Ed update - from Friederike, Fri 03/13

This morning Ed was already up when I came.

His voice is stronger and he looks better and moves around better.

I talked to the attending Doc and we were told that he is stable and that there is nothing going on that requires him to stay in the hospital. He needs to go to Rehab now to gain strength.

His liver blood values are ok (barely elevated). His sodium is back up, they are treating the “may be Pneumonia” with antibiotics iv and that can be continued orally. The heart needs to be dealt with with his regular cardiologist, his blood pressure was better (not as low as 2 days ago).  They will discontinue the Lactulose and he can take probiotics if he wants to help get the gut flora back in shape. He can eat a normal diet rich in “good” stuff. 3 - 4g of sodium (no extra – Sodium levels are not regulated by intake, but by the body and by fluid intake).

Jeanne is looking at rehabs, She has to make a decision today between 4 possible places. I expect that he will be going to rehab early next week.

I am very encouraged and hope this was a good wake-up call for Ed.

Friederike

Ed update - from Friederike, Wed 03/11

Friederike's latest email to me.


As Brian said, I found Ed to be in much better shape than the last 2 days. He can again carry out a conversation and yes he can fuss and swear again. His appetite is still not good, but he knows he should try. He got up from the bed and walked around it to his chair without using the walker (PT was there to safeguard). I was able to talk to a lot of caregivers today: Docs, PA, NP, PT, Dietitian….Believe it or not - there are 3 Dr. Shah’s involved in his care: R. D. and P Shah 

Synopsis: Room for optimism. No liver cirrhosis yet. He needs to get stronger with better nutrition and without alcohol. The weakness of his heart needs to be managed so that he will stay strong and active. We hope he does not develop pneumonia. For now they will watch, treat with antibiotics, give him PT, and good nutrition.

You only need to read further if you are interested in the details.

I may not have gotten everything right, but here is what I heard. His attending hospitalist (R. Shah) thinks: Ed has several issues going on and has been getting weaker and his system has gotten more and more out of balance and that probably caused this acute “collapse”. Alcohol, poor nutrition, not enough nutrition etc all weaken the body: The immune system then does not work as well, leading to easy infections like the toe problem, longer and recurring cold, low grade fever, etc. When you don’t feel well you eat less and move less and get weaker and that makes it worse. Weakness leads to lightheadedness and immobility and if you don’t use your muscles they will get even weaker. He needs to be better to his body and get stronger, otherwise he will always walk a close line and there will be likely more extreme ups and downs. The Doc thinks that Ed will have good days and bad days. Not likely that he can fix the issues in the short term, there needs to be a path to taking better care of his body.

The doctors biggest concern right now is that it looks like Ed is developing pneumonia after all and he will start him on new antibiotics. It seems Ed also developed an allergy to the Bactrin he was taking for his foot. Ed complains about hurting and having a hard time breathing and the x-ray shows that part of the left lung is not expanding. This all can explain some of the weakness and sleepiness. They put him on oxygen now to help him out. In addition, he has been running a low grade fever for a while. He will have to be working hard on his breathing exercises. They are also doing blood cultures to see if there is any systemic infection going on. Ed needs to be getting up as much as possible. Even sitting in the chair is better than lying in bed. Moving and breathing and getting air exchange in his lungs is important! They estimate that we will know in 3 days if the pneumonia is coming or was avoided. The next concern is that Ed also has heart problems leading to overall tiredness and weakness. We all know about his A-Fib. But an echo-cardiogram showed that he also has a weakened heart. Alcohol can damage blood cells, but the reason for his damage is unknown. This is not an acute problem and needs to be worked out with his cardiologist at Rex. He is not on the way to congestive heart failure yet. Ed is on blood thinners because of his A-fib, in order to prevent clots from forming that could cause a stroke. The concern is always that overall body weakness leads to more falls and falls can cause bleeding. Being weak and on blood thinners is not good, but with all meds there is a risk/benefit balance.

The belly scan showed fatty liver (Steatosis) but not yet cirrhosis. That is good news as his liver is still working and Ed has the chance to stop the progression by having a very healthy lifestyle and diet. It is reversible if the damaging cause is removed. It is likely that the cause for Ed is alcohol and not overeating. Alcohol stresses and damages the metabolism of the liver cells and leads to abnormal retention of lipids within a cell. If this progresses there will be inflammation and eventually permanent destruction of the cells. It will lead to cirrhosis with many more problems, but Ed can still prevent that. There is nothing they can do to treat that. One has to remove the offending factor. They are starting Lipitor (statin anti-cholesterol) and he needs to stop drinking alcohol and eat well (protein and energy).

The confusion was very likely caused by the low sodium levels. Alcohol can lead to low sodium levels. After a few days on the drip this may have gotten better (I don’t have any of those lab numbers). There is also a chance that the weakened liver is not processing toxins well enough and that could lead to an increase in blood ammonia. High ammonia is toxic to the brain and can lead to confusion. The blood levels were within range, but the doc still prescribed Lactulose (?) to clear toxins and bacteria from his gut (essentially a laxative). Since Ed’s condition improved so much they will continue with this. We will see. I hope they don’t overdo this.

Unfortunately, It's time to reopen this blog - updates to be posted here

 We're supposed to have more info from Ed's Dr. later today, but I figured we could get this blog restarted asap.

Ed was admitted to Wake Medical Hospital late Sat evening  (3/7/15).

Here's what has happened, to the best of my knowledge, in chronological order.
Two weeks ago, both Ed and Jeanne came down with "the flu", or rather each presented flu like systems.
They claim to have gotten better only to reinfect one another such that this condition persisted for a couple of weeks.

Last week Ed had fallen out of bed in the middle of night (Monday 3/2/15). I Skyped with Ed on Tues 3/3 to discuss Jeanne's birthday and he didn't finish his message. Later, when speaking with Jeanne on the phone, he fell again and she had to jump off the line.

Since he seemed to be relatively well and cognitive, they decided to wait and see their family Dr the following morning. Ed saw a NP who ordered bloodwork and sent him home. To the best of my ability to sort out this visit, Ed was told he was low on Sodium and Dehydrated.

Sat evening Ed said he wanted to go to the hospital, his cognitive functioning was declining fast.
Jeanne and Frederike took him to the hospital. As he was walking and talking, and presenting as generally OK, they had to explain the litany of Ed's past incidents in order to convince the ER of the urgency of his condition. Finally they admitted him, but it was late into Sun.

Monday the Drs arrived and began ordering tests

Ed is unable to communicate over the phone (he can't hold the phone or a train of thought).

I have not yet spoken with the Dr, so this is what I've heard from those who were there and have visited with him, Frederike and Jeanne.

Ed had a CAT scan, an MRI and an Ultrasound on various organs.

Ed has had a mini-stroke, At some time in the past, not recently, but they can see the brain damage.

Ed also has "damage to the heart", also from some time ago, but to what degree is unknown.

Ed has cirrhosis of the liver. The nurse showed Jeanne the results of his various tests and one of those tests stated that his liver function was around 35%. I believe this is the result of an ultrasound on his liver, not a biopsy.

Yesterday, his cognitive and motor functions dropped further and he can no longer get up and walk to the bathroom by himself. He's "out of it" and his cognitive functioning appears to be deteriorating, specific cause unknown.

The guesses include alcohol withdrawal, complications from the cirrhosis, complications from his past kidney failure, a combination of all of the above, along with possible interactions with the medications he is taking.

I've been added as the 2nd family member for the Dr to contact so I await his call with a long list of questions. As I have more info and hopefully some answers, I will post any/all updates here.

If there are others in the Cary area, who visit with Ed and or speak with his Dr and wish to post and add info, by all means please do so.

Please pass along this blog address so we can have a single, coordinated point of information. This served us well during his kidney failure and I would like to continue using this for what I hope is only another episode.

Brian