I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: RedMist on November 01, 2012, 07:03:16 PM
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I"ve been gone about 2 years. I'm giving my story in detail so that others can avoid similar experiences.
Almost two and a half years ago, in June 2010, I collapsed twice at work and applied for Social Security Disability. For a year I mostly sat on the couch and passed out because my kidney intermittently occluded my vena cava. 1 year ago my remaining kidney was removed. After 6.5 hours in surgery I came out 70 lbs. lighter. The following day it was determined that my fistula was unusable. Back into surgery for a catheter. 2 days after that back into surgery for a new fistula. Next day, back into surgery to correct the unusable fistula. In one of those surgeries I ended up in ICU where they discovered that my epidural-narcotic drip (for pain control) hadn't been started during pre-op prep. One good thing: my blood sugar levels returned to normal in about 10 days - graph was a straight downward line.
I went home after 6 days in hospital. The second day home my soon-to-be-ex-wife refused to let me stay there anymore so I bounced from friend to friend. Meanwhile, the catheter didn't permit sufficient dialysis and I started passing out from a condition I would be told 6 months later was uremic encephalopathy. No warning at all. I only knew I had passed out when I regained consciousness. In the second week of dialysis I passed while driving to the dialysis center and drifted into oncoming traffic. Two Ford pickups totaled but no permanent injuries.
I have bipolar disorder and PTSD and the uremic encephalopathy took it's toll on them. Within two weeks I had a sleep disorder that appeared to be medical, psychiatric and psychological in origin. I simply did not sleep. Eventually my body would just stop and I'd lose consciousness and fall over. Often I would get up and move around without regaining consciousness. I returned to the hospital several times but ER staff did nothing and refused to admit me because "we can’t find anything that fits criteria for admission.” At that time I had private insurance. During one 24 hour admission the staff fixated on the fact that I was staying with friends and had no permanent home. They interpreted that as meaning that I was a malingerer looking for government sponsored housing. The hospital social worker nastily asked me if I thought her tax dollars should be used to house me and transport me to dialysis. My psychiatrist of 14 years was useless. He stated he could do nothing for me because he didn’t have privileges at the hospital I was in.
With help from a friend and the money from my auto insurance I leased an apartment in a complex for people over 50 which was directly across the street from the hospital and 1.5 miles from the dialysis center. My new friends and acquaintances became accustomed to my sudden halts in mid-sentence and finding me sitting on the stairs asleep or sometimes sprawled on the lawn. Although a neurologist had ruled out a seizure disorder and in specific narcolepsy – the nephrologist in Tucson would ignore the neurologists findings and record narcolepsy as the diagnosis. The neurologist gave a clinical diagnosis of ‘involuntary sleep’.
Other than repeating that “It takes a while to adjust to hemodialysis, the nephrologists were unresponsive to my situation. They paid attention to my soon-to-be ex-wife who is a social worker with many years of experience with both in and out patient issues. She was other than objective and professional about me though. She kept telling the nephrologists that I was manic. However, throughout our marriage she would think I was manic whenever I was in a decent mood and in particular when my sense of humor surfaced. I was not manic but the nephrologists paid no attention to me and would not discuss my cognitive and physical problems with me.
Having no transportation of my own and often being too weak to walk to the dialysis center I had to take the bus. I would often pass out at the bus stop. A good way to be relieved of one’s wallet and other valuables. This went on until the end of September when I moved to Colorado.
About 2 months after beginning dialysis I was approved for medical transport to dialysis. The transport vehicle more often than not arrived early or late and would leave without me and without making even a token attempt to find me. The DaVita center staff was in constant conflict with the various transport companies over this. So, half of the time I walked 1.5 miles to the DaVita center, half of it through deserted office and industrial buildings and over a bridge under which many homeless people lived. I carried my cane not only as support but as a ready weapon.
The dialysis staff at the Tucson DaVita center were a problem as well. They interacted with patients as if the patients were a combination of cordwood and naughty children. I was infiltrated several times over the 4 months I received dialysis there. I was reprimanded often for not holding still and seriously threatened with having my arm taped to the chair. Had they looked at my records they might have noticed that I had severe Restless Leg Syndrome, PTSD, and that I was prescribed and taking Ativan so as to be able to hold still in the dialysis chair.
One time, a nurse new to me, didn’t like my response to a terse question she directed over her shoulder to me and told me “You need to change your attitude.” I had never met this person before and her second sentence was a threatening reprimand. In general I was made to feel that I was a problem to the staff. Most problematically, they would interact with patients from a company script. Any question from a patient was answered with some combination of how the patient was doing something wrong and that it would go in their medical record. And they interacted only when forced to by direct address. In a 38 chair facility, no one wore name tags.
A particularly unpleasant frustration is that this treatment only change for me when I dropped a few upper class Spanish phrases into my dialog. Then the neck tattoo brigade introduced a modicum of civility into their interactions with me.
In August the autumn asthma season began. I however got no relief from inhalers and made almost daily trips across the street to St Joseph’s Hospital ER because I couldn’t breathe. No one at the ER suspected fluid overload (only much later and by accident would I learn that shortness of breath is a symptom of fluid overload). And during all this time the losing consciousness at seemingly random times and places continued. Despite repeated requests of the dialysis staff to contact the nephrologists, the nephrologists did not respond.
I became so despondent that I consulted a hospice social worker. I strongly considered terminating dialysis. Fortunately, at that point I developed septicemia. I say fortunately because with a short stay in St. Joseph’s my condition improved greatly and I was able to reach the conclusion that my troubles were medical and susceptible to change by therapy and I decided that I would remain alive.
During that stay in St. Joseph’s I was without psychotropic medication. My sleep disorder was still keeping me exhausted and I was “white-knuckling it” throughout each day. The hospital had a contract with a psychiatrist who was supposed to see patients within 24 hours. 48 hours later he showed up at my room but left because I was in dialysis; in the same building, two floors and 30 steps away. He showed up the next day, 50 hours after he was called. I told him he was fired. He got huffy and I told him he was more than 24 hours late and I had been without meds and not enjoying it but that I had a handle on it now. He apologized. We discussed things for a few minutes and arrived at a workable relationship. Since I was leaving in two hours there was nothing else he could do for me.
Because of the sleep disorder I went to Tucson Medical Center ER and from there was voluntarily admitted to Kino Public Hospital psych unit; it supposedly being the only place I could get dialysis and treatment for the sleep disorder. On the first change of shift during my stay a woman I would soon learn was the charge nurse came through the double doors of the ward and immediately upon laying eyes on me began ordering me to do this and not do that and telling me that there were rules that patients must follow. She was a ringer for One Flew Over the Cuckoo’s Nest’s Nurse Ratched. After 12 hours of agonizing, I told the staff that I was leaving. Whereupon Nurse Ratched triumphantly announced “You’ll have to see the doctor first.” I did and I managed to not respond to her continued provocation and was released within 24 hours. I returned to my apartment.
Over the next month my condition worsened. I went across the street to St. Joseph’s Hospital and talked with a social worker about my condition and my first in-patient experience. She helped me get admitted to St. Mary’s Hospital psychiatric ward. This hospital had both a psych unit and dialysis. Kino Public Hospital was apparently not the only hospital that also had a dialysis unit. When I arrived there I discovered that the psychiatrist I had fired and rehired was on staff there. He prescribed a med that straightened out my sleep in two nights. Unfortunately, he also prescribed an antidepressant that made me manic and unable to hold still during dialysis. Fortunately, he was available by phone and gave verbal orders for a sedative that calmed me for the remainder of that dialysis run. Another unfortunate incident on my arrival at St. Mary’s was meeting the charge nurse. I had worked with her at another hospital for two years. She was kind but it was still unpleasant to have to say, “Well, I had my kidneys out and my entire system is screwed up and I’m not sure I’ll ever be close to functional again.” After two days I went home able to sleep.
Life continued as before except that I weakened daily. I decided to move to Colorado at the end of September so that I would die in the place I loved and belonged. I was too weak to load a Uhaul truck and had to depend on an acquaintance to load it and drive it to Colorado. She and her boyfriend did that but went way off-route and took longer than planned and cost me more money. While they were traveling I flew from Tucson to Grand Junction Colorado. An acquaintance picked me up at the airport and drove me to Montrose where I intended to move. Within 12 hours I was in the ER at the Montrose Hospital which had no nephrologist. Then I was transported back to Grand Junction. In spite of the fact that the EMTs were informed that I had severe Restless Leg Syndrome they became nasty and threatening about my inability to hold still. I took them up on their offer to sedate me. They didn’t believe I was serious. I managed to convince them that the movement was involuntary and they injected something. The next thing I remember was awakening in intensive care in St. Mary’s Hospital in Grand Junction. That was a little over a year ago.
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Wow RedMist....you've really been through the wars! But welcome back to IHD and I am sending good thoughts and wishes your way. :welcomesign;
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Thank you Looney Tunes.
The past year since moving to Colorado has continued in the same vein. In AZ I was the staff acupuncturist at a small private hospital. I had the respect of the MDs and they merited my respect. Sadly, the lesson I have taken from my patient experience is that civility, manners and being nice have no effect on medical personnel in the system-at-large. I survived the indifference and outright incompetence by getting tough and mean.
I have taken to telling doctors "I'm your nightmare, a patient with Merck Manual who knows what it means. I'm gonna have quality of life and I don't care how many asses I have to kick or who they belong to. I sat on the AZ Board of Acupuncture Examiners for 4.5 years and I know how to develop leverage." Adversarial relationships are most unpleasant but so far its the only Ive gotten them to be real with me.
Perhaps the most important point of my post is that we have to fix faar more than just the way we finance health care.
Joe
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holly shmolly!!!!!!!!! what can i say but what the heck of a bunch of crap!! And your here as living proof of what one human can withstand... Ya know, each 'issue' that you have is enough to tear someone apart and overcome, i hope you feel some goodness about having made it through all that. Anyway, welcome back and.............so whats happened through this last year??
Hope your days have improved, and your in your happier place :grouphug;
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Thank you Boswife. I have been a squeaky wheel for several weeks now and I hope the changes will be sustained. This weekend I'm doing my first peritoneal dialysis exchanges at home. I hope the transition from hemo will be complete by the end of next week. I shall be spared the DaVita party line from the hemo technicians for a while anyway. It seems that I'm the first patient without kidneys - no residual function to try PD in the region. They are concerned that I won't be able to accommadate the volume of dialysate necessary. Once again, if they read my records they would either discover or be reminded that there was a 70 lb mass in my abdomen for several years and that the imagery done for placement of the PD verified the continued existence of that volume. I did find another nephrologist to switch to three weeks ago.
I'm living every minute to the maximum I'm able. I'm active in a local meetup group. I have three writing projects I'm working on. Two of them are intended to be for-profit offerings on the internet. I'm fighting the good fight in attempting to institute an exercise regimen.
Perhaps the most important thing I'm doing is ignoring other people's assessments of how much of life I should adjust to losing. They simply don't know me. They consider thier patient through the lens of a bell curve, predicting and finding limitations according to guidelines and not according to the individual in front of them. Yes, nephrology is very complex and credit is due for the level of skill necessary to maintain patients on eight parameters dialysis affects. But, as my teachers drummed into us, "Treat patients, not books."
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i love your ableness (im sure theres a better word but thats what i got ;) ) To keep at this with such a positive attitude. I must say that im the 'wife of' dialysis man, and theres times that even I cant hold up to it all. :( Im Sooooooooooooooooooo happy your going for the PD and i will be anxiously waiting to hear of how you do with that. AND........ if it's not suitable to you, thers always NxStage ;) I know it's pretty time consuming :puke; but it does great for us so it makes it worth it. Please keep in touch with how your doing.. you got my prayers , and best wishes too...
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Thanks again. DaVita has Wifi and when I felt up to it I made very good use of the time on my laptop. By the time I moved to CO I was no longer intimidated by the floor staff. If it was too dangerous to move then DaVita's risk management team would surely have prevented the installation of Wifi.
Anyway, it doesn't all have to be dead time.
Joe
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Welcome Joe! Iam thoroughly exhausted! What a Trip you have been on. Back and forth, over & under I would say!!!!
So glad you are here to tell us about it. Keep it up, cause you are one tough Ombre for sure!
God Bless,
lmunchkin :kickstart;
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Thank you Imunchkin.
Here's the latest on the Dialysis Follies. The doc (my former doc) who wrote the orders for my PD supplies only specified CCAB supplies. Nothing for manual exchanges. Sigh. What a maroon. So, I suppose I"ll get the manual tubing tomorrow and begin Monday night.
The amount of stupidity and incompetence I've encountered is large enough to make me wonder if its the baseline for dialysis care or if God is trying to teach me something and I keep missing it. Could b e both I suppose. I've learned what knowledge I have the hard way for the most part.
Joe