Here is a long but entirely necessary post about how 2013 treated Jeanette and I.
Every single word of it is truth. Pinky swear, cherry on top...the works.
If it's just a tl;dr wall of text to you, please understand that I composed it and posted it out of loneliness and fear in this current moment. More truth: I have done my utmost to be self-sufficient during this time, and have actually made myself proud all things considered. Here is hoping that we'll be back to a semblance of normalcy and more stable health this year, with the help of better medical care.
Oh, and a great and blessed new year to all of you here irrespective of how you feel about Jeanette and I.
Here goes:
http://www.democraticunderground.com/10024309273So, let me tell you about my 2013. I guess in my life this would be defined as the year of "that which does not kill me will…maybe…somehow...sort of...I suppose...make me stronger." I managed to survive – among other things – a near-death experience, the amputation of a limb, blatant medical malpractice, trying to maintain sanity amidst constant pain, and now having to witness my dear sweet wife of over 10 years attempting to cope with severe medical issues of her own. By the way, have I mentioned that all of this has gone on while we've tried to eke out an existence living well below the poverty line?
Yeah, 2013 was one awesome year.
First, a quick introduction and a bit of back story. I am an emotional food addict – just one among millions – who has paid the price with a lifetime of weight and health issues. My weight peaked at approximately 520 pounds as of about five years ago. Before this I became severely diabetic, and developed circulation problems in my legs which required repeat hospitalizations for cellulitis infections. As a result of this, my mobility steadily declined until I was almost completely unable to walk. If not for the presence of someone in my life whom I loved with every fiber of my being, and who loved me every bit as much, I very likely would not have even cared about my fate. But that power of love is what convinced me that something needed to change, and somehow I was going to stick around. My solution was to adopt a plant-based diet, low in calories and fat but high in healthy carbohydrates and nutrients. Over a period of about four years, my weight got as low as 285. However, because I was uninsured during most of this time, I was unaware that my steady weight loss was not enough to reverse or at least slow my diabetic condition. More about this in just a moment.
My wife, whom I met 2002, had been grossly overweight years before I met her. She stands about 5'3" to my 6'3", and at one point in her life weighed about 250. She was poor, and worked at several menial jobs including one stint at a chicken processing plant near Enid, Oklahoma. Her diet of choice consisted of chicken which she could buy wholesale, and junk food such as Cheetos or chips. Her weight also dropped, until by the time I had met her she was down to a much more healthy range in the 160s. Following my lead, she continued to slowly lose weight and is currently about 145. However, she did not know that she too was in the throes of severe diabetes. In recent years, she has received minimal medical attention for this, but lack of truly adequate resources and medications now has her starting down the same horrible road I have traveled.
Getting back to my experience this past year: as I previously stated, I was down 285 by February and was awash in excitement thinking about being below 300 for the first time in over 20 years, and how awesome I was going to feel when I finally hit my preliminary target weight of 225. But, the most frightening experience of my life caused everything to change. What happened was, I was just sitting in our room watching TV or playing around on my computer, when I stood up to go to the bathroom. Immediately upon standing, my heart began to race, I became very dizzy, and was hardly able to breathe. I thought maybe I was experiencing the onset of a rare random panic attack, because it felt like that but actually far worse. I tried to breathe and calm down, and slowly made my way to the bathroom just to pee. During the two minutes or so that it took me to do this, my legs were trembling so badly and I felt so weak that I seriously thought I was going to pass out. I made my way back to my chair in the bedroom and continued to try and get my breath. Within 15 minutes or so, I started to feel close to normal again. But later when I stood up, the same thing happened again. I then proceeded to tell my wife what was going on, and laid down on the bed saying that if I did not feel any better by later that evening I would need to go to the hospital. At this time I had only Medicare Part A, because I was not aware that there were programs available to help cover the costs associated with Part B. That evening, I was indeed rushed to the hospital, and was found to be severely dehydrated and ketogenic. I also had several infected sites on my left foot which had to be treated with three kinds of IV antibiotics over a course of 42 days.
I began my hospitalization at Desert Springs hospital, which is just over a mile away from my home. Once I was stable I was transferred to a long-term care facility where I finished my antibiotics and was deemed fit to go home. This all would have been well and good, but for the fact that I was assigned the single most incompetent and ineffective doctor I have ever dealt with or heard of in my life. Now, keep in mind that one of my conditions brought on by severe obesity is a tendency to retain large amounts of fluid, especially in my legs. When they told me I was dehydrated upon admission, I took it for granted that my weight would not remain at 285. I expected that maybe I would jump back up to about 300 or 310 and then slowly start losing weight again with the almost entirely vegetable diet I consumed while in the hospital. I also figured that I would likely be put on a diuretic such as Lasix to keep my water retention from becoming extreme. Over the course of my first 30 days in the hospital and care facility, my weight skyrocketed all the way to 354. That is a gain of 69 pounds in one month, and nearly all of it was in my bruised and infected legs. I was being weighed several times a week, and once I passed 310 pounds in but a matter of days, I made it very clear to my nurses and this idiot of a doctor that I wanted to be placed on a diuretic. Despite the fact that my insurance at the time did not allow for any visits to specialists on an outpatient basis, I was instead scheduled to see a cardiologist. This visit consisted of me filling out the required paperwork, only to be told there was no way I could be seen, even though I made that abundantly clear in the days prior to that appointment. This doctor also was very adamant about wanting to discharge me straight home rather than to a long-term care facility without even taking the step of verifying whether or not I had a bone infection in my foot or leg, despite all appearances suggesting that I did. My wife and I had to invoke my right to not be discharged due to lack of proper care, whereupon in a matter of just an hour or two I was whisked down to the imaging room for an MRI. This did in fact show that I had bone infections in both my big toe and heel of my left foot. Would anybody like to explain to me how home health nurses would've been properly equipped to deal with this? To make a long story short, I was finally put on doses of a diuretic, and my legs were lightly compressed to help bring down swelling which became so bad that I almost needed help to swing my legs up into bed as they had become so heavy. Ultimately, I fired that quack of a doctor, and was assigned a new one who actually acted like she gave a damn about my health and my recovery.
I came home to another problem which had become completely out of control. My wife and I lived in an apartment with a long time friend of mine, who was unfortunately suffering from depression and who also was a food addict who, as he was approaching his 60th birthday, had begun to let his hygiene and personal space go completely to ruin. This led to infestations of both roaches and bedbugs, as well as a pervasive nasty odor throughout the entire apartment. Our cats had their litter boxes in our room, yet our room was by far the cleanest looking and smelling area of the house. It was so bad that the home health agency I was assigned actually refused to see me anymore. So, we decided that in spite of very limited funds due to my disability checks being our only income, we would have to find a way to move. I was granted the freedom to get out and about once again with the help of a power chair, so my wife and I cruised all over the neighborhood looking for a new place. We settled on some studio apartments which are literally in the shadow of the UNLV campus. We urged our roommate to go ahead and move with us into his own separate apartment so that we could remain friends (because he is a great guy with a heart of gold in spite of his issues), and we would be able to help each other if we needed it. He agreed to do this, and we all set our moving date for the month of September. Naturally, this is where things on my end really go completely to shit.
During the latter half of August, I once again started feeling really weak and just generally like things with me were not right. I had full Medicare by this point, so I was seeing specialists for wound care and pain management. The wound care doctor I was seeing was another absolute moron. The wound on my heel developed into an opening big enough to stick a finger into, and all the way down along the bones of the foot, and I took my wife's word for it that this smelled absolutely horrific. The wound care doctor did a culture on the outside of the wound, and claimed it came back negative. He never bothered to order any kind of test which would have revealed that my bone had turned completely gangrenous and rotten. So here I am, August winding down and a major move on the horizon, and I am becoming increasingly weak and confused. On August 29th, my wife came home from running an errand to find me collapsed on the floor in our room next to the bed, begging for her to help me up and back into bed. I was otherwise completely incoherent and barely responsive, so the paramedics were called immediately. I was rushed back to Desert Springs hospital, and this is when that same doctor I had earlier in the year was assigned to me again, and this time he literally nearly killed me.
My memories of the 29th through 31st of August are nearly nonexistent, but let me go over what little I do remember.
I have very vague memories of trying to fight the staff in the emergency room. My wife was there and trying desperately to calm me down. She claims that I actually pushed her, hard enough to nearly knock her off balance. The ER staff was trying to get security to put restraints on me while my poor wife frantically explained that in the 11 years we had known each other, I had never behaved violently toward her – not even once.
I then remember having the very same quack son of a you know what doctor coming into my room at his usual midnight or 2 AM, and me begging him to actually pay attention to me and to make sure I got the best possible standard of care. He assured me that oh, yes, he was going to do an excellent job this time.
Next, I remember on the afternoon of the 30th, a specialist came to my room while my wife sat with me and held my increasingly unresponsive hand in lieu of being home and packing for our move. Neither of us remember whether this specialist was a foot doctor or a wound doctor, but I very much remember him telling us that at the very least, my foot was done for. All I could do while lying in that bed was nod my head and feebly agree, as did my wife who could no longer bear to see me suffering. This specialist then went out into the hallway and met with my assigned quack useless idiot mother****er of a doctor, and argued with him over what was going to happen next. The specialist was shot down by the quack, and instead of being scheduled for amputation surgery, I was discharged to a long-term care center different from the first one I had gone to previously, which was fairly good. This new place was next door to Sunrise Hospital. I was there for a total of 23 hours, during which time my final memory was of my wife having to go to the other unoccupied bed in my room to watch TV because the one on my side was broken. I became too unresponsive to eat or respond to any sort of stimulus. Finally, a staff doctor was brought in to determine that I was on the brink of death and needed immediate emergency care.
I was rushed to Sunrise Hospital, where I quickly was treated for near fatal sepsis, had my left leg amputated just below the knee, and remained in intensive care for over a week while only given a 50-50 chance of survival. Needless to say, the primary doctor was now a completely different person. Through all of this, my wife somehow managed to coordinate our move to the new apartment, while visiting me regularly and keeping my spirits up. She truly deserves the best of health and everything life has to offer. To know that she has remained by my side throughout these recent ordeals is absolutely amazing. I am thus saddened all the more to see her own health now going into decline because of emotional issues and bad food choices which she made many years ago.
My story of 2013 ends – and that of 2014 begins – with a small ulcer on her big toe turning into her very own bone infection, for which she is currently now also in Sunrise Hospital, where she will be undergoing surgery to remove that toe plus some of the bone behind it. Thanks to the affordable care act, she is going to be eligible for Medicare herself, but the system here in Nevada is very bogged down and so there have been delays in getting her coverage up to speed. This may affect how soon after surgery she will be coming home, and if it happens sooner rather than later we may be in a world of problems. I am here alone with our cats and only three short visits from a home health nurse per week. The agency's Social worker will be coming by on Saturday to discuss any possible help which may be available to me for cleaning, cooking, and other tasks which I am either only marginally able or completely unable to do without assistance. Our previous roommate can help me with very simple things, but he is also not in great health and his personal care is a little better but honestly is still in need of work.
As for the complete waste of oxygen who was supposedly in charge of my care in the hospital when he wasn't busy trying to kill me, all attempts to sue him for his blatant malpractice have led nowhere. Between "tort reform" and the fact that my diabetes related health problems occurred because I was previously diabetic, no attorney I spoke with even had the slightest interest in taking what I feel would be an open and shut case, given that an expert opinion was overridden when I was clearly at death's door.
So, I guess we shall remain poor and just barely scraping by until my wife's disability is hopefully approved. We both agree that in her current condition it would be a fool's errand to try and find any sort of steady employment as she is simply way too much of a risk, and there is no telling if another small wound on her legs could almost instantly become yet another crisis.
I know that there are literally millions of people in this country who have it as bad as we do, or even far worse. I also know that more than a few of you are members of message boards such as this one. I thank you for allowing me this opportunity to unload a great emotional and physical burden, and for dignifying this very long post with a read.
May all of our 2014's be better than the horror – which for me at least – comprised 2013.
