Bad night

[posiepurrs]

The original hospital still has not released his records to the hospital he is in even though I signed giving permission (I am his medical proxy). I spoke with his doctor yesterday and he feels he is well enough to be discharged to a rehab facility possibly today, He is also discontinuing diabetes medication with multiple checks of sugar levels done daily. He says the levels so far while in the hospital has been good once they got it stabilized. I did speak with him about the transplant but he was not encouraging, He is not a specialist though. We will be setting up appointments for follow up with new doctors. My husband wants to change his Gastro doctor too since he is affiliated with the first hospital.

 

[Mia6]

How are you you doing, Lynda?

 

[posiepurrs]

How are you you doing, Lynda?

I guess I am okay. Sometimes I feel overwhelmed since I am responsible for EVERYTHING now - budget, repairs, shopping, pets, housework, yard work, as well as keeping track of his care. I sometimes wonder how in the world I had the energy to raise 3 kids?? My kids have been awesome. They want to pay the deductible we have for his first hospital stay (This was his 3rd in less than 3 months), but I told them I would set up a payment plan. After he was transferred to a rehab facility yesterday, I took the rest of the day off and just vegged out. That is how I celebrated my birthday. He isn't allowed any visitors for 14 days and after that we can only visit outside on the grounds due to Covid-19 restrictions. This facility has not had any residents with Covid and they want to keep it that way.
I do long for the days when all I had to worry about is getting the cats ready for a show.

 

[neely]

I took the rest of the day off and just vegged out. That is how I celebrated my birthday.

Happy Belated Birthday! I know it's not the way you wanted to celebrate but I hope the cats were there by your side to comfort you. I'm glad to hear the rehab facility he's at has not had any cases of Covid. Thinking of you.

 

[doomsdave]

posiepurrs so sorry to hear!

I've never heard of HE, thanks for giving the heads up. No liver problems for anyone I know yet, thank heaven.

Hope you and your husband are okay.

 

[susanm9006]

I am glad that he is somewhere safe and also that you have the opportunity to get a breather and some rest.

 

[posiepurrs]

I thought I would update. My husband is still in the rehab facility. He can walk 80 foot with a walker now, but still has trouble feeding himself due to shaking hands. The major issue right now is he is being sent back to the hospital for 2 units of blood today. He had transfusions during his second hospital stay (he has been hospitalized 3 times since August). They can't seem to figure out what is causing his anemia. I have a new doctor for him that he will see Nov 9 once I get the records transferred over. I am a little down today between this and the weather (our first snow). However they are talking about discharging him from rehab soon.. His 20 day Medicare stay will be up Nov 9 and the place is far to expensive for us to pick up the tab.. Medicare will pay for a visiting nurse and/or an aid if needed after his discharge.

 

[susanm9006]

The visiting nurse is a really good thing. We have had one coming for my mom, and the nurse stays in touch with her doctor so meds can be tweaked if necessary.

 

[jeannem]

Sometimes Medicare sucks! Visiting nurses are very good too. My Dad had excellent insurance so he could take advantage of all those services. So far we haven't needed to deal with anything like that.
j

 

[posiepurrs]

Sometimes Medicare sucks!

So TRUE! His gastroenterologist ordered a PET scan for him awhile ago and it was denied by Medicare. I didn't know at the time you could appeal the decision (this is all new territory to me). I asked the doctor to order it again, and he doesn't want to do it. We will see what the new doctor says.

 

[Mia6]

After he was transferred to a rehab facility yesterday, I took the rest of the day off and just vegged out. That is how I celebrated my birthday

HAPPY BELATED BIRTHDAY!!!

You've raised some amazing kids; wanting to help our financially with the deductible.
You need a few more days to just veg out. Maybe have a nice, long bath with scented
candles, then curl up with kitties and a good book or movie.

Sending prayers and healing vibes!

 

[posiepurrs]

My youngest son, who has no family and a really good job, paid the ambulance bill when my husband had to go for more blood transfusions and then he surprised me by depositing enough in our checking account to cover all of our expenses for November. He said he did it because he knew I wouldn't ask for help. While I don't like it because I feel like we should manage on our own and shouldn't depend on anyone else, it makes my heart proud that he would do this. I have some GREAT kids!

 

[susanm9006]

That is so wonderful that your son did that for you.

 

[neely]

It's both genuine and inspiring when the roles get reversed and our grown children worry about us. Your husband and you must have been sensational parents.

 

[posiepurrs]

Another update. He is home! The first day he couldn't get upstairs, but he is now doing it. While he isn't recovered completely, he is SO MUCH better! I am still afraid to get out of ear shot in case he needs me, but it is getting easier. The only glitch is the doctor added another medicine for his liver while hospitalized. When I went to get it filled after he came home, Medicare refused to okay it. It seems it costs $3000 for a 30 day supply. The manufacturer ahs a program to help with costs but if you are on Medicare you don't qualify. We have an appointment with the new doctor tomorrow and I am going to address this with her. Being on Social Security. we can't pay that much a month for medicine. It does the same thing as the other medicine he has been on for a year (which is much less expensive).

 

[Mia6]

Lynda,

I'm so glad he's doing better. Sometimes the manufacturer of the drug will help you with costs. My nephew
was on a med for for his liver prob for 3 weeks and it cost $78,000.00 but it was covered. He is on the Affordable
Care Act, Obama Care.

Your son is a gem!!

Love,
Mia

 

[MoochNNoodles]

Thats great news! I hope the med issue is easily sorted.

 

[posiepurrs]

Sometimes the manufacturer of the drug will help you with costs

I checked and because he is on Medicare he doesn't qualify for help.

 

[posiepurrs]

Thought I would update. He has been in and out of the hospital the month of December. His new doctors are really working on figuring things out. He had a PET scan, 2 biopsies (bone marrow and lymph node) and both are clear of cancer. They are going to investigate a lesion on his liver. His PCP referred him to the transplant team in a local city and after all the testing they will set up a telemed call with us. So far, besides the end stage liver disease, we have found out he has stage 3 kidney disease, sarcoidosis of the lymph nodes, hypercalcemia, anemia (both of which are unexplained so far) in addition to diabetes and hypertension that we knew about. I REALLY like his PCP. I had messaged her through the patient portal about a question I had and she called me instead of answering through the portal. It was after hours when she called too! Yesterday he had a bad day. He is going for blood work today and it would not surprise me if they want him back in the hospital. He is getting more and more confused - a sign his ammonia or calcium levels are to high.

 

[artiemom]

Sending you more ((hugs))) and love...
I am so glad he is getting things investigated!! So glad you are finally happy with his new PCP... that is a major thing/feeling....

Sorry about your hubby having bad days.. that does happen.. it is so frustrating and heartbreaking when you watch alone you love, suffer... It is so hard to deal with...

This is a new year, you have good doctors on your side.. thank God... It is difficult, so hard to do.. but try to stay a bit positive. It is tuff to go through all the testing, but so necessary; in for to find the best, most appropriate treatment....

Please keep us posted... we love you...