A Walk with Sara and Grace

5:40:51 PM CDT I started writing this update on Friday. I wrote and I wrote and I wrote and then I pushed something I wasn't supposed to so it all went away.  I didn't write anymore that day.  It took a while, but I thought I'd try again.

Ron & Sara came home this past Thursday.  I haven't seen Sara look and feel this good in a very long time.  She seems like her old self again.  I know she's happy not to be miserable.

In fact, Sara felt good enough to go to Birmingham with her sister to a bridal shower and subsequent dinner on Saturday.  They got a hotel room and came home today.  She's tired, but fine.  How wonderful is that? We were beginning to wonder, and I bet she was, too, if she'd ever feel human again.  God is good, you just gotta' hang in there.  He may not do things on our time schedule, but He always does things.

Sigh...


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3:49:39 PM CDT

I apologize for the delay in this update.  Ron returned to Miami yesterday, Thursday, April somethingorother.

Sara was released from the hospital yesterday and is with Ron at the Transplant House.  I think she has one more treatment scheduled early next week.  She seems to be responding well to the GvHD treatments thus far.  If all goes well, they will be headed home next Thursday. 

I know it's good for both of them to have Sara out of the hospital.  Thank you all for your prayers and donations and love, we couldn't have made it through all of this without your support!

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10:26:10 PM CDT     Ron came home today. It's good to have him home.  He talked with Sara this evening.  She walked around the floor a few times.  She's lost about 30# in the past couple of days (fluids are miserable!).  That helps her feel better. She gets so overloaded with fluid retention, it makes it difficult to move & get around.  She had another GvHD treatment today.  They did another GI scope the other day.  The results aren't back yet, but the reports from the doctors are that it's not as red and irritated.  That's a good thing!  Hopefully she'll be home soon.  Perhaps this is the corner she had to turn to get all better!


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5:16:18 PM CDT Sara's doing OK.  They did another colonoscopy.  She has a bleeding ulcer.  I'm not sure where the ulcer is, but they went in & put some medicine on it.  That just doesn't sound pleasant...

They're still treating her for the GvHD.  Ron is coming home Thursday.  We have a Fraternal Order of Police (FOP) Conference Sunday - Wednesday.  Ron's the state Secretary/Treasurer, so this isn't something that can be skipped.  The FOP has been very supportive through all of this.  Their donations kept us out of the poor house with all the expenses incurred (of which $0 are tax deductible because Sara is an adult, Uncle Sam doesn't care who spends what to take care of family members). 

Sara's mom is heading down there Thursday while Ron is home.  Hopefully, Sara will be home soon.  If Sara doesn't come home before, I think Ron will return the following Thursday, after the conference. 

So, keep up the prayers, we need them!


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8:24:26 AM CDT Ok, I don't know that anyone knows what's going on with Sara.  The doctors think Sara has graft-host.  They call it GVHD - Graft versus Host Disease.   They started her on some medicine yesterday for it.  We'll see what happens.  I'm back to the 1/3 details from Ron, but I'm a little more understanding these days.

She has to have the drugs (I think this is correct....) once a day for 10 days, then it'll go to less. Eventually it'll go to about once a month treatments. I don't know if this will be a lifetime treatment or just until the GVHD is under control.

As I know more, I'll keep you apprised.




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2:47:47 PM CDT I heard back from Ron.  The doctors have confirmed that Sara has graft-host rejection.  It's not as easy to fix as "normal" rejection (where the body rejects the new organs).  Graft-host is when the new organs join a coalition and gang up against the host body.  If you've been able to surmise, it's harder to diagnose, too.

So, the game plan is to immediately give her two units of blood.  Something about doing that helps the body get back in control.  Then they'll "tweak" her meds - doesn't that sound fun?

I'm thankful for the diagnosis.  At least now they know what they're dealing with.  Hopefully they have learned (via the hard way, thanks for hanging in there Sara) some new symptoms of GH.

That would obviously play into why Sara has been nauseous and unable to hold things down - the stomach was rebelling.  Silly stomach, didn't she know she needs the rest of Sara?   She had a fever spike yesterday, but hopefully things will get under control now that we know what we're dealing with.

ttfn,
Us

(that's:  Ta Ta For Now = ttfn)


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8:15:47 AM CDT Friday was a good day.  Thursday they did a colonoscopy on Sara with NO anesthesia or pain meds.  They couldn't get a vein to put in any drugs.  After that, I think Friday was a shoe-in.

They were able to get a central line in. That was the best news yet!!!  That means that when she needs some fluids or nutrition it won't require a hospital stay.  It's kinda' ironic that when she's in the hospital, only an RN can touch those lines (the LPNs can't hook up fluids or jab some drugs in the line) but when she's home, we use them all the time.  Sara & Ron take better care of that central line than any of the nurses do.  It's imperative to keep it clean because it's an open wound straight into the blood.  They kept her last one clean for a year (before the fiasco on one of the previous trips to Miami). 

Sara still has the hoof & mouth disease.  (Sorry if I'm repeating myself, but I don't typically re-read the previous entries)  They haven't gotten the test results back from earlier in the week checking for graft-host rejection, nor from the biopsies from the non-anesthetic colonoscopy.  It doesn't seem that graft-host is as easy to diagnose as host-graft (typical) rejection.

Ron said she's put on a fair amount of water weight.  I'm not sure if that's a good thing, but it does give a sense of "normalcy" to this hospital stay.  She usually gains about 40 - 80# of fluids when she's in there.  It is extremely uncomfortable for her.  It always comes off, but because it happens so regularly, maybe it's a sign that things are getting better for her - back to "abnormal" before normal sets in. 

Sara's feeling better.  She's been able to hold down most of her food.  They'll probably hook her up to some TPN for a couple of days to ensure her nutrition.  They want her to drink ensure to help with her nutrition during normal life.

With the central line getting in, Ron sounded a zillion times better.   Which, of course, makes me feel better, too.  Welcome to the circle of life in the Ultz world.


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8:01:37 AM CDT     Today is another day...They moved Sara up to the 15th floor (that's where they put the multi-visceral transplant patients).  She was on the 14th floor (the "other" transplant patients) because they didn't have a room on the 15th.  Is it good or bad that they were full?  Hmmmm.....

They are planning to do another lower GI exam, specifically looking at Sara's remaining original colon.  If that doesn't look good, they'll know for sure it's Graft-Host rejection.  It's treatable, but usually they'd rather have it the other way around.  Treatable is good though....  Her symptoms are funky....but everything with Sara seems to be funky, poor girl.

So, prayers are coveted, still.  Ron is miserable down there.

Yesterday, Ron took Sara over to Au Bon Pain (a restaurant in the courtyard of the hospital) and they sat outside & watched people.  I think that lifted both their spirits.

ttfn....


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8:06:16 AM CDT Dr. Kato is the doctor who did Sara's surgery....how amazing...

Miami doctor breaks new ground in cancer surgery

MIAMI (Reuters) - Dr. Tomoaki Kato had to remove a lot more than a cancerous tumor during an unprecedented operation on a 63-year-old Florida woman earlier this month.

To get to the tumor, which was buried deep in Brooke Zepp's abdomen and threatened to kill her within months, the organ transplant specialist said he first had to remove her stomach, pancreas, spleen, liver and small and large intestines.

The organs were chilled and preserved outside Zepp's body during a painstaking 15-hour operation at the University of Miami/Jackson Memorial Medical Center.

They were re-implanted in their normal position after the tumor -- which was about 2 inches in diameter and wrapped around Zepp's aorta and the base of two other arteries -- was removed.

Kato said that never before have six organs been removed from a patient's abdomen to allow doctors to go after a malignant growth previously considered inoperable because of its location.

"There's nothing really simple here," Kato, who trained as a surgeon at Osaka University in Japan, told Reuters on Monday. "I don't want to say acrobatic but it's kind of, in a way. It's a very tricky operation.

"We've done pieces of this surgery many times but not the whole thing like this," said the 11-year veteran of the University of Miami Transplant Institute who led a team of doctors that operated on Zepp.

Zepp was diagnosed with leiomyosarcoma, a rare form of cancer. But Kato said the type of surgery he performed on March 4 ultimately could benefit people with more common diseases.

"There might be a lot of applications," he said.

During the operation, Zepp, who was expected to be discharged from her Miami hospital this week, had many blood vessels replaced with artificial ones made of Gore-Tex.

"She came to me out of desperation,' Kato said. "I'm really glad it worked out well."

(Reporting by Tom Brown; Editing by Michael Christie and Xavier Briand)

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10:53:42 PM CDT Hey, I stayed at a Holiday Inn Express, so surely I can diagnose Sara:  She has hoof & mouth disease.  Her palms, the soles of her feet, and her mouth all beet red, excruciatingly painful, and swollen in a weird sort of way.

She has had these symptoms before.  She came home from Miami the last time with this (which was not the first time she's had this either).  It is almost impossible for her to walk when this happens, as the soles of her feet hurt so bad.  It is hard for her to hold or manipulate anything because her hands are painful.  Her mouth gets full of blisters, her tongue and lips swell.  When these symptoms clear up, her hands and feet peel like she was shedding.

They ran some tests today.  Ron said they took blood a few times.  One thing they are considering is graft-host rejection.  This is also known as "reverse rejection".  When the transplanted organs begin to reject the host.  When it occurs, it's usually in cases like Sara's where numerous organs have been transplanted.  They were also scheduled to "scope" her.  They were going to do at least an upper GI scope to see if there were issues in her stomach as to why she stays nauseated and cannot keep any food down. 

The hospital was able to get an IV in her hand.  It blew today.  They were also scheduled to map her veins to see if they could get a central line in her today.  Sara is very week from not being able to eat in over a week.  She needs to get a central line in so they can administer TPN. 

I'll have more to post when we get the results back.  It has been a very long day for everyone involved.






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