I'm greatly remiss in posting to this status blog. Sorry.
Adding some detail why I came home rather than being transferred to Rex Rehab Apex. On Sunday, Monday, and Tuesday, under the watchful eyes of a PT, a WakeTech student nurse, and an OT, I walked the halls of Ward 2 East. I asked them not to touch me, no assistance usless I threatened to fall. The third walk, I covered the halls completely, around every corner, to the end of every cul de sac, stopped at the nurses' station to confer with my nurse about what the hang-up was on transferring me to Rex Rehab which, at the time, I thought was the plan. Well, this resulted in those three writing "too favorable" reports of my condition resulting in Aetna-Medicare not covering Rex Rehab and my being discharged to home and Aetna-Medicare covering home health care.
Thursday morning, MediHome Health Agency nurses, Susan Williams and LuAnn ?, visited me to intake me to their care. They planned initial visits of an OT, PT, and skilled nurse who would call me. The OT called Friday, left a message, I returned message, he didn't return again that day. Early Monday, March 23, OT called, arranged to come that morning. I called MediHome to request PT call return. PT called, would come that afternoon. Both visited, conducted a few tests of my gait and leg strength, walked through how I visit toilet and shower, and my access to garage to get into Trooper. At their conclusions, they asked me to sign their notebooks, shook my hand, said I was done with them, am beyond any help they could offer. Wednesday, skilled nurse LuAnn visited, asked a few questions about fluid intake and medicines, asked me to sign her notebook, shook my hand, said that concluded my access to MediHome. Voila! I'm turned loose to my own recovery plan.
I had already commenced my plan Wednesday morning. Jeanne and I visited LifeTime Fitness to participate in Aqua Flex, a low-impact cardio and balance session. I was extremely challenged, stumbling to maintain my balance on one leg raised movements, had to grab edge of pool in balance movements. This is definitely a good session for me to start recovery, will attend again Friday. I also water walked about 10 laps, forward from one side to the other, then backward to side one. My new water exercise shoes added considerable resistance to moving my feet through the water.
I was somewhat shocked to stand on the scale and find I lost 10 pounds during this illness. I knew I lost some but 10 was more than expected. Again, as with kidney failure four years ago, probably all muscle lost, leaving only fat behind. I fear recovery from this illness is going to take a long time.
Thursday, March 26, 2015
Tuesday, March 17, 2015
Ed's headed home
I have good news & bad news, and they are both the same news. Ed is sitting in the waiting room at the hospital, waiting to be released; to home, not to rehab.
Their insurance balked at paying for in care rehab and will be sending someone to work with him on physical therapy at their house instead.
He sounds stubborn and ornery; back to his old self? a sign of health? maybe.
Ed's "frugal" way of living will likely prevent him from remaining housebound. He's got things to do and places to be and is unwilling to remain housebound beholden to Jeanne as chauffeur. I've asked him to plan on not driving, but did not get an affirmative response to this request.
Ditto on the absence of alcohol.
His ongoing health depends on a "lifestyle change" which must persist past his recovery from this episode, but I didn't hear an affirmative response acknowledging this either.
Monday, March 16, 2015
Sunday 3/15
The hospital will not release Ed to "go home", but they will release him into a "rehabilitation center."
Jeanne shopped around and visited four or five of the rehabs in their "Triangle Region", and she finally found one that is acceptable. Ed's presently scheduled to be moved to the rehab, tomorrow, Mon 3/16, depending on bed availability. The rehab stay is supposed to be about a week or so, not much longer.
Jeanne said that Ed's been making small trips, to the bathroom, etc. without a walker, and that he seems to be regaining some of his physical strength. Cognitively he's still working on his recovery, speaking clearly, but slowly. He's had some issues over the past few years with a terrible rash and itching that is believed to be a side effect of one or more of the meds he's taking. This is bothering him now and seems to be his number 1 complaint.
Will update the blog as soon I have any additional info.
(Looks like the rehab will be Tuesday at the earliest)
Jeanne shopped around and visited four or five of the rehabs in their "Triangle Region", and she finally found one that is acceptable. Ed's presently scheduled to be moved to the rehab, tomorrow, Mon 3/16, depending on bed availability. The rehab stay is supposed to be about a week or so, not much longer.
Jeanne said that Ed's been making small trips, to the bathroom, etc. without a walker, and that he seems to be regaining some of his physical strength. Cognitively he's still working on his recovery, speaking clearly, but slowly. He's had some issues over the past few years with a terrible rash and itching that is believed to be a side effect of one or more of the meds he's taking. This is bothering him now and seems to be his number 1 complaint.
Will update the blog as soon I have any additional info.
(Looks like the rehab will be Tuesday at the earliest)
Friday, March 13, 2015
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
Wednesday, March 11, 2015
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.
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
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