Up and down

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.

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.

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

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.

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.

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.

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.

At AGH

We are still at Allegheny General. He got here at 7:00 a.m. this morning. He's been receiving fresh frozen plasma. They are not going to be able to get platelets into John in time to tap him today, so they're going to admit him and give him platelets in the morning, check his blood, then hopefully tap him (paracentesis is the medical term). This really ticks me off because he's so, SOOO uncomfortable and he should have been admitted Wednesday. With God as my witness, these delays WILL NOT happen next time.

Frustration

It took several phone calls this morning to ensure John will be getting his stomach tapped Friday. He was very, very tired today and very, very uncomfortable. He should feel much better not too long after the procedure tomorrow. Praying he will.

I hate hospitals

Gee, how do I describe this day?

This morning Van and I met John at the hospital as he was to get his stomach tapped. When we got to the short stay unit, the nurses told us the procedure was cancelled because his INR (International Normalized Ratio) or simply a type of clotting factor was not in the safe range. The higher the INR is, the greater the chance of abnormal bleeding with a procedure. Most doctors prefer an INR of 1.3 - 1.5. John's was 2.1 and that actually is acceptable in some cases. In the past, it has been well over 3. He's been taking vitamin K and that has helped keep it lower. But apparently radiologists have a higher threshold and wouldn't do the procedure. This has happened before at the local hospital. John was SO upset, he was sobbing. It was awful. I called John's PCP and told him we wanted him to go to AGH today. The last time this happened we waited a day or two to give him blood products and they still wouldn't tap him then it became a very critical situation. I wish we would've arranged for him to go to AGH in the first place. I sort of got all radical (no yelling or swearing) and I guess I was circumventing the process, but everyone did what they could to get him to the AGH ER. SOOOO, Van called off work and we get there and the first doctor who saw him was very kind and helpful. Then we saw the attending ER doc and he had the bedside manner of a ROCK. Rude, very UNhelpful. John actually gave him the Italian salute as he was leaving the room. Too bad he didn't see it. He basically told us that the ER would not tap him and he wouldn't be admitted for blood products. To make a long story short, the ER did contact the liver specialist and he will be tapped Friday. We complained about the attending physician to someone and they said he would soon be going to a different hospital. Good for future AGH ER patients but I feel bad for the patients at whatever hospital he's going to.

So it was a return trip from Pittsburth to the nursing home. This was at 3:45 in the afternoon and this all began about 9:00 a.m. this morning. By the time John got back to the nursing home, he was in a better mood. We did have some good news today- he's graduating to soft foods. He received a dinner tray upon his return and he really enjoyed it. Mashed potatoes and some sort of meat...chicken I guess. He was comfortable when we left. Tomorrow I'll check on him at lunchtime then return in the evening with the dogs and watch hockey with him. And now I am going to bed.

How about some real food?

Sorry I haven't felt like writing a whole lot here lately. I just have enough wherewithall to post "highlights."

John had the barium swallow today, but we don't know the results yet. He thought it went well, but we'll know for sure tomorrow. I know he will be much happier eating solid food. He gets his stomach tapped tomorrow and I'm praying he won't need blood products and that they will remove all the excess fluid.

Not sure if I've mentioned this yet, but John has an appointment with a liver specialist from Allegheny General Hospital on June 23rd. We requested (and received yesterday) all his records from St. Joseph's in Phoenix regarding his head injury in 1989. About 172 pages and reviewing it was like a walk down memory lane. I hope the info paints a clearer picture of John's "normal."

Improving slightly every day

John is having a follow up swallow study tomorrow. He gets his stomach tapped Wednesday. Wish it was the other way around. He is very uncomfortable full of fluid. Again, he seemed a little bit stronger today. He is definitely making progress, although slowly. We have a family conference at the nursing home Friday. I'm hoping he can go back to assisted living in the near future. I know he would like that. But we just can't look too far ahead right now.

Slow news day

No more bleeding, thank God. John is really getting tired of the liquid meals. He complained to the staff this morning. It's good that he has an appetite. I hope his PCP sees him tomorrow so he can get his stomach tapped. I'll write more tomorrow.

One day at a time

John continued to have hiccups last night and around 11:00 p.m. he had bright red blood in his mouth. The nursing home called Anita and she met them at the hospital. He didn't want to go; didn't think it was a big deal. Fortunately, his platelets were okay and the bleeding was very slight, so they gave him vitamin K (to help with clotting) and sent him back. I saw him around lunch time today, he was okay and wanted to sit on the edge of the bed to "eat" his lunch. Still clear liquids, lemon ice and jello. I advised him to stay seated upright for at least an hour after eating (thanks for that advice, Karen). I went back in the evening with the dogs. He had dinner then we went to one of the lounges to visit. I know he'd like to eat solid food and he has an appetite, so hopefully next week he can begin the transition to solid food.

Tiny steps

Saw John this morning while he was in PT. He seems a little stronger every day. He was catching and tossing a beach ball. He would not have been able to do that a week ago. In the evening he was chatting a bit and watching TV.

He seems to be tolerating the liquid diet. Of course, he could still be aspirating without any symptoms. I'm anxious for him to have the follow-up barium swallow. I'm terrified he's going to get pneumonia. After tonight's "dinner," he had a terrible case of the hiccups and some heartburn. Between that and his swollen belly, he was very uncomfortable. He had a scheduled dose of Zantac at 9:00 p.m. so that should help. And it's time for another stomach tap. That will probably be early next week.

The plan...for now

Last night...tossing around ideas with my sisters...trying to figure out what is the "right" thing to do. And not having a clue.

John has an NG tube because he is silently and not silently aspirating. He has had trouble eating and drinking since his head injury 20 years ago. He is miserable with the tube. His mouth and throat are dry. The wet swabs aren't cutting it anymore.

John has an appointment with Allegheny General Hospital June 23rd. The outcome may be the same, but it's worth a try. He still doesn't know about UPMC's decision. We don't want him to give up. I called his primary care physician this morning. Spoke with his nurse and gave her the latest news. I asked if we could remove the tube and let him start drinking and eating again. When I spoke with the doctor later in the day, he said he could remove it, but we have to understand he could aspirate which could cause other serious problems. We told him to go ahead and remove it. John understands the risks. Now we're praying he doesn't aspirate and get pnuemonia. So late afternoon it was removed and he was able to sip iced tea, broth, apple juice, ginger ale and some lemon ice. He looked so relieved. It perked him up quite a bit. The speech therapist will be able to more easily work with him and he will have another swallow study Tuesday. He was pretty weak with the first one and not that he's still not weak, but he is a little stronger. I hope we made the right decision.

Bad day

As I was entering the nursing home this evening and about to say hi to my sister (she works in the office 3 nights a week), my cell phone rang. It was John's liver specialist. I asked why he was denied and he said that they look at the whole picture. The effects of his past head injury, the hip fracture that never healed properly and the deconditioned state he's in led to the decision. He said a transplant is not an option for John. He said he will still care for John if we want. I asked about continuing stomach taps and blood products and he said we need to discuss with John whether to continue these things or discontinue them and make arrangements for hospice.

I didn't want to tell him this news today. Every time I look at him I start crying. He was having a hard time getting comfortable then I realized he was crying. He's frustrated and tired of all this. So we both cried.

Tomorrow I'll ask his PCP what he thinks. He has been very good with John and is very compassionate. If John wants to, we can connect with AGH again for a second opinion. It's hard to know what to do, but I do know one thing. Life is not fair.

Very disappointing news

I called UPMC's transplant coordinator this morning and was told they declined putting John on the transplant list. Talk about the wind being let out of your sails. She said we should make an appointment with John's liver specialist for details and who knows what else. I don't know what options, if any, are available. He already has an appt. next Wednesday the 20th that was put on hold, so I called the office and asked if we should keep that one. Haven't received a call back yet. I guess we can try Allegheny General Hospital, also in Pittsburgh. He was an inpatient there in January. They have a liver center that's been functioning for about a year. Maybe they take more high-risk patients. Then again, I thought UPMC was known for that.

I'm still not sure what the specific reasons were for denying him, although his current state of weakness is one. I asked if he could be presented again if he were stronger and she said he could, but not with a lot of conviction. His current MELD score is 26, which is acceptable, so I don't know.

By the way, MELD stands for Model End-Stage Liver Disease which gives each person a score based on how urgently one needs a liver transplant within the next three months. The score is calculated by a formula using bilirubin, creatinine and INR (clotting factor) lab test results. The range can be from 6 to 40, the higher the number, the more critical the need for a transplant within 3 months. How much weight this carries when evaluating a patient, I don't know.

Needless to say, this decision is not the one what we wanted to hear.

I hate waiting

John had physical therapy today for the first time since he arrived at GH. I saw him in the evening and he was uncomfortable and wiped out. His mouth is always parched and since he has the NG tube, no water or food by mouth. The dryness makes him miserable. The only thing he can do is clean his mouth with wet swabs. He also saw the speech therapist today. She'd like to do another swallow study since he's a little stronger than when he underwent the test at UPMC. They did another x-ray and they still see the diffused ileum and his PCP would like a surgeon to look at him. A surgeon? Don't think he having surgery anytime soon unless it's for a new liver. I called his liver doctor's nurse and relayed the info. I'd like to know if they were already aware of this and what should we do about it.

I'm pretty sure the transplant team reviewed his case today, although I don't believe the transplant surgeons have seen him yet and that needs to happen soon. I have a name and number for the transplant coordinator and I'll be calling her tomorrow to see what's next. Sigh. This waiting for their decision is very nerve-wracking!

If you donate blood, I thank you!

John spent the majority of the day at the hospital getting blood and platelets. He looked a little better today. I thought he was getting an ultrasound at the hospital, but no, he's getting another x-ray at the nursing home. He has a diffused iliem, which is a slight blockage in the small intestine. No one seems to be very alarmed about this, so neither am I.

Hope all the moms had a nice Mother's Day

Not a real exciting day today, but it was nice. Van, Anita, Jeff, Lili and I had a mid-afternoon dinner. We visited John and then visited Laurie and Darryl for an outrageously sinful dessert.

John's been getting feedings via the NG tube. The stuff is called Jevity. Looks kind of like chocolate milk but not really. Probably a good thing he can't taste it. He's still pretty weak and tired. Tomorrow he goes to the local hospital for blood products and ultrasound.

Thanks, anonymous poster, for your comments. I think his MELD score is under 30, but his INR creeps up quickly without fairly frequent plasma, platelets, etc. He spent some time at AGH in January but wasn't evaluated there because we decided to go to UPMC. He definitely needs a transplant.

Boy I'm tired

Stopped by GH this afternoon and John was sound asleep. We didn't wake him because he finally looked like he was comfortable. I went back later with the dogs and the aides put him in a wheelchair so we could go to one of the lounges to watch the hockey game. He did pretty well, staying in the chair an hour and a half. Hard to believe, but I think he's getting used to the NG tube.

University of Pittsburgh Medical Center (UPMC) is presenting John's case next Tuesday. The transplant team will review all the test results, interviews, etc. and make a decision as to whether John can go on the transplant list. Please keep this in your prayers!

I'm beat...time for bed.

J back in New Castle

Well, turns out John went to GH today. I thought he had a stress test yesterday, but he just had an echocardiogram. Today he had the stress test and he was back on his floor early enough to send him to GH this afternoon. Saw him late this afternoon. Poor guy hates the NG tube. I feel so bad. I hope he can start eating and drinking by mouth soon. At least he no longer has the central line, and an IV pole following him around. Tomorrow he'll be assessed for physical therapy. He'll enjoy that immensely I'm sure. I think the Pens are playing tomorrow night, so the girls and I will go watch the game with John.

The Plan

Today John got his nasogastric (NG) tube today. I talked to him on the phone mid-afternoon and he did not like it. I called his nurse around 7 p.m. to see how he was doing with it and have the nurse remind him to watch the Penguins game. His nurse said he was doing well with it and receiving his first feeding. He also had an echocardiogram and chemical stress test today. I believe that completes all the tests needed for his transplant evaluation. I think they will present his case next week. Praying for approval!

Friday morning he'll be released to Golden Hill nursing home . He needs skilled care until he gets his strength back. He'll receive physical and occupational therapy while there. Going to bring him his clothes and shoes tomorrow. I know he'll be glad to get out of there, but is not too keen on going to the nursing home. I just hope he starts feeling better soon!

I'm trying to make plans to head back to Florida in a couple of weeks. Don't know if I'm going back for a few days or a few weeks. It'll depend on what the transplant team decides.

Moving forward

John was sitting in a chair when I got to the hospital today. He looked exhausted. They still hadn't drained him. Fortunately, one of the internal med doctors tapped him bedside in the afternoon and drained almost 5 litres of fluid. After that, he fell into a sound sleep. It looks like he'll be released in a day or two to a skilled care facility for rehab. Working with the social worker on that one. So that is good news. He can't wait to get out of there, but will be getting physical and occupational therapy to get his strength back. He'll undergo the rest of the tests for transplant evaluation soon. Praying he'll get on the list!

Sigh

John is tired of being in the hospital. He's also physically tired. Today he received blood products in anticipation of a new drain. Aunt Esther and I stuck around into the evening waiting for radiology to determine if his clotting factor was in a safe range. They decided they will give him more plasma around 4:00 a.m. then insert the drain sometime in the morning. I know he'll feel a bit better once the fluid starts draining again. A speech therapist worked with his swallowing technique while we were there. Still no food or water by mouth and no NG tube. He's receiving IV fluids.

Not much new to report

Van, Jeff, Lili and I went to see John for a couple of hours this evening. He's still really tired, but seems to be okay. Not sure what's ahead next week. Probably won't know until Monday. Tomorrow Chrissy and Anita and going to visit John. Sunday seems to be my day off. :)

Okay

I'm pretty tired, so I'll make this quick.

John was noticably perkier today. Mind you, still extremely tired, just more alert. They were still giving him plasma when Van and I got there at 11:00. They finally took him for the ERCP, which is the acronym for Endoscopic Retrograde Cholangiopancreatography (that's a mouthful) around 3:45. The goal was to remove stones that were in the main bile duct from the liver to the small intestine. What the doctor found was a fistula that broke through near the end of the duct. The opening to the small intestine was partially closed and much too small for the stones. The doc was being very cautious not to cut unnecessarily and possibly cause a lot of bleeding to remove the large stones, so he opted to put in a stent so the bile can drain from the liver. The stent can stay in for 2-3 months. Either John will get a new liver in this timeframe and the stent can be removed then or the expectation is that his health will improve enough to be able to go back in a few months to remove the stent and the stones. John was in the recovery room by 5:00, then we went upstairs and waited for him to come back up at 7:00. He was very tired, so we left not too long after that. I just called his nurse and she said his vitals are good and he's sleeping. More to come....thank you for your prayers!! xo