daughter's MIL qualifies for liver transplant

My daughter called me and said her mother-in-law received a call following her scans last week.  She was told that she qualifies for a liver transplant.  Best news!!!  My daughter said she may go either to Johns Hopkins or to the center here in south Texas.  I am not sure why she would go as far as Johns Hopkins because don't you need to there quickly?  However, her brother-in-law has money and perhaps he would pay her expenses to live there while awaiting transplant and for that period after.  Thank you everyone.  Hopefully that HCC will put her way on the top of the list. 

My sister works for Southwest Airlines and can get tickets for family members, though they are standby.  That might be helpful. 

Georgia.

 

Hi Connie,

I don't know that the scans were officially part of the pre-transplant process, but rather perhaps to see if it had spread and whether she could go forward.  But, could the transplant center use those scans or would they have to do all of them all over again? 

I did watch a video on-line from Hopkins that said HCC would automatically put one at top of list.  The good news is that I believe her heart and lungs are fine.  She has never smoked.  Hopefully, that will give her a better chance of recovery.  Hopkins has such a great reputation for so many things.  However, I also read that Methodist Specialty and Transplant Center in San Antonio was rated #1 for liver transplants, so I don't know.  Maybe her doctor suggested Hopkins for a reason, perhaps waiting list is shorter. 

I do think the family can make that happen as far as needing to move there for a while, etc.  I guess finding the money is the least of the problems. 

Georgia.

Thank you Connie.  You are really a blessing to all.  In spite of what you have been through, you continue to try and help others.  I have been able to pass on so much info to my son-in-law and hope it gives encouragement.  My daughter said that his mom sounds much better after receivint that news.

Georgia.

Thanks David.  Do you know anyone who has been to Hopkins, especially for transplant?

Thanks all. Just got some bad news. My daughter and her husband got another call from his mom. I do not know how this happened, but apparently they called her again and said the tumor was 9 cm and she will need chemotherapy first. Do you think they mean the procedure Connie had? I am devastated and so sad about this news.

Georgia.

Georgia, that's because transplant won't be done if a tumor is more than 5 cm. The chemoembolization will shrink the tumor. It may even take having it done twice. Meanwhile, she will be "inactive" as far as transplant. This happened with me the first time I had HCC. The tumor was 12 cm x 11.5 cm. The chemoembolization shrunk it, but not enough. Then they did TheraSphere. It killed the tumor, but my rt. lobe as well, so they took both the rt. lobe and tumor out. With this second HCC in the left lobe, they caught it early. When it reached 4.9 cm, I was going through evaluation for transplant and they did chemoembolization which shrunk it and bought me time until I could get my transplant.

Chemoembolization is targeted chemo to the tumor. It is not like regular chemo, which doesn't work for liver tumors. They will thread a catheter up through her groin (this will be done by an Interventional Radiologist) to the tumor itself and the chemicals released right into the tumor. Conscious sedation is given for this and there is no pain, just a feeling of pressure. As mentioned, this could possibly have to be done twice to get the tumor below 5 cm. The concern is that it not metastasize to another organ. However, they can't do it really close together. It takes time for the chemo to do its work. So she may have to wait 3 mos. after the first treatment to have it done again. The only side effects I had were some "twinges" which I was told was the tumor dying and no appetite for a week or so. She won't lose her hair or have the side effects of systemic chemo.

It's not the end of the world--just a bump in the road.

Hugs,
Connie

Hi everyone,

I am really concerned that my daughter's MIL is not getting the kind of care that she needs. My daughter just told me that she said something about chemotherpy in pill form. That is not what Connie had. She is going to an oncologist in a tiny town just outside San Antonio. She could go to the Methodist Specialty and Transplant Center. I read on line that they are doing the treatments that Connie had. It would be about an hour and a half drive for her, but her life is surely worth it. What do yall think?

Thanks. Georgia.

Thanks Carol. I understand what you are saying. I now have long-term care insurance, so that is a relief. My daughter won't have to worry about caring for me. I also have really good insurance and will have Medicare in a couple of years.

Georgia.

Hi Connie,

I wanted to let you know that I printed out all the postings on this topic for my daughter's mother-in-law and I spoke to her on the phone yesterday.  She said she would get on the forum today and I believe she may have a lot of questions for you.  Your information is so similar to hers.  There is no time to waste. 

Thank you.

Georgia.

Thanks Mama Lama for your reply.  She is able to do that.  She said she is trying to get Medicare approval and scans, etc. from doctor to go to either UT Health Science Center or MD Anderson in Houston.  She said her hepatologist will not be in on Monday. 

Georgia.

Hi Connie,

Yes it is Medicare.  She retired on disability because of the liver disease.  She was civil service, so I believe she has her health insurance through that as well as the Medicare.  I also believe she is 65 years old now.  She is well insured.  I believe she is planning to see the head of the transplant department at UT Health Science Center.

Georgia.

G, all good news about emerging care plan. Best, ML/C

Georgia, that's great news that the doctor thinks he/she can resection the tumor! As for the medical records fiasco, I found it less stressful to obtain my records myself, even if I had to pay $1 to $2 a page. Then I could make copies from those.

Please keep us updated.

Hugs,
Connie