Topic: Miraculous call from Dr. Kato for ex-vivo resection transplant

To all my cc friends and family,

I first of all need to apologize for not posting on here for a couple of months.  I hope that everyone had a nice Christmas and the New Year is full of blessings for each one of you!!

I recently got a call that I qualify for an ex-vivo procedure in New York. I just had my second CT scan on Friday January 25th.  Dr. Kato wants to look at my scan and then schedule a surgical consultation.  I am going to try to schedule my appointment for a Friday and then my surgery for the following week, to save on transportation since I live in Michigan and will need transportation and lodging.  If anyone has been  to New York and has any advice, it is greatly needed. We are going to contact Angel Flight for transportation to acnd from the Hospital. My husband is going to come with me but the expenses of hotels are high for the area and transportaion to and from hotel to hospital will be expensive...any advice would be greatly appreciated since we will be down to one income, and I have no sick,personal, or vacation time left, any advice is greatly appreciated.  Do you think I should apply for disability?

Thank  you and God Bless you all!!!

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla,  I am so excited for you.  Yes, I believe that you should apply for disability.  Enclosed you will find some previous postings which may be of help.

http://www.cholangiocarcinoma.org/punbb … hp?id=1129
http://www.ssa.gov/dibplan/dapply.htm
http://www.cholangiocarcinoma.org/punbb … hp?id=2288
http://www.cholangiocarcinoma.org/punbb … hp?id=8186
http://www.cholangiocarcinoma.org/punbb … hp?id=7019

Hoping for others to chime in also. 
Oh, Darla, fingers and everything possible is crossed on this end. 
Hugs,
Marion

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

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla...First of all I will be thinking of you and praying for a successful surgery...Dr. Kato seems to be the go to for this disease. Yes, most definitely apply for dissability...it can take time...if it is not going quick enough you can call and speak to someone...I did and a very nice women told me if I would fax my Cat scans, office notes and surgical reports it would speed up the process and it did! You may have to make some noise to get them moving...the squeaky wheel thing...as far as lodging for your family...I had my resection at Mt Sinai in NYC and I know they have a few rooms at a hotel not far from the hospital where they have deeply discounted rates...I believe they even have a few rooms in the hospital set up like small efficiency apartments....I would call NY Pres or go on their website...and see if they offer any of these things...I would think they do...another good thing NYC is not such a big tourist attraction right now so some hotels may have cheaper rates....Hope some of this helped...Best of luck to you for a successful surgery and speedy recovery!
Nancy

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

YIPPEE, Darla! Bestest news ever. Just want to reiterate what  Nancy said. A lot of Hospitals have some guest rooms or rooms nearby. May even have a shuttle, I would call the Hospital and inquire. Another hint is do your dining in the hospital. Sometimes the food is actually pretty good and will be much less than the NY restaurants. I am so excited for you and can't wait to hear the date! All pur prayers and good wishes go out to you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Hi Darla,

I am so happy for you! I think you are the third person this week that has posted that Dr. Kato is going to help them. I pray for a successful surgery and many happy years ahead. I know that our Kris travels to NYC quite a bit, so maybe she has some pointers for you. I also know our Tiffany uses a flight service to get to MDA. I'm not sure if it is Angel Flight or not. I did pick up a brochure about Angel Flight once when we were visiting U of M. It sounds like a wonderful organization. So, hopefully she can help. I wish you all the best and please keep us updated!!

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla,
Congratulations on your fantastic news!  As far as disability goes, apply for it online on the Social Security website.  You'll get approved and pretty quickly too. The payments start 6 months after diagnosis.  Not sure if you actually had to stop working at that point or not.  Also, how about LTD at work?  That too starts at 6 months.  God bless you and may He guide Dr. Kato's hands to heal you.
                            Dianne

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Dear Friends,

Thank you so much for all the great advice and websites!!! I am still awaiting the call for the date of the consultation.  Hopefully after they see my cat scan results from Friday Jan. 25 I will get the call.

I have been working since I do cover part of my family insurance and also pay for our heating bill through my work.  I found out today that we have ( via a letter from my Dr. to approve me) short term disabliity for 6 weeks which will pay up to 60% of my gross income.  It will at least keep paying for my insurance and for my heating bill while I am recovering.  They want me to sign the FMLA act and that will insure my job for at least 12 weeks. 

I have used up all of my sick/personal/ and vacation time for this year already from being sick from the chemo thus far.  I have wanted to keep working even though I have missed alot of time which has been covered by my PTO which like I said I have completely used.

I am a little nervous to sign the FMLA act till I leave for my consultation and surgery.  I am hoping to schedule my consultation and my surgery within the next week of, so that we can save some money on the trip to NY and instead of going twice - go only once for consultation and surgery.

Does anyone know of where we might be able to obtain some fianancial help to help us pay for our expenses and the trip.  Our church said that they may be able to do a fund raiser or take a love offering.  I am worried about being able to come up with the funds to make the trip.

Thank you and God Bless you for all your help and advice!!!

Love,
Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Hi Darla,

There is a website you should check out:

www.cancercardxchange.org

The lady that runs this is named Emily Thomas. You write to her and tell her your story and she will send you gift cards for gas, restaurants, or stores. Tell her what you are looking for in particular and she will help you. It is a wonderful program. I hope this helps.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla,
I used FMLA  immediately after my husband's diagnosis for about 4 weeks for Dr. appointments, chemo, crying etc.  then I had 8 weeks left for intermittent leave for the same as above.  I think your signature indicates only that you understand what your employers obligation is under federal law. They can let you go after 12 weeks but they don't have to.  It's nice they haven't counted your time off so far in the 12 weeks, but now you'll be off for an extended period (hopefully just 8weeks or so) and I guess they have to start counting it. They're just complying with the law I guess.  Don't stress about it.  You're one of the lucky ones!
                   Dianne

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Congrats Darla-How overwhelmed you must feel right now! I would contact our Tiffany, she seems very versed in aid for out of state treatments, I think she will have lots of good advice and sites to use! I also agree about applying for SSDI, it is so easy. You start on line and then they do a phone interview and that is all. When I applied it  was the first part of December and on December 28th I had my yes. My first check was in Febuary, because that woud been have 5 months from my diagnose date. I would think yours would start right away because you have been diagnosed longer than 5 months!! Get your app in before surgery so you can rest mentally and physically!!
Lots of prayers-Cathy

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla,
Congrats! This is wonderful news. I know Tiffany uses Angel Flights and Kris goes to NYC for her appointments, they are both lovely ladies and I am sure they can help. Keep us posted
Hugs,
Lisa

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

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

I'm so glad your getting a surgery!!
My best advice to you for help is to call the american cancer society!
They offer 1 free flight a year for a cancer patient and their caregiver. They can also help you find a hotel for cheap.
They will also give you the names of any local help that you might can get.
I hope this helps! Please feel free to send me a message if you need any more help!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla:
ACS is a wonderful resource.
I'm not sure where it's located on 32nd st, but there is a place called Hope Lodge that gives cheap lodging to cancer patients and caregivers. I never checked into it. You can find out about it from ACS. Also, Sloan Kettering allowed a "family member" to stay in the room with me.
I am sure you are overwhelmed, but I suggest you get the paperwork started to protect yourself. You can use it when needed. I worked with someone who used it even when he came back to work as he was unable to work full weeks... It protected him.
You can also get disability, which is usually granted on the first try for cancer patients. I used a lawyer and it ended up being free because I was approved before I was eligible. The only down side of that is you can't make more than $999/month. But it is an option if you do lose your job.
Ask NYP if they offer a bus/car transport. And they offer cheaper hotels, too. You should ask them about them.
Also, ACS offers travel help. You need forms and your dr needs to sign them but ACS will reimburse up to a few hundred $$.
Good luck with everything! I am thrilled for you that you are getting such a giant slice of hope!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

To all my cc friends and family,

I finally got the phone call from Dr. Kato, and  my surgery consultation and pre-operative testing will all be done on March 1st.  They have blocked off Monday  March 4th and Tuesday March 5th for the surgergy date.

When I got the phone call I was on the way to get my chemo in traverse City. I cried tears of joy because now it is completely real. I couldn't stop crying, I think I cried all the way from Manistee to Traverse City which
is an hour.  I just feel as if God has blessed us with a miracle.

More good news.... I also got good results on the cat scan. The largest tumor  which started out at 9 cm. has shrunken down to 5 cm. 

Thank you so much for all your wonderful words of encouragement and for the words of advice and web sites.  We are still trying to plan the trip and put things in place yet. ACS is trying to set us up with Flights of Mercy Medical.  We just have to figure out our lodging and transportation in the city.

Thank you so much again!!
God Bless you all!!!!

Love,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla...wonderful, wonderful news.  Shedding tears of joy right along with you.
Fingers and everything else is crossed on this end for an extraordinary result heading your way
Hugs,
Marion

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

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Dear Darla,

I am so happy to hear that a surgery date has been set and I am sure everything else will fall into place for you. Sending positive vibes, strength, love, and hugs your way.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla, this is FABULOUS news! So happy for you! I also would suggest checking out Livestrong foundation (btw they no longer have Lance in their organization). I heard a long interview with someone from the foundation on NPR last weekend .
Best wishes while you prepare for surgery!
Willow

Willow

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Hi Darla,

This is excellent news all round and I am seriously happy for you!! I will be keeping everything crossed for you and tons of positive thoughts are coming your way from me.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla,
Wonderful news that your surgery date is set. I am so happy for you.
Lisa

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

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Darla, HAPPY, HAPPY tears and a big YIPPEE! I am starting prayers for God to come through the Surgeon's hands! This is sooooo exciting! Sending you the very best in the world and now you too will have the added experience of all the prayers and well wishes from our CC members from all over the world. I tell you, you will just feel the LOVE, I just did! Can't miss with this group of cheer leaders.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Hi Darla,

My dad and I will also be meeting with Dr. Kato for a consultation on March 1st!  Our appointment is at 3 PM.  I have heard nothing but good things about Dr. Kato.  We are extremely eager to meet him.  Good luck to you!  Can't wait to hear how it goes.

Nikki

Daughter and biggest supporter of the strongest Dad on earth!
"Attitude is a little thing that makes a big difference."  ~Winston Churchill
"A happy person is not a person in a certain set of circumstances, but rather a person with a certain set of attitudes."  ~Hugh Downs

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Dear Nikki, a big YIPPEE for you as well. Gee, it almost makes me think we should do some kind of party at Dr. Kato's so everyone can meet!!! Wishing you all the very best!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Nikki-Darla sending lots of prayers for both on March 1. I can't help but believe our CC angels, Kim and Jim have something to do with this coincedence!!!
Lots of prayers for miracles and HOPE-Cathy

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Dear Nikki,Cathy,Lainy,Gavin,Willow,Pam,Marion,Kris,Tiffany,Lisa,Dianne, and Nancy, and all my CC friends and family,

Thank you so much  for the thoughts, advice,prayers and information you have all generously shared with me. The trip is coming together nicely. We have Angel Flight set up to fly us out on March 2nd. and we have one pilot lined up at this time.  My church and friends are going to have a benefit dinner for me next Friday night. My cousin gave enough points for 7 nights at a hotel.
We have been so blessed!!!!

Dr. Kato requested that I have a pet scan to make sure that the cancer hasn't spread anywhere and an MRI to make sure there are no tumors on the left side. Please pray for me on the 26th of February when I have these scans done.

I will be praying for you too Nikki on the 1st!!!! looking forward to hearing about your visit!!!!


Love,

Darla

Ready to fight the battle of my life!!!!!  With God as my guide!

Re: Miraculous call from Dr. Kato for ex-vivo resection transplant

Dear Darla, so many prayers floating your way you will certainly feel them surrounding you! You are so close now that I just know everything is going to be good news paving the way for you! My goodness, how could anyone miss with so many being in their corner of the ring. Just put on those pink, diamond studded boxing gloves and give it all you got, girl! We are all behind you, you are so NOT alone! We LOVE YOU!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.