Re: Jackie

[Guest guest]

Hi everyone:  Just returned home from 's transplant evaluation.  It was

discouraging.  They are saying he has too much liver tumor to meet the criteria

for the list.  We told them about the SIRSpheres treatment he had on March

25th.  They seem to think that it only works about 20% of the time and they

wanted him to have another mri this week.  The radiation dr told us not to get

an mri too soon because they need time to work.  I am worried.  What are we

supposed to do?  Wait until the tumor grows even more?  I didn't expect an

answer today but I didn't expect this either.  I feel like we have to brace

ourselves for the worst.  Anyone have an experience like this?  I'd be

interested to know.  Thanks, Jackie

From: abijann <no_reply >

Subject: Jackie

To: livercirrhosissupport

Date: Sunday, April 19, 2009, 8:00 PM

Please let us know how your husband does with those chemo beads.

It would be so great to know that the tumor is destroyed... it

would give alot of people more hope of a cure. It would be like

a miracle. I get very excited about new advances in medicine that

truly help people. Best wishes to you guys.

[Guest guest]

Thanks.  Sometimes when we are the one dealing with feeling like we ran into a

" brick wall "   we don't see things clearly from another point of view.  Maybe we

should re-think this and give them a try.  Thanks, Jackie

From: abijann <no_reply >

Subject: Jackie

To: livercirrhosissupport

Date: Tuesday, April 28, 2009, 9:20 PM

Transplant Centers handle things very differently from other hospitals.

You are being evaluated, just as much as your husband is.

They check to see how compliant your husband will be in keeping all

appointments, doing all testing that needs to be done (whether it

is blood tests, MRI,CT scan, Ultrasounds) , whether he takes the

medication they prescribe for him. Any time they think that he

isn't doing something... they mark him up as being non compliant.

You have to be certain that they get all tests results...if you

have testing done anywhere else besides the transplant center.

The reason they want you to be with the Transplant Center there and

go to their cancer doctors is because they trust their own doctors

more for accuracy of the results than they would another hospital

and also because they would have access to his records easier to

see how he is progressing. Also, because when they do the transplant,

if they run into problems, all his doctors would be right there.

And if he has testing done, they can view those films easier than

just receiving a report on it. You would be surprised how much

more that would tell them than the report does.

[One example of this is that different labs that take a persons

blood samples have different reference ranges that they consider

to be normal range. There have been people in my own family who

were given a clean bill of health and took the same films from

that hospital and went to another hospital radiology department and

was told they saw something on the films that the first

radiology dept missed.]

They check you out, also...though you may not realize it.

They seem to test you to see how much support you are to your husband

and whether you are right there to help him. You are really a plus

to him. If you show them that they can count on you to take good

care of him and notify them if anything may be wrong after the

transplant and get him the care he needs when he needs it...

they will look at that as him having a greater chance of survival

after the transplant then someone who has to rely only on themselves

or go to a nursing home. They may ask you alot of questions and

see how you react to things, also. If they see how truly you care

about your husband...they take that into consideration.

It can be very frustrating at times. They do make exceptions in

some cases based on everything they collect. I would not give

up hope that they may list him.

Don't take this as being of what you should do. The decisions you

make have to be between you and your husband. I'm just pointing

out a few things from my own experience. I'm in no way a

professional.

[Guest guest]

Thanks so much for your encouraging words.  The largest tumor is 4.8 cm and the

cut-off to make the list is 4.5.  Maybe it would be re-considered since there is

now 'dead tumor'.  I'm not sure where to tell the dr. to send a letter to the

transplant team because we would like to have him evaluated at another center. 

I understand that individual centers have different criteria so if the 2nd

center we go to has a stricter criteria I guess we would have to stick with the

1st.  So you can see, we are in a catch 22.  I don't want to 'slam the door in

one center's face'.  That might be cutting our noses off to spite our face as

they say.  We have to keep all options open.  It takes the beads up to 3 months

to work and he had his mri at 2 months, so there is still a chance that it could

shrink more.  The waiting is frustrating.  Feels like a ticking time bomb. 

Thanks for letting me vent.  Jackie

From: abijann <no_reply >

Subject: Jackie

To: livercirrhosissupport

Date: Thursday, June 4, 2009, 8:29 PM

Jackie...I remember all about your situation. There aren't many

people here, that are posting, that had to deal with tumors.

I sure wish that there would have been quite a change in size of

the tumor...that it would of decreased alot more. Is he having the same testing

done at the same facility as before?

It does seem strange that they are not moving faster in getting him

on the transplant list. I don't understand what they are waiting

for, either.

The evaluation process, to me, seemed to go on forever. It can

get frustrating, especially when you want your loved one placed

on the list. At times, I felt like I was being tested and

evaluated and like they were trying to find some sort of flaw

in me. I was just myself and they come to understand that my

husband meant the world and all to me and that I would do anything

in my power to see he got the best care...from me or them.

They will come to understand this with you also. To me, it

seemed like they were dragging their feet. I also, at times,

thought some of these people had no feeling at all...or else they

didn't show that they really cared.

It changed considerable after the transplant. We were with

an entirely different group of doctors then. The surgeon,

his transplant team, and all the nurses and even the people

who cleaned the rooms were so kind and caring...they became

like family to us.

I hope things work out well for you guys. Please keep us

informed on how he is doing. Are they trying the beads on

his other tumors, or just certain ones?

[Guest guest]

Thank you so much, Abijann, for your encouragement.  We are hoping that we will

be able to clear the way at another center to get him on the list.  He is 64 yrs

old, diabetic and otherwise in pretty good shape.  He had heart catherization in

May because they saw one small area where they thought there might be a blockage

in his heart.  He had 4 way bypass surgery in April, 2004.  That was a crazy

thing.  He went for a stress test and they wound up admitting him to the

hospital.  He had 95% blockage in 2 arteries, and 90% in two others.  He was a

heart attack waiting to happen..  Then in July 2007 he had esophageal bleed and

actually stopped breathing during endoscopic proceedure.  They shocked him back

and the dr. was able to band the bleeding varices.  Since then, he goes once a

year for endoscopy to see if there are any new varices growing.  That same dr.

in January of this year wanted to see an mri of his liver.  That's how the 3

tumors

were found. So this dr. saved his life twice.  We are hoping to catch this

before it spreads beyond the liver.  He has so much to live for.  He volunteers

in church, the masonic fraternity, fire company and just about anything else

they ask him to do.  Right now we are just trying to live a normal life.  Last

night he watched the Farrah Fawcett story.  I didn't want him to but he wouldn't

turn it off.  I was worried about him because he seemed a little down to begin

with yesterday, but this morning he's back to his old self.  Volunteering

for fire comapny traffic control at an annual antique car show till this

afternoon.  I am so glad your husband is doing well.  He is an inspiration to

us, and I'm sure all on this group.  Jackie 

From: abijann <no_reply >

Subject: Jackie

To: livercirrhosissupport

Date: Friday, June 26, 2009, 9:56 PM

I think you are very wise to get a second opinion at another

transplant center. Not all Transplant Centers are alike...

some do more research, some do the lastest developed procedures, and

some have better doctors who are willing to go the extra mile to

help their patients. You just never know, it may become a

blessing that you do this. Hope things work out for you.

While my husband was in the hospital, a doctor came into see my husband and told

him and me that my husband had to have another transplant. I was so upset. When

I went down to the cafeteria, a doctor who I never met before asked me how my

husband was doing...so I told him what was said to us. He could tell

I was upset. He said to me that everything was going

to be just fine...Here I found out that he was another Transplant Surgeon....it

was fine. They did a procedure on my husband to replace his biliary drains and

he didn't have to have another transplant.

What I found out, NEVER, EVER listen to what anyone other than the

very TOP DOG doctor in the place. If someone says something

to you, ask if it has been cleared through the Transplant Surgeon

or the doctor in charge of your husbands care. Others, there, who

don't really have any authority will get you upset very easily

by the things they say...you would not believe all we heard while

in the hospital itself. If they say the doctor knows, then tell

them you want to speak with him,directly, cause you have questions.

[Guest guest]

This has been an upsetful week for me.  I am not for sure how I can change my

transplsant hospital.  I was a person at first.......now I am money and a

number.  They want to eval me agaoi. IT IS TIME..

Lots of hugs and kisses to everyone.

Lyncia

 

 

From: abijann <no_reply@yahoogroup s.com>

Subject: Jackie

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Friday, June 26, 2009, 9:56 PM

I think you are very wise to get a second opinion at another

transplant center. Not all Transplant Centers are alike...

some do more research, some do the lastest developed procedures, and

some have better doctors who are willing to go the extra mile to

help their patients. You just never know, it may become a

blessing that you do this. Hope things work out for you.

While my husband was in the hospital, a doctor came into see my husband and told

him and me that my husband had to have another transplant. I was so upset. When

I went down to the cafeteria, a doctor who I never met before asked me how my

husband was doing...so I told him what was said to us. He could tell

I was upset. He said to me that everything was going

to be just fine...Here I found out that he was another Transplant Surgeon....it

was fine. They did a procedure on my husband to replace his biliary drains and

he didn't have to have another transplant.

What I found out, NEVER, EVER listen to what anyone other than the

very TOP DOG doctor in the place. If someone says something

to you, ask if it has been cleared through the Transplant Surgeon

or the doctor in charge of your husbands care. Others, there, who

don't really have any authority will get you upset very easily

by the things they say...you would not believe all we heard while

in the hospital itself. If they say the doctor knows, then tell

them you want to speak with him,directly, cause you have questions.

[Guest guest]

dear lyncia my husband was evaluated 2x too. sandra

________________________________

To: livercirrhosissupport

Sent: Saturday, June 27, 2009 10:44:39 AM

Subject: Re: Jackie

This has been an upsetful week for me.  I am not for sure how I can change my

transplsant hospital.  I was a person at first....... now I am money and a

number.  They want to eval me agaoi. IT IS TIME..

Lots of hugs and kisses to everyone.

Lyncia

 

 

From: abijann <no_reply@yahoogrou p s.com>

Subject: Jackie

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Friday, June 26, 2009, 9:56 PM

I think you are very wise to get a second opinion at another

transplant center. Not all Transplant Centers are alike...

some do more research, some do the lastest developed procedures, and

some have better doctors who are willing to go the extra mile to

help their patients. You just never know, it may become a

blessing that you do this. Hope things work out for you.

While my husband was in the hospital, a doctor came into see my husband and told

him and me that my husband had to have another transplant. I was so upset. When

I went down to the cafeteria, a doctor who I never met before asked me how my

husband was doing...so I told him what was said to us. He could tell

I was upset. He said to me that everything was going

to be just fine...Here I found out that he was another Transplant Surgeon....it

was fine. They did a procedure on my husband to replace his biliary drains and

he didn't have to have another transplant.

What I found out, NEVER, EVER listen to what anyone other than the

very TOP DOG doctor in the place. If someone says something

to you, ask if it has been cleared through the Transplant Surgeon

or the doctor in charge of your husbands care. Others, there, who

don't really have any authority will get you upset very easily

by the things they say...you would not believe all we heard while

in the hospital itself. If they say the doctor knows, then tell

them you want to speak with him,directly, cause you have questions.

[Guest guest]

Thanks for letting me know that.  I wasn't even placed on the transplant list

until November 2008.  I put another picture out there of my new grandbaby.  She

is now 2lbs and 6 oz and has all ivs out......still have feeding tube until she

figures out how to suck.

Lots of hugs and kisses to everyone.

Lyncia

 

 

From: abijann <no_reply@yahoogrou p s.com>

Subject: Jackie

To: livercirrhosissuppo rtyahoogroups (DOT) com

Date: Friday, June 26, 2009, 9:56 PM

I think you are very wise to get a second opinion at another

transplant center. Not all Transplant Centers are alike...

some do more research, some do the lastest developed procedures, and

some have better doctors who are willing to go the extra mile to

help their patients. You just never know, it may become a

blessing that you do this. Hope things work out for you.

While my husband was in the hospital, a doctor came into see my husband and told

him and me that my husband had to have another transplant. I was so upset. When

I went down to the cafeteria, a doctor who I never met before asked me how my

husband was doing...so I told him what was said to us. He could tell

I was upset. He said to me that everything was going

to be just fine...Here I found out that he was another Transplant Surgeon....it

was fine. They did a procedure on my husband to replace his biliary drains and

he didn't have to have another transplant.

What I found out, NEVER, EVER listen to what anyone other than the

very TOP DOG doctor in the place. If someone says something

to you, ask if it has been cleared through the Transplant Surgeon

or the doctor in charge of your husbands care. Others, there, who

don't really have any authority will get you upset very easily

by the things they say...you would not believe all we heard while

in the hospital itself. If they say the doctor knows, then tell

them you want to speak with him,directly, cause you have questions.

[Guest guest]

Thanks for your info.  My husband had heart cath. on 5/29 & the drs said

absolutely, his heart is strong enough to withstand liver transplant surgery. 

I'll keep you posted on how we do with the 2nd evaluation.  Thanks, Jackie

From: abijann <no_reply >

Subject: Jackie

To: livercirrhosissupport

Date: Saturday, June 27, 2009, 9:34 PM

I had a similar situation with my Dad. My Dad had had alot of

serious surgeries in his lifetime.

When he started to have heart problems, the doctor sent him home to die. Another

doctor operated and did by-pass surgery on him (it was when they first started

to do them).

After the surgery, the doctor warned him that he could never have

surgery again. He made it through another surgery and then died.

Have you ever discussed with his Heart doctor whether he would be

able to withstand the long hours of a transplant surgery?

It can be anywhere from 5 to 14 or more hours long.

This may be one of the things that the Transplant Team of doctors

are looking at.