Here, I'll be adding updates to my condition and personal perspectives on my life and what's currently on my mind. Yeah, yeah, this will be somewhat self-indulgent. To that end, I'll put my physical update first and you can ignore the rest.
July 22, 2017
My God I'm tired!
This is just wearing me out. Honestly, I'm trying to stay upbeat but the constant pain and fatigue are getting the better of me. Also, I think that a lot of it is the heat. Here near Atlanta, we are having what is called "Code Orange Alert" days where people with compromised health should stay inside because of pollutants and ozone, etc. When I go outside, the heat and humidity just suck the life out of me.
Having to get the chair in and out of the van becomes even more of a chore. When getting into a hot van, I must remind myself not to take a breather after throwing my chair and myself inside because it's like a gazillion degrees and breathing is next to impossible. God bless air conditioning and the fact that mine works. Seriously, I couldn't be riding around without it, and so my first priority after loading myself is to get the van started and the A/C on! I was telling Terry, that if I had to choose between a van with a lift or air conditioning that I would have to take the latter.
The last couple of weeks, I have been looking at getting a replacement van and I thought that I had found one. There is no way that I can afford the payments, plus one finance company wanted to charge me 11.39% interest. There's profit and then there's usury. "Let's take advantage of the cripple because he has no resources and less choices." I know that that is cynical, but sometimes I feel like it. Not a great testimony, I'm aware. It's a dead issue now, anyway. We need to keep Terry's car going as it is burning oil fiercely.
While I'm at it, if anyone knows of someone with a lift van (probably because of a deceased loved one), they can donate it and receive tax credit for it. I'm almost certain that I'm right in making that assertion. I really need a van.
All of this, coupled with the happenstance that I have had little work lately makes Rich a somewhat depressed boy. I really need something to look forward to in my own personal life. Yes, I know that God is with me and "If you don't feel close to God, guess who moved." Things is just tough and persevering seems to be that much tougher.
June 10, 2017
To say that I am somewhat obsessed by my physical condition is probably on point. It seems that no matter what my personal desires are, what hopes and dreams I have, I crash into this "physical condition" barrier and whatever I wanted is cast aside. Desperately, I need to get out of this mode, but escape eludes me. Whenever I think I am gaining momentum, or approaching escape velocity, if you will, in order to break free, something happens and I probably end up in the hospital and begin recovery all over again. It is frustrating.
Truly, life would be so much more .... accommodating if I simply had a van with a lift on it. More and more, I find myself postponing or dismissing potential client calls because hefting that chair in and out of the van and propelling it manually is simply too much on me physically. There must be some solution to this, but I have yet to encounter it.
As to my present condition: It seems that the installation of the secondary fistula has caused circulation problems in my lungs to the point of speculating that I might have a condition known as "pulmonary hypertension". Thankfully, a right-heart catheter procedure dispelled this possibility; however, for a long couple of months breathing was most difficult. I have recovered, not to the level that I was before this complication, but I am much better. Things will never be the way that they were.
Poor ol' Elijah. He got caught in the middle of one of my "episodes." Monday is generally an uncomfortable day for me. It is the longest period that I have between dialysis treatments. Therefore, I attempt not to over-indulge with eating or drinking. There have been Mondays where I had to go in to dialysis for a supplemental treatment because my breathing was so impaired.
During the spring semester, I had a class in Jasper at 6:00 pm on Mondays. This Monday I had gone to Jasper in the early afternoon with Elijah in tow, so that he could take the test for dual enrollment. After the test and before class, I wanted to do something special, so he and I went to a much lauded barbecue restaurant north of there. I attempted to eat little, and thought that I had done a fairly admirable job of doing so. The dessert did me in.
After class, on the way home, I began having extreme difficulty breathing. I had purposed that I needed to get home and get on the oxygen machine as soon as possible. Upon getting down from the van, things became critical. I had Elijah go turn on the oxygen generator and meet me with the hose. My oxygen saturation was at eighty-five percent and I was panicking and gasping for breath. If I could get my "O-sats" up to ninety, I reasoned that I would be all right. When the numbers started falling, I realized that I did not have a Plan B. I gulped at Elijah to call 911.
In all of my sixty-one years, I had never before ridden in an ambulance. They had a turbo powered CPAP machine hooked up to oxygen, so that in a few minutes (it really did seem like hours) I was breathing pretty well. The hospital kept me for a couple of days to be sure that I hadn't had a heart attack as well. My cardiac enzymes were elevated, but with being in renal failure, they didn't fall as fast as they should.
I think that I am about recovered from that and am now busy teaching Summer semester down in Marietta. Once again, that recovery time is required. Even though I am not as hardy as I was, I can still cut the yard and I suppose that's something.
One ironically amusing side note to all of this: While trying to determine my lung status and waiting for tests, I had to go to the Emory Transplant Clinic for my status meeting, checkup or whatever. The nephrologist there, put me in a suspended status on the kidney waiting list, pending the outcome of the heart cath. My pulmonologist sent a non-equivocal letter to her, and I'm back on the list. This is something that one must fight on a regular basis with the transplant center. They want their candidates to be as viable as possible to receive an organ so that it is not wasted. Plus, they like to keep their success numbers up.
Okay, here we are taking it on a day-by-day basis. If you know someone that might be interested in helping with a lift van, please point them in my direction. Also, if you know of someone needing help with a website, I am available for that as well. These doctor visits ain't cheap.
As always, I know that I am blessed simply to be alive. Also, I have people that love me and would like this pain to end for me. I appreciate them and love my wife more with each passing day. Deo gratias.
March 17, 2017
Well, it's been a little while since I posted. Most of the time has been spent recovering from the bleeding nose and all of the subsequent after-effects. I'm still recovering, but not totally there, yet.
The nose bleed (which took two weeks or more before I could completely remove the packing) led to a sinus infection that went down into my lungs and caused inflammation limiting my oxygen and causing chest pains. I know, you're thinking the same thing I am -- "Really?" Well, it's the truth and I wouldn't have believed it if it hadn't happened to me.
The lung problem had my pulmonologist to prescribe prednisone for me and that just honked me up, trying to wean myself off of it. The first night after I stepped down from my initial dose saw me staying up all night. I watched a fascinating documentary on Nikola Tesla: Master of Lightning. Riveting. It's hard to sleep when you feel like you have mice running around in your chest.
The next time withdrawal reared its ugly head was at my son Lucas' house. This whole business has left me to where I am always short of breath and I have to sit still and catch my breath for a while before continuing on to the next task. Initially, I had questioned whether or not I should even travel to Alabama. But, you see, Lucas had just been blessed with his first son, ergo my first grandson. I don't seek to diminish any of my lovely granddaughters, nonetheless, there are four of them and he is the first male, so, what can I say?
Anyway, I was to sleep on the bottom bunk and was trying my best to do so when I was hit with an anxiety attack. Simply, I knew that something was wrong, but I didn't know what. At 3:00 am, I found myself in the kitchen, testing my blood sugar and constantly re-verifying that my oxygen saturation was adequate (which it always was.) Lucas came out into the kitchen and asked me what was wrong and I said that I didn't know. About that time, I felt the mice racing in my chest and figured out that it was the prednisone talking. Knowing that, I asked him for another blanket and went to bed, constantly re-checking my oxygen saturation and telling myself to shut up and go to sleep, which I eventually did.
Today, I'm feeling pretty well, but I am still short of breath and have to limit activity. It seems at my age that it takes a lot more time to recover than it used to. This breathing thing is really disturbing me. There are so many things that I want to do -- things that I used to do and can't do any longer. It is frustrating.
Nevertheless, I have much for which to be thankful. I have many people that love me and one in particular that makes life worth living. I desire to be thankful. Please, tell other people about this site. Thanks.
February 7, 2017
Life is .... eventful, anyway. I will be going in for surgery on my new fistula on the twentieth of this month, finally. They are going to install a graft from one vessel to another. This is real surgery, even if it is outpatient. I have to be put under. Afterwards, I will be useless. Anesthesia and I don't generally get along and it takes a while to wear off. The good news is that the old fistula is still working, so my dialysis is effective.
Last week, I must have received a hot dose of Heparin. My nose started bleeding on Friday afternoon and after six or seven hours, I still couldn't get it to stop and I had tried every trick my ENT doctor had told me to try. So at about one or one-thirty, I decided it was time to head out to the ER. What happened next was, I thought, hilarious.
I burst into Elijah's room where he was sleeping, dead to the world with his mouth open. I turned on the overhead light. "Get up, we have to go to the emergency room!" I announced. Elijah sprung out of bed, walked across the room and turned off his fan. "Get some clothes on," I continued, "It's twenty-six degrees outside. I'll be out in the van."
Braving the weather, I loaded myself into the van and started it up to try to get warm. After sitting there a minute, I noticed that I couldn't see any activity in the house. So even though it was a late hour, I sounded the horn with no visible effect. I dug out my cell phone and called the house. It rung until the answering machine picked up, so I hung up and called again. After three rings, Elijah picked up.
"Yessir?" he mumbled.
"Get dressed and get out here, we have to go!"
To which he responded, "Go where?" He had turned around, gotten back in bed and to sleep.
I reiterated the urgency of the situation. It seemed to hit him, at that point.
In a couple of minutes, he came running out in gym shorts, T-shirt and sneakers. I turned him around, reminding him that it was cold and in a few minutes he returned, appropriately attired. Teenagers. Gotta love 'em.
Well, I got out of the ER in just enough time to take Elijah home and go into dialysis. They had installed those little inflatable bladders up my nose (way up) that they call a "tampon." I'll go no further with that, only to say that it hurts like the dickens. I had a lot of trouble Saturday, getting any sleep.
That night I went to have it removed and sure enough it continued to bleed. They installed some type of device that didn't hurt as bad and told me to see my ENT on Monday. My superbowl weekend was somewhat diminished.
Life sucks, but thank God for something to laugh about.
January 20, 2017
My life seems to be a series of mixed blessings. Fears are allayed, but threats are intensified. To wit: I had been dreading the whole concept of rheumatoid arthritis since I had been told that the RA factor had been detected in my blood. My dread consisted of not wanting something else wrong, not wanting another doctor, and definitely not wanting any other medicine. This particular dread has now been eschewed; however, the revelation has its good and bad side.
A couple of days ago, I finally had my appointment with my new rheumatologist. She was an impressive individual -- knowledgeable, caring, patient and non-dismissive. She permitted me to list my complaints, then described to me what rheumatoid was and how it presents itself. I do not have rheumatoid arthritis. I had been believing that I had it due to the blood test. The blood test was most likely a false positive, caused by the fact that I have a history of sarcoidosis. That can lead to an errant blood result.
The diagnosis of the increasing pain, especially in my left knee was just exacerbation of an existing problem. Due to the fact that I have to stand (pretty much only on the left leg), lift the wheelchair into the van, then crawl up in there myself, my body is reacting to the wear and tear. The unnatural movements that it takes for me to move, push my chair and the like, is another part of what my primary care doc labels as decompensation. Just like my internal organs are showing the strain of my end stage renal disease, diabetes and emphysema, my external organs, i.e. muscles and joints are showing the strain, as well.
Oh, by the way. The prescription for the pain, since I have all of these varied conditions is Tylenol, in moderation of course.
So, there's nothing new, but the old stuff is getting older and weaker. I really need some relief.
Also, I had some disheartening news yesterday. In previous entries, I have discussed my new fistula, why I got it, and needing to swap over and to start using it because the old fistula is "crapping out". Lately, my dialysis sessions are not effectively cleaning my blood because of the fading fistula. It's veins are just worn out.
Yesterday, I went and had the new fistula examined via ultrasound and had it assessed to see if it was mature enough to begin dialysis. We discovered that the veins have constricted over the past few months and in order to use it, I will have another angioplasty or "shuntogram" performed on Tuesday. Yeah, well, I can hardly wait.
It's times such as these that I really feel defeated. It seems that no matter what I do, things both physiologically and "equipment-wise" get worse. It's as if I'm sliding backwards into an abyss. I feel like that I've been a "good little soldier" and have borne up under adversity and not complained too much (except for here, of course -- but I do need an outlet.) However, the glaring fact remains: Things are not getting better.
I don't know what it is within me that forces me to paint both sides of the house. What I've bemoaned above cannot be left without illuminating some other facts. First and foremost of these facts is that I'm supposed to be dead. I should not have made it out of the liver transplant back in 1999. Secondly, all of the doctors that I have seen conclude that I am doing much, much better than a man with my maladies should be doing. Finally, and most importantly of these facts is that I am blessed with my wife and children and friends who love and care about me. These people, and especially Terry, not only keep me alive, but indeed are the reason I care to stay alive. Life sucks, but I cannot ignore God's blessings.
No, thank you, I do not care to read a passage out of Job.
January 12, 2017
Carrie Fisher is Dead and I'm Not Doing To Well, Either.
I borrowed and modified that line from Lewis Grizzard. Elvis had died and it marked the end of an era. And where Carrie Fisher's death necessarily marked the end of an era, it did signify a bookmark in my timeline. She was my age, and forty years ago I was desperately in love with Princess Leia Organa. To now have to stop and survey the time that has passed is a sobering activity.
Granted, Ms. Fisher most likely weakened her body with drugs and, I understand, she had heart problems as well, still her passing seems to underscore my mortality. Daily, I am aware of my degrading physical condition. With the demise of Princess Leia, another part of me albeit a fantasy, is gone along with hiking and other things that I can no longer do.
Lately, I have been in the middle of applying for financial assistance due to my medical bills and contacting charities in hopes of finding a replacements for the equipment which has failed me. Honestly, I have had secret hopes that between teaching college, designing web sites, and my part time employment working with the networks that I could back out of the "needy" mode. However, yesterday I learned that the company for which I have been documenting networks has been acquired by another company. At this writing, I don't know where I stand.
One bit of good news: I saw my cardiologist yesterday and he said, "See you in a year." He verified that the chest pains that I've been feeling are due to the fluids building on my lungs between dialysis sessions. He says that I should not be too alarmed, that to be sure not skip a dialysis session. I never skip dialysis. With the inclement weather recently, I had to go four days between treatments and experienced some discomfort.
I realize how fortunate I am simply be alive. It's just that nowadays is more difficult to find a silver lining. As I've said in the past, "I desire to be grateful."
December 24, 2016
So, here it is the day before Christmas. I have much to be thankful for. Currently, I'm sitting in the first of two of the Christmas Eve services at All Saints Episcopal Church that my family and I will attend here in downtown Atlanta. My wife is an accompanist for the children choirs. I find that these full blown celebrations bring Christmas home in a special way to me. The traditional carols and readings are nostalgic and comforting. Honestly, I'm weary of holiday music. It dilutes the meaning of Christmas and the carols with the organ and the voices and the descants bring the season alive for me.
Though my physical condition continues to slowly degrade, I am most thankful for those pieces of me that are holding their own. I mentioned in my previous post that I was going for a CT scan. That was a six-month check up on that spot on my lung that we've been watching. There was no appreciable difference, so there's one less thing to worry about for another half-year. I'll take it. The rheumatoid arthritis continues to get worse and it makes me want to sit still and I really need to keep moving. I have an appointment with a rheumatologist on the 18th. Maybe she can help. There are, to my understanding, many forms of treatment for RA unavailable to me due to the kidney failure.
All of this is exacerbated by the van being without a lift and the death of the power chair. I would really have preferred these things to be unavailable when I was in relatively better health. As my health and abilities decline, I need them more. Nonetheless, I am quite cognizant of the fact that things could be much worse and am truly appreciative of what God has given me.
Merry Christmas everyone. Try to be aware of your blessings and enjoy them.
December 6, 2016
I have had a bad day and I am still trying to sort out my feelings about the events. Of course, I have no right to expect a rosy existence, especially in my condition; however, things seem a bit ... let's say "over the top" recently. It's forced me to step back and look at things.
Old complaints, continuing to plague me: The fistulas in my arms cause my hands to go to sleep and hurt while I'm sleeping, which interrupts my night. Last night I couldn't find a position where it wouldn't happen. Meanwhile, this cold and damp weather is exacerbating my rheumatoid arthritis and I'm in pain most of the time.
You know, I had planned not to address the arthritis, thinking that the only thing that it was doing was causing pain and I figured that I could put up with that if I didn't have to see another doctor and have to take another medication. My primary care doctor corrected me on that matter when I saw him recently. One of the complications of rheumatoid is that it causes vascular complications and with two fistulas, I cannot afford that. There are no rheumatologists available to me locally, so I'm searching out of town.
Anyway, I hauled myself out of bed this morning and went to dialysis. I threw the wheelchair up in the van, and got there early enough to get the handicapped van parking space. When I weighed in, I was of course, heavier than I wanted to be and told them to take too much off of me. In my desire to get back to my goal weight, I hadn't accounted for the fact that I had been constipated over the weekend. There simply wasn't that much fluid to remove.
About an hour before I was completed, I began to have strong muscle cramps in my left leg. That's not usually too alarming as my left leg is always the area that cramps first before it moves on through the body. Therefore, I didn't signal them to stop the fluid pull. By the time I realized that the cramps weren't going to move, I was having to hold my leg in the air and experiencing a lot of pain, sweats and nausea. It was thirty minutes or more before the saline that they returned to my body began to take affect and the cramps began to subside.
While holding by puncture site to let it clot, I was so fatigued that I fell asleep momentarily and my hand dropped. Luckily, I had clotted so that I didn't make a mess. After packing up and weighing out, I went out to the van, threw in the chair, and left. I was pretty drained.
After nursing a cup of coffee at McDonald's until it was almost cold, I went home and just sat in the van, really not wanting to get out. The rain had finally stopped, but it was still cold and miserable outside, which kinda matched the way I felt inside.
When attempting to lift the chair out of the van, I didn't lift high enough and the wheel caught so that everything tipped and the wheelchair and I landed on the wet pavement. Both of us spilled out all over the place. Had it not been wet, I might have been content just to lie there a while, but my jeans and sweater were getting soaked and in that I didn't feel any injuries, I commenced to try to get up. It wasn't as easy as it had been in the past.
A very nice young man driving an exterminator truck saw what happened, pulled in the driveway, was quite alarmed, and helped me and the chair into an upright and locked position. I thanked him profusely and wheeled in here to the office. Thankfully, nothing broke on me or the chair, but I think that we are both bruised to some degree. I know that I hurt a bunch.
Since then, I have been re-evaluating the experience, my life, pain in general, the future of it all and, although not in a "pity party" per se, I would be lying if I didn't admit that I was contemplating some substantial apathy at this point. I'm just tired of hurting and tired of everything being so hard.
I'll be better tomorrow. I'll have to. I have a CT scan.
November 25, 2016
Physically, I am doing pretty well, all things considered. Many of the fears I had about my degrading condition have not been realized. In fact, it appears that I have recovered for the most part. Still, in order not to have a repeat of effluence, or where I start having breathing and heart problems due to fluid backing up on me, I must be diligent. This means that I need to continue to lose weight and to have as much fluid as I can tolerate removed during dialysis. To this end, I am weighing less at the end of treatment than I ever have (outside of the initial onset of my renal failure), and continue to lose. My "dry" weight now is 110.7 kilograms. For those of you still shackled to the English system of measurements, that's about 243 pounds. The important thing is to continue the loss and keep fluids down.
The physical problem plaguing me now is my rheumatoid arthritis. With the onset of the colder weather, the pain in my joints and back have increased drastically. The lack of a lift on the van hurts me in two ways. One, the pain associated with having to throw my manual wheelchair up in the van, then pull myself up. And two, the fact that I can't take my motorized chair and have to push myself around in the manual chair. Nonetheless, I am managing.
Part of maintaining my marriage is setting aside time and resources for Terry and me to cultivate our relationship and to spend time with each other, no matter the maelstrom swirling about us. A couple of weeks ago, she and I attended "A Weekend to Remember", put on by Family Life Ministries. This session was held up in Chattanooga. The next is being held down in Atlanta and they hold them all over the country. There are not enough superlatives to express what it meant to us and our marriage. I encourage every married couple (and those engaged to be married) to attend a session somewhere.
With all the stress being generated by my illness and our financial situation, not to mention other things like Terry's pursuit of her doctorate, we must be careful and intentional in our maintenance of our marriage. We believe that not only is our relationship ordained by Christ, but that he is a daily partner in its operation. We must be faithful to each other and to him with our commitment.
In this Christmas season, let's not forget why we celebrate and how blessed we are.
October 24, 2016
September 21, 2016
It's been quite a month and I wish that I had more positive news.
First, I had the new fistula put it. This was a different style and it left me with seventeen staples in the crook of my left arm, which were taken out a couple of weeks ago. Still, it is sore to flex and I don't have all of my mobility back. I may never.
This was fully realized about a week or so ago at a department store. I was looking through the closeout racks at shirts and pants and I had to stop. My arms were too tired to hold up any longer. I think I predicted this type of thing in my last post and it has come to pass. It probably bothers me more than it should.
Anyway, my physiology is changing and I think that what little function was left in my kidneys is beginning to wane. I'm needing less insulin which indicates there is less flushing of the insulin that I inject because the kidneys aren't doing it anymore. It's disturbing to wake up at one-thirty in the morning with a blood sugar of forty-two. Also, and more importantly, I am beginning to retain more fluids. Fluids back up and cause breathing and heart congestion.
This leads to my discomfort and difficulty in breathing. You see, the lift has completely died on the van. That means that I can no longer carry my motorized chair. The only thing that I know to do is to take off the platform and now manually open the doors and lift a manual chair myself up into and out of the van. This will be difficult to do and getting the platform off will be a trick unto itself.
Couple this with money and time pressures and you end up with another "cardiac event" that I experienced Monday night. The chest and arm pain, along with the shortness or breath and a pulse of 110 to 120, prompted me to ask Terry to take me in. When I got into triage at the ER I threw up. That's not something I did last time.
They gave me nitroglycerine and put me on a device called a "Bi-PAP" machine which forces air down your lungs and pushes the fluids back so that you can get oxygen. Once they take you off, the fluids start to creep back, but I was okay evidently and only had to spend a couple of hours on that monster. Since I have fistulas now in both arms, they had to put the blood pressure cuff on my leg (strangely painful) and establish my IV in my neck (painful and disconcerting.)
I spent two nights in the hospital, got dialyzed there and had another heart stress test. It feels like your having the "cardiac event" all over again for about twenty minutes. I just really hate it. The test revealed that there was no further damage, so I guess that I am extremely fortunate. I wish that I felt more grateful.
So I'm home with another set of hospital bills and a cripple van for cripples. I really don't know what to do and my pace between teaching two classes, my contracting work and website work are part of the stress that comes with knowing that I can't afford to drop anything. Also, Terry has enough on her and doesn't need to deal with my problems.
All I got is perseverance. God give me the strength I need to keep myself together physically.
August 21, 2016
Well, here we go. My fistula is going to fail. There's not a lot of time left for it, so the surgeons are going to create another one in my left arm. You have probably heard some of my complaining about the fistula. It was put in my dominant arm and has weakened it to where my arm gets tired just washing my hair and my hand falls asleep, especially when driving, and so on.
Now, I get to do the same thing to my left arm. Pushing myself around in a wheelchair is going to be ... challenging. Suffice to say that I'm not looking forward to this. Pre-op is tomorrow and the surgery is on Wednesday. Otherwise, I'm doing okay physically. I have started using oxygen during dialysis, but that's because it isn't practical to bring my CPAP machine to the clinic. I sleep reclined during the procedure (when I can) and breathing gets difficult.
Changing gears now to ranting or philosophical mode: I struggle with being judgmental. Hopefully, it only happens in my head. I pray that I haven't said anything rude to anyone. But you know what it is -- it's those things that pop up in your head when a woman unflatteringly wears spandex or you see a guy out in public and think, "So you looked in the mirror this morning and said 'This is a good look for me!'" Tacky stuff that you would never say out loud.
Well, I don't need to think it either. My constant prayer is that Jesus would let me see people through his eyes -- that I view everyone as one of his children. I know that I'm no prize, so I don't think that I'm putting on airs, but it's a struggle.
Anyway, I was sitting in dialysis this week, observing the clientele and noticed a young woman in the corner being hooked up. Normally, it's just us old farts either dragging in or being wheeled in for treatment. When I saw her, my heart went out to her. Suddenly, I felt all of the pain, frustration, resignation and suffering in the room. I see all of this regularly in the faces of Alvin, Jamie, Kim, Aletha, Evelyn and all of the other folks whose name I don't know. I hear it in their sighs and in all of the "Good Mornings" and "Have a good weekends" and my heart just breaks.
I can feel all of this for them because I can feel it for me. I can relate. I need to relate to all of God's other children on that level. I need to feel for them, especially when I'm judgmental. We need to relate to one another and see each other through His eyes.
July 21, 2016
Yesterday, I had to have my fistula "cleaned out". My fistula is a surgical construct on my right upper arm where veins and arteries have been re-routed so that the dialysis staff can hook me up to the machine via two 15 gauge needles. It kinda makes me feel like Frankenstein's monster, but it is necessary. Without the fistula, I would have to take dialysis through a port access in my chest. I had this before my fistula healed enough to use. During this time I couldn't shower and the access is prone to infection.
Anyway, we are doing a fairly unnatural thing and there can be problems with the fistula. Once, I guess about a year and a half ago, the fistula clotted and I had to be admitted to the hospital to have it cleaned out. Since then, I have had to go in for a process that they call a "shuntogram". It's beyond me why they call it that. Simply, the blood vessels in the fistula constrict and or take odd routes in my arm.
To correct this condition, the vascular surgeon runs a wire up my arm to establish a route, then inserts a balloon up into the vessel and inflates it to widen the vessel. This is known as balloon angioplasty. It seems that this lasts, for me, about six months.
This time, I was told that the fistula is in pretty bad condition and should I ever form clots in the fistula, it will have to be abandoned and a new one created somewhere else. So I suspect that I can just plan on roto-rooter every six months. I sure don't want another fistula.
They had to put it in my dominant arm, because my left arm has my pacemaker lead running through it. I really don't like my dominant arm compromised like this. My right arm gets tired easily, and not with just hammers, screwdrivers and pushing my chair. In the shower, I have to let my arm rest when I'm shampooing my hair and I have to prop up my arm when I shave.
I suppose that the number one solution to this is to get a kidney transplanted. It follows then, that the best route to that is prayer. Your prayers and support are always appreciated.
July 4, 2016
Well ... this is embarrassing. I've been asking everyone to send me a message via the contact page and, evidently, I hadn't ever tested it. So if you have ever sent me a message, I'm not ignoring you -- just stupid. It's fixed now and I apologize.
Tomorrow is Daddy's birthday. He died in 1985 from lung cancer at the age of sixty-three. My birthday was just a few days ago and I posted this on another site:
We constantly and, most likely subconsciously, compare our lives to our parents. As of this morning I have to live three years, five months and seven days more to live as long as Daddy. Now whereas I intend to surpass that by many years, that irrational, self-imposed limit hangs over me, primarily in my subconscious. It's not as if I'm the picture of health. I am thankful to have a gracious and loving God and the love of a good, good woman to give me incentive and to help quell the dark thoughts. Deo gratias.
Have a happy Independence Day.
June 15, 2016
Finally got a call from my pulmonologist. The area in my lung that they were looking at in the PET scan showed no significant uptake, therefore nothing "sinister" is going on at this point. I'll have another CT scan in six months to look for changes.
I categorize this under "No news is good news." I don't wanna be pessimistic, but I would have much preferred to hear, "There was nothing there! We were wrong!" I'll take what I can get, but in the back of my mind I know that area of "fullness" is there and something else to keep my eye on. And I am thankful that whatever it is or can become, I don't have to deal with it now.
Let's finish today. Tomorrow is tomorrow.
June 13, 2016
Well, I had a CT scan and evidently that didn't help them. Friday, I went into Atlanta and had a PET scan performed. In a PET scan they inject you with a nuclear uptake agent, in this case (and most cases, to my understanding) they use Fluorine-18 in a glucose carrier. What happens is areas that suck up the glucose will show a higher concentration of the fluorine, which will show up on the scan. Tumors suck up glucose like an iPhone sucks up band width, so if that area in my lung is a problem, it should light up on the scan.
Well, I suspect we'll see. My best coping technique is just not to think about it. Seriously, there's nothing that I can do about the matter, so why waste energy on it? God has taken care of me so far and no matter the results, I know He is with me.
I'm just so tired. Grateful as I am for work, I feel wrung out. I teach at a local vocational/technical college, build websites and configure network monitoring software for a local company. I cut the yard, run the kids to work and activities, try to keep up with the kitchen (thank God for the help I get), fix the mower, fix the lift van, and fix the wheelchairs. Oh, and let's not forget dialysis three times a week. I try to prop up Terry as she has taken on more than she should. If it were not for her, we'd all fall apart. Through all of this, I carry the fear that my health is going to fail, putting us all in jeopardy.
But let me reel this all back in. Today, I had lunch with a good friend who I hadn't seen in over a year. We had a good time reminiscing and catching up. At the end, I told him that I was truly blessed. All of my support systems (van, chairs, etc.) are falling apart and doctors tell me that I am better than my problems should let me be. This is God's blessing that I am doing so well. Think about my best friend and wife who loves me, wonderful children, good friends, great medical care and a comfortable place to rest. I am so much more fortunate than so, so many people.
I just have to persevere.
May 20, 2016
When I saw my pulmonologist, he did say that he didn't like my chest x-ray. And although my breathing is good, he wanted a better view of a place on my lung. I had a CT scan done on Monday. The doctor called on Thursday and told me that there is something there. I will be having a PET scan done next and based on that test, may progress to a bronchoscopy and a biopsy. The spot is on the right side of my lung on the hilum, near the heart and lymph nodes.
I'm not liking this.
May 11, 2016
It's been a busy month and I suppose the bulk of my obsession this month has been worrying about my health -- no big chasms, just a lot of little stuff, i.e. "can I do this", "does this hurt", "I better not ..."
In the meantime, life trots on. I run a glorified taxi service for the kids, it seems. That has certainly kept me busy with concerts and rehearsals, scout meetings and camping preparations, etc. In the midst of that and dialysis, I have been authoring a website for a client and learning a network utility for another client. Yes, I have a couple of clients and I'm very grateful to God for that. It's not much money, but it does help out. Also, I've finished my semester teaching and have a class this summer and two in the fall.
And doctors. I'll always have doctors. It appears that my cardiologist is pleased with my status. He said "See you in six months." A couple of years ago, a couple of pulmonologists said that I had COPD. Last week I saw my new pulmonologist (I had to change because of insurance), and after a full panel of pulmonary function tests I was informed that I did not have COPD. He said sure, I have emphysema but that doesn't justify a clinical diagnosis of COPD. I'm glad to have one less something. "See you in a year."
Last week I made my annual trip to the dermatologist as well. It seems that he takes great joy in pointing out all of my "old man age spots." He sawed some growth off of my right arm and sent it off to the lab. He called the house with the results, once again making reference to an "aging" growth and that it was pre-cancerous, but no worries. "See you next year."
Well I'm glad to have navigated that phalanx. So here I am, trying to get through to the transplant. One week at a time. Praise God.
One little factoid that I would like to illuminate: I read last week from a report issued by the Center for Disease Control and Prevention, that the third leading cause of death in the United States is medical error. A chilling revelation in light of the fact that I am in almost constant interaction with the medical community. Brrrr!
Finally, I am not sure why you would, but if you are reading these entries, please take a minute and go to the contact page and let me know. Criticism welcome. Thanks.
April 13, 2016 – The Cardiac Event
Well, things surely took a nasty turn. Last Friday, a few hours after my last post, I experienced chest pains and an intense pain radiating down my left arm to my elbow (the elbow pain was a lot worse). Everything appeared right for it to be a heart attack and after a couple of nitroglycerin tablets under the tongue and about 5 minutes, I was okay. I was scared to death and crying. Terry was scared to death and trying not to cry. It was a harrowing scene. I don't suspect that I was a model patient.
So now the next question was, "What happened and why did it happen?" Well, first off, they tell me that I didn't have a heart attack, i.e. no heart damage. Circulation was strangled for a while but everything is okay. Without the quick-witted and sometime illegal driving tactics of my wife, it could have been one.
In 2006, I had a stent placed in the left anterior descending vessel of my heart. According to my friend Randy, (I guess I should have confirmed with my doctor), it is common for subsequent blockages to form near the installed stent. Friday, I had an 80% blockage before the stent and a 75% blockage afterwards, if I read his handwriting correctly on his diagram.
To complicate this scenario, the hospital had lost my records. Evidently, I didn't exist before September of 2015 and the phone number and address for me was from over 20 years ago. This led to prolonging my hospital stay with, yes he needs a stress test, no he doesn't and should we schedule a heart catheterization or not. All this time I'm not being fed due to the changing status of procedures. Not fun. Finally, one of the floor physicians did a cross reference on my name and found my records.
I went through that God-awful chemical stress test, then a heart catheterization on Monday where they placed two more stents in my LAD, one before the existing stent and one after it. Also, we determined that the replacement of the pacemaker on Friday was entirely coincidental.
Praise God, I'm still alive! I want to thank everyone for their prayers, concerns, calls and cards.
So, since I didn't have a heart attack, let's just call it the "Cardiac Event."
April 8, 2016
Today, they replaced my pacemaker. I thought about posting a picture, but I'm not sure that that would add anything. So I bought a little time and will -- scratch that -- rather, have the opportunity to live a little longer. The same is true of getting a kidney transplant: not a guarantee, but an opportunity to live longer.
A philosopher would say, "Live longer? But to what end?" The opportunist would say, "Who cares? Gimme a chance!" If we consider the philosopher we must consider that the "end" to which he refers offers the continuation of existence with pain. My physical reaction to effective pain relievers, i.e. narcotics, is adverse. They are ineffective on the pain and I throw up. God has given me a high tolerance to pain, but it still hurts. Daily, I endure the concomitant pain of missing one hip, plus the erratic appearance of rheumatoid arthritis. This newly introduced player in the game, of having my chest re-opened to insert a new device, just has to get in line.
No, I think that I choose the latter. Even at my rapidly advancing age, there is still a possibility that I can make a difference. There are things in this universe yet to discover. There are loved ones who may need me from time to time. And of course, there's always a new episode of Jeopardy! to tackle.
Ultimately, however, there is the distinct possibility that God will use me again. He has in the past, much to my amazement. And the future only promises the opportunity to be used again, not the certainty. Also, He doesn't promise any sort of future.
When I received my liver transplant, I did not consider the procedure successful until I was back home, piled up in bed with loved ones. I knew then, as I know now, that the concept of the future is tenuous, at best. Having almost died, I know that every day is a gift. Now, I'm not so pretentious as to tell you that I spend every day in the most effective manor, as I should, I will tell you; however, that I do appreciate each day, whether or not I took advantage of it.
I want to live and I want to make a difference. I hope that you do, too.
March 24, 2016
It's been almost three weeks since I updated. By this time I would have hoped that my pacemaker was replaced, but insurance companies and doctors being what they are didn't allow that to happen. The change-out is now scheduled for April the eighth. Let's just pray that I have enough battery to last.
Through herculean effort, I changed out the casters on the back of my power chair yesterday. It was necessary to lie in the floor to make the exchange. The existing wheels were in such bad shape that when I took them off, ball bearings scattered in all directions. The nice thing about the new casters is that they are round! The existing ones (one in particular) had chunks of material missing. I have been dropping plastic (or rubber or whatever) pieces like breadcrumbs for weeks now.
Also yesterday, I had planned on having the oil pump replaced in the van. This is a fiendishly expensive process due to the labor involved. The good news is that I didn't have to spend all that money. The bad news is that my mechanic tells me that with the age and mileage on the van, that it is not worth putting the money into. The oil pressure seems to be maintaining an operable level. I really need to slide another van under this one.
The determining factor here is not the engine. This is the second engine and I don't mind putting a third one in it. The issue is the lift. I have had to have the control board taken out once and re-soldered to keep it working. They don't make parts for this lift anymore and once the board fails, the lift would have to be replaced. The metal fatigue and frame of the van would not allow that, so the whole vehicle would have to be replaced. Please pray about that.
March 4, 2016
You may have read on my timeline that I have a cardiac pacemaker. When I got it installed initially back in 1999, the doctors couldn't tell me exactly why I had to have it, but when your heart slows down to twenty-five beats a minute on a semi-regular basis, I suppose the only alternative to a pacemaker is to haul a Sears Die-Hard battery around with you. Anyway, I had it replaced in 2007 and now it's time to replace it again.
Currently, the pacemaker is in "ERI" mode which means you have about sixty days before the battery conks out. I have an appointment with my cardiologist on Monday and they've scheduled me for an echocardiogram. I don't know why that test is necessary and it worries me a bit; however, I don't want to be someone who borrows trouble, so we'll just wait and see.
A real praise today was that I actually got my wife, Terry, to lie down and take a nap with me (and the cat). She works so hard with two part-time jobs and working on her doctorate that she never slows down until she collapses, and that's not good. I watched a message a couple of weeks ago from Jeff Henderson, a pastor at one of the North Point churches on the biblical properties of rest. We all need time to withdraw and recover and Terry's putting it out there everyday, full-throttle. God bless her.
Earlier this week, I sent out emails to most people in my contact list asking them to look at this site. I've gotten some good response and I encourage you to share this address with somebody. Thanks.
February 29, 2016
Today, I went ahead and added a contact page so that if you had some criticism or question about me or the website, you could. Physically, I'm still doing well, all things considered. My rheumatoid arthritis flares up a lot lately, and today is no exception. I don't understand what ticks it off. Due to the medical costs, I have yet to see a rheumatologist; however, I am not anxious to take any more medications, either.
The essay that is included today explores our need to find what makes a difference in our lives. 'Hope you enjoy it or, at least will make you think.
What Makes a Difference
July 10, 2015
I had a good day last Wednesday. Early, I had breakfast and fellowship with a good friend and then afterward, I went to the "Y" and exercised in the pool. Having had my hip removed some eighteen years ago, my life is consigned to a wheelchair and the pool is the only place that I can walk. Walking is very cathartic: it allows me to straighten out my body and limbs, decompress my spine, let my organs fall back into place and strengthen my heart and lungs, which are in somewhat disrepair as well. Perhaps an increasing need for this exercise is my rheumatoid arthritis. Getting the joints to move decreases the pain and aids with mobility.
Wednesday, however, was markedly different.
I had had a good, extended walk, then pulled myself out of the pool and flopped over into the Jacuzzi and asked the lifeguard to "hit the button" for me. As usual, I positioned different joints and areas lacking joints in front of the jets to be massaged. Once finished, I took to the arduous task of pulling myself, standing, up the steps via the handrail, and to my waiting wheelchair. Ordinarily, this is substantially painful for me and I must take my time while breathing hard.
It was different, this time. There was little or no pain. I even stood there at the end of the handrail much longer, letting the water drain off of me before getting in my chair and heading for the locker room. Getting in, through, and out of the shower was near effortless, relatively speaking. I reveled in my mobility and got dressed and headed out.
Since then, I have been searching my memory for something different that I had done, some clue as to why I felt better. What had I eaten previous to this? What had I not eaten? How did I sleep the previous night? How had my dialysis session on Tuesday gone? I sit or recline in a chair for more than four hours for each session and I must sit (or halfway sit) on a pillow to avoid pain during a timespan where I really can't move or adjust my asymmetrical hips. Had that made the difference? Three or four weeks prior I had given up Sweet-n-Low. Was that it?
We all, in some form or at some level, are dissatisfied with our situation and are regularly looking for something that makes a difference in our lives. That seems to be the human condition. We are not happy with our financial status or our emotional status or our physical status and it is as if we have a constant search program, running in background, looking for that edge, or panacea, or solution. As I said, this is common, but there is another restlessness that many of us have.
Christians look for what makes a difference in our spiritual lives. There was a needle-point work in a pastor's office that I saw early on after the beginning of my salvation. It said, "If you don't feel close to God, guess who moved." Those who have found out that that hole in their heart is God-shaped, constantly want to fill it with more of Jesus and are looking for that next step that will bring them closer to Him.
Speaking for myself, finding that next step, or that epiphany or whatever it is, is both wonderful and frightening. It illuminates another section of the path to Christ and then challenges you to stay on that narrow and sometimes steep path, as well. Continuing to speak for myself, (because I do not pretend to know how this manifests itself in others,) it causes deep introspection, almost as if this knowledge or revelation is an object that you constantly turn over and over in your hands. I find myself asking myself, "Here's what I used to think. How does that live up to what I know now?" Socrates said that the unexamined life is not worth living. That is true of our spiritual life, especially.
In Philippians 2:12, Paul admonishes us to continue to work out our salvation with fear and trembling. Looking for what makes a difference in our spiritual life is just that. To examine your spiritual life, check and see when the last time something made a difference and brought you closer to God. How have your reacted to it, and how has it made a difference in your spiritual life? --Your financial or emotional or physical life? Like the sign said, "When you don't feel close to God …"
By the way, I never figured out why I felt so good Wednesday. I'm thankful to God for that day and look forward to another one.
February 17, 2016
Well, I didn't wait long for my update, did I? I called the Emory Transplant Center today, as it had been six months. They verified all pertinent personal and medical information, informed me that they had been receiving blood samples properly and then informed me that I have now been on the waiting list seven hundred, seventy-one days. That seems like a long time.
This next essay was written better than a year ago:
Memory of Pain
Monday, January 26, 2015
Although I felt that I should get these thoughts down on "paper", when I started to write this I was washed with an intense feeling of déjà vu. I think somewhere I had written about this, and even stumbled across what I considered to be a well written essay on the topic and thought for a minute, "Hey, maybe I wrote this. This is pretty good." Then I ran into a reference to the Maharishi Yogi, and discarded the idea that it might be mine. I'm not near that erudite.
The reason that this topic is piqued is due to our worship services. The lighting system for the worship music has automated/programmed spotlights washing the stage, then out into the audience. As I perceived one of those momentarily blinding flashes making its way towards me, I instinctively brought up my hand to ward off the light, anticipating pain.
Several months ago, and for a period of four or five months, I developed migraine headaches. I consulted several medical specialists and could never determine a cause for the malady. About the time that I finally was prescribed something for the relief or prevention of the debilitating headaches, the headaches started to diminish on their own. This had been a period of constant pain that had crescendo'ed and diminished leaving in its wake only my gratitude for its passing.
Therefore at worship I was not reacting to pain, but the memory of pain. It seems to me that it's that memory that keeps us out of trouble. I know that when one of my toddlers would reach out for something possibly disastrous, that I would not hesitate to slap his or her hand, causing pain, to prevent even more pain. We must realize that God does the same for us.
There's an old, lame joke that goes, "Doc, it hurts when I do this", to which the doctor responds, "Well then don't do that!" Sometimes, I think we ignore the doctor. There is an overwhelming testament in society that we ignore the built-in warnings in our bodies that God gives us.
It would seem that that initial hacking cough that presents itself on the very first drag of a cigarette would have pre-empted a national health travesty that we experience from the scourge of smoking. That cough certainly didn't keep me from a seventeen year, two and a half pack a day, habit which took its toll on me. Even though I quit smoking some twenty-seven years ago, my diagnosis of emphysema still exists. Consequences of ignoring pain.
The apostle Paul rejoiced in his discomfort with the "thorn in his side." In 2 Corinthians 12:9, he says, "Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." The fact is, that pain is a most effective instructor.
Nonetheless, we eschew pain -- and, aside from the obvious, I believe for good reasons. My productivity, not to mention my generally sunny demeanor are substantially suppressed when I'm experiencing pain. Trying to concentrate on a task is hampered when you have to operate with one eye closed due to a migraine. Also, it's difficult to laugh with your children when you feel as if your hip will, indeed, separate itself and fall off at any minute.
This educes the personal conclusion that the benefits of pain, for the most part are limited to two conditions: when you are doing something stupid and as a reminder so that you don't do something stupid, again. Pain serves a function in our life and development and God uses to our good and His glory.
So where I cannot embrace pain, as it seems Paul did, I can most certainly appreciate pain. Especially when it exists in the past tense. So watch for me to play peek-a-boo with the spotlights.
February 13, 2016
About six months ago, I became active on the Emory Transplant Clinic's waiting list for a kidney. At that time they said, "Call us in about six months." I need to do that soon.
Here's my first ranting:
My lift van has about three hundred seventy thousand miles on it. When I was enumerating its deficiencies, I began to see parallels between it and my life. The only connection that I couldn't draw was the remote control system failing on the wheelchair lift. I suppose that it's just my cynicism, but I've never felt much control of my life these last sixteen or seventeen years, remote or local, therefore I don't feel that I can relate.
The first thing one would notice would be the big cracks in the windshield. Having replaced it twice already, it would seem that just as soon as I installed a new one, something would cause a new crack to appear. My outlook on life could well fall into that category. Things have happened and my vision of the world would get obscured by cracks appearing after damage, and those minute fissures would grow over time and stress. Adopting a fresh perspective on life would seem futile, because it seemed that there was always more damage and more stress and more cracks. Best to leave it the way it is for now and try to ignore the distractions at this point. Perhaps someday things will look better.
The chair lift has about run its course. Getting in and out is noisy and slow. As I mentioned, the remote no longer works, also the safety flaps no longer work and the doors, many times, have to be coaxed to close. Finally, there's no repairing its control board, because they don't manufacture it any more. What an appropriate comparison for my musculoskeletal condition— especially the noisy and slow part! Between things not being all connected, my aging and my arthritis, I could work this metaphor to death.
One or two cylinders in the engine miss on a regular basis. I have a couple of coronary problems, myself, to wit: cardiomyopathy, bradycardia (hence the pacemaker), PVC or premature ventricular contractions, and a stent to keep the blood flowing to the heart. Why, I just put a bottle of fuel injector cleaner in the gas tank last month!
If I let go of the steering wheel, the van has a tendency to run off of the road. Ask my wife about the keen parallel there! I think that the van has a dead spot in the starter. Same here! Dragging myself out of bed at five in the morning for dialysis is just plain getting harder and harder to do. The body on the van is dinged and rusted. Have you seen me lately? I can go on and on.
The one thing that I fail to match is my dialysis. The van, despite its problems, is doing pretty well and whereas I need that five hours a day, three times a week service in order to keep operating, it doesn't. The van is a blessing and a gift from God and where sometimes I do cuss it because it fails, to meet my expectations, I don't complain about it. Every day is a gift.
Nonetheless, there was one thing that prompted me to write this. The catalytic converter went out on the van a few years ago, so the "Service Engine Soon" light stayed on. When the van started missing, the light began to blink as I drove it. That made me nervous, but there was really no choice because there was nothing that I could afford to do about.
Well, the other day the "idiot" light went off. My first reaction was of surprise and delight; however, the more I thought about, the more I knew that I was doing little more than engaging in a bit of personal delusion. I knew what the truth was, so I turned off the van and turned the key to the "on" position where all the panel lights light up so that you can check them. There was no light for "Service Engine Soon." It had burned out. In some sense, I feel that I'm afraid that my indicator might burn out, so like the van, we can only suspect that something is wrong, but never know until it is too late.
That is just one of many fears that I carry on a daily basis. We all carry fears, one of which is the unknown sneaking up on us. The good news is that I know the truth and I suspect that you do, too. Each and every day that we "start up", we are blessed. As bad as things look at times, we can always find someone who has it worse off. The one thing that we must remember, however, is that God is in control and he loves us. Let's never lose sight of that through the cracks.