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Author Topic: Getting my 1st fisutla next Wednesday...what should I expect?  (Read 4505 times)
Annig83
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« on: January 09, 2013, 09:00:21 PM »

Hey guys-

I'm scheduled to get my first fistula next Wednesday and I'm super nervous!  What should I expect in terms of pain, drowsiness...etc? 
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Lexxtech18
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« Reply #1 on: January 09, 2013, 10:30:01 PM »

First off, congrats! You'll get a great cleaning with a fistula!  :clap;

Secondly, if by drowsiness you mean coming out of the surgery itself, that depends on your body. Anytime I have a surgery it takes hours for me to come out of it. I just love to sleep! lol

Pain... well, it's been 7 years since my first fistula surgery, so I don't really remember the pain. It was very sore, but that's expected with most surgeries. Is it going to be upper or lower arm? I think upper arm is more sensitive area, so that may hurt a bit more. Just be careful with it! Don't lay on that side. Remember to feel for the bruit/thrill every day. And remember it will look horrid and bruised for awhile while it's healing but that will go away. :)

Good luck, hun!!  :cuddle;
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
Annig83
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« Reply #2 on: January 09, 2013, 11:00:56 PM »

Thanks Lex

It'll be in my lower left forearm.  I'm a drowsy person too... I hope I come out of it okay... I have a tendency to do poorly with anesthesia :( 
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Lexxtech18
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« Reply #3 on: January 09, 2013, 11:21:39 PM »

I'm sure you'll do fine! It may be the best sleep you get all year.  :rofl; Do you usually get nauseated with anesthesia? I once got sick while under.., docs were not happy. Lol
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
Sue
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« Reply #4 on: January 10, 2013, 01:44:58 AM »

I had my fistula op last April ( haven't needed to use it  YAY!) I was wide awake in recovery room, had very little pain at all. The thrill was present straight away. I was in hospital for one night. You do need to be careful not to lie on it :) My hand was numb in parts for several months. I has to do exercises to help it mature - squeezing ball !
I had a stenosis fixed last October and several little veins which were branching off fistula tied off last November, I had a scan today and it looks good apart from a little narrowing at surgery site.
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
CebuShan
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« Reply #5 on: January 10, 2013, 07:30:58 AM »

I had some pain afterwards but they put in 2 at the same time. 1 in my lower arm that we used first, then a second deeper one as a backup.  I suggest having a pillow to rest your arm especially on the trip home. When I first started to feel the "thrill", I told the kids that they put a kitty under there and it was purring!   :rofl;  You should be fine. I'm a coward when it comes to pain and I managed to survive.   :cuddle;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
Alex C.
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« Reply #6 on: January 10, 2013, 09:47:55 AM »

My fistula last September was a failure. I'm in the process of suing the surgeon for the co-pay, because he decided that 'vein mapping' was not worth the trouble. Of course, when the fistula ended up never working, and I DID go for vein mapping, it turns out that my left forearm was the ONE place he never should've tried.

For your benefit, if the surgeon has NOT done a vein mapping procedure on you, then cancel the surgery right away, and have this procedure done first.
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Cordelia
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« Reply #7 on: January 10, 2013, 01:36:30 PM »

Good luck! I had hardly any pain. I only took extra strength Tylenol for any minimal discomfort. I've had mine just over a year and its running well minor bumps along the way but that's to be expected
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Sax-O-Trix
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« Reply #8 on: January 10, 2013, 02:44:30 PM »

I would have thought that vein mapping would be a requirement for placing a fistula.  The fact that it isn't is rather scary.  I guess I learn something new all the time!

I hope everything goes well and you are up in no time at all!
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Preemptive transplant recipient, living donor (brother)- March 2011
kit78
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« Reply #9 on: January 10, 2013, 03:25:43 PM »

Congrats!  I had my Fistula done Sept. 18 of last year. Now I go for "Vein to surface" surgery next week.  My arm was numb for 2 days.  Did have some pain and he gave me a narcotic which did help but makes you sick and constipated so DO make sure you get Colace or some kind of stool softener or you WILL be sorry.  This time I will just stick to ADVIL...LOL
I was "Twilighted" and was wide awake afterwards. They didn't give me regular "anesthesia" which is what they use for a transplant.  But don't worry, it's not as bad as you think.  My biggest worry is because I live alone and do not have anyone around to help me, but it went ok.
Good luck with everything and don't worry! It will be fine. :2thumbsup;
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
Alex C.
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« Reply #10 on: January 11, 2013, 08:12:34 AM »

I would have thought that vein mapping would be a requirement for placing a fistula.  The fact that it isn't is rather scary.  I guess I learn something new all the time!


Yes, and sadly, this guy was the top fistula surgeon for a major hospital in a fairly large city! A surgeon with 35 years experience, even!
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Annig83
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« Reply #11 on: January 11, 2013, 11:58:08 AM »

Thanks all!  I feel a little better knowing that it's no biggie.  I've had lots of surgeries...and I mean lots  I think I'm up to about 20 in my 29 years!  I had a vein mapping a month ago because I have DVT's in my right arm from a PICC line after having my son 2 years ago.  My right arm is a complete mess and so the doctor knows not to even attempt it.  My left is awesome though.  Said it was the best arm he's seen in a while :)

I don't get sick with anesthesia, I've been twilighted before for a liver biopsy and thought it was so cool.  They showed me the sample right after they removed it :)  I was planning on going back to nursing school before I got this bad with the ESRD, so any medical stuff makes me happy as a clam :)

I'm not sure if they plan on putting me completely under or not?  I don't know the procedure around here.  Guess I'll find out Wednesday.  I'll let you guys know what happens!
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Mr Pink
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« Reply #12 on: January 12, 2013, 03:39:32 AM »

I had my fistula done on my upper left arm on October 22nd and it was a walk in the park. I was home after four hours following the procedure itself. There was no bruising with me (which is unusual given how easily I do bruise), and there has only been minor bruising since it started being used, which was only recently. I must admit, I was a bit anxious about having it done, but when it was all over, I concluded that my anxiety was really over nothing. It was a doddle, as the Poms would say.
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Lexxtech18
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« Reply #13 on: January 14, 2013, 06:04:04 PM »

I won't go into detail of the nightmare that happened with my first fistula...  :shy; Let's just say... it.. kind of... exploded while I was recovering in hospital. -_-'
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
Annig83
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« Reply #14 on: January 20, 2013, 10:30:12 PM »

Hey guys. I'm happy to report that my first fistula is a success! It's in my left wrist. It's buzzing like a swarm of bees... At least that's what we tell my two year old to explain to him what it's like. :). He says Momma feel bees? I let him touch it and he laughs. Glad he thinks its cool lol. It's extremely sore though, I had to have a highe dose of pain meds, but its healing well. They had to cut into my wrist tattoo though. My sparrow and cherry blossoms may have not survived but I'm hoping I will?!
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
natnnnat
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« Reply #15 on: January 21, 2013, 04:01:55 AM »

Lexxtech:  Whaaaaaaaaaaaaaaaat????
Annig: Good news!   :thumbup; :thumbup; :thumbup; :beer1;
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
MooseMom
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« Reply #16 on: January 21, 2013, 01:32:41 PM »

Well done, Anniq83!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Lexxtech18
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« Reply #17 on: January 21, 2013, 02:44:02 PM »

That's awesome news, Annig! Glad everything is working out alright!  :bandance;

@natnnnat: Yeah, it was not pretty. They didn't sew it shut, they used the surgical glue stuff and one night it just popped open. For months we had to pack it with sterile gauze and clean it out. It was a nightmare. But it's done me pretty well for the last almost 8 years. I had a jumper graft hooked up to it about 4 years ago. Still kickin!
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Diagnosed with Bilateral Hypoplastic Kidney Disease - 1990
First Livinig Donor Transplant (from my mommy!) - October 3, 1996
Transplant Failed/Put on Hemodialysis - May 2005
Second Kidney Transplant (deceased donor) - July 2010
Transplant Failed/Restart In-Center Hemodialysis - February 2011
CebuShan
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« Reply #18 on: January 22, 2013, 11:16:04 AM »

Hey guys. I'm happy to report that my first fistula is a success! It's in my left wrist. It's buzzing like a swarm of bees... At least that's what we tell my two year old to explain to him what it's like. :). He says Momma feel bees? I let him touch it and he laughs. Glad he thinks its cool lol. It's extremely sore though, I had to have a highe dose of pain meds, but its healing well. They had to cut into my wrist tattoo though. My sparrow and cherry blossoms may have not survived but I'm hoping I will?!

I used to tell the kids it was a cat purring!   :rofl;
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
Annig83
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« Reply #19 on: January 23, 2013, 11:08:30 PM »

Everyday Carson (my son) asks to hear and feel the bees!  :rofl;  he's so funny.
Everything is healing like it should but my thumb is killing me. I asked the surgeon today is that's normal and he said they stretched a nerve while doing the fistula... It hurts so much!! Hope it goes away soon?! Anyone else have that? And I so what helped you ?  I've been using a heating  pad just on the thumb area (not on the fistula site). It helps a bit but its almost like a burning sensation that won't go away. :(
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
gothiclovemonkey
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« Reply #20 on: January 23, 2013, 11:30:44 PM »

employ the 'stress' ball as much as you can. if you cant handle it, mimic the motion.
i replied on fb, so i wont here.
i hope it goes away sooner, rather than later. i know that blows.
stretched nerve? ive never heard of that though... ive had the nerves cut in my tummy (not on purpose!!) when i had my tumor removed when i was 9, havent felt anything on my tummy since.... (weirdness though,  i have felt an itch and absolutely couldnt scratch it!!!)
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"Imagine how important death must be to have a prerequisite such as life" Unknown
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LISTED ACTIVE! 11/14/11 !!!
Krisna
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« Reply #21 on: January 26, 2013, 03:56:43 AM »

Hey guys. I'm happy to report that my first fistula is a success! It's in my left wrist. It's buzzing like a swarm of bees... At least that's what we tell my two year old to explain to him what it's like. :). He says Momma feel bees? I let him touch it and he laughs. Glad he thinks its cool lol. It's extremely sore though, I had to have a highe dose of pain meds, but its healing well. They had to cut into my wrist tattoo though. My sparrow and cherry blossoms may have not survived but I'm hoping I will?!

I tell my young niece's and nephews there are bees in my arm too!  I also used to tell my younger sisters that when we were kids.  I got my first fistula at age 15 and had it for 21 yrs.

Definitely do all the excercises they prescribe as much as you can handle.  I didn't with my first one and developed an aneurysm near my wrist.  And it never got very big so it infiltrated all the time.  I had it a long time because they patched it a bunch so I guess it was more graft than fistula in the end.  lol
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  The fistula I have now it huge because I had the old one so long.  I had a lot of pain at first but it went away in about a month.  The first one was too long ago to remember!
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Nov. 1979 - Diagnosed with glomerulonephritis of unknown origin by Dr. Robert
                  Hickman
Dec. 1979 - Diagnosed with Viral Pneumonia
Late Dec. 1979 - Emergency surgery to place a Scribner Shunt in left arm for dialysis
Jan. 1980 - Start hemodialysis until recovered from viral pneumonia
Feb. 27, 1980 - Receive 5 antigen living related transplant from father
Mar. 3, 1987 - PTH removed and part of one placed in left arm.  Fistula also placed in right arm.
Sept. 1988 - Start hemodialysis
Feb. 4, 1989 - Receive 6 antigen perfect match cadaveric transplant
Jan. 1994 - Return to hemodialysis
Oct. 18, 1996 - Receive 6 antigen perfect match cadaveric transplant
Nov. 22, 1996 - Emergency surgery to repair aneurysm to artery in kidney
Dec. 20, 1996 - Emergency surgery to repair aneurysm.  Kidney removed due to infection which has spread down right leg to abt mid thigh.
Apr. 1997 - Arterial bypass surgery to restore arterial blood flow to right leg
July 29, 1998 - Receive 6 antigen perfect match cadaveric transplant
Sept. 6, 2002 - Return to hemodialysis
Dec. 7, 2002 Sm. intestine ruptures while home alone. Still conscious upon arrival at hospital.
Dec. 8. 2002 - Surgery to repair ruptured bowel.  The prognosis is not good.  Surgeon tells family to prepare for the worse.  Spend a week in a coma and 3 months in hospital.  Takes abt a year and a half to completely recover.
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