Topic: just need comfort and advice

My dad was diagnosed with cholangiocarcinoma on December 1, 2008.  Since then he has had multiple stents replaced.  He has undergone an oral chemo and radiation.  He just finished brachytherapy.  He is feeling a little better.  They say his tumor has shrunk some.  He has also been placed on the liver transplant list.  My mom is having a very hard time right now and feeling overwhelmed.  I guess I am just looking for anyone who has had the transplant and I am wondering how long they had to wait.  Also, any suggestions on how to help my mom (who is having a hard time accepting any help).  Thanks.

Re: just need comfort and advice

There are a couple on people on here who have had transplants. I am sure they will be around soon to give you some advice. If you use the search function, you might find them.

I am slightly drugged right now and am a little hazy....but I think Brenda's husband Scott had one and has a blog that details their experience.

You have come to the right place for support. Transplants have VERY good statistics right now. Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: just need comfort and advice

daleymom....I would like to welcome you to the board. How wonderful for you to be advocating for your Dad and allowing your Mom to relax a bit, if she can possible muster it.
As Kris had suggested you might want to use the "Search Function" on top of the bar.  Simply click on it...enter the words "liver transplant" and plenty of discussions will show up.  Also, Patty had posted this in re: to live donors. 

There was an article on live donor liver transplants in today's Pittsburgh Times-Review. It is about a patient with PSC whose doctors recommend a transplant from her son, to alleviate her symptoms but also to head off cc at the pass:

http://www.pittsburghlive.com/x/pittsburghtrib/news

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by ljg Mon, 09 Feb 2009 17:07:01)

Re: just need comfort and advice

Hello Daley Mom-

I wanted to offer you support, as a daughter who was once placed in a similar position.  I know that you want to help your Mom, and you already are in ways she may never be able to express. 

Keep in mind that since this is happening to you, as a daughter, that it is happening to her as a wife, and the perspectives are very different.  The best thing you can do for your Mom is tell her that you will be there for her, and mean it.  You will not know, at first, what the right things are to do, but you can defer to her, and challenge her thinking when necessary (if she is temporarily blinded by the difficult subject matter). 

Honestly, the most difficult part is getting your own head screwed on straight and taking the breaks that help it stay that way.  I know, because I have been there.  I am 39 and I come here to support others in similar situations.  You can do nothing "wrong", just showing up and showing that you care makes all the difference. 

I would also suggest reaching out to her physically, and getting yourself an inner circle of support.  You have to help yourself first before you can help those around you.  All my best to you and your family.  Remember, there are others in your position and you are not alone.  (((hugs))) -ljg

Re: just need comfort and advice

daleymom,

My heart goes out to you and your family.  I can understand your mom's feelings of being overwhelmed.

It's very hard for lots of people to ask for help. For some it's an indication that maybe "I'm no longer in control", and that can be a scary thing. 

Plus she's entered the equivilent of the "Twilight Zone" by taking on the Medical field.  There's a new language to learn, unfamiliar territory to visit and new and unusual people and relationships to figure out.  All of this while trying to maintain life as it used to be.  It's enough to make you want to go back to bed and pull the covers over your head!!!!!

You are doing all of the right things in being there and being supportive.  Encourage her and yourself to take time for you the individual.  Remember you have to take care of the caregivers first!

I also recommend the 5 minute rule when things really get hectic and frustrating ......Do 5 minutes, then do the next 5 minutes....*Grin*

All of us here are only a keystroke away!

Hugs to you and your family.  You are in my thoughts and prayers.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: just need comfort and advice

Daleymom,

I can only agree with & reinforce what Pam has said. I know how your Mom is feeling as I too felt that way. Everything Pam said is so true.  It all felt & still does feel so surreal. It does feel like you are in the Twilight Zone.  I was overwhelmed & trying to keep up with everything while also keeping our lives as close to normal as I could, which we all know is not possible when dealing with this terrible disease. There is no normal!  I too wanted to be in control & take care of everything myself, but that just isn't possible. I found it hard to admit I was not able to control all of this and to ask for help & support. I did need the help & support of my family & did accept that and am so greatful for all the support I got & still am getting from them. 

Just be there for your Dad & Mom when you can & know that they do appreciate it. You sound like a very caring, supportive daugther.

Also, as Pam stated, you do need to take care of yourself & try to get your Mom to do the same, as you both will need all the help & strength you can muster to help & support your Dad through this, terrible journey that none of us want to take.

I am hoping for the best for you & your family. I will keep all of you in my thoughts & prayers. Remember that you are not alone. We are all here for you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: just need comfort and advice

daleymom wrote:

I guess I am just looking for anyone who has had the transplant and I am wondering how long they had to wait.

I had one in August of 2007 after a wait of only two months.  As Kris noted, Scott Franson had one last May after waiting about a year.  He had his at the University of Utah, where I see you are from.  Scott's wife's blog recounting their experience is here: http://bbfranson.blogspot.com/

Re: just need comfort and advice

I too have had a liver transplant after CC. Please e-mail me or contact me at 519-351-4406. Mine was completed at the Mayo Clinic on March 20, 2008, and my daughter was the live donor.

I too had many stents inserted and replaced, so I know what your Dad is going through.

Please get in touch anytime from 10:00 am to 10pm ET

Raye

I'm a passenger on planet Earth and God is driving.