Jan 122017

Julie 2At least, we appear to be making progress. I spent a week in the hospital this last time trying to get my sodium under control. We tried the demeclocyline. As my nephrologist suspected, it didn’t work. So we went back to the Samsca.

The doctor upped my dosage to 60 mg/day, which seemed to finally stabilize my sodium, in the short term anyway. Since Samsca can cause liver damage in high doses (and 60 mg is a very high dose), we’re hoping to be able to lower the dose as the Keytruda does it’s job. The plan for now is to monitor my sodium 3 days/week. Because a sodium level of less than 120 is technically unsafe (the doctor said it could actually kill me) and he doesn’t want to raise my dose any more than he already has, any time my sodium goes below 120, I am to immediately go to the ER.

I got out of the hospital last Friday and my sodium has been stable since then, so fingers crossed.

While I was still in the hospital, as is required by the drug company for me to get another batch of free pills from the drug company, we went ahead and applied for the Samsca co-pay program again (I was running low on pills anyway). The case manager and the social worker went round and round with the company rep. because for some reason, they ended up having to work with somebody new this time. She insisted on starting over from scratch, so she called my prescription drug company to see if she could get them to authorize payment for the pills. Of course, they refused. I’m not sure what other hoops they had to jump through, but they finally got an approval.

Then we were told I was only allowed 30 pills each time we applied, no matter what the dosage, whereas we thought we were allowed enough pills for 30 days. Since I had already been given 10 pills total before discharge, they said they would mail me 20 more on Saturday. Since the doctor had written the prescription for 30 mg pills, that would only give me enough pills for 10 days instead of 20. I had enough at home for another 5 days, so I’d be good for just over two weeks. And we were only allowed 30 pills over a specific time period. We weren’t sure what that was, but we were pretty sure two weeks wasn’t going to be long enough for me to be eligible for another batch. But we decided to worry about that when/if the time came. Who knew? Maybe the Keytruda, which I was scheduled to receive Monday morning would kick in and start controlling the sodium before I ran out.

Before I left the hospital on Friday, I had another surgery on my throat. The ENT said this would be the last one for awhile, but he didn’t define “awhile.” I have a follow up appointment with him on the 24th, so I can ask him then. I finally got out of the hospital late afternoon. I tried to eat some soup, but my throat was so swollen, I couldn’t get anything down except for pudding, applesauce, and water (and even that hurt like crazy). I also put some tube feeding formula in my tube because I figured I needed something a little more nutritious.

On Saturday, we enjoyed a peaceful day at home taking down all the Christmas decorations, although I had to take frequent breaks to rest up from my surgery. Unfortunately, I was in quite a bit of pain. And at least one of us had to be home to sign for the Samsca, so I never even left the house. The Samsca never arrived. We were obviously pretty upset about that, but decided not to let it ruin our weekend. It wasn’t unusual for me to have to get on the phone first thing Monday morning for one thing or another. I’d just have to call the hospital case manager and see if she could straighten things out. In the meantime, I had enough pills to last until Wednesday.

First thing Monday morning John’s phone rang. It was the drug company (not sure why they didn’t call my phone). They needed to ask me if the hospital sent me home with any Samsca. I told them they hadn’t. They apologized for not asking that question on Friday and said they would send the pills out to be delivered to our house that day. But somebody had to be home to sign for them and I had an appointment for my Samsca infusion. I’m not supposed to be driving because of all the narcotics I’m taking for my throat pain. Sometimes I’ll make very short trips since I don’t even feel the effects of the narcotics anymore, but I didn’t really feel up to driving that day.

So I reluctantly went next door to ask my neighbor if she could give me a ride. I felt so bad having to ask her I started crying, but she’s so sweet she gave me a hug and offered to give me a ride and sit with my while I went to get my infusion. And she did. Fortunately, the infusion went well and didn’t take too long. Of course, when we got back, the Samsca hadn’t come yet.

When it still hadn’t come by a quarter to five, I called the hospital case manager. She called the drug company and they told her it would be there within the hour. She also gave me the drug company rep.’s direct number. When it still hadn’t arrived by 6, I called the rep. She tracked the package and said it was due to arrive by 7. At 2 minutes to 7, my phone rang. The driver was lost. Fortunately, he was on our street; he just couldn’t find our house (our street isn’t well lit and we have goofy house numbers). I went outside and waved him down, then signed for the package.

When I opened the package, I was expecting to find 20 pills. It was a skinny box, so I opened one end and turned it to where the pills would fall out that side. They came in boxes of 10. As I turned the box, two packages popped out…then two more…then a fifth box. What the heck?!!! Instead of sending me enough pills for 10 days, the drug company sent me enough for 25! Hopefully, by the time I run out now I’ll be eligible for more based on the company’s specified program timeframe.

Today, a doctor and a nurse practitioner from Vitas Palliative Care came to see me (I was finally able to get a referral while in the hospital). They went over my pain medications with me and are going to take over pain management from the guy I’ve been seeing in Orlando. Since I’ve had to reschedule my appointment with the Orlando physician twice because I was in the hospital, and it takes forever to get a new appointment, I decided it was best to go ahead and switch. I hope I made the right decsion.

The doctor from Vitas will come to my house to see me, so if I’m in the hospital when I have an appointment, he can come there instead. Right now, they don’t have a lot of additional services, but they’re in the process of adding some social work and spiritual services, both of which I feel I could benefit from.

I told the doctor how much trouble I’ve been having with the way the system is run and how I’m constantly having to call everyone myself instead of them communicating with each other. He said if I ever need a doctor to get through to any of these people to feel free to call him and he’d be happy to make some of these calls for me. If he’s serious about that, that could be extremely helpful. Time will tell, I guess.

My home care nurse had called while the palliative care people were at my house to let me know what time she was coming out. When she got here, she asked me about them being here (I had told her they were here when she called because I had to cut her call short). She said she didn’t think she would be able to continue to come out if they were coming out, too, because I’m only allowed one home health company (great).

But Vitas doesn’t provide nursing services, so I told her that. I think she was thinking of this place like Hospice care, but they don’t provide the type of comprehensive services that Hospice does. She said she still wasn’t sure, but she’d check and let me know.

Since I already cancelled my Jan. 20 appointment with the palliative care doctor in Orlando, I’m not sure what I’m going to do if my nurse comes back and says she can’t see me anymore. I can’t really afford to have palliative care services in place of nursing care services in the long term (or vice versa). She hasn’t called me back today, so maybe she found out she was wrong.

That’s all I’ve got for now. Thanks for following my blog and for all the prayers and well wishes.

 Posted by at 4:44 am

  4 Responses to “Finally, some progress!”

  1. I am glad you are so stubborn and ramrod these things that others fall short of doing. I am hoping and prayer that this soon will just be a bad memory and that we will be sitting on some beach finding ways to help the health care steam function better for all those that have to deal with the frustration you have to deal with. I love you and will see you soon.

  2. Well at least your making some progress, I know it doesn’t seem like it.
    I hate seeing you have so much stress dealing with. That doesn’t help you to get better. Hope you can get to have less stress, it would be helpful to your health. Hugs, kisses and Prayers. Sent your way.

  3. Yay! Some good things have come your way. Long overdue! Happy you received more Samsca than was expected. I continue to be amazed at your strength and determination. Gary and I think and speak of you often. Sending love and prayers, Sharon

  4. Glad you finally caught a lucky star!

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