This isn't transplant or even cancer related but some of you might have been following my MMT since we started noticing my low PLT and high liver enzymes. Again, my liver issue isn't AML or SCT related but here's where I've been journaling my adventures. So there.
Anyway, I got a CT of my liver last week. Today the nurse calls. "Dr X got the results of your liver CT and there's no cancer!" (Note: We weren't looking for cancer.) "It does appear there's an abnormal blood vessel but Dr X doen't think it will mean anything clinically. She'll discuss it with you the next time she sees you." (We have no appointment scheduled.)
This is why they generally want you to get your results with the doc. A less experienced medical wonder than I might actually allow him/herself to get wound up pretty tightly about this type of report. I think I'll be scheduling an appointment today. (Guess this is one way of drumming up business.)
This is just getting f-ing old.
Oh Tex, come on - lay off the bottle! Ya know that hooch stuff was gonna get you sooner or later.
Seriously, though, it does drive me nuts when they get RNs, NPs, etc. call you up - especially when they haven't been involved in your care in the first place and only have your history in front of them.
Let us know what the next chapter says.
It's absolutely not cirrhotic and my doc has cleared me to have a drink or so a month. I haven't asked her if I can do a year's worth of drinking over two or three nights, though. I prefer to live in ignorance and believe that's okay.
Thing is I've never been much of a drinker, well, college and young adulthood being the exception. I'd always rather get stoned.
I don't mind getting a call. But if you're going to drop the "unusual blood vessel" bomb on you, they ought to offer just a little more information. That's not a lot of fun to wonder about.
My doc's very receptive to hearing how I, as a patient, have received things. Think I'll be bringing it up with her.
The neat thing about being a study case (she's said she wants to write me up and I know she's discussed me with panels) is that she's willing to sit and talk with me for a long time. Not bad. I just hope there's not someone waiting on her.
Yeah, I know what you mean about them "dropping a bomb" - or even what SOUNDS like a bomb - without more information. It's what new MDs are supposed to be taught NOT to do: drop medical information to a patient without explaining what it means/what the implications are.
Scene: consulting room. Persona: MD and patient. MD: "Sorry, Mr. Smith, I have to tell you your scan shows a severely herniated nucleus pulposus, and we need to operate as quickly as possible. Patient: Oh, Doc, does that mean I might die? MD: "Well any surgery carries a risk of death, but you stand a higher risk of being paralysed." Patient goes home and tells his wife that he's probably going to be paralysed for the rest of his life and they had better move, because their current home isn't wheelchair accessible.
Translation: patient has a herniated disc. The surgery only carries the very slightest risk of serious problems afterwards (assuming the surgeon is skilled).
Another example - and this was the hospital lab - last blood draw the lab report had all the ususual stuff in it, and then at the bottom it said: nucleated RBCs...#NM. Now I KNOW that NRBCs in the peripheral blood are NOT good. But what does "#NM" mean? So I thought maybe it meant that they saw a couple, but there were too few to put a percentage on. I emailed my MD in a panic, and he said that it was just a "place holder". It was probably some tech who just put that in. Meanwhile, I haven't had any nucleated RBCs since June. Whew! But I did have a couple of sleepless nights over it. In fact, when I saw the MD this morning he said (smiling): "Note, no mention of nucleated RBCs today." My comment had been that the lab should have a policy - either put in ALL "place holders" or don't put them in at all.
I figured the bottle stuff was a joke. But I do know what you mean about liver problems being assumed to be alcohol-related. At least, I know I feel self-conscious about it and often mention my doc gave me permission to drink occasionally as I don't want to be perceived as a drunk. My old man's a recovering alkie and that is a stigma I don't want. The only addicition I've ever had was to tobacco and that was bad enough, thank you kindly.
You know, at least our docs are open to critiquing and suggestions on how to improve their practices. Many a doc would just ignore it.
Thanks for the stories. If I was still preaching, a couple of them would wind up in sermons.
I'm happy to oblige with stories any time I've thought of writing the "hospital" equivalent of "Up the Down Staircase" - like the time a patient who had major abdominal surgery kept refusing pain meds. Everyone was in amazement at his tolerance for pain, but then something must have really alerted one of the nurses, because they checked his bedside table drawer and found a whole bunch of pain meds. (They couldn't do that today: invasion of privacy and all that.) Ah - and the spine surgery patient (a very voluptuous brunette) who approached a young intern and asked: "When can I have some sex?" He was a quick thinker, because he responded: "We don't have any of that here." I've got teacher stories as well - thanks to my mom who taught in the NYC school system for about 50 years. Besides: once a preacher, always a preacher. You do a good "mission" job here.
Re: critiquing MDs: mine KNOWS he's got to tell me things in advance. The day I got admitted for chemo, they didn't do much. He came to "visit", and we chatted. About 1/2 hour later a nurse came in to put a line in my arm. When I asked why - because I knew they'd put in a PICC line the next day - she said that my MD wanted me to get fluids. I was really pissed. If he'd TOLD me that in advance, I'd have volunteered to drink a whole lot - no problem. So I told him off the next morning. After that we had a perfect understanding about stuff like that.
Glad you kicked the tobacco habit. I know how hard that can be. It's the only bad habit I don't have. (Ok, I'm not a heroin, crack,regular cocaine or even pain med addict either ) In fact, I was a "convert" to the anti-tobacco "religion" by the age of 9, when I recall refusing to buy cigs for my dad - who did smoke. Before you exclaim: he was sick and mom sent me to the store. It was an era when if the storekeeper knew you, he'd sell cigs to a kid for the parent(s). I did go to the store and get the other things mom wanted, but I refused to get the cigs. Boy, was my mom ever mad at me - but I stuck my ground. My dad smoked from when he was young into his 70s. Then, when my parents were at a high altitude in Switzerland, he got sick, and they had to rush him to a hospital at a much lower altitude. He was in the ICU for 5 days, and the doc told him that he'd die if he ever smoked again - and he didn't.
BTW, PT school did me in: after I took my Board exam, I got hysterical at the thought of any other "test" - and I had to take a CPR exam soon after. For at least two years I was so "studied out" that I couldn't read any "serious" literature.
Actually, it wasn't tough to quit the time it worked. I had been trying to cut down and was down to 4-5 ciggies a day when I was dx'd. Spending seven weeks in the joint unable to go outside helped me get away from them for a good while. (Though I did sneak in a stairwell to have one last one right after they hooked up my chemo,)
I fell off the wagon while deciding about my SCT and kept on with a couple a day right up until they put me in the hospital for my second induction and SCT. I realized it was then or never so after eight weeks without one, I just kept on not smoking anymore.
Interesting stories. You ought to write them up for fun.
Tex wrote:I did sneak in a stairwell to have one last one right after they hooked up my chemo
I fell off the wagon while deciding about my SCT and kept on with a couple a day right up until they put me in the hospital for my second induction and SCT.
Aren't you the guy that calls my dear little brother every name in the book for his stupid moves?
By the way, yesterday I read Kelly the email you wrote questioning his intelligence, among other things. There was a nurse in his room at the time, and she said, "I guess he must be a very close friend to call you all those names." What kind of messed up society is this where we assume that only close friends would abuse us like that?
What can I say? I was three days out from learning I had leukemia, I had just been hooked up to a bag of stuff that would require EPA rules to clean up and was going into my bloodstream. Indeed, I had been told I couldn't leave the floor I was on because it was just too hazardous to risk spilling elsewhere in the hospital.
I was scared, angry and feeling a bit cooped up and rebellious. So I went and had a cigarette where no one was around. Never claimed I didn't do stupid things myself.
Anyway, there are a lot of names in the book I'd never apply to your giant, little brother.
As I gather they say in Aussie: Good on you!
I gather that for many people it's harder to quit smoking than to quit some other habits. In fact, a psychyatrist friend who specialized in "addiction medicine" told me that it's harder to quit cigarettes than many hard drugs. The cigarette manufacturers deliberately elevate some of the chemicals to keep people addicted. My dad did it "cold turkey" - helped by his stay in an ICU, and I've got a friend who did it by cutting one cig at a time over quite a long period. But I also know lots of people who quit and then relapse - usually under conditions of stress.
Besides having been a "devout" anti-cig person from (at least) the age of nine, another reason I never took it up was because my mom did such a good job of making me fear matches (!!!) that the phobia lasted well into my teens. I have no idea why I didn't think of lighters (certainly my dad had some), but for some reason I was fixated on matches. I also knew that when someone starts smoking you cough alot - and that doesn't look very "sophisticated" - and what 14 -15-year-old would want to appear "unsophisticated"? So since I couldn't "practice" alone, ergo I couldn't smoke in "public". My mom all unwittingly not only "saved" me from setting the house on fire, but also from ever becoming a smoker. It's a very seductive habit: when I lived in London (for 13 years), people would give me cigarettes, so I guess I "smoked" about a pack in my lifetime - and unlike Clinton, I really never did inhale!!! However, one day, many years later, I was having an espresso in a coffee bar, and this incredible longing for something like a Gauloise (blech!!!!) came over me. If I had been with someone who smoked, I would have bummed a cigarette, but as I was alone I certainly wouldn't either ask a stranger or go and buy a pack. I got over it, but I still remember (much more than 25 years later) how very strong the urge (and it couldn't have been anything like a physical dependence) was.
Anyway, just think how much money you are saving by not buying those things! Spend the $s on a nice bottle of wine - a VERY nice bottle!
Poor you: celiac disease on top of AML (or v.v.)! I'm not a huge beer fan - unless I drink it with certain foods or if I hang out with a friend who spent time in Belgium (which produces the most beer) and so is quite an afficionado.
I think it's horrible that American hospitals are so "prudish" as to not allow even wine. When my mom was hospitalized in France after a car accident, they served wine with lunch and dinner. Her roommate was an elegant French woman who had severe diabetes - and in fact was a double amputee thanks to the diabetes. Nonetheless, wine is so "essential" to the French, that she, too, was served it! Now here, they'd have a fit if they found anyone sneaking in even a sip. (Remember my dying patient who wanted Old Granddad?) When I was hospitalized back in 1990 for horrible pneumonia, I had Alec sneak in a mini bottle of brandy (which I'm normally not a huge fan of), and I'd take a couple of sips every day. It kept my head in order! During chemo, however, I was a "good girl" and stayed off the bottle.
Oh, Lord, Celiac's and AML are only part of it. My body is just plain f-ed up. Yet, I manage to live a fairly normal and active life. I'm just a collection of weird health issues.
I never thought of it as being prudish that we don't have booze in the hospital. Just more of our culture. Of course kids in Fance drink wine...that's a big part of the culture.
We tend to discourage our kids drinking so they can do it in private with great shame so they can develop anti-social, secretive habits and lifestyles. Actually, I don't favor giving kids alcohol. In a lot of cases, it'll mess up their lives soon enough. Why rush it?
Anyway, when I'm in the hospital, I get all of the opiates I can in me. A nicer buzz than booze and they certainly don't work and play well together.
A side-note on alcohol use: there are studies that show that there are fewer Jewish alcoholics because the kids all get wine as part of religious services/dinners from an early age. It goes with cigarettes: when I was three I asked my dad if I could try one of his - and instead of reacting "it's only for grownups" - which would have made me want it more - my parents let me have a puff. Of course it was a horrible experience, and I never wanted to repeat it. I started drinking wine when I was 16 and on my first trip to Europe with my parents. We were at a hotel in Venice, and at the next table at our Pensione was a French family and their kid - about 6 years old. HE was drinking wine (my mom later said it had been watered), so I figured that I was "grown up enough" to drink it too. It took a while to acquire the taste though. LOL I never had to conceal drinking - didn't want to much. I do recall my 21st birthday bash, though. A friend worked in a hospital lab, and in his spare time he distilled pure alcohol. They put it in fruit punch - 3 of my mom's largest cooking pots full: "strong", "stronger" and "corrosive" strengths. I drank "corrosive" all evening. By 4 a.m. I had a splitting headache! Lesson learned.
Sorry you've got all those issues, but you are a real trooper and are shining through (just like the song says).
I dunno. My old man's an alkie (dry now, thank God) and he's big on this genetic predisposition stuff. It does seem like alcoholism is a generation skipping problem.
If that's the prime cause of alcoholism, there would more likely be a genetic reason behind any group's ability to avoid alcoholism. In the early tribal days, they were likely very opinionated about marrying outside of the tribe so the good genes were reinforced.
Yeah, but the bad genes were also reinforced since everyone was related one way or another. I think there probably IS a genetic link to the tendency to become addicted to something. A friend has an adult son who was addicted to druge in Jr. Hi (!!!!) - actually, I'd like to blame his horrible father - was treated successfully for that, but he then became addicted to alcohol. Is in AA and has been "dry" for many years now, however he's now addicted to gambling. He disappeared over a 3-day weekend and didn't even call his wife. He went to a casino - and played cards for 3 days! What I fail to understand is why, on a bathroom break (in 3 days he HAD to have gone to the bathroom) he couldn't have left a message. His wife (new to this) was distraught - only his mother took it in stride. I thik he's now having rehab for that. So I'm wondering what the next addiction will be.
You know, I'd almost think the addictive personality thing is mostly pyschological except, try as I might, the only thing I ever got addicted to was tobacco. Drank like a fish, never "needed" a drink. Then one day I just started drinking less and less. Did pills like they were candy so I left them at home and went out of town for a few days. Came home, never touched them. I apparently have a difficult time getting hooked on things. So, there might be something genetic to that.
The alkies, as I understand them, tout that it's a gene that specifically leads them to alcohol. I don't know. Having to listen to my dad preach an evengelical AA gospel for nearly 30 years has worn me out so much I couldn't care less.
Forgot to say: "JUST JOKING" - about the "bottle" stuff. But you have to admit that when someone complains about liver issues, it IS the first thing that comes to mind.
On the other hand, I once had a patient at MSK who was what they call "actively dying". When that happens, they try to put the patient in a private room (at no extra cost) and let the family stay 24 hours/day if they so wish. Well, this particular lady had a great sense of humor - she called her Hickman ports her "udders" - so one day when I went past her room, and I noticed that none of the family were with her, I asked if she needed anything. She responded: "Yes, I'd like some Old Grandad." I really wished I could have given it to her. Later that afternoon I met one of her daughters in the elevator, and I told her the story. She loved it.
Ah - another "liver" story: an Orthodox Jew was going to Paris on business. He knew that for business reasons/having to entertain non-Jews, he would have to eat in some of the better restaurants in Paris which, of course, are not kosher. So he went to his rabbi for a consultation. The rabbi said he should ask for fish - a whole fish such as trout - and ask that it be wrapped in a double layer of foil with only some herbs and perhaps some lemon in with it. So that's what the man did at a rather famous Parisian restaurant. When asked why, he tried to say "on account of my Faith" (la foi), but instead said "le foi" - which means liver. Now every true Frenchman can tell you all about liver problems, so of course they were completely sympathetic. The chef even came out to compliment him on asking for "fish as it should be prepared"!
Tex, I love those kinds of calls. I have only had one or two of them, thank heavens its usually my doc who will call. Glad to hear that you will be making that appointment, at least if it isn't anything to worry about, you can hear that from the doctor.
And as far as it getting old, I think many of us agree, I have had an abdomial hernia now for over a year, that I have heard every excuse in the book as why we don't need to fix it, and I finally went to see a surgeon the other day, that I finally said the same thing, the pain is getting OLD, and so next week it will finally be fixed.
I know that you have been dealing with this issue for quite some time, so make sure you let us all know how it goes with the doc.
Interesting thing. I called to make the appointment and the girl refused to make an appointment for me because the doc had written she wanted to see me in six months. That would be January. I'll be damned if I'm waiting that long.
I have weird enough stuff that some docs tend to give me their personal e-mail addresses. I'm going to try an end around and e-mail her. I also need to dicuss continuing to use Nexium as they've been advertising it presents an osteoporosis risk and I've already been blessed with that disease.
Complicating factors are that I was my doc's last appointment before she went on maternity leave and she just came back last week. She's going to be flooded with patients that probably need to see her clinically more than I do. But I have issues, too. I'll bludgeon on.
Good luck on your surgery. Let us know how it goes.
Always good to see you posting, Sonya.
It just got weirder.
Okay, so I had a liver biopsy last year. Now I have an abnormal blood vessel in my liver. It's a fistula connecting an artery and a vein.
The working theory is that the doc doing the bx nicked a spot between the two vessels taking a little of each out and causing a bleed. When they healed, they just created another vessel. The only thing that should do is slough off a few oxygenated from the artery to the vein. Shouldn't cause an issue. The good news is I'm not about to bleed out through my liver.
We're actually going to do a MRI to get a better picture of what's up with it.
I also found out that, even though my ferritin is only at 1,000, she wants me to start phlebotomies. Apparently iron scars the liver and she wants to get me "as much time" with my original liver as possible. When pressed on that comment she assured me that she didn't think I was heading towards a transplant (she's already told me she didn't think anyone would even attempt a liver transplant on a SCT patient so I don't know if that's reflected in her comment). She didn't think I was headed for liver failure. So, I'm kind of lost as to what that meant because there just comes a time when you drop it.
So, I start with phlebotomies soon. Then the MRI and another EGD.
Damn, I'm going to have to learn something about the damned liver if this crap keeps up/
You know, I told Kelly's wife a while back that the time may come that she needs to take him out back and shoot him. Could you give me your wife's email address?
Wanted to let y'all know that I really enjoy the 'boys byplay' that goes on between you three It's brought me many a laugh. dj
I will refrain from some wise ass remark and send you some support around your doc. Sometimes they make stupid remarks off the cuff "as much time" with your original liver......I guess we all want as much time with our original parts as possible....hope all this medical activity does not interfer with you life too much...you have spent enough time tethered to doctors....I spend too much of my time with wanna be doctors ( many of the under grads I teach). My recurring nightmare is: I will end up in an er in some forsaken place in will walk the former student I gave a "c" and had to go to MD school in a place like Azerbaijan. Now I will be at their mercy and they will extract revenge.....
Now I'm really curious, Warrior, what do you teach?
Your fears remind me (sorta) of a physic prof I had. He was teaching the course based on trig - not calculus - so everyone in the class (except me) was pre-med. He didn't get that concept -he kept on about "when you take your next physics course..." (which no one was ever planning to do), and demanded "creative thinking" on exams. Now I'd already been accepted at Columbia and HAD to pass "physic 102" or else... I spent the summer in tears. The Hudson River rose in its banks as a result! My talents do not run to math/physics, so I was terrified - as were many of the other students. I saw the prof's final from the year before : it was a one question final, and I didn't understand the question with the book in front of me! Someone (Department Chairman???), must have got to the prof in question, because the final was a doddle - and I got to go to Columbia! ILots of other students were very, very happy as well.)
Well, I've found you reap what you sew, so you might want to start giving them all A's.
The thing that bothered me most about the doc's "as much time as possible" comment if that she's said a number of times before that she didn't think anyone would do a liver transplant for a SCT recipient. When I asked her about this comment she made some comment about me having a transplant. I figure whatever comes will come.
And I have to take a bit of what she said with a grain of salt. She just got back from maternity leave like two weeks ago, it was her procedure day (they have a endoscopy clinic attached in the same building) and she worked me in between procdures. So, she was a bit rattled. I'm impressed with how composed she is and how well she's able to keep so many balls in the air, just discussing my freakin' liver.
Let me give you an example of one of our students:
"Good Morning Professor,
I would like to reschedule my appointment for today 11:00am for a day next week. I will be coming by your office to pick another time that is convenient for me. Sorry for the incontinence this may have caused you."
now you know that my nightmare is well founded
Oh yes, indeed! MY nightmare is that that student will actually get into medical school. The writing is about on a level with my mom's students, and she taught in a vocational HS! There's something sorely lacking in our educational system. It's one of my "soapbox" issues. American students can't write, they can't spell (some even don't know how to use spellcheck), and they haven't been attracted to or motivated to study literature or the sciences. When I took an organic chem lab, our lab teacher was from Beijing. She had studied English for only one year - and that some years before. Fortunately, we had a Mandarin-speaking student in the class who could interpret. For one physics lab we had someone from India whose English was heavily accented and barely understandable. Grrrrr!
Oh, hell no. They pulled my Hickman during my last clinic visit at the Hutch. She told me it's a lot like donating blood and I used to do that fairly often when they still wanted my blood.
I wouldn't give your bro my wife's e-mail anyway (see above) but thanks for the assurance I've done the right thing.
Well...I dont drink but if I could get a connecction for some "Horse"...thats more what I need. (Do they still call it horse?)
Funny stuff with the med students enacting revenge!!
Sorry you continue to have some liver questions. Besides the cytochrome p-450 enzyme system, I dont have much knowledge.
Good thing your compassion, wit, sense of humor and knowledge don't origionate in your liver. Heres to some easy quick answers...perhaps?
I think the answers are getting pretty simple. It's just my tendency to get these really bizarre, I've-never-heard-of-that-before medical conditions. It gets a little old.
If you were speaking of heroin, I have no idea what they call it these days I get my morpine on the legitimate market these days.
Naw, I don't feel a need for a second opinion. My doc is really on top of things in her field and I trust her.
I'm also heartened by the fact that she continues to discuss me with an interdisciplinary group for other insights and confirmation. In fact, it was a hematologist in this group who raised the question about my ferritin levels. That was something that wouldn't have occured to her at the relatively low levels I had.
So, I feel pretty well watched over.
As for the rest of your post, well, I don't feel a need to stand out from the crowd quite so much.