Aids HIV FAQ

Possible A.D.A Violation?

Question:

> Maureen > All very true…and thanx for pointing out to all here who need that kind of > info.. > Curious aside…a good friend of ours…10  years ago,,,at age 48 got a heart!! >  Very rough pre and post op course,,poor guy ended up with Hep C due to 117 > units of blood!!

Can’t/don’t they screen for this in blood that’s donated? — Katharine S.

Response:

>Can’t/don’t they screen for this in blood that’s donated?

Katherine.. One would think!!  But he was bleeding out as fast as they were pumping it in…even tho each unit HAD been pre screened for BAD things….seems I read somewhere that the risk of Hep C  if you get 18 units of blood at ONE time is pretty bad …just a statistic,,tho….as with many tests,,there are false negs…also a WINDOW period before the antibodies are formed,,thus disease undetectable,,but transmittable…scarey….this guy is VERY lucky to be alive…and doing VERYYY well!! rb Hawki…the nurse practitioner Any and all info given here is my opinion only,,and is not a substitute for consulation with your health care provider

Response:

- Hide quoted text — Show quoted text ->Can’t/don’t they screen for this in blood that’s donated? >Katherine.. >One would think!!  But he was bleeding out as fast as they were >pumping it >in…even tho each unit HAD been pre screened for BAD things….seems I read >somewhere that the risk of Hep C  if you get 18 units of blood at ONE time is >pretty bad …just a statistic,,tho….as with many tests,,there are false >negs…also a WINDOW period before the antibodies are formed,,thus disease >undetectable,,but transmittable… ><clip>

Another consideration is the time frame you mentioned.  The man received the blood 10 years ago — and the Surgeon General has had public service announcements alerting folks to the fact that if they received blood in 1992 or earlier, they should be tested for Hep C. Since the S.A. specifies 1992, they must have developed a better screening method late that year or in early 1993? -Therese

Response:

Therese said>Another consideration is the time frame you mentioned.  The man received the >blood 10 years ago — and the Surgeon General has had public service >announcements alerting folks to the fact that if they received bl

This is very true!! As another OT aside….I have a favorite little niece…well,,,16 now!!  who was born in 1985  VERY prematurely…and needed blood transfusions….remember 1985 was the FIRST year we tested for HIV in blood…and the tests were pretty rudimentary…I guess it is safe to assume by now that she got GOOD blood… For one’s "peace of mind" this is an EXCELLENT reason to "donate your own blood" prior to elective surgery…the experts say even relying on "friends and family" may NOT be safe,,,as we REALLY  can only attest for our OWN behavior!! just a thought.. rb Hawki…the nurse practitioner Any and all info given here is my opinion only,,and is not a substitute for consulation with your health care provider

Response:

Maureen All very true…and thanx for pointing out to all here who need that kind of info.. Curious aside…a good friend of ours…10  years ago,,,at age 48 got a heart!!  Very rough pre and post op course,,poor guy ended up with Hep C due to 117 units of blood!!  Six months ago he needs kidney transplant (thanks to cyclosporin)….of course due to chronic Hep C he is at the bottom of list!!  A nephew was about to donate….when lo and behold an accident,,donor turned out to be Hep C ++ and so he got the kidney…..doing mighty fine with TWO transplants!! So one never knows… I’m sure you are aware now that spousal NON related,,often very poor matches (tho blood matched) are doing VERY well!!  at least in partial livers,,,and renal… Size of receipent will also depend…..livers will actually GROW in a very short time,,,,kidneys even from very small children are very efficient….lungs may be a different story.. One last thought,,,tho..and I hesitate to say this….it DID seem a bit fishy when Mickey Mantle got a liver within a few days of being listed!! good info rb Hawki…the nurse practitioner Any and all info given here is my opinion only,,and is not a substitute for consulation with your health care provider

Response:

><not true.  Simply not true.  This shit crops up every time a famous person >gets a transplant. The basis of the decision is how close to death the >person is. Period.>

by the way….the above was NOT my quote!!!  I was responding to it… also…..just reread your post….the "wait time" should NOT be very dependent on the transplant center,,since all organs,,except living related and "directed donations" go thru UNOS???   rb Hawki…the nurse practitioner Any and all info given here is my opinion only,,and is not a substitute for consulation with your health care provider

Response:

I still say money talks and bull shit walks. Why did they decide to put persons with hepatitis-C on the bottom of the transplant list. Even with a new liver, the hepatitis-C doesn’t go away, it stays with you.

Response:

>ot true.  Simply not true.  This shit crops up every time a famous > person gets a transplant.  The basis of the decision is how close to > death the person is.  Period.

Well…This is partially true and partially not true!! Firstly…..if a person has their OWN donor….they get a transplant obviously regardless of others who may need it WORSE than they do…which is how it shoud be…..family members certainly would not be donating to folks they did not know nor care about….makes sense to me… Non living donors…that is,,from accident victims  SHOULD go to the person who is sickest,,and hopefully usually do,,but the nation is divided into several "organ networks"  by geography,,,and since there is a time frame within an organ MUST be transplanted,,,it is unlikely that it will be flown say to Calif from the EAst coast,,,if a person IN the East needs one,,even if the Calif patient is sicker… To answer Katherine’s question as to who pays….this is trickier… People who need kidneys and are on dialysis here on federally funded,,so our gov’t pays for MOST kidney transplants…Hearts,,livers,,lungs..however are NOT federally funded,,unless under some sort of special grant…So private insurance,,,private collections of money,,sometimes even donation by hospital and surgeons permit transplant…Also state funding in SOME cases… Actually for the majority of people who are transplanted..it is the follow up care and cost of anti rejection meds that is a REAL problem…..meds alone can cost about $2000 per month!!!  Not to mention ongoing medical care…again various sources of funding…..our feds finally wised up and extended kidney transplant receipent drug coverage,,,since organ rejection returns them to dialysis!! Complicated issue….. rb Hawki…the nurse practitioner Any and all info given here is my opinion only,,and is not a substitute for consulation with your health care provider

Response:

<not true.  Simply not true.  This shit crops up every time a famous person gets a transplant. The basis of the decision is how close to death the person is. Period.> Sometimes it is not who gets the organ but how fast they get that makes people suspicious. -Waiting list time varies from transplant center to center. It can be 18 months at one center and 6 months at another. -Donor organs must be matched by blood type. Those with rarer blood types will wait longer than those with common. -Physical size counts too for some organs such as lungs. A man who is large cannot take a lung from a small women for instance. Therefore a very large man with an uncommon blood type who is listed at a center with a long wait time might be on the transplant list for 3 years while a woman with a common blood type who is of average size and listed at a center with a short list time may get a lung in 2 weeks. If the women was famous, the family of the man gets very angry. Maureen in Mukilteo

Response:

This is a sad situation because of the on going story with M… Got the transplant,  feeling better but the dang hospital now is a different story. K and I still talk.. Ronnie An antique  *girl*

– Hide quoted text — Show quoted text -> I know of someone with Hep C who got a transplant.  California wouldn’t do > it, so he moved to Utah and got it.  He would have died without it, and he > was not a celebrity of any sort.   I’m not 100% sure, but I think this was a > Medicaid situation, after the insurance refused. > Mouse <:3)))))~~ > "This invisible man has a place for you full of fire, smoke, burning and > torture and he will send you there to choke, scream, die, suffer and burn > for the end of time.  But he *loves* you!" > ~George Carlin > : > : > 174.iap.bryant.webtv.net>: > : > > : > <snip> > : > > : > > juggler. I have hepatitis-C, just like David Crosby. But only the > : > rich > : > > and famous get a new liver like David had. > : > > : > Not true.  Simply not true.  This shit crops up every time a famous > : > person gets a transplant.  The basis of the decision is how close to > : > death the person is.  Period. > : > : Just out of interest – who actually pays for it? Do you need insurance in > : the US that covers it to have an organ transplant, and what happens if you > : don’t? > : > : > : — > : Katharine S. > : spamblock in action > : > : > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

174.iap.bryant.webtv.net>: <snip> > juggler. I have hepatitis-C, just like David Crosby. But only the rich > and famous get a new liver like David had.

Not true.  Simply not true.  This shit crops up every time a famous person gets a transplant.  The basis of the decision is how close to death the person is.  Period. mary — ‘What saves you finally from arrogance is knowing the thing in life that’s given you the most was itself a gift.’ –Bono

Response:

> 174.iap.bryant.webtv.net>: > <snip> > juggler. I have hepatitis-C, just like David Crosby. But only the > rich > and famous get a new liver like David had. > Not true.  Simply not true.  This shit crops up every time a famous > person gets a transplant.  The basis of the decision is how close to > death the person is.  Period.

Just out of interest – who actually pays for it? Do you need insurance in the US that covers it to have an organ transplant, and what happens if you don’t? — Katharine S. spamblock in action

Response:

I know of someone with Hep C who got a transplant.  California wouldn’t do it, so he moved to Utah and got it.  He would have died without it, and he was not a celebrity of any sort.   I’m not 100% sure, but I think this was a Medicaid situation, after the insurance refused. Mouse <:3)))))~~ "This invisible man has a place for you full of fire, smoke, burning and torture and he will send you there to choke, scream, die, suffer and burn for the end of time.  But he *loves* you!" ~George Carlin

:

: > 174.iap.bryant.webtv.net>: : > : > <snip> : > : > > juggler. I have hepatitis-C, just like David Crosby. But only the : > rich : > > and famous get a new liver like David had. : > : > Not true.  Simply not true.  This shit crops up every time a famous : > person gets a transplant.  The basis of the decision is how close to : > death the person is.  Period. : : Just out of interest – who actually pays for it? Do you need insurance in : the US that covers it to have an organ transplant, and what happens if you : don’t? : : : — : Katharine S. : spamblock in action : : — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

The local radio station in town were allowing people to log onto the internet three days earlier than a person who has no access to a P.C. Since I had a P.C. I welcomed the chance to get some good tickets. As I was filling out my request, there was a section asking about handy area, as well as seating for a companion. The next day, I received a notice from Ticketmasters, the company that was selling the tickets. They informed me that they are unable to provide me with handicapped seats and was told to contact the main box office on Saturday. Three days after the radios promotion started. I stated on the application for the tickets that if no wheel chair seating was valuable, I could use an isle seat so my legs could stretch out. I sill was told I had to wait. Does any one think the A.D.A. would be interested in this. David Crosby should know how it is, since he suffered from hepatitis-c.? Not long, Lee

Response:

Lee, Buildings that were not accessible prior to the ADA going in to effect, were grandfathered in from what I can recall. I think I am understanding your question.  If not, I apologize. Robin >Path: >lobby!ngtf-m01.news.aol.com!portc01.blue.aol.com!howland.erols.net!enews.

sgi.com!paloalto-snf1.gtei.net!news.gtei.net!webtv.net!not-for-mail – Hide quoted text — Show quoted text – >Newsgroups: alt.support.chronic-pain >Organization: WebTV Subscriber >Lines: 15 >NNTP-Posting-Host: localhost.webtv.net >Mime-Version: 1.0 (WebTV) >Content-Type: Text/Plain; Charset=US-ASCII >Content-Transfer-Encoding: 7Bit >X-WebTV-Signature: 1 >    ETAtAhUAhp8vpHnpJZYTetzikiqPrnLSAmICFFrJvf3OYaekyz1RH2yFAWLIRzL/ >Content-Disposition: Inline >The local radio station in town were allowing people to log onto the >internet three days earlier than a person who has no access to a P.C. >Since I had a P.C. I welcomed the chance to get some good tickets. As I >was filling out my request, there was a section asking about handy area, >as well as seating for a companion. The next day, I received a notice >from Ticketmasters, the company that was selling the tickets. They >informed me that they are unable to provide me with handicapped seats >and was told to contact the main box office on Saturday. Three days >after the radios promotion started. I stated on the application for the >tickets that if no wheel chair seating was valuable, I could use an isle >seat so my legs could stretch out. I sill was told I had to wait. Does >any one think the A.D.A. would be interested in this. David Crosby >should know how it is, since he suffered from hepatitis-c.? Not long, >Lee

I am *not* a Medical Doctor (MD) or *any* other type of Medical Professional. PLEASE consult your own Dr. for medical advice.  The information posted is information I have learned from researching or learning from my own disease.

Response:

If these buildings were "grandfather" why would they have a special section regarding special seating for wheel chairs, visionary impaired, etc., that I had to fill out. I told them a wheel chair was not really needed, but I would require an aisle seat so my legs stick out and I wouldn’t have to stand. That’s not aking for much. In addition, the box office uses the same computer as TicketMasters.com. So how would they know more?

Response:

Thank’s Ziggy:  I was looking at the A.D.A. web sight. It also stated (just as I asked) that they must provide seating on the end of the isle with removable arm rests for handicapped persons who may not need a wheel chair, but have limited motion. In addition, like you said, a seat must be available for a companion to sit next to you. At the price Crosby, Stills, Nash, and Young were charging, I will go for the juggler. I have hepatitis-C, just like David Crosby. But only the rich and famous get a new liver like David had.

Response:

Dose anyone know weather there is a site for the ADA?  Or some type of way to contact them. I always wanted to get some help from them.   Ex.  a few days ago a tow truck came to tow my car.  The driver said straighten out your wheels.  As i sat it the car and did so he ran the tow into my car wheels.  I was going insane screaming …. Dont u see the handi tags look what your doing.  Man there ought to be someone i can contact to not let this happen again.  The guy basically tolk me  to F…. off.  I have multiple surgeries, spine both shoulders were dislocated, elbow too in an accident  12 years ago.  this kind of stuff ruins me for weeks or months. Anyhow would like to know how to contact the ADA about this kinda stuff thanks John

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