SIL in serious condition

T3,

Big decisions at your house.

MELD 23 is not good. The fact that you are no confident of her care is also not good. Pain is not good.

But hospitals are pretty negative about pain meds, they can make HE worse, they can make lots of things worse and first they are to do no harm. If your SIL has given up, well, there is hospice. They may be able to make her more comfortable. But she'd have to be really sure she had given up.

Mike was a total mess between sobriety and qualifying for TP. A MESS. Crazy man with HE and like the miz says, if I didn't love him, I'd have sent him packing...or packed off myself. It was awful some days. He had so many complaints. He had pancreatitis a couple of times with awful pain and they finally did give him morphine in the hospital for that, but it was a struggle. He got Hep C in the traditional way, experimentation with IV drugs, and they didn't want to encourage any of that behavior for sure.

We drove Mike 125 miles each way for all his appointments, tests, labs, etc. S ometimes a couple of times a week. And still do, 4 years later, but less often now. It was our best choice. The local guys here were not good and we had no confidence in the local hospital.

I'm sorry this is so hard....especially when you are willing to try VERY HARD to give her the best chance of getting her life back.

Best to you all,

Mama Lama

CT scan is scheduled for next week, so hope to hear something soon after she has it.

Today we start the process of getting ready to have these scopes done again but this time with general anesthesia,so that they can keep her blood pressure under control during sedation. My gut says she will end up in the hospital for the weekend with this as with these types of meds she will probably not recover as fast from the anesthesia, and her ammonia levels are slowly rising again and starting to show with her attitude. I have requested that during pre-op that they also check those levels as she is not allowed to take any of her meds today or in the morning.

I had a tough love talk with her yesterday about this pain medication issue that is she is demanding from these doctors. She is becoming out of control with this issue. I told her that hopefully with these scans they find the issue for the bleeding and can take care of the other issue she is having with her hiney issue, but that she needed to make her decisions on if she wanted to continue to pursue the options of a liver transplant, or was she giving up on that and no longer going to fight to live. I told her that the pain meds were only making things worse with her body, and that if she wanted even a chance of getting referred to the transplant list she was going to have to actively work on her sobriety and her cross addiction to the pain meds. That she has an addiction issue and that she is trying to replace the alcohol with the pain meds and while I understood she was in pain she needed to start being proactive with herself to change this part of her life. Needless to say this did not go over very well and she is not speaking to me very much right now. But I am sure this will pass also.. lol Especially since I am a mean ***ch, and I dont understand what she is going through. To this I responded that no I dont understand what she is going through mentally and physically but I do understand the dynamics of this disease and I do know how manipulative and cunning alcoholics were and that only she can change this thinking.

I think I have finally gained the balance that I need to help her deal with this stuff, while I here to take care of her and to get her to where she needs to be and advocate for her she is unable to, there is also a reality factor here for me that I can only do so much for her, and that when she is going to have to do some of this stuff for herself, I can guide her to where she needs to heading towards but she really has to do some of this herself.

She has to make some decision of what she wants to do with what she has left of her time here. She can either keep the fight going and do what she needs to do with me as her cheerleader and caregiver or she can give up and we work toward her comfort and quality of life of what is left. This was a very hard realization for me, as I do want her to fight, but again this is her choice to make.

Sharon

Anything on the scope Laurie had done, Sharon? Hope you are well at your end. Big Hugs

You might not be 100% on these ocs but.at least you are getting some.answers why she is so darn sick.. poor.sil. ML.

You did fine, Sharon. Links are crazy to get posted on here. I watch for them :)

I am curious about Laurie's dx and past history of cirrhosis. You might have the info, but maybe not. I know you have your own life and her boys, your husband and family....so it is not your only focus.

If you know, and can....what was her dx that caused cirrhosis?

I am just tossing things around here...bear with me.
Was Laurie ever dx with an auto-immune disease...which caused her cirrhosis? She is young enough to have school age children, which lead me to think the Hep C did not advance that fast.

Whatever Hepatologist she had in Columbus that was involved in her care should have done EGD's and have her history on GAVE's before a TIPS was done.

Anyone with TIPS has likely had more than one EGD. Themister had about 8 years, every 6 mos to a year, at least. And the same number of US's. One biopsy. A number of CT scans and MRI's. Why did they do TIPS? Bleeding or problematic ascities.

I thought it was alcoholic cirrhosis, but I just assumed that :) I figure that is not correct.

A person can have many conditions that "can" lead to cirrhosis, but it may be that her cirrhosis was not alcoholic or Hep C. Although that would contribute to underlying liver disease.

We had one lady here that transplanted with what they said was alcoholic cirrhosis. She was about 40. But her biopsy post transplant was auto-immune and hemochromatosis. I would want to look into Laurie's history for auto-immune, if I were her....and know for certain what dx I had for everything.

about the mass. Like I mentioned, mass on liver is common and not always cancer. Themister has 2 benign cysts on the liver for years,and a couple in the pancreas they are watching. His next MRI is in Jan. His last was July. Just how it rolls with cirrhosis :) Many people do get HCC as a result of cirrhosis, which jumps them up in line for transplant.

I have been offered pallative care at the regional hospitals, but frankly... I coordinate with the doctors, pharmacists and have for a long, long time now. It seemed like one more layer. Please let me know how you feel about what you receive with plallative. We fight for his life right now, not into giving up on him as long as he is breathing....But!! What "I" need is someone to haul out the Christmas decor and clean out the fridge, pay for someone to do what he did, what I do, and the money to finance this disease...lol. That ain't happening!! Big Hugs to you both, Sharon.

Again life has been so busy some days I dont know if I am coming or going.

We went to the surgeon on the 19th and the scheduled the hemorrhoid surgery for the 25th and added 2 more appointments to our already heavy schedule of running around. We were supposed to have the MRI on the following day, however I neglected to check her times and went by what she told me. Needless to say she told me wrong time and we had to reschedule until Dec.but actually gave me a breather day.

Laurie was close to running out of pain meds over the weekend and started her normal panic attack and stressing about not having them, and about drove me crazy. Thank god for an understanding hubby, who took over Saturday evening so that I could get away for the night and had a girls night out with friends and a much needed get away.

Monday we had her PAT appointment and we ended up in the ER room from that appointment. She broke out in a massive sweat during this appointment and had major issues with pain. They wouldn't let her go home with out being seen by a doctor. Needless to say she was admitted with issues of a small obstruction in the bowel, which was later determined to be constipation. Which I still don't understand if she is taking lacutulos and the xifran how this could happen.

Surgery happened finally about Tuesday afternoon and took almost 2 hours as she had 5 hemorrhoids plus a tear repaired. This should stop the bleeding as per the surgeon they were pretty bad. Ammonia levels had started to raise so they kept her overnight to monitor it, and to manage her pain. Pain was pretty intense as they anticipated so they she also stayed on Wed. So I did catch another break.

On Thursday as of the morning they were going to keep her till friday, but that rapidly changed and she was discharged about 1230. She did pretty good for the night even without her pain meds since it was the holiday and pharmacies were closed. I was not impressed with her nurse today as she would not answer my questions and basically was being lazy. Would not tell me what her ammonia or sodium levels were, and basically did the discharge without me present so I had no clue what was said and needless to say Laurie didnt remember either. We got home only to have the doctor to call me to tell me that the scripts that we were given were not good because they weren't signed. I was livid. My choice was to either drive back up there last night or wait for them to mail them to us, and we prob wouldnt get them till monday or so. I chose to go back up there so that I could talk to the dr to see what was actually supposed to be followed at home, and the why's. Nurse that discharged her has been written up for dereliction of duty and being incompetent.

We are now home with Ammonia levels at 57 and HE kicking in. Was a long night but we were able to stay out of ER and hopefully we continue to stay out of it.

Sounds like everyone had a good Thanksgiving and I hope that it continues for the weekend

Sharon

Pallative care is scheduled to be here Dec 8th at 4:30 for initial appointment. That is the soonest they are able to come out to the house. All the docs we have talked to agree that this is a good way to go not only for her for pain management but also for extra support of all involved in this complicated mess. Will update with them after we have the appointment

Sharon

Pallative care did come in on Monday and unfortunately we haven't been able to use those resources to much as she is currently back in the hospital and has been since about noon on Tuesday. We went for her MRI and on the way she started vomiting blood and passing blood from her hiney. We ended up in the ER room and then the OR room for an egd where they found she had 2 AVM's in her stomach that had to be taken care of. She is still currently in the hospital and we are hoping that she will be coming home tomorrow. The MRI still hasn't been done as they are still trying to determine what the type of material was used in her TIPS procedure in Aug.


She is running into Doctors that are very good but also very blunt with her and she is not handling this very well at the time. Pain Management told her that they would help her, but that she would have to jump their hoops and do what they needed for her to do.. he also reminded that is was her addiction that got her to this place in life, and whoa did that cause some drama. She has to do a phyc evaluation before they will continue care with them.

She also has met a new Dr in the Gi/Hepatology group and I call him Dr. Bulldog, he isn't intimidated by her tears, and oh that hurts don't do that comment on exams. She tried to move his hands when he was trying to exam her stomach in the ER and he told her to stop that he understood it hurt, but would only hurt for a moment and if she wanted the best care he could give her he needed to examine her stomach. Needless to say he succeeded in his exam.

I believe she is starting to realize the severity of her situation as she is now getting scared. Dr bulldog came into her room wed night and said to her that she was one sick lady, and that her issues were life threatening. Of course with her not tracking mentally very well she took it current situation and she was gonna die from it, took me about 3 hours and another doctor coming in to explain to her that he was talking about her general health and not the AVM's. She refused to sleep wed night because she thought if she went to sleep she wouldn't wake up.

I am not going to the hospital every day right now as I am fighting a severe sinus infection and dont need to be around all the sickness in the hospital running a fever myself, and with burning my candle at both ends taking some time for me to kick this stuff in the butt, instead of it kicking me in the butt.

Palliative care is an awesome program if they have it in your area, they are your helpers to get what is needed for your loved ones, they help facilitate appointments if you are having a hard time getting them, they are there to help explain things to not only the patient but the family members, they help get the living wills completed, dnr's and help them through making these decisions that hard for them to deal with.

Hope all is well with everyone else .. Hugs

Mama so sorry you are having a rough holiday time right now.. Know you and Mike are in my prayers,

Just got back from the hospital a little while ago and she is still there, they were finally able to do a CT scan on her last night and have confirmed that she does have cancer. They are 90 percent sure that is what it is, but are scheduling a biopsy before they will discharge her from the hospital. I have already been told by the Doctors that if this what was confirmed that her prognosis was not good at all and that was re-affirmed today also. So it looks like once the biopsy is done, and confirmed that Hospice will be called in.

We are not telling the boys till after the holidays and we don't want to ruin the holiday for them. This will be rough enough as time goes by for them.

I am hanging in, tired, actually exhausted at this point, but doing what I need to do for all. Taking it one step at a time right now and resting when I can.

Hugs
Sharon

Laurie was in the hospital until the 19th and after fighting with the doctors I was finally able to bring her home late that night.

She had a great christmas and built memories for the boys that were much needed. The doctors told her to take a few days to be able to digest her latest diagnosis and said they were going to send her to a transplant clinic for a consult. This took them almost 3 weeks to accomplish. Her pcp is the only one to refer her to a cancer clinic and that is with cleveland clinic, however the transplant consult is at ohio state medical. Cancer doctor appointment is the 20th and transplant consult is the 26th of this month.

She is angry now and taking her anger out on the medical staff of the different doctors and actually biting the hands that are trying to help her. She has alienated the hep/gi doctors nurse by being aggressive with her, has fired the palliative care nurse and refuses to let them come out here anymore. With the nurse she is leaving very nasty messages about pain meds and demanding that they help her with the pain. While I agree they need to help assist with this while she is waiting to get with pain management program she is getting very out of hand with the way she is treating them. Palliative care was fired because she felt that they should make her a priority patient and jump her demanding hoops. Can't say I am very happy with her with trashing out all the work I have done to help her at this point.

I think the word cancer has finally gotten her attention and she is scared, which is more than understandable. It is just a shame that it has taken this long to get her attention.

I am having a rough time trying to get her to understand that her best care is to keep it all in the same groups of hospitals right now, instead of having 4 different hospitals that will not be talking to each other trying to treat and all doing different things and in my opinion adding to the confusion of all this.

latest update on how things are going with sister in law
Last week we went to the oncologist that she was referred to from the Cleveland clinic, his response is there is nothing we can do systemic for your cancer and if you come back here then it is just for comfort. With a high recommendation to continue on to OSU with the surgeons to see what they could do for her at this time.

Finally made it to her eval for pain management so that part is on completed and she goes Monday to them for what ever treatment they are going to give her which leads to the next big issue we are battling and that is her being pain pill addicted. This has been a issue since she came to live with us in September, and I have addressed with many of the doctors she has been in contact. She however knows the system and knows what to do to get them to continue to give them to her. We are in for a long weekend as she is currently out of them and no one will write them for her at this time. I have witnessed her going into detox from them and she physiologically is dependent on them. She puts herself into panic attacks to cause most of the symptoms that warrant er visits.

Yesterday we had our long awaited appointment with OSU to be start the process of transplant and this did not go well. She basically started the appointment off complaining of her pain as usual and letting them know she was out of meds. Needless to say these doctors would not write her a script and in so much told her that while yes she has some very serious issues the liver issues were not the cause of her pain levels that she was complaining about and that she needed to be aware that pain pill addiction was a very big reason for her to be rejected from a possible transplant. He also addressed her addiction to them. Needless to say she was one mad lady leaving the hospital.. but they did start the process with the financial side of things, and ordered an mri,and blood work.

Not really sure about this MRI thing since we have been told by 2 other facilities that due to the tips she should not have MRI's done. But this doctor insisted that it could be done and they it all the time. So we are waiting for that appointment after all he is the specialist and the first step towards the transplant also.


Now come to today's issue of her being out of pain meds and her starting to demand to go to er room because of her pain. I decided to call her pcp and talk to him about how to deal with this issue as i do not have the medical degree and he does. Issue with saying no to her is the fact she does have some stomach swelling and her hernia is popped out and I know these can cause issues if not addressed. Biggest thing I am afraid of right now is her going through withdrawals and it becoming a medical emergency due to her being so addicted to them. Waiting for them to call me back to see how to handle this issue.

It is so sad to see her so addicted to these pain med and her denial of it and knowing that if she would just go with the what they are telling her to do she could be a candidate for transplant and live a very long life if she would just quit fighting them.

Hi Sharon,

I am very happy to hear Laurie is getting a transplant evaluation
My husband had TIPS and he has had many MRI's and is also on the transplant list. We asked about MRI's when he had his TIPS. No problem with MRI's. Did she call the IR (interventional radiologist) at Columbus to verify this ? They did TIPS and could answer that question for her. I would trust the transplant center liver dept. They are the experts on liver.


I don't know Laurie's health history with pain, but I thing her pain management doctor will work out what is appropriate for her. Good thing she has an appointment.

Sorry things are so hectic right now. You are doing a very good thing in helping Laurie get through transplant evaluation. She is very lucky to have your help. Big Hugs