JIM...S/P RECENT PANCREATECTOMY & ISLET CELL TRANSFER/SHIRLEY

[Guest guest]

Hey all,

Although Jim has not posted for quite some time (I think he was posting

frequently back in April/May of 2000), we have both kept pretty much on top of

the posts from everyone and have gathered SOOOOO much info from all of you. A

special THANK YOU to Shirley whom we've emailed most often in the last few

months with all of our questions about this surgery--and whom, should I mention,

replied back to us every time! We have learned so much from all of you.

Anyways, I wanted make you all aware that my husband, Jim, recently had the

pancreatectomy and islet cell transfer. This was done on August 19th by Dr.

Sutherland in MN. Today is day 11. I am back home for a short time as we have

3 kids (ages 6, 8, and 11)... I I KNOW he is being taken care of there and felt

I was needed more back home with the kids. I plan to go back a few days before

his discharge (I'm not sure of when that is yet). Jim's recovery has been a

slow steady ride uphill! Dr. Sutherland removed his pancreas (which was

atrophied--much smaller than normal which is from the CP), appendix, gallbladder

and spleen. It was quite a long surgery, about 10 hours and 2 hours in

recovery. They transferred 150,000-160,000 islet cells into his liver. He

would have liked to get more for his body weight. I couldn't believe they had

him up walking the 3rd day already. The 2nd day he needed 2 units of blood

since his counts were a bit low...since then, they've been normal. He's been on

a morphine IV drip, along with the TPN. He continues to progress each day I

talk with him. Today, they cut the morphine down and started him on the

duragesic patch. His GI tube was removed 3 days ago and he had broth and jello

for the first time since the surgery--he's been eating more little by

little---with NO PAIN FROM EATING, NO VOMITING, NO NAUSEA! Don't get me

wrong--he IS in quite a deal of pain, but he says it's a different pain than

before...where the incision is; but, even THIS pain is getting better every

day. The doctors are pleased with his steady progress. He's had no other

complications thus far. We won't know if he'll be diabetic for sure until the

insulin drip is stopped. The nurses told me they give him the insulin in very

small doses so those islets don't have to work so hard initially and they rest.

Also, he is still receiving the TPN which raises the blood glucose since it has

glucose in it. He'll be on that until he eats more normally. His blood sugars

are checked every 2 hours around the clock as they want them between 80 and 104

for him. So, all in all, he is doing as well as can be expected for having 4

organs removed 11 days ago!

As I mentioned, we were always reading the posts and I remembered was to

have his surgery August 12th. Well, we got to meet and Peg Bates! I

can't even begin to tell you how wonderful that was...to finally meet someone we

have so much in common with and to be able to share our " stories " with each

other. Her and I sat in Jim and 's rooms and chatted away! Jim has

been suffering from CP for 5 years. He's been out of work since June of 2000.

He collects LTD with his company he works for and also has been receiving SSI

disabiltiy since December of 2000. His pain was most often a 7 or higher,

constant and pretty much confined him to his bed everyday. Even with all the

pain meds he was on, it never got below a 7. He could hardly eat as it seemed

everything caused him more pain. He tried celiac plexus blocks, accupuncure,

radiofrequency of the abdomen at Cleveland Clinic, reiki, herbs, and trigger

point injections. He had 3 stents which gave little if any pain relief,

numerous ERCPs, CT Scans, an MRCP. His quality of life was affected so much

with this dreadful disease. His doctors are not exactly sure why he developed

CP. He sometimes thinks it could be alcohol which he did drink quite often in

his younger days...and maybe we'll never know for sure. I DO know that he went

from a stressful, very fast paced job, outdoorsman who loved fishing and

hunting and just walking around the woods, a dad who played with his kids as

often as possible to " no life " (his own words). Actually, that's how he came to

this decision to go ahead with the surgery. He just said, " I am so sick of

having no life " . So, that's when we contacted Shirley, and informed his PCP--an

internist --of this surgery and about Dr. Sutherland. He spoke to Dr.

Sutherland on the phone a few times and we all agreed he's tried everything

else. Jim's insurance company (Select Blue) approved everything and is paying

100%--it DID take 2 appeals though. Once the insurance company received the

info Dr. Sutherland sent them (slides showing various statistics to date of all

the patients who've had this surgery along with a letter); also Jim's PCP sent 2

letters in favor of the surgery. We really didn't have a definite surgery date

until about 3 weeks prior to it so we had little time to figure out

everything--who'd watch our kids, where would I stay, how would we get there,

etc. We ended up flying there--about a 2 hour flight.

So, I just wanted to share with all of you " Jim's story " ... and to thank you all

so much for just being here and sharing your stories and knowledge. We're

finally seeing light at the end of the tunnel! I'll keep you all posted on

Jim's recovery!

Friends in Pittsburgh, PA

Lorrie and Jim