SmileySue, welcome to the forum! I am so sorry that your mom is in such bad shape. Where is the transplant center where there will be a possible transplant? Your mom should have no trouble getting Medicaid at this point. Someone else can apply for her and the initial application can be done online. Does your sister that is near her have Power of Attorney? If not, she needs to get it so that she can obtain medical records and get info from the docs, as well as make medical and legal decisions on her behalf, if your mom is unable to do so. You don't mention confusion or odd behavior, so it doesn't sound as though she has encephalopathy (caused by high ammonia levels.) Much of her pain can be attributed to the diverticulitis, particularly if she doesn't follow dietary restrictions.
The designation of Stage 4 cirrhosis means that it's end-stage...the worst. That is why a transplant is being suggested as the only possible treatment at this time. So that is where the focus should be.
There are others here who have gone through transplant or whose loved ones have been transplanted, so they can offer more info and support than I am able to.
Hang in here!
Hello Susan and welcome to HealingWell. I am glad you found us too. This disease is not only hard on the patients, but the family and caregivers get their share of the enormous stress that goes along with it.
Has she applied for Social Security yet? If not ..........she needs too. You are doing the right thing. Getting educated on it is the best thing that you can do. So you get an idea of what needs to be done and what may come down the pike.
Thoughts and prayers............
Connie and Pink Grandma,
Thank you so much for your suggestions and support. It means a lot. She will be going to the University of Kentucky. That's the closest hepatologist, and still a couple of hours from her home. She doesn't seem to have the encephalopathy yet, thank goodness. I've heard her say one thing that didn't quite make sense, but that's all so far.
I don't know much about the financial part of this, so I will make sure that she gets the power-of-attorney. She hasn't gotten Social Security or Medicaid, either. I heard that they won't do a transplant if you don't have insurance. Is there any truth to that?
Thank you so much. I appreciate everyone's kind words. And prayers would be appreciated, too.
Thanks for sharing. I will get started on the Social Security as soon as possible.
Right now, she is in the hospital with a possible blood clot in her lung, and very low blood pressure. Does anyone know if this is related to the liver? Still waiting on a call from my sis. It doesn't sound good.
I am so sorry to hear about your husband. Thank you so much for telling me that. I will find out about the biopsy.
Hanging in there,
Susan, I'm not sure if the possible blood clot and low BP are related to the liver; however, when the liver goes bad it can affect many other organs...usually the kidneys, brain, and esophagus. It can also affect the blood's clotting ability.
While in hindsight it would have been good if Helen's husband had had a biopsy so they would have known about the cancer, it is not always necessary. I had an ultrasound which detected my liver tumor, and later on I had a number of MRIs with gadolinium contrast, which show cancer in any part of the body. I am free of cancer now, but still get follow-up CT scans with contrast and MRIs with gadolinium. They did biopsy the left side of my liver at the time the right side was removed. That is when cirrhosis was discovered, as previous to that I was always told that there was no cirrhosis. Sometimes, a patient is not well enough medically to have a liver biopsy. There is a big risk that goes along with it, too. You can ask about it, but it usually is up to the hepatologist.
Prayers and hugs,
Thanks, Lucy and everyone. You guys are great! My mother does not have a blood clot; they don't know what is on/in her lung. But, today they are doing a heart cath. I hope she is strong enough for all of this. She sounds weak and very upset. She can barely talk to me on the phone. I'm sure she feels she's going to die, and I hope that it's not because she's going to die. Please keep her in your prayers. Thanks.
Susan, thank you for updating us. I'm sooo sorry that your mom is going through so much. I hope that she will get listed for a transplant and that that will occur soon. Sometimes the MELD score is overridden by the patient's dire condition.
My prayers are with your mom, you, and your family.