Maria's hospital course

Thank you Carol and Connie,

No, blood vessels were not involved.  The surgeon said he got it all and there has been no mention of spread elsewhere, though it did encroach the diaphragm.  In fact, supposedly it did not really involve a large portion of the liver.  It was sort of lying on top of the liver and growing into the diaphragm.  Her lungs have been okay, brain CT okay.  She has a bundle branch block involving her heart, but I don't think that is a problem.  Her kidneys have been fine.  The doctor told my daughter that transplant was not an option because of the size of the tumor and that it would likely recur.  However, that said, I called the other transplant center here and a nurse told me that as long as the tumor was dealt with they would then consider transplant. 

I really think that Maria would rather face the uncertainty of a transplant than what is certain without one with the really crummy quality of life.

Georgia.

Update on Maria,

She was finally transferred back from rehab to University Hospital with an ammonia of over 90.  The doctor did not order the rehab place to check ammonia levels.  She was very confused, hallucinating and jerking her body. 

They have plans to send her to another rehab place.  Her ammonia level this morning was 19.  However, she is stll hallucinating and jerking.  One of the doctor's came in today and told my daughter they wanted to transfer her today.  My daughter said "oh no, she is not leaving today."  The doctor replied "fine, then expect a bill."  When she spoke to the surgeon who operated about this, he said she could stay another night. 

I called Texas Transplant Institute and spoke with the nurse there and she said that one of their patient's in these circumstances would not be released from the hospital.  I don't know what is going to happen, whether she will be transferred or where.  Does anyone know if the hallucinations and jerking are common even after ammonia level is down and whether this will subside?

Thanks.  Georgia. 

P.S.  I would never go to University Hospital based on this experience.  In our city, it is normally where every uninsured person goes but it also is where transplants are done through the University.  They seem to be totally unempathetic. 

Georgia, I think you are caught in the INSURANCE QUAGMIRE.

The business office seems to be making medical decisions again. One of the docs has to sign off on her discarge and the general "hospitalist" does what the business office tells him/her to do... The specialists generally push back a bit...so you need to: 1. let them take her to rehab, 2. get a specialist to insist she stay or at least NOT sign the discharge, 3. transfer her to another hospital and don't take her back to University, or 4. take her home.

With Mike, the transplant center is 125 miles away...2.5 hours on a good traffic day. Miami isn't a city to go to wandering around at rush hour. Well, their transplant program is in a huge public hospital. The trauma centers are all located in big metro areas, often public hospitals that treat everyone regardless of insurance...and so there is where the donor organs are!!!!

When Mike has a problem, if he isn't bleeding or isn't complaining of chest pain, I bundle him up and drive like a mad woman to Miami. He was in a community hospital a couple of times along the way and we got the bums rush each time. And I had to keep an eagle eye on them that they didn't kill him! One time they gave him fresh frozen plazma before a paracentesis, the lab was closing so they opened the drip wide up and he started those convulsions and boy did they start hopping that time! It really scared me away from going back there for anything but an ankle sprain. One time I took him in when he was dazed and confused. They put him in a cardiac unit for 2 days and decided his ammonia was high, got it down, and sent him home. But this was before I had any clue about hepatic encephalopathy!!! If I had known what we'd be dealing with, I would have taken different actions.

I am currently fighting an insurance snafu for Mike.

His Epstein Barr viral load is really high. The TP coordinator has written a script for Valcyte, an anti viral med. Medicaid is wandering about, not denying the claim so we can write an appeal, but just NOT DECIDING. For a week as of tomorrow. I told someone on teh phone today that their plan was for him to die and then they wouldn't hve to pay for expensive meds any more. Grrrrr.

I don't know how Connie does it...is the patient and the advocate!!! Without an advocate, Mike would be dead ten times over.

I hope this evening is better. Let us know.

Carol

Connie,

She is not on any pain medications at all now except Tramadol and no prednisone either.  Today, the social worker came and saw the family and after hearing the story said that they may want to contact the Methodist Specialty and Transplant Center (the ones I had already called) and see what they could do, possibly put her on the transplant list, etc.  She said she would call them and contact them afterwards.  Hope she follows through.  Believe it or not, the son said "they probably won't do a transplant because of the hep C."  I really think it is better to have a female in charge of your medical care.  Females seem to know more and what they do not know they will find out.  I kept telling them about my conversation with the Texas Transplant Center.  It is so frustrating.  Through all the years of her illness, I don't think her sons once tried to find out more about it.  I just think that is inexcusable.  

I have been taking care of my mom since 1999.  She has severe rheumatoid arthritis, DVT, some degree of COPD, high blood pressure, and is legally blind.  I have taken her to every single doctor's visit and been there at every hospital admission and I know everything the doctor is doing or planning to do and I ask many questions.  At this time her kidney function is very decreased.  I transcribe for a nephrologist and believe me I ask plenty of direct questions like "what are her numbers, etc."  I get a direct answer.  Last week he said he felt that her kidneys would be okay for the rest of her life.  She is 89.  Whereas, my sister does not know anything, not that I haven't wanted her to know.  She just does not have much of an interest. 

Alyson said that the doctor that was so horrible said "Well, her blood levels are okay so we need to transfer her to rehab."  Here she is twitching and hallucinating.  She told Alyson "here put this in your purse."  Only there was nothing in her hand.  One of her sons said he did not know if she could make it through transplant surgery.  Well, she wanted a transplant and without one I don't think she can possibly last very long.  I think she would rather have that chance than none at all.

They want to send her to rehab for physical therapy, but if you are hallucinating and that confused how can you participate in physical therapy.  But, I guess the rehab place is just basically a warehouse for people they don't want to bother with any longer.

Georgia.

 

Hi Connie,

Thank you for your very thoughtful reply.  It would be very hurtful to have a daughter not care to that extent.  But, what goes around comes around as they say.  My daughter has a very inquisitive mind, as I do.  She actually has even since the age of 14 when her gandpa (the only father figure she knew) was very sick with CHF and intensive care.  She has watched me work and has learned quite a few medical terms.  She is not afraid to question. 

I have Barrett's esophagus (a condition of the esophagus from many years of acid reflux) that requires frequent endoscopies to look for changes in the cells that could be precancerous or cancerous.  She has often gone with me to those and always has questions ready for the doctor such as:  Are there any changes from the last scope or is the Barrett's still there, etc.  My daughter actually has bipolar disorder but has certainly come a long way with that.  If she ever had the mind to continue learning, I think she would make a great patient advocate at some medical institution.  The internet is there not only to look up ridiculous stuff and get on Facebook but also very important information (although you have to be able to discern what may not be good information).  Sometimes doctors are not always ready for us and our eternal questions. 

By the way, Maria just called my daughter and said she could not find Christopher or his dad and that they must have gone back to work.  Totally off the wall.  They have been at the hospital or rehab every day.  My daughter decided to test her a little bit and asked her if Chris and his dad had been there to visit today and she said "no, I have not seen them."

Any ideas on this memory problem?

Oh, Connie, she had just before her surgery EKG, stress test, and all sorts of scans of her head and abdomen.  Hopefully, her mind can get cleared up and then maybe she could be evaluated for transplant.  That is my hope at least.  Before this odyssey began she really did say that she wanted a transplant. 

Thanks and sorry for writing so much.

Georgia.

Hi David,

Thanks for your reply.  I think with Maria, though, they sent her there way too soon.  Just two days before she went she was on a ventilator and had HE.  The doctor failed to give orders to them to check her ammonia regularly.  When they draw blood at the rehab place they have to then send it to the hospital and have to wait for results until the next day.  It may be just that particular rehab that seemed lacking.  I have no experience with any rehab place.  She was really too sick to go there so soon.  It just leaves a lot of questions in my mind about them.

By the way, David, I know that you had a transplant.  Did you have any HE episodes that left you confused even after your ammonia levels were brought down?  That is the most concerning thing at the moment about Maria.  I am impressed that you recovered enough from her cerebral hemorrhage enough to get a transplant. 

When my daughter mentioned possibly taking the antibiotic along with the Lactulose to the rehab nurse she had never heard of it.  That is one of the reasons we were dissatisfied.  I realize that nurses cannot know everything, but it seems that if a patient is going to come in with that sort of thing going on, they should at least have a little knowledge of what to expect and possibly contact the referring doctor about.  I was able to find out about the antibiotic on line.  I would hope that Maria is not their first liver patient. 

Thanks.

Georgia.

David,

You are so right.  The doctor blew it.  It was such a surprise as the doctor was also a transplant surgeon.  It seems to me, though, that the rehab receiving doctor would want to know details of the patient's condition prior to accepting that patient and can then say "We are not prepared to handle that level of care at our facility."  Just the fact that they could not analyze blood work at the facility tells me that it was not the right place like your facility was.  Liability is so great I am really surprised that they did accept her. 

Georgia.

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Post Edited By Moderator (hep93) : 9/24/2012 12:55:28 PM (GMT-6)