barb (& everyone) - RE: MAUREEN

[Guest guest]

barb (and anyone else in the group reading this who may have had the same take on my post to deb), as a matter of fact, what you/the group (sans deb, because i have written privately to her) may not realize is, i did/do know the study was talking about recipients and not donors. but that's perfectly understandable. based on my un-proofed post (a most ironic clarification to follow), i can read your words (sent not just to me, but to the entire support group) "sorry, maureen, but you walked right into that one" and yes, i can certainly see how anyone might get the impression i wasn't reading carefully.

reminds me of a time when my words to this group about my sadness w/jim's PSC decline (meaning, among other things, less intimacy between jim & me) were misconstrued... when it was, in fact, non-sexual intimacy to which i was referring. although i thought back at that time that i was making every attempt to be clear. just shows-to-go-ya that written communication does have its flaws. for one thing, you don't get the benefit of hearing someone's inflection, seeing the sincerity in their face, etcetera, as you do with face-to-face or phone communication.

when it comes down to any information regarding studies, especially regarding non-cadaveric transplants, the truth is, i *do* "read them" because our family has an rather understandably passionate vested interest in all matters of that nature. and as most from this group would testify re their perception of me, from the typical detailed nature of my posts, it's a rare occasion when i don't try to carefully proof my posts, check for grammar or syntax errors, etcetera. i'm even a stickler when it comes to the proper use of the words "than" and "then" ...as well as properly using "you're" in lieu of "your." but as you can clearly see from my "abstaracts" typo error, i didn't even spell-check my post to deb). maybe i should ask cheryl in idaho, our resident english teacher extraordinaire, if she would edit my stuff to the group (but cheryl, i'm sure you wouldn't want to! i know i wouldn't want you to -- you'd blast me for my lack of caps, hee hee) ;-)

i'm not sure if i could chalk any of this -- or even the news i am about to share -- up to murphy's law ('cause i don't ascribe to good ole murphy's ideology that anything that can go wrong, will). upon re-reading my post to deb as it came through to the group, though, i did spot my error(s). but rather than post clarification to the group at large, i wrote privately to deb, within just a few minutes.

but in my post to the group, i'd reached a point in that post to deb (when i typed "living donor" intending to type "living donor *recipient") where i was interrupted with a phone call from my/jim's dermatologists' office, with the news that the path report on a biopsy from a mole recently removed from my head came dxd melanoma. could it get any worse? yes: my dermatologist has to go back in, deeper into my noggin, in order for the pathologist to be satisfied. so (and please don't infer i'm being rude when i say this -- because i'm not) pardon me, but i just lost it for a second (again, i'm not PMSing, nor are my knickers in a knot. i'm just stunned that i get to climb into the melanoma roller-coaster with jim). when i resumed the post to the group, i picked up where i left off, but didn't start in from the beginning. and i went in a different direction... jason's (living donor) instead of jim's (living donor recipient).

the gist of my post still, IMHO, holds true. that is to say, there's a possibility of circumventing around what seems (at least, at mt. sinai) any unacceptable risks by comparing info from tx center to tx center. this is how jim & i ended up selecting his tx center... comparing stats et. al. info amongst all the tx centers in the state of california. USC's stats on their living donors were FAR superior to other california tx centers at the time, but so were their stats on their living donor recipients. and before jim's insurance mandated his surgery had to remain within the confines of california, we had actually considered not only our top choice of colorado, but mt. sinai as well (due to their cock-a-doodle-dooing about being the busiest tx center at the time). eventually, jim and i learned that "busiest" does not necessarily equate with "best." i didn't post clarification to the group at large because i didn't think they'd want all the minutiae when i was essentially saying the same thing: in addition to what i have already stated, that jim/jason's tx center employed similar but different surgical technique, & they actually quoted better stats with respect to biliary complications (including bile leaks) re post-right lobe hepatectomy, living liver transplant donor *recipientship.*

btw, i was *not* criticizing abstracts, *nor* the studies they represent, just in case that was how my words were interpreted. i specifically said they were an awesome, important part of the process... and this study happens to be an extremely fresh one. but i hold to my belief -- jim's & jason's transplant "success" will bear that out -- than another part of the puzzle is comparing stats from tx center to tx center, always checking dates & sources of studies/abstracts (if you're into doing the research), and if you're happen to be in the midst of selecting a tx center, always try to compare info/stats/surgical procedures, if you can. tx coordinators at hospitals throughout the state were quite happy to answer our questions, always returning jim's or my calls in this process. we discovered some tx surgeons wouldn't even consider a modified mercedes incision... they made a three-way cut every time, and why on earth would a surgeon make a three-way cut if two would suffice just as well? or if, in jim's case, one single side-to-side incision would be best? no, i think my saying the phrase "in their place" was misunderstood, and that is unfortunate.

interesting side note -- some tx coordinators knew *less* about living donorship/recipiency, back in 2001, than jim & i did! and jim & i were happy to share w/them the info we'd been gathering. after all, it was a pretty rare surgery for a pretty rare disease... back at the time.

my getting this first melanoma was what i was referring to when i said irony, by the way. i am working so hard to spare jim his melanomas, and yet despite my own 2-3 month recall for "familial multiple atypical nevi syndrome" (i have literally hundreds and hundreds of moles on all over my body, thanks to my forebears, and precious few of them are typical), it looks like jim & i are now being double-whammied. if there's a silver lining (and i am understandably scrambling to find as many as i can), it is that i am not immunosuppressed like jim is. here's another one: the margins of my melanoma only indicate moderate spreading, not severe (but a growth, nevertheless).

it seems the highest irony, of course, to be hit with jim's malady. and that, on his behalf, i know more about melanomas than any non-doctor would really want to. with jim and i both now experiencing melanoma, the concern for our children (and future grandchildren)'s skin grows even more. any "inner strength" this group feels i may have aside, i've been crying off & on all afternoon to vent it all out *before* jim comes home from work tonight, so he doesn't have to fret. when i tell him the news, i want to be able to assure him from my countenance that the doctor & i are on top of everything... no worries, honey.

my apologies if i'm being oversensitive, or if i have misunderstood, or if this post is deemed too lengthy. and i'd dearly love to be cut a little slack under these present circumstances. i don't want anyone in the group thinking i'm splitting hairs, or being argumentative, or anything remotely negative, please. i may choose to opt out of group participation for a while (again, *not* because my knickers are in a knot). basically, i'm not sure what the next few days or even weeks are going to hold in store.

thanks,

maureen

-----Original Message-----From: Barb Henshaw

----Original Message-----From: Maureen

these abstaracts are awesome, in their place, and their stats/info do serve an important purpose. but to be especially thorough, …………

Read them! Sorry Maureen, but you walked right into that one.

The study wasn’t talking about living donors! The title was:

Biliary complications in 96 consecutive right lobe living donor transplant recipients.

Disagree with “in their place” without these studies and all the ones before them there would be no medicine today as we know it. Everyone would be spinning their wheels and getting no where. Now about that sandwich……

[Guest guest]

Maureen , sorry to hear about your melanoma. Unfortunately this is

going to be a common occurrence among the baby boomer age group. I have

already had one removed from my back and had to go back for that extra

cut for clearance. It is anther heavy weight on the mind that no one

needs especially someone with the weights you are already carrying. I

know what it is to have a crying fest in the afternoon in hopes that

you can present a positive face to the family at night. I totally

empathize with you and I wish you the extra strength that you need at

this time.

Lee

On Thursday, August 19, 2004, at 08:34 PM, Maureen White wrote:

> barb (an

[Guest guest]

Don’t have time

to read your whole post, but I was only making a joke with the “walked

right into it line”. You were

going on about being especially thorough, checking dates etc. and I thought it was

funny – my mistake. Guess I

should have added a Ha Ha. My post

wasn’t a personal attack – it was suppose to be funny!

Lighten up everybody…isn’t

laughter the best medicine? Gotta run.

-Barb in Texas - Son Ken (30) UC 91 & PSC 99

barb ( & everyone) -

RE: MAUREEN

barb (and anyone else in

the group reading this who may have had the same take on my post to deb), as a

matter of fact, what you/the group (sans deb, because i have written privately

to her) may not realize is, i did/do know the study was talking about

recipients and not donors. but that's perfectly understandable.

based on my un-proofed post (a most ironic clarification to follow), i

can read your words (sent not just to me, but to the entire

support group) " sorry, maureen, but you walked right into that one "

and yes, i can certainly see how anyone might get the impression i wasn't

reading carefully.

-----Original Message-----

these abstaracts are awesome, in their place,

and their stats/info do serve an important purpose. but

to be especially thorough, always check the dates

& sources of the studies, and compare them to stats/surgical

procedures from your own transplant center of choice. …………

Read them!

Sorry Maureen, but you walked right into that one.

The study wasn’t talking about living

donors! The title was:

Biliary

complications in 96 consecutive right lobe living donor transplant recipients.

Disagree with “in their

place” without these studies and all the ones before them there would be

no medicine today as we know it.

Everyone would be spinning their wheels and getting no where. Now about that sandwich……

[Guest guest]

Maureen, I was so sorry to hear of your melanoma. You and Jim are in my thoughts and I know everything will work out. Tim L

barb ( & everyone) - RE: MAUREEN

barb (and anyone else in the group reading this who may have had the same take on my post to deb), as a matter of fact, what you/the group (sans deb, because i have written privately to her) may not realize is, i did/do know the study was talking about recipients and not donors. but that's perfectly understandable. based on my un-proofed post (a most ironic clarification to follow), i can read your words (sent not just to me, but to the entire support group) "sorry, maureen, but you walked right into that one" and yes, i can certainly see how anyone might get the impression i wasn't reading carefully.

reminds me of a time when my words to this group about my sadness w/jim's PSC decline (meaning, among other things, less intimacy between jim & me) were misconstrued... when it was, in fact, non-sexual intimacy to which i was referring. although i thought back at that time that i was making every attempt to be clear. just shows-to-go-ya that written communication does have its flaws. for one thing, you don't get the benefit of hearing someone's inflection, seeing the sincerity in their face, etcetera, as you do with face-to-face or phone communication.

when it comes down to any information regarding studies, especially regarding non-cadaveric transplants, the truth is, i *do* "read them" because our family has an rather understandably passionate vested interest in all matters of that nature. and as most from this group would testify re their perception of me, from the typical detailed nature of my posts, it's a rare occasion when i don't try to carefully proof my posts, check for grammar or syntax errors, etcetera. i'm even a stickler when it comes to the proper use of the words "than" and "then" ...as well as properly using "you're" in lieu of "your." but as you can clearly see from my "abstaracts" typo error, i didn't even spell-check my post to deb). maybe i should ask cheryl in idaho, our resident english teacher extraordinaire, if she would edit my stuff to the group (but cheryl, i'm sure you wouldn't want to! i know i wouldn't want you to -- you'd blast me for my lack of caps, hee hee) ;-)

i'm not sure if i could chalk any of this -- or even the news i am about to share -- up to murphy's law ('cause i don't ascribe to good ole murphy's ideology that anything that can go wrong, will). upon re-reading my post to deb as it came through to the group, though, i did spot my error(s). but rather than post clarification to the group at large, i wrote privately to deb, within just a few minutes.

but in my post to the group, i'd reached a point in that post to deb (when i typed "living donor" intending to type "living donor *recipient") where i was interrupted with a phone call from my/jim's dermatologists' office, with the news that the path report on a biopsy from a mole recently removed from my head came dxd melanoma. could it get any worse? yes: my dermatologist has to go back in, deeper into my noggin, in order for the pathologist to be satisfied. so (and please don't infer i'm being rude when i say this -- because i'm not) pardon me, but i just lost it for a second (again, i'm not PMSing, nor are my knickers in a knot. i'm just stunned that i get to climb into the melanoma roller-coaster with jim). when i resumed the post to the group, i picked up where i left off, but didn't start in from the beginning. and i went in a different direction... jason's (living donor) instead of jim's (living donor recipient).

the gist of my post still, IMHO, holds true. that is to say, there's a possibility of circumventing around what seems (at least, at mt. sinai) any unacceptable risks by comparing info from tx center to tx center. this is how jim & i ended up selecting his tx center... comparing stats et. al. info amongst all the tx centers in the state of california. USC's stats on their living donors were FAR superior to other california tx centers at the time, but so were their stats on their living donor recipients. and before jim's insurance mandated his surgery had to remain within the confines of california, we had actually considered not only our top choice of colorado, but mt. sinai as well (due to their cock-a-doodle-dooing about being the busiest tx center at the time). eventually, jim and i learned that "busiest" does not necessarily equate with "best." i didn't post clarification to the group at large because i didn't think they'd want all the minutiae when i was essentially saying the same thing: in addition to what i have already stated, that jim/jason's tx center employed similar but different surgical technique, & they actually quoted better stats with respect to biliary complications (including bile leaks) re post-right lobe hepatectomy, living liver transplant donor *recipientship.*

btw, i was *not* criticizing abstracts, *nor* the studies they represent, just in case that was how my words were interpreted. i specifically said they were an awesome, important part of the process... and this study happens to be an extremely fresh one. but i hold to my belief -- jim's & jason's transplant "success" will bear that out -- than another part of the puzzle is comparing stats from tx center to tx center, always checking dates & sources of studies/abstracts (if you're into doing the research), and if you're happen to be in the midst of selecting a tx center, always try to compare info/stats/surgical procedures, if you can. tx coordinators at hospitals throughout the state were quite happy to answer our questions, always returning jim's or my calls in this process. we discovered some tx surgeons wouldn't even consider a modified mercedes incision... they made a three-way cut every time, and why on earth would a surgeon make a three-way cut if two would suffice just as well? or if, in jim's case, one single side-to-side incision would be best? no, i think my saying the phrase "in their place" was misunderstood, and that is unfortunate.

interesting side note -- some tx coordinators knew *less* about living donorship/recipiency, back in 2001, than jim & i did! and jim & i were happy to share w/them the info we'd been gathering. after all, it was a pretty rare surgery for a pretty rare disease... back at the time.

my getting this first melanoma was what i was referring to when i said irony, by the way. i am working so hard to spare jim his melanomas, and yet despite my own 2-3 month recall for "familial multiple atypical nevi syndrome" (i have literally hundreds and hundreds of moles on all over my body, thanks to my forebears, and precious few of them are typical), it looks like jim & i are now being double-whammied. if there's a silver lining (and i am understandably scrambling to find as many as i can), it is that i am not immunosuppressed like jim is. here's another one: the margins of my melanoma only indicate moderate spreading, not severe (but a growth, nevertheless).

it seems the highest irony, of course, to be hit with jim's malady. and that, on his behalf, i know more about melanomas than any non-doctor would really want to. with jim and i both now experiencing melanoma, the concern for our children (and future grandchildren)'s skin grows even more. any "inner strength" this group feels i may have aside, i've been crying off & on all afternoon to vent it all out *before* jim comes home from work tonight, so he doesn't have to fret. when i tell him the news, i want to be able to assure him from my countenance that the doctor & i are on top of everything... no worries, honey.

my apologies if i'm being oversensitive, or if i have misunderstood, or if this post is deemed too lengthy. and i'd dearly love to be cut a little slack under these present circumstances. i don't want anyone in the group thinking i'm splitting hairs, or being argumentative, or anything remotely negative, please. i may choose to opt out of group participation for a while (again, *not* because my knickers are in a knot). basically, i'm not sure what the next few days or even weeks are going to hold in store.

thanks,

maureen

-----Original Message-----From: Barb Henshaw

----Original Message-----From: Maureen

these abstaracts are awesome, in their place, and their stats/info do serve an important purpose. but to be especially thorough, …………

Read them! Sorry Maureen, but you walked right into that one.

The study wasn’t talking about living donors! The title was:

Biliary complications in 96 consecutive right lobe living donor transplant recipients.

Disagree with “in their place” without these studies and all the ones before them there would be no medicine today as we know it. Everyone would be spinning their wheels and getting no where. Now about that sandwich……