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[IP] kidney transplant

Hi, I'm sorry but I can't make out who sent this e mail...there is a lot of
information you missed during your session.

I was with my brother when he had his kidney/pancr. transplant and went
through the whole thing of waiting for him to come out of o.r., recovery,
step down room and then regular room and every little thing that he went

First of all, they don't let you out 2-3 days...you have to stay in there
until you are breathing properly, eating properly, urinate properly and have
bowel movements properly.

Most of the times, you have to stay very close by the tx center because you
have to go back 3x a wk. for blood work up.  This is to test to make sure
that the organ is working, that your levels are good, etc. etc. and then
they make adjustments to your dosages of meds.

If you are on medicare and already receiving dialysis, then medicare will
pay for your drugs (used to be 3 yrs but now has changed to more)...that's
why non compliance...people couldn't afford the drugs.

Prednisone...sp?  some hospitals still use it but most don't.

As far as germs are concerned, you are to stay away from crowded places and
you have to wear a mask, not the other way around...so that you don't get

You cannot drive, etc. for a while until all is healed and get the ok.  My
brother was a kidney/pancreas recipient and had to stay in Miami for one
month after the surgery and then he came home and by that time, it was ok to
have blood drawn 1x a week and have it faxed back to Miami.

Are you going on the list?  If you have any questions or would like to speak
w/anyone who has been a recipient, I can put you in touch with several

Good luck.
Kathy B.

-----Original Message-----
From: email @ redacted [mailto:email @ redacted]On Behalf
Of J Hughey
Sent: Friday, September 07, 2001 12:05 AM
To: Undisclosed-Recipient:@mail1.mx.voyager.net;
Subject: [IP] Trip to Chicago - long

We got to Chicago to Northwestern Memorial Hospital for the transplant
session - about 19 patients attended as well as our *guests*. I took 3 pages
of notes and will try to condense what I learned. There were about 5 rows
and we got there when the room was quite filled so sat in the second row -
next to a man from South Bend (Tom)!  He got there on the train and we took
him home - he bought our dinners at Ponderosa. He's had DM 44 years and
kidney function at 22% (mine is less than 16 now). It was a good trip with
lots of convo.

Some of the notes I took:
*Northwestern is #4 out of 59 and I don't recall (Hillary Syndrome) of what.
They are #13 out of 250 for kidney transplants, #3 of 80 for pancreases.
*Receiving one kidney causes it to grow to the proper size to handle the
work of two. Some people are born with one kidney and it works sufficiently.
*Each kidney has a million filters that we are born with. No more are added;
as they deteriorate they cannot be regrown or renewed.
*Dialysis acts like 1/10th of kidney function
*When function is between 10-20% that's the window for transplant and
*250,000 are on dialysis - 130,000 are okay to transplant (after this I'll
use *tx*) - 50,000 are on the list.
*About 5,000 cadavers are available a year giving 10,000 kidneys a year.
*Of the above number, only 2000 pancreases are *good*.
*One kidney does 50% of the work when two are present. Right away a lone
kidney functions at 80% and within 3 months it grows the same in size as
those born with one good kidney.
*People with a bad liver, lungs, or heart are not good candidates.
*Immediately after tx you are on I.V. - go home 2nd or 3rd day after tx.
*They stopped using Prednisone about 3 years ago. 250 patients have been
without it at all from NMH.  :)
*The *added* organ is of different DNA and it never converts to the new
host's DNA, therefore, antirejection drugs have to be taken forever. One is
about $22 a day, the other two (of one choice) $36/$28 per day.
*Medicare covers 80%. Best to have private insurance and Medicare takes the
gap. They have a person who works diligently at this.
*More meds are needed the first 6 months and need to get through the first
*Most rejections are due to non-compliance. One third stop taking their meds
and get into trouble. If you feel well, take your meds!!
*Most rejection problems are in the first month or three.
*They want you out of the hospital fast since hospitals have super germs.
They feel they can deal with the *outside* germs better than hosp. germs.
*To get listed you need to be informed, all medical problems need to be
reported to them, some additional tests, need to do tissue typing (DNA)
through blood test, inform of intent to get listed, contact insurance, wait
for ins. okay which may require a few more tests.
*All living donor costs and tests get billed to the recipient's insurance.
*Risks to a Living Donor:
Operation; future illnesses are NOT an issue since kidneys get equally
diseased. Having one kidney and it gets diseased it would be the same for
both equally if the L.D. still had both - the disease process destroys both
at once. Four small incisions are made on the top front side to snip the
arteries; the kidney shrinks and removed through a 2.5" incision above the
belt line. Band aids are made on the small incisions, a larger one on the
2.5" one. This procedure is about 3 hrs. The LD mostly goes home the 2nd
day, driving in 1 week, to light work in 2 weeks, but 6 weeks for full work
if strenuous.
*The recipient has the kidney placed below the belt in front close to the
*They leave the native kidneys in to reduce the need for more surgery.
*Most recipients are off BP meds in one year.
*Type O blood can donate to any type. Type O blood can receive only Type O
from a donor (living or cadaver).
* I'm Type A and can receive Type A or O. Negative or positive is not a
*Blood test given to see if Recipient (R) is allergic to Donor's (D) DNA - 1
of 10 are.
*Siblings are 0/0 match, 3/6 match, or 6/6. Parent-child matches are 3/6
because 1/2 of DNA comes from each parent.
*In the first year, the success at NMH for Cadaver Donor is 95%;
Sibling-sibling is 99%; All other L.D.'s 97%.
*A blood sample has to be sent to the center monthly to keep up to date for
*the call*.
*To receive a tx, they go by *points* - 1/2 of the points are waiting time
and max points is 3 years - you don't get more points, that's the max even
though you may still be waiting.
*With the shortage of organs, the nationwide wait is about 5 years.
*1/2 of points are DNA matching.
*Children under 15 get tx'd ASAP since they stop growing with kidney
*About half of tx's at NMH are LDs, other half from Cadavers.
*Get listed for Kidney and if a pancreas comes available as well, you get
it. Vice versa.
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