A Roller-Coaster Day

The first thing this morning, Angela was being combative to the point of needing restraints.  Her doctor saw that and ordered a psych consult.  She had no interest in breakfast or morning medications.  But by lunch, she was ready to eat some fruit and a protein shake, and by dinnertime she was her old self, mentally, eating a good meal and taking her Lactulose, the only way - to my understanding - that the extra ammonia can be cleared from her system.  She got a shower this evening, even though her mental state had reverted a bit, and with a lot of coaxing took another Lactulose dose.  She was sleeping when I left.  If she will let them, they will draw blood around 4:00 tomorrow morning to check how the ammonia is doing.  It is great that her caregivers are there with her, too.  Overall, I would say that today was a small step in the right direction.  I thank God and pray that this trend will continue, if it is His plan for her.

Two Good Years

I note that the last entry here was over two years ago.  Angela has been quite healthy during this time.  Her liver has not returned to normal and, in fact, she has been jaundiced to one degree or another and has continued to have elevated liver enzymes during this time, but she has been able to do the things that make life good for her.

In the last few months, she has started retaining more fluid and, as always, has been very resistant to increasing her diuretics.  But she was well enough to visit us about a month ago for our family reunion and celebration of Mom & Dad's 60th anniversary.  She thoroughly enjoyed seeing everyone and we all enjoyed her.  She did appear more frail than before, but was able to walk a little and play croquet.

Last week, she went to the ER for hip pain, but they looked at how much edema she had and focused mainly on that.  She was admitted and some tests were done.  Friday morning she told the doctor that she wanted to go home instead of to a nursing home as had been recommended, so she was released home.  By that evening, she was becoming irrational, with very strange behavior, some of it outside, obvious to neighbors.  Her caregivers took the necessary steps to have her readmitted to the hospital, and she has not been herself since then.  Her brain is being attacked by her deteriorating liver, primarily by the increasing ammonia concentration in her blood which prevents her from thinking rationally.  She was also given an anti-anxiety drug, Ativan, which gives her a bad reaction.   Then, yesterday, she stopped responding at all and looked like she was trying to bite her tongue off.  Some of the nursing staff thought she might be having a seizure, but it turned out to be a high CO2 concentration in her blood.  She has had this before, and it usually clears up with the use of a BiPAP machine, and she was immediately placed on that. By this morning, she was talking a lot.  Unfortunately, if you listened to more than four or five words, you would realize that they made no sense.  She spent her day between this state and sleeping.

This afternoon, we were finally able to see her primary-care doctor instead of the on-call physician.  She said that Angela's liver has really gone downhill and her heart has enlarged even more.  She said that Angela may recover from this episode, but does not have a good long-term prognosis and as her liver fails, her mental status probably will very from good to bad.

I see two possible scenarios:
1)  Her liver is failing.  There is really nothing that can prevent this; slowing it down is the best we can hope for, or
2)  Her BiPAP mask has not been fitting and worn properly, causing her to have less oxygen in her blood than she should have.  This causes stress on her heart, which then enlarges, and on her liver.

If it is #1, there isn't much that can be done.  If it is #2, we can make sure her equipment is working properly and hope that this will lessen the strain on her heart and liver, allowing some degree of healing.  In either case, she is taking at the hospital, and will continue when she is released, a medicine, Lactulose, which removes the ammonia from her blood and gets it into the digestive tract for elimination.

I don't plan to update this blog daily but will post whenever there is any major change.  Mike flies home Wednesday, but I plan to stay as long as necessary.  Again, thank you each for your prayers.

Little things

Now that we've dealt with major things for Angela, the minor ones come up. She became very constipated, with a lot of pain, Tuesday. Her doctor couldn't see her, and we ended up in the ER that evening. After laxatives and pain pills there, we went home and the next day she drank the stuff that's used to prep a person for a colonoscopy. It did produce results, but she has continued to have pain and isn't sure she got all the way cleaned out. The pain has been preventing her from using the percussion vest and from deep coughing, so her lungs are getting congested again. It is starting to get somewhat better, and she's been able to use the vest today.

She saw her doctor today and was told that she is stable for the moment, but any little thing could upset her balance again. We still haven't heard any results from last weekend's tests.

Mike's grandmother passed away this week at 99 years old. Her services are Wednesday, so Mike is flying down here Tuesday, and we plan to drive home together afterwards.

We continue to praise God for the health she has and to pray that she can continue in it and improve it over time.

To San Francisco and Home

Friday morning we left Angela's house at 3:30 for California Pacific Medical Center in SF for her right heart cath and liver biopsy. According to the cardiologist, she does meet criteria for right heart failure and for pulmonary hypertension, but both are mild. He will give his report to her hepatologist who will figure out what this means to her liver, as well as analyzing her biopsy. So, we really did not get any answers yet.

The doctor who did her liver biopsy nicked the liver capsule - I think that means he went a little bit deeper than he had intended - and that increased her risk of post-procedure bleeding, so they kept her overnight for observation. They were able to put her in a private room so I could stay on a cot with her. That was a blessing in many ways.

We got another blessing in the form of a Respiratory Therapist who was able to figure out how to make Angela's mask straps work for her. She's slept with the mask for two nights, now, without any complaining!!

Our trip home was more eventful than we wished. I got a little lost trying to get to the Bay Bridge and went around in circles a couple of times, on the third go around figuring out that I needed to turn right instead of left. There was a lot of traffic getting on the bridge - which I guess isn't unusual. While we were fighting SF traffic, Angela started to get very sleepy, and the oximeter reading was in the 50-60's. I kept trying to get her to breathe deeply, cough, and keep her mouth closed while crossing the bridge, with only occasional success, so when we saw the Hospital sign somewhere around Berkeley, we turned in to the Doctors Medical Center ER. They were very good to us and tried to figure out what had happened, but by then Angela was back to herself and her sats were good. After some more labs and a CT scan to rule out bleeding from the biopsy site, and after about seven hours, they said her sleepiness was probably caused by ammonia build-up, since her level was high, and gave her something for that. They said she would be OK to go home. So I fastened her in her seat, put a pillow under her head, and drove with her sleeping and me not knowing her saturation rate. We got home around 2:30. She was almost too asleep to get into the house, but we managed.

Today, she has felt well. She went grocery shopping but otherwise took it rather easy. I'm going to call her hepatologist tomorrow and see if he'll discuss her results with me on the phone. She has an appointment with him on June 8, but I don't want to stay here that long.

We thank God for keeping us safe in spite of the unexpected duration of our trip.

Home, at Last

Angela had her sleep study last night. We ended up finding out that the mask she has been using has not been working - it has little nasal "pillows" that sit right at the edge of her nostrils instead of the full-face mask. The reason she has liked it is that it doesn't have a strap that goes behind her neck - those always seem to hurt. Unfortunately, it also allows her to have her mouth open so the air forced into her nose comes right out her mouth -- not good. She did get to sleep with a full-face mask at the sleep center, and they were able to figure out what were good settings for her. Tonight, it was very difficult to get her to use the full-face mask - it really hurts the back of her neck. I'm trying to make adjustments in the straps so that they hold the mask tight enough but not too tight and don't touch the sensitive area on her neck. It's not easy, but she is finally asleep with the mask on.

I'm becoming convinced that the majority of her problems recently may be traced to the lack of oxygen she was experiencing every time she went into REM sleep - that we weren't aware of. My guess is that this has not been doing her liver any good, either.

God continues to bless us with just what we need for the moment, and we are thankful.

Planning to go home

Looks like Angela will be leaving NorCal Rehab tomorrow evening for the sleep lab, where she'll have a sleep study and come home Wednesday morning. Her lungs seem to have recovered back to her normal. She had liver tests today and they were somewhat better - still not even back to what they were before this pneumonia bout, but I'll take better any day. We're still praying that God will heal her liver and planning to go to San Francisco Friday for more tests.

A long hike

Yesterday, Angela was told that Dr. Fredericks, her San Francisco hepatologist still wants to repeat the right heart catheterization along with the liver biopsy. She had assumed that since her pulmonologist here recently repeated the right heart cath that it wouldn't need to be repeated in SF. She got quite upset and said she won't let them do it because there's no reason. I tend to agree with her, but I'm also more compliant and since they are planning to do both procedures from one stick, I don't see how it will really hurt her more. Dr. Fredericks apparently doesn't trust the results done here - he's sure her liver troubles are caused by congestion from heart/lung failure, but the study doesn't show that. Anyway, I pray that either Angela goes along with the program or we see some other way.

This morning we went on a hike. There is a trail we had seen from the little park outside the rehab hospital that Angela wanted to check out. She walked to where it started with me pushing the wheelchair so she could sit if she got tired and to carry the oxygen. It turned out to be paved and wide enough for the wheelchair, so she decided to start up it and didn't stop until the end, even though it was quite a bit of up and down. I bumped her oxygen up to 3 L/min and she stopped a couple of times for rest. It was a very good workout, and she's had a little nap after lunch.

One of her doctors told us he's working on the sleep study, so I'm hopeful that something will be worked out.