Great news!

[posiepurrs]

He has really perked up since the news. IF he gets approved for the transplant he could be back to leading a fairly normal life. He is even talking about playing golf again - he hasn't played in 4-5 years. He is also talking about going back to work part time. I would love that! He needs something to do to get him off the couch and involved in life. Plus, it would free up my time too (I sound selfish) since right now I am stretched thin with getting everything done. It is mentally and physically exhausting doing everything. The only thing I don't do is shovel the driveway when we have snow - a neighbor insists on doing it. I told him the other day that when he gets better I am taking some time off and he can take care of me!

 

[Winchester]

I am so happy for you! Both of you! That is just wonderful news for you!

 

[NY cat man]

He has really perked up since the news. IF he gets approved for the transplant he could be back to leading a fairly normal life. He is even talking about playing golf again - he hasn't played in 4-5 years. He is also talking about going back to work part time. I would love that! He needs something to do to get him off the couch and involved in life. Plus, it would free up my time too (I sound selfish) since right now I am stretched thin with getting everything done. It is mentally and physically exhausting doing everything. The only thing I don't do is shovel the driveway when we have snow - a neighbor insists on doing it. I told him the other day that when he gets better I am taking some time off and he can take care of me!

Sounds fair to me.

 

[BellaGooch]

I’m so happy for you. That is truly the best news.

Plus, it would free up my time too (I sound selfish) since right now I am stretched thin with getting everything done. It is mentally and physically exhausting doing everything.

that is not selfish at all.

 

[posiepurrs]

We now have appointments for UMass about the transplant. He goes for an educational visit, then the next day he goes for more testing ( he is thrilled about that! ) and then a few days later he meets with the transplant team. I was told I can attend the meetings, which I am happy about, rather than sitting in the car like I had to when he had the biopsies.

 

[neely]

This is the best news ever! You must be jumping for joy. I'm so happy for both of you.

 

[MoochNNoodles]

That’s good news! Especially that you can go too. Please keep updating us. I know we are virtual; but we sure care!

 

[BellaGooch]

I know we are virtual; but we sure care!

Yes, we definitely care! This is wonderful news!

 

[posiepurrs]

Still no decision on if he is a viable candidate for transplant. We have met with the team. one expressed doubt, the others seemed to think he would be a good candidate. His MELD score was 15. It is a scale that they use to predicted the chance of death within 3 months. It goes from 6 to 40, so he isn't in to bad of shape according to that. He still has to see a cardiologist. These past few days he hasn't been himself. His ammonia levels were elevated at the last blood test. That leads to confusion and crankiness, a lot like early dementia. Add that to the fact he hurt himself a few weeks ago thinking he could stack firewood (that is another long, aggravating story as to why he needed to stack it). He now has to have a surgical consult for a possible hernia. Aside from feeling overwhelmed sometimes and tired, I am fine. At least now I can get outside for a break once in awhile.

 

[neely]

Thanks so much for the update. I hope he doesn't need a hernia procedure on top of his other health problems but if so we will keep our fingers crossed for him. Sending special thoughts and hugs to both of you.

 

[Mia6]

I hope and pray things will work in his favor.

Mia

 

[posiepurrs]

He is back in the hospital. This past week or so I noticed more and more confusion. Yesterday he tried to get out of bed and fell to the floor. I tried for 2 hours to get him up but he was to out of it to understand what I was telling him. The paramedics came and got him up. He wasn't injured. They can't figure out what is causing it, having ruled out enzyme levels being off and infections. I hope this makes sense - I am going on about 3 hours sleep.

 

[posiepurrs]

Another update. He was hospitalized for 12 days recently (again). but this time I got him transferred from our local hospital to the hospital where the transplant team works. The local hospital is okay if your problem isn't as complicated as his, but he has SO MUCH wrong! UMass, where he was transferred, has been WONDERFUL!!! My only complaint is that it is 40 miles away, so if he needs an ambulance he has to go local first and then be transferred to there. Our town ambulance will not go that far. His doctor wanted him on a drug that costs $3000 a month to control the ammonia (that causes the confusion). He arranged so we get it for free. Bill is home now. The head of the transplant team is the one treating him. While he was in the hospital they did the cardiac work up they needed for the evaluation. It was abnormal. They think he needs a stent. They could not investigate farther because his platelet count was critically low and he could possibly bleed to death during the procedure. The doctor told us of a newer drug that helps the body replace the platelets - cost $10000 a month. He put him on it and again arranged for it to be no cost to us. It seems to be working because his energy levels have increased. He will go for a blood test this week to see how much his count has increased. They have scheduled the catheterization at the end of the month.

 

[susanm9006]

I sounds like you finally have the medical team you and your husband needs. Still, it has to be exhausting to be going through all of this.

 

[posiepurrs]

Another update. Yesterday he went in for the cardiac catheterization. What a LONG day! He was taken back for the procedure at 10 AM. We got home at 10PM. The procedure didn't take all that long, but they couldn't stop the bleeding where they inserted the catheter. The staff was fantastic! The nurse even offered me some food while I waited. Good news is the cardiologist did n't find any significant issues. He told Bill that as far as he is concerned he is clear for the liver transplant.

 

[susanm9006]

That is great news.

 

[MoochNNoodles]

That’s wonderful news!!

 

[aliceneko]

Such wonderful news, so happy for you both! Here's hoping you both continue to have good health.

 

[Mia6]

Oh, Lynda!

Such wonderful news. I think UMass was a great idea and the meds being provided is amazing!

 

[posiepurrs]

I am sorry if I already posted this. About a month ago my husband was approved for the transplant list. We found out later that none of our kids were acceptable as donors, nor could any of the rest of the family do it (brother, sister or me) because we all have high blood pressure or diabetes. In the meantime he had a set back. He became bed bound. He was admitted to the hospital and he has been in the hospital for a month now. He was moved from the local hospital to a rehabilitation hospital where he developed DVT. Was transferred to a larger teaching hospital to have a filter put in since he can't take anticoagulants. He then went back to the rehab hospital. The rehab hospital is fantastic, but the other hospitals are awful. I wish we could have gotten him to the transplant hospital when he went in but because he had to go by ambulance they wouldn't take him that far(40 miles). The local hospital is okay if you just have a broken arm or need stitches. but for anything else, no. The teaching hospital is bad too. Both hospitals messed up his medicine and the result was he had an HE episode and also his heart rate increased to 114. They had stopped giving the medicines to control his heart rate. He is still not walking yet, but they are sending him home Sunday. My family room has become a hospital room with all the equipment they ordered for me. Medicare paid for most of it, except for the slide board (makes it easier for him to get from bed to wheel chair) and the wheel chair ramp. They said the ramp was not medically necessary. What am I supposed to do - leave him in the driveway?? After the DVT thing happened he got really depressed and started calling everyone to say goodbye. He called his best friend, Mark, and Mark told him he would donate! He has already been to the transplant hospital twice for testing to see if he is a match. Please keep your fingers crossed! I think I will probably collapse from exhaustion after this is over - I am only sleeping 4 hours a night. I am sleepy until I go to bed.