necessity of a highly disciplined regime of anti-rejection drugs she needs to be taking. This leads to me calling my older brother and asking for help that is gladly given…I don’t thing we’ve talked in over a year. We have a conference call with my two brothers, my father and I. We haven’t had this kind of discussion I think ever. My Dad is incredibly relieved that my older brother is going to following my younger brother coming to CT to provide support – and they haven’t had a very good relationship either. My younger brother is providing more and more emotional support to me. My sister is showing that she is truly committed to doing what she will have to do after the surgery.
Finally there isn’t a whole lot left to do other than pack and make my way to Connecticut. No more thinking or planning. Everything associated with everyday life has been programmed into the autopilot and set on its way to a point in the future when I will rejoin it. It is a very, very odd feeling. I’m mix of emotions and feelings from blissfully spiritually to fear of the unknown a potential end to it all. And I’m on the plane to Connecticut. It is happening.
Yesterday was the first step of the actual process leading to the surgery. As I am an out-of-state donor, they take a number of steps that would have been done earlier and place them just before the surgery so one doesn’t have to make that many extra trips. One of these steps was supposed to have been done in February when I visited last. This was visit with kidney specialist and a review of my medical history. As the doctor and my coordinator were on vacation when I was there, we couldn’t do this and it was scheduled for yesterday.
I had a heart related situation fifteen years ago. Subsequently, I have had a couple of clean stress tests though there does show a light irregularity on my EKG. Looking at my chart, the kidney specialist decided that I needed to do another stress test. It’s 10 in the morning and they want me to the cardiologist (in a different town than the hospital) at 11:45. In the meantime, they are trying to get everything I was supposed to do Friday morning done in the hour or so I had left. This included meeting the surgeon that is most likely doing the work on me.
It’s a good thing I have researched this hospital completely and know they have an excellent track record and reputation because the experience I’ve had with the majority of the people (my coordinator, the kidney specialist, my sister’s coordinator, the social worker) has been unimpressive. It’s like they’re this big factory and they’re just processing us. Every time I ask a question, I get a “I don’t know” or a pat answer that clearly is from the book. Requests to have certain people who are the specialist for the question not known, are never followed up. Fortunately the surgeon seems cut from a very different cloth and I felt very comfortable with him and let’s face it, he’s the most important one.
At the cardiologist’s, I’m expedited on to the treadmill and do a stress test. The RN handling this is big expressive very outgoing guy. As we do the test and just afterward, he’s getting quieter and quieter with a troubled look on his face. I know something bad is happening. He tells me about the irregularity which I know from the last time I did this. He shows it to the cardiologist who says that they’re going to have to do some additional testing before they can clear me; either a nuclear stress test where they actually take a picture of your heart and arteries or an angiogram that does that does this in even more depth. These could take days to do. At best I’m looking at the prospect of delaying the surgery or at worst my being disqualified as a donor altogether. Emotionally, I’m taking a broadside from a battleship.
At this point probably the nicest thing that could happen took place. The cardiologist (I’m embarrassed that I can’t remember his name) clearly sees my distress as I relate the issues of distance and my personal circumstances. He puts everything into overdrive. There is an extra dose of the nuclear dye. He OK’s my explanation that I’m in good shape and can easily do another stress test. He’s tells everyone they’re going to do it now. The staff could not have been nicer or more supportive.
The nuclear stress test involves them having you do the treadmill, then shooting you with a nuclear dye, and then lying you down motionless for 20 minutes each on your front and back while they take pictures using some sort of MRI type device. All during the wait, the test, the pictures, I am meditating and visualizing with as much concentration as I can. Finally as I am waiting following the test, the doctor comes out and tells me I’m clean and I can go ahead with the donation. As a final kindness he tells me he will call the kidney specialist to make sure that they have gotten the news and that everything is still on schedule.
It is almost 4 in the afternoon by the time all this has happened. I haven’t eaten since breakfast, it’s pouring cats and dogs out, and I’m totally wiped out. I get to my father’s and he gives me a restorative snack of cheese and armagnac. We decide to cook at the house. I run out and get a big steak and baked potato that Dad cooks along with onions cooked in schmaltz. I go down into his cellar and dug up a bottle of a ’91 Côtes du Rhone. It’s a real soul food kind of meal and with my Father’s company, very restorative. I crash at around 9 PM and sleep through the night.
Under 24 Hours
It’s 3:30 in the afternoon on Tuesday. By this time tomorrow, the operation will be over. After the almost two years, the moment has really arrived.
This most likely will be my last post until I am released from the hospital. They anticipate that I will be released next Sunday 18th. I’m not sure if I will be able to get access to my computer until after the release and I’m pretty sure there’s no wireless access. I have asked daughter Motherrocker to post-the updated news on the blog for me. I am so ready to get to the operating room and have this accomplished. It has been soooo long.
The weekend was uneventful. I just hung around my Dad’s and we did the stuff we usually do when I visit him. On Monday, I was back to the hospital for more stuff. This included getting my admission paperwork done, more blood work for both general health and final tissue matching, and a chest x-ray. Of course when I showed up there were no instructions for what was to be done with me. Evidently the transplant department hadn’t sent the appropriate work orders down. But I was in the computer system so they were able to get me processed until the orders came down. They give you a much more detailed explanation of what will happen the day of the surgery. I must admit I don’t particularly like hearing those details but I know it’s better than arriving and having no idea of what has happened. You stop eating around midday and are supposed to be off of anything including water after midnight. I’m supposed to be at the hospital at 5:50 in the morning with the surgery scheduled for 7:45. It should last 3.5 to 4 hours.
Gloria arrived last night and my brother Richard came in the night before. We had a dinner together with my Dad, my sister and her husband.
I suspect that I will be very introspective tonight. I want to thank everyone for all the wonderful expressions of support and prayers on both my and my sister’s behalf and look forward to writing to you about the fun times in the hospital.
My Trip Through Surgery and Recovery
I didn’t sleep very well the night before the surgery. Wife and I decided that logistically it made sense to make use of some rooms that the hospital sets aside for family of patients – nice logistically but absolutely minimalist from a creature comfort standpoint. The bed was so small I ended up sleeping on the couch. Between that and the general excitement, it wasn’t much of a night’s sleep.
We were up at 5:15. You have to scrub yourself down with this special soap for five minutes prior to the surgery. Then it was walk the couple of blocks to the hospital and to the pre-op registration. Here begins the transformation from civilian to patient. I’m sure that many of you have had your hospital experiences but this is the first time that I have ever gone in for major surgery. I’ve commented previously on my frustrations with the hospital’s bureaucracy however, I have nothing but good things to say about the staff that prepared us for the operation. Quick, efficient, calming, caring, they had all the aspects one would hope for when entrusting your life into an organization’s hands. Wife was with me through out and was a rock of calmness.
On my own part I was amazingly calm. In fact I was almost buoyant. After getting rid of my clothes and getting in the hospital gown and having given all the facts and figures to the appropriate people you’re waiting in the hospital bed. I had my iPod and was listening to mantra chanting. Before long I was sitting in a meditation posture on the gurney and getting into a very solid state. My surgeon came in. He and I had talked about meditation at our visit on Friday. He is a very calming soul as well and told me he’d be seeing me in the operating room. The anesthesiologist came by to brief me. My sister was across the room and I had a chance to give her some upbeat words.
Then came two operating room nurses, one of whom I will call my operating room angel, Irene. Angel Irene asked me what I was listening to. When I did she asked if she could listen for a moment. Then she asked me about some other yogic mantras that she found very beautiful. We were ready to go. I was handing my iPod and headphones to Wife and Angel Irene told me not to, that I could keep them on until we got into surgery and that she would personally make sure that they stayed with me. I said goodbye to Wife and we rolled a very short way into operating room (I think unless they had a pre-operating room). They put the IV into my arm and that was the last thing that I remembered until I was in the recovery room.
In the recovery room my first contact was with another sweet soul, John, who let me know that the surgery had been successful for both my sister and I and that I would be taking awhile to be coming out of the anesthetic. When John talked to me I realized that I still had my headphones on and they were still playing the mantra chant as when I entered into the OR. This recording is only 45 minutes long and is not set for repetitive play. So I don’t know what my Angel did in turns of turning it off and turning it on when things were over but I can’t think of a kinder expression of caring.
The pain wasn’t too bad in the recovery room but we were there for quite some time. At one point John came by and told me that my blood oxygen level wasn’t coming up high enough and they were making adjustments. I was pretty fuzzy. What I didn’t know was that outside in the waiting area Wife and my Brother were in deep anxiety. The surgeon had come out right after the surgery and found them in the hospital lobby to let them know that the surgery was successful and that I should be up in another hour to hour and a half. Hours go by with out a word. My sister’s husband has been called into the recovery room to see her but all Wife and brother get is a word that I’m having trouble with my oxygen level. Brother the doctor knows that types of things that can go wrong and Wife knows that I’ve had this type of thing before. It is over 4 hours after the surgery before I’m wheeled up to the floor where I will be staying. I’m still very fuzzy at this point and don’t pick up at all on the anxiety level of Wife and brother. It’s almost 6 PM by this time and it has been a long, long day for Wife and she wants to let go of the stress and I’m out of it anyway.
Through The Looking Glass – Life In The Hospital
My very limited and unscientific sample of hospitals has led me to believe that an awful lot of them are big bureaucratic machines. But my negative feelings about Hartford Hospital during all the months prior to the surgery were confirmed in spades when I was placed in its bowels for recovery following the surgery.
I briefly posted on Friday about the pain once surgery was complete. I can’t say that I wasn’t warned by a number of people. But as I’ve commented when you willing yourself through such an experience, you are putting your mental energies into visualizing your fully successful outcome, you just don’t focus on the negative. And you are focusing on getting to the finish line (the operation) so detailed thoughts of what exactly was implied by having gone through this act were not fully on the agenda either.
So starting Wed night in my hospital room the full implications of my decision in terms of my person were hitting me like a ton of bricks. I can honestly say that I’ve never been in such a constant level of pain for such an extended period. Of course I’ve lived a charmed life and there millions maybe billions of people who daily are going through incredible levels of pain. I can describe the pain as fitting into four categories:
- Pain from the operation – this includes the incision and the resulting trauma to tissue in the body and around the area where work was done
- Pain from gas – the gas the system generates from working out the anesthesia they put into you
- Pain from being in bed – Being bedridden causes it own set of problems with aching and soreness and is exacerbated by whatever you bring along such as my arthritic hips and shoulders
- Pain from the hospital system – I include in this all the physical stuff such as tubes sticking in you and out of you, blood being taken, etc. plus the psychological aspects of the hospital routine that seems to an outsider as specifically designed to keep one disjointed, frustrated and as discombobulated as possible.
I may be being very unfair to the people who were working in the unit I was at. There may have been some extenuating situations. And there were some really wonderful people who really did their jobs with caring. But the majority were just going through the motions; doing as little as they could to get through the day.
There are these horribly annoying IV dispensing machines. You are given a metal pole on set of wheels. On this goes your IV bags (you could have several for hydration/nutrition, medicines, other drugs), the dispensing machines, and your urine collection bag (you are almost certainly have a catheter in you. In fact the cognoscenti quickly figure out that urine production and the optical clarity of your urine are very, very important. One of my roommates and I would give each other pats on our back about the volume and good looking nature of our urine).
The pole is your symbol that you are indeed a patient worthy of being in the hospital. Once your input and output tubes come out, the system will be looking to eject you as soon as it can (modified for maximum final frustration). The dispensing machines are very sensitive. If by rolling over your block one of your tubes (really easy to do when you’re drugged up and in pain), it sets off an alarm. It sets off an alarm when one of your bags is getting empty. If it is on battery there is an alarm for it getting low. When the alarm goes off, it goes beep beep, pause, beep beep, on and on and on and on until someone comes and fixes the problem and resets the machine. Until you become a cognoscenti like during the first 12 hours when you are racked with pain and in an anesthetic haze, you don’t even realize what is causing the beep. No orientation is given when they wheel you in the room. Your consciousness just becomes aware of the beeping that continue and continues and continues with ever deeper annoyance. You finally learn that you are supposed to call for help which almost never comes right away and can take as long as 40 minutes. Not only that, you can hear the beeping of other people’s machines. You can hear their calls into the central desk. You can hear the page for the appropriate Nurse or Care Assistant to go to the room. You can hear the beeping continuing and continuing. You can hear the second request. So if I can hear other people’s beeping from around floor, can’t the staff here it? If they do, there must be some sort of work rule that says you can’t initiate any action until the patient actually requests it because they never did with me or anyone else that I could determine.
It almost never mattered what you requested because it was going to take awhile to get. Sometimes you could hear that there was something critical going on in the floor – lot’s of calls for help at once, a critical patient being wheeled in, etc. – however other times I would see (as I was getting better and walking around a lot) that the staff was just chatting away while the calls for assistance came and went. The body language of a lot of the staff was so demonstrative – “I really don’t want to do any work and I’m going to do as little as I can get away with”.
Within a short period of time, a day or so, you can hear totally what’s happening. That’s a problem itself because trying to get any quiet or darkness to rest is really difficult. Then there are the routines that must, must, must happen. You must get your vital signs (temperature, pulse and blood pressure) three times a day and you must get your blood taken once a day. And all your urine must be measured. Most of these are scheduled for when you finally doze off to sleep.
You are encouraged to get your lazy ass out of bed and get walking around. This of course is a good thing because it is what you need to get out. However, there is that slight problem of getting anyone to actually help you during those first few times. I was lucky that my care assistant in the beginning was one of the best I had. Then you go through the learning curve of how to unplug your device so your pole was mobile and how to use the pole for support while navigating with the device plus input and output bags and tubing.
Then there is pain medication. The whole thing related to pain medication is very bizarre. Along with our device, they include a narcotic pain reliever. You get another button (brown to distinguish it from the red ‘pretend someone is going to respond to your call for help’ button. They want you to use your brown button – sort of. You can push it as much as you want. The device will regulate things so you can never overdose yourself. And the official posture is that they do not want you in pain. You should not be in pain. You should take your pain medication.
Now some of us are sensitive to narcotics and don’t react well. They send me into all kinds of dark dreams and I feel like I’m on the verge of asphyxiating. So after the first night, I’m saying to myself, “I may be in agony from the pain but I think the narcotic effect is worse so I’ll just deal with the pain.” The system doesn’t like this. When the doctors and nurses come in they ask how your pain is from 1 to 10 with 10 being the worse pain you’ve ever had. So you tell them and they say, “but you’re not using your pain meds; if you’re in pain you need to use your pain meds!). So you insist that you hate the pain meds and you’d rather just deal with the pain. Finally they relent and let you take a much smaller dose by mouth that dilutes the effects substantially.
Additionally the narcotics slow down the body’s digestive and elimination system. This is the second big rite of passage to getting out of the hospital…you have to poop. No going means not going. So the more you use the painkillers the more you’re slowing your system.
Since I’m pretty much a paranoid individual, I’m convinced they want everybody drugged up as much as possible. If they’re drugged they won’t ask for so much pesky help that interferes with standing around the nurses station, chatting, being in the break room and surfing the Internet.
From Recovery to Exit
I’m up from the recovery room. Wife’s gone. And I’m in a lot of pain – more pain than I can remember ever. You’d think they’d cut me open and pulled something out? Oh yah they did. What a change. One moment I’m totally focused on composing myself for the operation. In a blink I’m in la-la fuzz land of the recovery, and in a couple of longer blinks I’m in the hell of the four pains. I’m using my brown pain button but the narcotic feeling isn’t helping things. I’m trying to figure out this whole bizarre world of the hospital with its noise and interruptions. My roommate, an older person in for a kidney crisis, watches Spanish language TV all night.
You keep getting different people, nurses and care assistants, as shift changes. You’re getting a handle on what to expect and what not to – all while dealing with intense pain and discomfort. In the morning the doctors come by and let you know things are fine. I had my best caregiver that morning. She gave me a sponge bath that was a total act of gentility and kindness. I later learned she had come from Peru where she had a degree in psychology, had come to the US seven years ago, had started as a cleaner in the hospital until she got here certificate to be a patient care assistant.
Slowly through that Thursday, it seemed that I was stabilizing. I was told that the key to showing the doctors that I was healthy enough to get out of the hospital would be when my digestive track showed proper elimination processes – meaning the passing gas and solid waste. As we entered the second evening, the gas was getting worse and worse. The pain was picking up again as the gas build up put pressure on the internal bruising. I was spiraling downhill in my spirits. My brother, the doctor, stopped by in the evening and reminded me that this was a natural process, that I needed to stop fighting things and that I should remember there were lots of people thinking about me and supporting me. I grabbed on to that. I wasn’t alone. I needed to let go and have confidence that I was supported.
Thursday night was a bad night. I was pushing myself to get up and get around because they old me that was a key getting the internal processes going again. There is just no way of simply falling asleep for any length of time. With great effort and pain, I would finally get myself into a position where my body was temporarily feeling comfortable (understanding that each movement, each shift brought some sort of sharp pain and required the negotiation one’s various tubes) and I would sleep for an hour or an hour and half. Then the body part arthritic body part (shoulder or hip) that was my main support would start crying out and I’d wake up or one of the many hospital disruptions would wake me up and I’d be aware of the pain all over again. I’d decide it was a good time get my ass up and move around. I was able to do this with help the first night and on my own thereafter. Then I’d get back into bed (painfully), use a breathing exercise tool (to encourage deep breathing to avoid pneumonia), try to sit up semi-lucid for a while, get tired, try to find a comfortable position. Doze off for an hour or so. Etc. Etc.
That night I also had a set back when a nurse put an IV tube in incorrectly and one of my left hand and wrist got all swollen. It took a day for that to go down and the hand could not only be barely used but I could no longer put pressure on it without pain that further restricted my ability to shift my position.
I started Friday still in lots of pain with the gas building up. But throughout the day my walking was paying efforts as gas started coming out the front. We needed help from a suppository to get things going the other direction but I finally got my breakthrough that night. My roommate was sent to a nursing home early that night and they moved me to the window side of the room – a bit cheerier. Big event in the late afternoon – they took out my catheter. I’d figured out how to unplug the IV machine, so I could move around on my own. With only me in the room, things were definitely more peaceful and I rested significantly better that night.
Very early Saturday morning, I got a new roommate, Dave. He was a really cool guy with a serious prostate infection that had sent him into a super high temperature. A bus driver for the Hartford transit system, he was a divorced father of two, still friendly with his ex and a love outdoor activities and food…and a frustration with the hospital system.
When my doctors came in during the morning they gave us unexpected news; we could be released – right then! One problem, we had nowhere to go. Based on what we’d been told, we’d made our reservations for the residence hotel in Manchester starting Sunday. Wife went to work (she’s become a master at playing the ‘he’s an organ donor’ card. The hotel said they could get us into a smoking room for one night and then put us in our non-smoking room starting Sunday. Somehow she got this upgraded to a non-smoking two room suite that we were able to stay in until Thursday for the same price as we originally quoted.
Getting out was another exercise in frustration. When we finally got the room committed, we told them we were going to discharge, but the doctor had already left the hospital. 45 minutes later I went to the nurse who had still not made the phone call. It took 3 hours until the final paper work was done. I had gotten myself changed and ready to go in the beginning. By the time we were leaving it was 5 in the evening and much colder than when we thought we were actually going to live. By the time we got to the hotel, I was incredibly cold. I jumped immediately into bed. Wife needed to go out and get my pain meds and some food. I could not get warm. Wife was gone for so long. I thought the pharmacy was across the street? I started to think that I was going into shock and that I was going to be sent back to the hospital with tubes put back in both ends and that Wife was in some parking lot lying bleeding. I was in as bad a state as I have ever been.
Wife came back after an hour and a half. I had started to warm up by then. As soon as I heard her come back, one fear was gone. She had bought some wonton soup for me and as soon as the warm soup hit with us together, I felt an almost instant transformation. We sat together in the living room type area of the suite, I with a heating pad. I was transformed and relaxed. I was out of the hospital and felt like I was back in the world.
It has been over a week since the operation. I am clearly on the mend with the swelling around the incision decreasing and a continuous but diminishing level of pain. You definitely know you’ve been through something. Physically it’s like they took your high performance V-6 out and replaced it with a 2-cylinder self-propelled lawnmower engine. My brain seems to have traded in it’s top of the line MAC for a 1980’s PC.
Emotionally and psychologically, it’s another story. How does one process and understand the consequences of doing something like this? The first few days after I was out of the hospital, I couldn’t even talk about the event without breaking into tears. Why?
I had made such a huge investment into doing this. I did not want to fail –did not want to fail. It has to have been the greatest personal test I have ever faced. I did not want to face myself and say that when the chips were down and someone else’s life was at risk, that I was to afraid to pull the trigger because of my own fear of dying.
What if it had been some outside influence that had prevented it like the scare with the heart stress test? That brought on another set of fears. When you publicly announce you are going to do this and you receive as much public support back, how do you go and tell everyone that you were rejected? That may seem like a petty emotion, but it was right up their on my fear list.
And there was the fear of what if something went wrong. What if the worse happened and I died or came out a vegetable?
During those first few days out of the hospital, there was this realization that none of these fears had actualized. I had done it. I had followed through, put my life on the line, given my sister a chance to live again. I had taken the risk in order to balance my karmic accounts for all the good that I had received. Nothing had jumped up to disqualify me. I would not be a person who talked a good game but never actually did it. I was healthy, recovering; my wife and her future lifestyle were safe. I don’t know if it was relief, joy, incredulity, or what but I was overwhelmed.
Then there is the influence that all of this has had on my family that I eluded to earlier. Just after I got out of the hospital my oldest brother arrived to assist in the transition. My Dad and two brothers were together to discuss how we would help my sister in the complicated process of establishing her new regimen. This is the first time all of us had been together since my Mother’s death four years ago. In the interim there had been fallouts between one of my brothers and I and one of them and my Dad. And none of us had been close to my sister. I can honestly say that I had thought all of us getting together was never going to happen again…but here it was…a reality.
I also have an unbelievable wellspring of gratitude fill my heart. Gratitude to my Wife who put her own wellbeing at risk because she knew that this was something that I felt so strongly about. Gratitude to God for having given me the opportunity to show what I was really made of. Gratitude to all the medical staff who in the clutch took care of my Sister and I. Gratitude to my family who all rose to the occasion to help even though I never asked or even thought about the consequences of my actions to them. Gratitude for all those who gave us support in whatever form from thoughts and prayers to the hotel people in Manchester. Gratitude that whatever the magnitude of this decision it was a small small sacrifice compared to that made by many, many millions and millions of others around the world all the time.
So what does one make of having gone through such an experience? I can’t say yet. It’s going to have to rattle around in my being for a while longer. I know I’ve changed. I’m not sure just how, but I’ve changed.
Getting home on Saturday had a bit of drama. We were visiting my sister in the hospital one last time before we left, when I received an automated message from my good friends at United Airlines.
“Hello. This is an automated flight update message from United Airlines. Flight 1196…from Hartford to…Washington, Dulles will now be departing at…4:30 PM…”
I quick mental check – I remembered that there was a 2 hour wait in Washington for our flight on to Albuquerque. And our flight was originally scheduled to leave at 2:30 PM. That meant no making our connection. We said goodbye to Sister and we hightailed it to the airport. There was about an hour of agonizing while I worked our options on the phone but ultimately we decided to get in line at the airport. We were fortunate to get a flight the goes through Chicago and still have our first class seats. I was wiped out on the plane ride.
Tim de Buffalo picked us up at the airport. I had him stop so I could give Pulisha a quick hug. Then on to our home where I promptly collapsed and had the best sleep I’ve had since I headed out on May 9.
Sacrifice and Purification
(Please note that this post is unabashedly spiritual in content. If spirituality is not your thing or turns you off feel free to take a pass.)
Well I spoke too soon when I titled the next to the last entry the conclusion. As a number of people noted, that post offered more in the way of question than answers. Now that I have returned home I have had time to reflect – what is the significance to me having made this decision and having gone through with it?
To understand what this has meant, requires an understanding of the spiritual concept of purification. If you know how they make metal, you know that we start with an ore subject it to great heat (smelting) until it melts (think blast furnaces). If we want to great an even purer form, we raise the heat even more (think making steel from iron) which removes the impurities. Most spiritual paths have a similar concept – that to achieve a higher level of spirituality requires purification – and the path of purification requires some kind of sacrifice. An example of this would be the monastic paths of renunciation in many traditions where the renunciate or monk sacrifices worldly pleasure for the discipline of a spiritual path.
The tradition that I follow emphasizes that the spiritual path is about purifying ourselves of a lifetime (actually lifetimes) of crap. If we are fortunate, this process can be short circuited slightly. This is through a process called Tapasya. Tapasya is a spiritual fire. It is sort of a spiritual blast furnace that gets rid of a whole lot of crap in a short amount of time. It is the fire of purification. You have to have reached a certain level of development in order to be able to withstand a Tapasya event just as an ore has to be processed and smelted before it can be refined. Tapasya is never ‘fun’. After all we are burning away unpleasant stuff.
Prior to the going to off to CT, I had had a number of experiences during meditation where I was getting the message that ‘I was ready’ that ‘I was strong enough to accept’. What I didn’t know was what was I in fact ready for and what was I strong enough to accept? Now I do.
There are a number of things in my past involving how I handled my relationships with loved ones that I have had lots of problems with. On the surface I have dealt with just about all of them. On the surface, the people that were affected by them have long since gone on and shown that in fact I did deal with the issues. But inside me, I have never been able to forgive myself for those pasts in spite of all the assurances through word and action from those involved.
When I got home and meditated in my own place on Sunday morning, I was suddenly aware that those guilts, those attachments were gone. They were cleanly and completely gone. Now it became clear what the meaning of this experience was. I had been given the opportunity to, of my own free will, make a sacrifice, a sacrifice of myself. And by making that sacrifice and because of my previous spiritual efforts, I was rewarded with the gift of Tapasya and had been able to remove the things that had been eating at me for decades. And on top of all this, this wave of Tapasya seems to have cleansed and healed the issues among my siblings and parent that have extended for decades as well.
I can tell you without embarrassment that the tears of gratitude were flowing that Sunday morning.
Now I think I really can conclude this Chronicle. I still need to heal. This whole long, long process has taken a lot out of me. But I see signs that gradually my energies are returning and my wounds are healing. Hopefully my Sister gets out of the hospital Tuesday morning. That will take a load off my mind.
I want to give my deepest thanks and gratitude to everyone who has assisted over these last few weeks. My Wife has been an unbelievable tower of strength and calmness. My brothers and father totally have stepped up to the plate and supported both my Sister and I. And all of the people all over the country and the world that have been thinking of us, praying, sending us their thoughts, calling, I cannot tell you how much it was appreciated.
Now the only problem is:
What the heck am I going to post on my blog that can hold a candle to this?