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Liver Transplant in Kansas/Frustrated

slg
Posts: 200
Joined: Jan 2010

My husband has been on the liver transplant list since mid-December. After having his third TACE procedure last month he had a CT scan last week. They were treating an active stable tumor but ended up finding three more very small tumors in his CT scan.
Our CA Dr. needed to send a CD of the scan to Kansas Dr. for review and to compare the other scans. It has taken full week for the CD to be sent and now we are sitting here waiting to hear from anyone!!!! It has been the most frustrating emotional week. Not knowing has been horrible. We are afraid he may be outside of criteria now and be taken off the list. This was his only hope.
Does anyone have any suggestions as to how to communicate with the Doctors and not be a pest? I have emailed, called and left messages with the coordinators but can't seem to get anyone to call us back which only makes us think it's bad news!

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

I am and ICU nurse at a teaching hospital in massachusetts and my father also has HCC, I know what it is like to be on BOTH sides of the fence as a healthcare worker and as a frustrated scared family member. Let me just say this, communication is ALWAYS a problem in hospitals. YOU are the best advocate for your family and you are not a pest. There are so many patients they treat so its not on purpose they dont call you back, sometimes their caseload is just so heavy. You need to just keep calling, have them page the doctor and leave them your phone number call every hour until you reach someone or someone calls you back if you have too! These people leave their job everyday and go home, not thinking twice about any patient at work. YOU on the other hand dont get to leave and are living with this 24/7. Please calllll as much as do as much as you need to to get the answers you deserve it is your right as a patient! Good luck with everything.

slg
Posts: 200
Joined: Jan 2010

Thanks, Sarah, I appreciate the advice. I pretty much was on the phone all morning on Friday calling everyone I could think of. Finally, yesterday evening we heard from my husband's hepatologist who spent quite a bit of time explaining everyhting to us regarding his conversation with the Dr. in Kansas. He started off with a bunch of excuses as to why he didn't return our calls which I really didn't care about hearing. He is very much our advocate in pushing for my husband to still get his transplant.
I also received a reply email from the Hepatologist in Kansas after speaking with the first Dr. He is very much advocating for the transplant as well and will do everything he can to make sure my husband can stay within the criteria for transplant. He is meeting witht the multidisiplinary board tomorrow and promised to call afterwards. Soo, we'll see if he is good on his word.
We are hoping that if anything these new tumors will move him up the list and we can hop on a plane and get out there soon.
By the way, how is your Dad doing?

mhrosado
Posts: 37
Joined: Jan 2011

Hi slg.
I just saw your post saying that you are in the SF Bay Area. I've been spending so much time reading posts and blogs wanting to find survivors and looking for patterns to what they did or treatments that they recieved that worked. I am so happy to hear that your husband is on the transplant list. I know that you've worked hard to get him there.
You must keep going strong. Keep calling. you are not being a pest and if the coordinator or nurses think that you are a pest that is their problem. What you are asking for is important and you need them to help you. tons of good thoughts and prayers are going your way for you and your husband. please keep us posted. I will e-mail you.
take care

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