So I have been gone a long long time. Not to worry. I am fine. I was quite busy with two classes and getting my house ready for the real estate market. My hard work paid off because I finished my classes and we sold our house-- and for a pretty penny.
So I have left California behind and will reside in Austin, Texas-- as soon as the house we're buying closes. Which might be a while... like 2 months or something. Bleh.
While we were living in a hotel so that our house could show, I switched from nocturnal dialysis to traditional, in-center, thrice weekly. I could feel a difference after one week-- some good, some bad. The good? I was actually able to get more sleep, because I was entirely sleep-deprived doing nocturnal. But in spite of the lack of sleep, I actually felt better on nocturnal. The foray into traditional dialysis was necessary for the time, but I sure missed feeling a lot better during my waking hours.
Now that I'm Austin, I'm back on nocturnal-- but with a different outfit. I loved Satellite Dialysis, but they don't have a nocturnal program in Austin. I have started up in a Davita clinic about 30 minutes from the hotel where we're temporarily living. The people here are nice, but .... it's so damned noisy all the goddamned night. The patients don't use headphones, which is totally mind-boggling. Right now it is 2:45am and there are tvs blaring, and to top that, the techs are talking, at a normal level.. and it's all driving me crazy.
Now admittedly, I don't sleep during dialysis because of the aforementioned chair issues, but even if I'm not sleeping I don't want to hear people yapping and their tvs blaring the whole time. Thankfully, my treatment here is only 6.5 hours. I think another 1.5 hours would drive me even crazier.
One good thing about this Davita center, though, is that they have wireless (no log in necessary)and they let me plug in my laptop. Yay on both accounts!
The bad, though? My second day here a patient bottomed out. They had remove her from her chair and begin CPR on her. They had to use the defibrillator, and call the EMTs to revive her. And that took a very long time. The lady looked pretty lifeless until the end-- and they took her off in an ambulance. I was totally freaked by this-- who wouldn't be? I don't know if she's recovered, as I don't think I've seen her back here at the unit. And today they said they had an earlier spot for me, so I wonder if I'm taking that woman's place *shudder* Seeing that whole thing unfold in front of me has strengthened my resolve to get a transplant-- and soon!
I'm at dialysis right now, and can't wait to get out. I can go back to the hotel and get 5 or 6 hours of sleep, and I'll be good to go. Well, good enough, for now, anyway.
Nitey night, from Austin....
Michelle/Treasure
Thursday, July 8, 2010
Wednesday, January 13, 2010
Sites for Sore Eyes
Thought I would post a couple of links to sites that are worth a look:
Dance for Donors-- http://www.dancefordonors.org/
All Kidney News-- http://www.allkidney.com/
Dance for Donors-- http://www.dancefordonors.org/
All Kidney News-- http://www.allkidney.com/
The Waste of Flesh
*sigh* I didn't really want to start off the New Year of blogging dissing social workers-- but ugh! I don't like contacting the social worker at my center unless I absolutely need to-- but whenever I do put aside my reservations, and turn to the social worker-- it is a disappointment. I have met very few dialysis social workers that are worth their weight in feathers-- let alone, gold. But then, my opinion about social workers is not formed just from the dialysis ranks-- but from having family members, coworkers and friends who have been social workers.
Social workers mean well-- I don't doubt that. But they can be a complainy bunch. I don't know many dialysis patients that really want to hear the dirty details of how difficult the social workers job and/or life is. You want to hear about a difficult life-- ask the patient about all that's going on in her/his life.
And frankly, it doesn't inspire much confidence when the patient/client seems to know more about resources than the social worker. I google the hell out of a subject before I approach a social worker for help-- afterall I'm a librarian, an information professional, and seeking out information is my job.
Ah well, I'm not going to complain any more about this. I have met some really nice, competent social workers-- in other states. Maybe this is just a California thing.
Moving on...
I have been giving more thought to having another kidney transplant-- especially since I may be moving to Texas and the wait for a kidney from a corpse is much shorter. My dear sweet hubby is considering donating to me too (though it's likely we'd have to do one of those swaps-- hubby prolly isn't compatible). Another interesting thing is that several people have suggested that I go overseas to arrange for a transplant. That's an intriguing thing but of course, US physicians will not commit to your follow-up care if you go outside of the US to have a transplant-- even if it is through perfectly-legal channels.
I hope the new decade produces new and effective treatments for kidney disease. I really don't want to remain on dialysis much longer. I am sick of having to arrange my life around dialysis sessions and I'm sick of enduring the pain that accompanies each treatment.
Happy New Year...hehehe.
Um, yeah.
Social workers mean well-- I don't doubt that. But they can be a complainy bunch. I don't know many dialysis patients that really want to hear the dirty details of how difficult the social workers job and/or life is. You want to hear about a difficult life-- ask the patient about all that's going on in her/his life.
And frankly, it doesn't inspire much confidence when the patient/client seems to know more about resources than the social worker. I google the hell out of a subject before I approach a social worker for help-- afterall I'm a librarian, an information professional, and seeking out information is my job.
Ah well, I'm not going to complain any more about this. I have met some really nice, competent social workers-- in other states. Maybe this is just a California thing.
Moving on...
I have been giving more thought to having another kidney transplant-- especially since I may be moving to Texas and the wait for a kidney from a corpse is much shorter. My dear sweet hubby is considering donating to me too (though it's likely we'd have to do one of those swaps-- hubby prolly isn't compatible). Another interesting thing is that several people have suggested that I go overseas to arrange for a transplant. That's an intriguing thing but of course, US physicians will not commit to your follow-up care if you go outside of the US to have a transplant-- even if it is through perfectly-legal channels.
I hope the new decade produces new and effective treatments for kidney disease. I really don't want to remain on dialysis much longer. I am sick of having to arrange my life around dialysis sessions and I'm sick of enduring the pain that accompanies each treatment.
Happy New Year...hehehe.
Um, yeah.
Sunday, December 6, 2009
And the beat goes on...
Still breathing. Still on nocturnal dialysis. Things are not bad...but there haven't been any new improvements, either. Still doing nocturnal three nights a week. Still driving 1.5 hours to get there. Tech Gertie Gumdrop-Britches is still there, as well as Tech Yummy Yummy Mansome. We have a traveling nurse-- but that's nothing new.
Then there's the clinical manager... Dr. Chrome. To be honest, he bugs! Everything he knows about me, he learned in a staff meeting-- but seems to not have been paying close enough attention-- or completely misunderstood what he heard. Why is it that nephrologists have a hard time looking at the cold hard data before them, before making recommendations. And looking at the "big picture." Nephrologists must be some of the laziest (or dumbest, I can't make up my mind) doctors out there, because all they seem to do is spout off what they learned from a nephrology textbook. They always seem to assume that your weight is static and that you always 3+ kilos to take off-- regardless of what the scale and your droopy (or too tight) pants, say. And while it's best not to miss a dialysis treatment-- they act like you're going to drop dead immediately if you change your treatment to a day later so that you can have a life, once in a while. I really think I may have to look into just who chooses nephrology as a career. Judging some of the duds I have met in the past, I wonder if they became doctors before MCAT screening, or from foreign diploma mill.
Now I do have a research nephrologist who is the schizznit personified. She is so on top of things. Maybe because she's a researcher, she has the ability to look at the data and plan an appropriate course of action. She is able to think outside of the box-- but perhaps that because she was trained in Europe. I adore her, and she has my complete trust. If only other neprologists were as dedicated and smart.
On to other things...
In the past month, at least three people have mentioned to me the possibility of going to Asia to procure a transplant. That almost sounds promising I really think I could raise the money to do something like that, but the stinky part is that a lot of U.S. nephrologists will not do your follow up care if you go outside of the States to get a kidney. I could respect that decision-- if I thought these docs were doing everything they possibly can to make more kidneys available stateside. And I think I've asked it before-- but it bears asking again-- does your nephrologist have two working kidneys? Have they thought of donating one now-- if not to one of their patients (all kinds of sticky ethics, there), how about to someone unknown to them. Hmmm, if every nephrologist with a viable kidney donated one, how quickly could we shave down the numbers on the transplant list?
After my last (and only) transplant fiasco, I thought that I wouldn't be readily considering having another transplant. But perhaps the way to look at it is that I may just need to have a new transplant every year-- much like getting your car's annual tune-up. And who knows, maybe one of the transplant might "take" and I might be able to go more than a year with one. Hmmm, I may have to see about moving to another state though, with a shorter transplant list. Hmmm, another transplant....
And if not that...
Dr. Italiano! Where's my stem cell treatment?
Then there's the clinical manager... Dr. Chrome. To be honest, he bugs! Everything he knows about me, he learned in a staff meeting-- but seems to not have been paying close enough attention-- or completely misunderstood what he heard. Why is it that nephrologists have a hard time looking at the cold hard data before them, before making recommendations. And looking at the "big picture." Nephrologists must be some of the laziest (or dumbest, I can't make up my mind) doctors out there, because all they seem to do is spout off what they learned from a nephrology textbook. They always seem to assume that your weight is static and that you always 3+ kilos to take off-- regardless of what the scale and your droopy (or too tight) pants, say. And while it's best not to miss a dialysis treatment-- they act like you're going to drop dead immediately if you change your treatment to a day later so that you can have a life, once in a while. I really think I may have to look into just who chooses nephrology as a career. Judging some of the duds I have met in the past, I wonder if they became doctors before MCAT screening, or from foreign diploma mill.
Now I do have a research nephrologist who is the schizznit personified. She is so on top of things. Maybe because she's a researcher, she has the ability to look at the data and plan an appropriate course of action. She is able to think outside of the box-- but perhaps that because she was trained in Europe. I adore her, and she has my complete trust. If only other neprologists were as dedicated and smart.
On to other things...
In the past month, at least three people have mentioned to me the possibility of going to Asia to procure a transplant. That almost sounds promising I really think I could raise the money to do something like that, but the stinky part is that a lot of U.S. nephrologists will not do your follow up care if you go outside of the States to get a kidney. I could respect that decision-- if I thought these docs were doing everything they possibly can to make more kidneys available stateside. And I think I've asked it before-- but it bears asking again-- does your nephrologist have two working kidneys? Have they thought of donating one now-- if not to one of their patients (all kinds of sticky ethics, there), how about to someone unknown to them. Hmmm, if every nephrologist with a viable kidney donated one, how quickly could we shave down the numbers on the transplant list?
After my last (and only) transplant fiasco, I thought that I wouldn't be readily considering having another transplant. But perhaps the way to look at it is that I may just need to have a new transplant every year-- much like getting your car's annual tune-up. And who knows, maybe one of the transplant might "take" and I might be able to go more than a year with one. Hmmm, I may have to see about moving to another state though, with a shorter transplant list. Hmmm, another transplant....
And if not that...
Dr. Italiano! Where's my stem cell treatment?
Wednesday, September 30, 2009
Lalala, life goes on
I haven't added a great deal to Nitey Nite lately. because it's pretty much been the "same old same old." Well, with the exception that I've had a bout of sudden-onset vertigo-- of unknown origin. And it looks like our dialysis days will be changing from MWF to Sunday, Tuesday, Thursday-- but when, I'm not sure.
Not a lot has changed with my dialysis care. My needles still hurt for most of my 8-hour treatment. I don't sleep well in the center. I still have cramps after I nap when I get home after dialysis.
Well, one thing has changed-- my husband is driving me to dialysis now that I have the vertigo and haven't been cleared to drive yet. It is nice to have hubby drive me-- but I do kinda miss my independence. I hope I'm never so decrepit that I can't drive myself to dialysis on a regular basis. I hate waiting, and people who squire dialysis patients around are notoriously late. There's no way I could deal with that.
The vertigo is a nice diversion, in a way. It keeps me from obsessing about new treatments-- like the wearable kidney and stem-cell research. I guess I'm ready to move on to the next big thing-- because what I'm doing now is just keeping me alive (which is a good thing-- considering the alternative)-- but I want to be healthy again! There is so much I want to do-- and I just can't manage it-- tied to a dialysis machine-- even one like the NxStage, that travels.
Well, I have to go now and see use my Wii. I'm hoping that the balancing exercise in Wii Fit help me get my equilibrium back from the vertigo. I'll keep you posted.
Nite nite...
Michelle/Treasure
Monday, September 21, 2009
Recupe Roundup
Well, my lovelies, it's been awhile because I have been in and out of the hospital, and recuperating away from home.
Boy am I bored! I'm not back to my usual snarky self because I'm still dizzy as all get-out. I suffered a sudden onset vertigo attack, and more than 10 days later, I'm still spinning a bit. I can walk about, but it's like riding a roller coaster through a fun house. I'd much rather be back at work, getting things done, instead of convalescing at my husband's house, which is 2 hours away from my home (I was visiting him for the holiday when the attack happened).
I'm not sure how long this condition will hang on. I'm not sure what role my dialysis plays in it, either. Having both conditions to worry about at once is a bit much. And I haven't even been home to get the results of my biopsy-- I could have cancer on top of all this other shit. UGH!
For now, though, I'm going to try to relax my little head and not worry about things, for the time being. I can always make a worrying appointment for a later time.
Ta! Michelle/Treasure
Boy am I bored! I'm not back to my usual snarky self because I'm still dizzy as all get-out. I suffered a sudden onset vertigo attack, and more than 10 days later, I'm still spinning a bit. I can walk about, but it's like riding a roller coaster through a fun house. I'd much rather be back at work, getting things done, instead of convalescing at my husband's house, which is 2 hours away from my home (I was visiting him for the holiday when the attack happened).
I'm not sure how long this condition will hang on. I'm not sure what role my dialysis plays in it, either. Having both conditions to worry about at once is a bit much. And I haven't even been home to get the results of my biopsy-- I could have cancer on top of all this other shit. UGH!
For now, though, I'm going to try to relax my little head and not worry about things, for the time being. I can always make a worrying appointment for a later time.
Ta! Michelle/Treasure
Sunday, September 13, 2009
Where have I been?
In the hospital, of course! See, a funny thing happened on my way to an orgasm-- I developed a crippling case of vertigo, resulting in extreme nausea and vomiting. Last Tuesday I had to go to the emergency room because things were just that bad. In the ER they hypothesized that I had had a mini-stroke or a TIA. I had a CT scan that night, that was clear.
Wednesday and Thursday were two typical days in the hospital-- with the exception of having a crazy cocaine-addle roommate who was talking to herself all night about people coming into her room, touching her and leaving stray hairs between her legs *yikes*
Friday they did a MRI, which came back negative for stroke, and I was released Friday evening. I ended up having conventional dialysis twice in the hospital. I can't help but wonder if I would feel a little better now if I had had two long dialysis sessions, instead of the 7 hours I got in the hospital.
I'm going to be recuperating at home in Berkeley for the next several days, and hope things will improve enough for me to drive myself back home to Monterey Bay. This isn 't quite what I had in mind for an extended vacation!
Subdued and dizzy...
Treasure/Michelle
Wednesday and Thursday were two typical days in the hospital-- with the exception of having a crazy cocaine-addle roommate who was talking to herself all night about people coming into her room, touching her and leaving stray hairs between her legs *yikes*
Friday they did a MRI, which came back negative for stroke, and I was released Friday evening. I ended up having conventional dialysis twice in the hospital. I can't help but wonder if I would feel a little better now if I had had two long dialysis sessions, instead of the 7 hours I got in the hospital.
I'm going to be recuperating at home in Berkeley for the next several days, and hope things will improve enough for me to drive myself back home to Monterey Bay. This isn 't quite what I had in mind for an extended vacation!
Subdued and dizzy...
Treasure/Michelle
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