I wish I understood what's going on. Yesterday John was up 3 pounds and today down 3 pounds. I don't understand. He had a rough day today. His back hurt, his hip hurt and his stomach hurt. He had reflux all day, too. Hardly ate anything. When I left this evening he wasn't really interested in watching the Penguins. I hope he has a restful night.
We started packing John's stuff from his apartment at assisted living. We'll put everything in storage with the hope he'll go back there if he gets strong enough. He doesn't know this. We didn't have a choice because he can't afford both places. Hate this.
Saturday, May 30, 2009
Friday, May 29, 2009
So frustrated
I wish I knew what we should do. John has actually gained weight and girth. How is that possible with the high doses of diuretics? The hepatologist finds that hard to believe. I know the way he's weighed at the nursing home lends itself to deviation. It's not a scale you can sit on which for him would be more accurate. I just wish he could be tapped. He has a hard time getting comfortable. After dinner especially.
The doctor wants him to stay on the diuretics. Monday he'll be weighed and have lab work. Pray that he loses this abdominal fluid. If he doesn't, I want UPMC to tap him since they've done it before. I just don't know how to do that since he has a new doctor at a different facility. This is so hard.
The doctor wants him to stay on the diuretics. Monday he'll be weighed and have lab work. Pray that he loses this abdominal fluid. If he doesn't, I want UPMC to tap him since they've done it before. I just don't know how to do that since he has a new doctor at a different facility. This is so hard.
Thursday, May 28, 2009
A tiny improvement?
I completely forgot to post here yesterday.
There are indications that John is losing some of the fluid. The sodium level has changed but I can't remember if it's increased or decreased, but his nurse told me it's moving in the right direction. She also said his stomach is not as taut and the skin isn't shiny like it has been. He has actually gained a few pounds, but that doesn't mean he isn't losing fluid. She was waiting for a call back from the hepatologist, but I haven't heard anything yet as to next steps. Maybe he'll just remain on the diuretics a bit longer.
He was dressed and in a chair at lunchtime, but is still very tired. The speech pathologist saw him and is upgrading his diet so that is good news. I believe he was going to physical therapy after lunch. I'm sure he can't do much, but a little is better than nothing.
He really enjoys the extra visitors he's been seeing, our cousins Tom, Darryl and Cathy, to name a few. It perks him up a bit.
I called UPMC yesterday inquiring about official notification of their denial. They said a letter was mailed to the assisted living home on the 19th. I had checked his mail last week and it hadn't arrived yet, but last night I checked his mail and it was there. They listed "co-morbidities" and deconditioning as the reasons. The co-morbidities I assume refer to his closed head injury and hip problem. The deconditioning I understand, but the other 2 I don't. The letter also alluded to the possibility of reconsideration if his condition improves, but I'm not optimistic UPMC will change their mind. We have to present John to AGH in a different light. His records from Phoenix should help and so should engaging in more conversation with AGH than we did with UPMC.
As always, your prayers and encouragement are greatly appreciated. Also keep Lili Rose (Jeff's wife) in your prayers. She is having a laporoscopic procedure to look at and/or remove some uterine fibroids tomorrow morning. xo
There are indications that John is losing some of the fluid. The sodium level has changed but I can't remember if it's increased or decreased, but his nurse told me it's moving in the right direction. She also said his stomach is not as taut and the skin isn't shiny like it has been. He has actually gained a few pounds, but that doesn't mean he isn't losing fluid. She was waiting for a call back from the hepatologist, but I haven't heard anything yet as to next steps. Maybe he'll just remain on the diuretics a bit longer.
He was dressed and in a chair at lunchtime, but is still very tired. The speech pathologist saw him and is upgrading his diet so that is good news. I believe he was going to physical therapy after lunch. I'm sure he can't do much, but a little is better than nothing.
He really enjoys the extra visitors he's been seeing, our cousins Tom, Darryl and Cathy, to name a few. It perks him up a bit.
I called UPMC yesterday inquiring about official notification of their denial. They said a letter was mailed to the assisted living home on the 19th. I had checked his mail last week and it hadn't arrived yet, but last night I checked his mail and it was there. They listed "co-morbidities" and deconditioning as the reasons. The co-morbidities I assume refer to his closed head injury and hip problem. The deconditioning I understand, but the other 2 I don't. The letter also alluded to the possibility of reconsideration if his condition improves, but I'm not optimistic UPMC will change their mind. We have to present John to AGH in a different light. His records from Phoenix should help and so should engaging in more conversation with AGH than we did with UPMC.
As always, your prayers and encouragement are greatly appreciated. Also keep Lili Rose (Jeff's wife) in your prayers. She is having a laporoscopic procedure to look at and/or remove some uterine fibroids tomorrow morning. xo
Tuesday, May 26, 2009
My head is spinning
Today Anita, Van, Jeff and I met with John's PCP. We had a long discussion about UPMC, AGH and what to do going forward. I'm confused. One thing was cleared up...he thinks UPMC rejected him because of his head injury. Makes no sense. He has been functioning for 20 years and doing just fine until the cirrhosis kicked in. His PCP said John's kidney, heart and lungs are fine. What gives?
The other thing we discussed was the issue of the abdominal fluid. No easy answer here. AGH says no radiologist will attempt a paracentesis with platelets below 70K. His platelets haven't been above 70K in years and he's been tapped several times. The hepatologist at AGH wants to control the fluid with diuretics which can cause its own set of problems. Today he increased his Lasix to 80mg and Aldactone to 300 mg. I was visiting John this evening and he was peeing like a racehorse (pardon the expression). MAYBE this will work. I told him he was going to feel miserable for a couple of days until this fluid lessens. He needs A LOT of encouragement right now.
The other thing we discussed was the issue of the abdominal fluid. No easy answer here. AGH says no radiologist will attempt a paracentesis with platelets below 70K. His platelets haven't been above 70K in years and he's been tapped several times. The hepatologist at AGH wants to control the fluid with diuretics which can cause its own set of problems. Today he increased his Lasix to 80mg and Aldactone to 300 mg. I was visiting John this evening and he was peeing like a racehorse (pardon the expression). MAYBE this will work. I told him he was going to feel miserable for a couple of days until this fluid lessens. He needs A LOT of encouragement right now.
Monday, May 25, 2009
Not much has changed...
...unfortunately. John is still miserable, tired and I think depressed. It looks like he may have lost a couple of inches in his belly, but measuring is not the most accurate method. They'll begin weighing him tomorrow.
Saturday, May 23, 2009
Another long and frustrating day
John is back at Golden Hill. I'm too tired to get into too much detail here, so I'll make it short and write more tomorrow.
After platelets this morning, his platelet count was still too low. His INR was good, but the low platelet level made it too dangerous to do the parancentesis. He was not happy and neither was I. I asked the doctor on the floor to page John's (new) liver specialist. He talked to me for about 15 minutes, explaining things and answering my questions. The plan right now is to aggressively drain the fluid via diuretics. He increased the dosages of the 2 he takes, Aldactone and Lasix. On Tuesday or Wednesday he'll be weighed. If he's lost weight, great, but if not, the doctor will increase the doses and will continue to until he's maxed out. I am praying he drains before it gets to that point. If it doesn't work, there may be an option or two, but clearly the number of options available is diminishing.
After platelets this morning, his platelet count was still too low. His INR was good, but the low platelet level made it too dangerous to do the parancentesis. He was not happy and neither was I. I asked the doctor on the floor to page John's (new) liver specialist. He talked to me for about 15 minutes, explaining things and answering my questions. The plan right now is to aggressively drain the fluid via diuretics. He increased the dosages of the 2 he takes, Aldactone and Lasix. On Tuesday or Wednesday he'll be weighed. If he's lost weight, great, but if not, the doctor will increase the doses and will continue to until he's maxed out. I am praying he drains before it gets to that point. If it doesn't work, there may be an option or two, but clearly the number of options available is diminishing.
Friday, May 22, 2009
Another long day
John was at AGH by 7:00 a.m. Van and I got there at 10:30. They started giving him plasma after we got there (why not earlier, I don't know). It was mid-afternoon and they were about to begin platelets, but a GI doctor came in to see him and decided it was going to be too late to tap him today. So he was admitted and at 5:00 a.m. tomorrow morning they'll give him platelets, check his blood work and I'm praying it will be good enough to do the paracentesis.
We thought it would be a great idea for him to have a milkshake since he's moved up the food chain. He enjoyed drinking it, but about an hour later he was extremely sick. It took an IV injection of Zofran to settle his stomach. And puking helped, too. Zofran is a great drug for nausea. We felt terrible he got so sick. No more milkshakes for awhile. Around 6:00 p.m. he was moved from the short stay unit to a regular room. He was finally comfortable by the time we left at 7:00.
We thought it would be a great idea for him to have a milkshake since he's moved up the food chain. He enjoyed drinking it, but about an hour later he was extremely sick. It took an IV injection of Zofran to settle his stomach. And puking helped, too. Zofran is a great drug for nausea. We felt terrible he got so sick. No more milkshakes for awhile. Around 6:00 p.m. he was moved from the short stay unit to a regular room. He was finally comfortable by the time we left at 7:00.
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