Re: Dr Aubrey & General.... Ken's Listing

[Guest guest]

I had to have a talk

with Ken’s Coordinator today. We agreed she has to call both of us, because I can’t rely on Ken getting everything right or even

remembering everything. (You’d

think with his ammonia levels they’d know this!)

Anyway, Ken has 2 aneurysms in his splenic

artery, so the transplant doctors will be doing a splenectomy at the time of

transplant. In the meantime, she

wants Ken to have these 3 vaccinations. (He had the Hep A & B a long time

ago).

1.

Meningococcal

(Menomune)

2.

Pneumococcal (She said they use the

“Prevner” brand)

3.

Haemophilus B Conjugate

Dr wanted to do a TIPS procedure on Ken, but he told us that - before

we found out about the aneurysms, so don’t know if that’s still the

plan. If it is, they won’t do

it until he gets listed.

Please make sure you have a Medical Power of Attorney in

place, (doesn’t matter if you’re the patient or caregiver) so you

don’t run into any problems with the health care providers.

Barb in Texas

[Guest guest]

I had to have a talk

with Ken’s Coordinator today. We agreed she has to call both of us, because I can’t rely on Ken getting everything right or even

remembering everything. (You’d

think with his ammonia levels they’d know this!)

Anyway, Ken has 2 aneurysms in his splenic

artery, so the transplant doctors will be doing a splenectomy at the time of

transplant. In the meantime, she

wants Ken to have these 3 vaccinations. (He had the Hep A & B a long time

ago).

1.

Meningococcal

(Menomune)

2.

Pneumococcal (She said they use the

“Prevner” brand)

3.

Haemophilus B Conjugate

Dr wanted to do a TIPS procedure on Ken, but he told us that - before

we found out about the aneurysms, so don’t know if that’s still the

plan. If it is, they won’t do

it until he gets listed.

Please make sure you have a Medical Power of Attorney in

place, (doesn’t matter if you’re the patient or caregiver) so you

don’t run into any problems with the health care providers.

Barb in Texas

[Guest guest]

I had to have a talk

with Ken’s Coordinator today. We agreed she has to call both of us, because I can’t rely on Ken getting everything right or even

remembering everything. (You’d

think with his ammonia levels they’d know this!)

Anyway, Ken has 2 aneurysms in his splenic

artery, so the transplant doctors will be doing a splenectomy at the time of

transplant. In the meantime, she

wants Ken to have these 3 vaccinations. (He had the Hep A & B a long time

ago).

1.

Meningococcal

(Menomune)

2.

Pneumococcal (She said they use the

“Prevner” brand)

3.

Haemophilus B Conjugate

Dr wanted to do a TIPS procedure on Ken, but he told us that - before

we found out about the aneurysms, so don’t know if that’s still the

plan. If it is, they won’t do

it until he gets listed.

Please make sure you have a Medical Power of Attorney in

place, (doesn’t matter if you’re the patient or caregiver) so you

don’t run into any problems with the health care providers.

Barb in Texas

[Guest guest]

Good luck

Barb. I know dealing with a child being ill is bad enough, but it being an

adult I am sure can bring its own set of complications with communication. I

can’t keep track of all the stuff I hear sometimes…J.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Good luck

Barb. I know dealing with a child being ill is bad enough, but it being an

adult I am sure can bring its own set of complications with communication. I

can’t keep track of all the stuff I hear sometimes…J.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Good luck

Barb. I know dealing with a child being ill is bad enough, but it being an

adult I am sure can bring its own set of complications with communication. I

can’t keep track of all the stuff I hear sometimes…J.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8 1/2) Indeterminate colitis, PSC, Osteopenia (1-4

lumbar vertebrae), Enthesopathy;

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Barb,

First, I'm sure you're all feeling overwhelmed right now. I know I did

each time I got listed - all the docs with all their opinions about

what's right and when/how. It gets crazy. You're moving in the right

direction, though. Keep hangin' onto that roller coaster!

This is my ignorance showing, but I didn't think that they did TIPS

procedures to people who were going to get transplants? I thought I'd

read that somewhere, but I could have it confused with something else.

Did they say why they were going to do the TIPS instead of just

waiting to give him a new liver? Just curious.

My prayers are with your whole family!

Deb in VA

updates see www.caringbridge.org/va/deniseb

[Guest guest]

Barb,

First, I'm sure you're all feeling overwhelmed right now. I know I did

each time I got listed - all the docs with all their opinions about

what's right and when/how. It gets crazy. You're moving in the right

direction, though. Keep hangin' onto that roller coaster!

This is my ignorance showing, but I didn't think that they did TIPS

procedures to people who were going to get transplants? I thought I'd

read that somewhere, but I could have it confused with something else.

Did they say why they were going to do the TIPS instead of just

waiting to give him a new liver? Just curious.

My prayers are with your whole family!

Deb in VA

updates see www.caringbridge.org/va/deniseb

[Guest guest]

Barb,

First, I'm sure you're all feeling overwhelmed right now. I know I did

each time I got listed - all the docs with all their opinions about

what's right and when/how. It gets crazy. You're moving in the right

direction, though. Keep hangin' onto that roller coaster!

This is my ignorance showing, but I didn't think that they did TIPS

procedures to people who were going to get transplants? I thought I'd

read that somewhere, but I could have it confused with something else.

Did they say why they were going to do the TIPS instead of just

waiting to give him a new liver? Just curious.

My prayers are with your whole family!

Deb in VA

updates see www.caringbridge.org/va/deniseb

[Guest guest]

's surgeons did not want him to have a TIPS when he was bleeding cause they said it would make doing the tx much harder. MartiDeb in VA wrote: Barb,First, I'm sure you're all feeling overwhelmed right now. I know I did each time I got listed - all the docs with all their opinions about what's right and when/how. It gets crazy. You're moving in the right direction, though. Keep hangin' onto that roller coaster!This is my ignorance showing, but I didn't think that they did TIPS procedures to people who were going to get transplants? I thought I'd read that somewhere, but I could have it confused with something else. Did they say why they were going to do the TIPS instead of just waiting to give him a new liver? Just curious.My prayers are with your

whole family!Deb in VAupdates see www.caringbridge.org/va/deniseb

[Guest guest]

's surgeons did not want him to have a TIPS when he was bleeding cause they said it would make doing the tx much harder. MartiDeb in VA wrote: Barb,First, I'm sure you're all feeling overwhelmed right now. I know I did each time I got listed - all the docs with all their opinions about what's right and when/how. It gets crazy. You're moving in the right direction, though. Keep hangin' onto that roller coaster!This is my ignorance showing, but I didn't think that they did TIPS procedures to people who were going to get transplants? I thought I'd read that somewhere, but I could have it confused with something else. Did they say why they were going to do the TIPS instead of just waiting to give him a new liver? Just curious.My prayers are with your

whole family!Deb in VAupdates see www.caringbridge.org/va/deniseb

[Guest guest]

's surgeons did not want him to have a TIPS when he was bleeding cause they said it would make doing the tx much harder. MartiDeb in VA wrote: Barb,First, I'm sure you're all feeling overwhelmed right now. I know I did each time I got listed - all the docs with all their opinions about what's right and when/how. It gets crazy. You're moving in the right direction, though. Keep hangin' onto that roller coaster!This is my ignorance showing, but I didn't think that they did TIPS procedures to people who were going to get transplants? I thought I'd read that somewhere, but I could have it confused with something else. Did they say why they were going to do the TIPS instead of just waiting to give him a new liver? Just curious.My prayers are with your

whole family!Deb in VAupdates see www.caringbridge.org/va/deniseb

[Guest guest]

> Please make sure you have a Medical Power of Attorney in place,

(doesn't matter if you're the patient or caregiver)...

Barb is SO Right-On to encourage all of us to have a Medical Power of

Attorney (also called Advance Health Care Directive or Durable Power

of Attorney for Health Care).

This is the form that tells everyone - your family and your physicians

- who you designate to speak for you if you are unable to speak for

yourself. In addition, it identifies if you want your life prolonged

by artificial medical intervention in certain circumstances. Many of

these forms also clearly identify your wishes for organ donation.

No one wants to think of these things, but in addition to chronic

illness, all of us are at risk for an accident or sudden illness. In

times of stress, unfortunately family strife often occurs. The Health

Care Directive or Power of Attorney becomes so important in helping

direct your medical care.

Lastly, please talk to all members of the family. Tell them what you

value and what you define as quality of life. Some family members may

not agree with you, but they need to understand what is important to

you, including your preferances during the dying process. The

conversation is not " fun " , but it can be incredibly beneficial when

someone is critically ill.

The Advance Directives are available on-line, as well as from your

doctor or hospital (the hospital admissions office should have them

and you copies). I can email you one if you'd like.

And now, have a great Saturday! Take care.

Joanne

(, Ca)