Jan 072019

First off, I’d like to begin by apologize for the length of this post. Obviously, you can just choose which part(s) you’d like to read and ignore the rest. I’d also like to apologize for taking so long to get back to those who’ve asked questions about specific test results, treatment, etc. I appreciate you checking in on me. But so much has happened in the last several weeks, I’ve had to come back and review/update as time’s gone by.

So here goes…

I had a lot of family coming to visit over Christmas break. I was really excited to see them, so I did my best to tie up any health-related loose ends so I could free up time to enjoy their stay.

The biggest thing on my list was making sure I had enough Samsca to keep my sodium up until after the first of January. That would mean another trip to the hospital.

The last time I’d been in the hospital, the case manager had given me a blank copy of the form we used to apply for the free Samsca. There are three parts to the form:

  1. Patient information: Patient demographics, insurance information, financial eligibility
  2. Prescriber information: Doctor name and specialty, state licence and DEA numbers, Prescriber contact information, drug name and ICD-10 code
  3. Hospital information: Hospital name, case manager name, case manager contact information

In order to be eligible or the free Samsca (which comes from the Otsuka Patient Foundation) I have to be admitted to the hospital with a diagnosis of hyponatremeia (low sodium). The case manager told me if I filled out my portion (and the nephrologist filled out his) before I got to the hospital, things would go much faster.

So I put together an “infallible” plan:

  1. Make a few copies of the form.
  2. Give the nephrologist’s office copies of the form.
  3. Have my sodium drawn early in the week, and call for results as soon as they’re likely to be available.
  4. Make sure whichever doctor was admitting me (PCP or oncologist) had received a copy of my sodium results and would be available to request a bed for me.
  5. Keep a hospital bag packed and ready to go.
  6. Pick up the signed paperwork and a prescription from the nephrologist’s office as soon as I got the call that it (and my bed) was ready.
  7. Check into the hospital.

I figured once I got admitted to the hospital, I could:

  1. Explain the situation (again) to my new case manager.
  2. Give her (or him) the nephrologist’s portion of the form and the prescription.
  3. Give her my portion of the form (which in a perfect world would already be filled out).
  4. Ask her to fill out her portion of the form and fax it all to the number on the front of the form.

With this new “streamlined” process, I could be be in and out of the hospital as soon as they got my sodium back to normal (usually by the next day or the day after).

We only had two weeks before Christmas break, so the first week, I lowered my sodium dose from 45 to 30 mg on the day before I had my blood drawn. I didn’t want to lower it any further because even at 45 mg/day, my sodium was being checked twice a week and was consistently running in the low- to mid- 120s. And anything lower could be dangerous.

The first week, my sodium was 131, and none of my doctors will admit me until I’m under 130. Of course, on Thursday, it was back down to 126. Go figure. I didn’t think there was much point in getting admitted that late in the week because nobody does anything over the weekend. So I waited.

It would have been ideal to go in the next Monday (December 17), but I had an appointment at Moffitt in Tampa to talk to a doctor about any potential clinical trials that might help me get rid of the tumor in my stomach, and I definitely didn’t want to miss that. And my oncologist is out on Tuesday. So I decided I’d get my blood drawn on Tuesday, and on Wednesday, I’d call for results (after which my oncologist’s office would call the hospital to get a bed for me).

On Monday, we made the 2 1/2 hour trip to Moffitt to talk about clinical trials. The oncologist there was very nice, but he didn’t have much to offer. He said we could do an Opdivo/Yervoy combo. Those are both immunotherapy drugs. They have more side effects than Keytruda, but have been shown to work fairly well for people who initially had success with Keutruda.

I knew my oncologist could offer me those drugs himself, and the doctor from Moffitt agreed. I figured if my current oncologist had a lot of faith in that combo, he already would have offered it to me.

The only clinical trial the doctor from Moffitt had open for me was an Opdivo/Yervo combo with a vaccine component. I like the idea of a vaccine. It seems to be the next promising treatment after immunotherapy. But when it was all said and done, I’d basically be living in Tampa during the week for as long as the vaccine was working for me. Which really wasn’t ideal, but something to consider. The doctor from Moffitt said he’d discuss it with my current oncologist, but he thought just doing the Opdivo/Yervo combo near home was my best option. He didn’t really say why, but the next time I saw my oncologist in Melbourne, he said my SIADH would have gotten me thrown out of the clinical trial the first time my sodium plummeted. So the new plan for now is the Opdivo/Yervo combo near home. But we still have to work through the financials before we can get started.

So, on December 18, I had my sodium drawn again. It was 133. I was running on very little sleep, and by this time, I was feeling pretty stressed. What does one with SIADH have to do to get a bad enough lab result to get thrown in the hospital for low sodium?!!!

The oncology nurse suggested I skip Wednesday’s dose (which I hadn’t yet taken), and come back in on Thursday for another blood draw (my poor, abused veins…). She said if I went to their off-site lab and had a STAT order, she’d have the results back in about 30 minutes. It seems so ridiculous to spend all this time trying to lower my sodium so I can go to the hospital and get pills that will raise my sodium again. But we agreed this would be the best course of action.

The next morning, I had my sodium drawn again. When I hadn’t heard anything from my oncologist’s nurse by early afternoon, I called for my results. When the nurse got on the phone, she said, “I’m sorry. Your sodium was still 133.” That was on December 20, and my company would begin arriving on December 23. There was nothing else to be done until after the holidays except ration what was left of my Samsca and celebrate the Holidays with my family as planned.

We had a few bumps in the road (e.g., a prompt from one of my sisters to take another Samsca before I had a seizure; an off and on fever that was over 102, an incident in which I couldn’t get one of my pills to go down and had a bit of a breakdown). But otherwise, we had a very nice holiday. It was great to have us all together again (except for our mother who died in 2012). Then it was back to business.

On New Year’s Day, the last of my sibling left. A few hours before dinner, I started running a fever. I was hoping it would be minor, but no such luck. My husband brought me dinner (I slept through half of it), blankets, Tylenol, a thermometer, and cool wet cloths for my forehead. At one point, my fever was more than 102. I camped out on the couch, and asked my husband to call 911 if I started having seizures or went into a coma.

I actually thought I might die that night, but never said anything. It felt like 2016 all over again (That was the year I almost died for real.). Although I wouldn’t say I wanted to die, I felt okay about it. I’d just seen a lot of my loved ones, and I’d had a chance to travel more with my husband and do a lot of fun things in the two “extra” years I’d been given. So I was okay with it if God had decided it was time for me to go.

My fever broke in the middle of the night. So I got up, changed my clothes, and went back to bed.

On Tuesday morning, I got up and went for a blood draw. Not too long after, the nephrologist’s office called and said I needed to go to the hospital. My sodium was 123. So I called the oncologist’s office and asked if he would admit me. When I didn’t hear back by mid afternoon, I called the registration desk and asked what was happening. The guy I talked to said he didn’t have any beds left on the oncology unit. So I asked if he could get me in somewhere else. A few minutes later, he called me back and we were on our way.

The hospital was really busy, so I ended up with a roommate again. She was either on drugs or had some sort of psychiatric illness. She was on a rant about something, so I immediately asked to be moved to another room. While my nurse went to see about another room for me, my roommate came over with her arms full of Styrofoam cups. She yelled something like, “Do you know these are the only Tupperware containers I have in my entire trailer?” I didn’t catch the rest of it, but apparently this was somehow the hospital’s fault.

Her nurse tried to calm her while mine ushered me to the bed by the window and assured me she’d get me another room. Not too long later, the other patient was moved to the psychiatric ward. I didn’t blame this one on the hospital. The woman obviously needed help, and they couldn’t exactly put her in with someone else.

All was well until around 1 a.m. the following morning. I was fast asleep when I heard a lady screaming for help. She was loud…and she was in the bed on the other side of the curtain. The woman was cursing, begging for narcotics, and telling the world how awful the hospital was for allowing her to stay in so much pain. I know what it’s like to be in pain, so I prayed for her and did my best to go back to sleep. The woman continued to yell for most of the night. But once in a while she slept, so I tried to do the same.

The next morning, my sodium was 121, and we re-started the process to get it back up and to get my Samsca. I also told my doctor about the fever I’d been having off and on. He ordered a chest x-ray, followed by a CT scan of the chest.

When the case manager finally came in late that morning, I explained the Samsca situation to her (I ought to just record it.), and gave her the part of the grant application for her department to fill out. I hadn’t yet had a chance to fill out my portion since I’d been so sick the night before. And it was a new year, so we would need to get the doctor to do his part again, too.

The case manager sort of just started rifling through the papers. She looked lost as I tried to explain each piece to her. While we were looking through the nephrologist’s part, I told her I thought the people in the doctor’s office had filled out most of it the last time. So she suggested I might want to call them and ask them if they can do it again. I told her the case manager normally did that and said I’d quickly finish my part so we’d have everything together tomorrow. Then when the doctor came in, all he’d have to do is sign. Meanwhile, the woman in the bed next to me continued to scream.

The case manager thought since I had a “relationship” with the women in the doctor’s office, it would be better for me to call them. We just stood there and looked at each other for a minute; neither of us wanted to concede. I finally took the papers and said, “Fine. I’ll just do it.” And she had the nerve to turn around and walk out on me.

I was still stewing, and the woman in the next bed was still wailing, when my nurse came into the room. I had my hands over my ears as I told her she had to get me a bed in a private room. She said she was still waiting for one to come open, but she promised she’d get it for me. I felt really sorry for the nurses because the hospital seemed to be really busy. So I didn’t say anything more.

When transport came to get me for my chest CT (I’d had the chest x-ray the night before), I was happy to get out of my, room no matter what the reason.

When I got back, my roommate was still screaming, and her television was on full blast. My nurse said she had another room for me, so we quickly threw all my stuff on my bedside table and wheeled it down to a private room. Thank God!!!

The next morning, my oncologist showed up around 6 a.m. He said there was no evidence of cancer in my lungs, but there was something there he believed to be aspiration pneumonia. I’ve been having a lot of trouble swallowing lately (mostly pills), and had been wondering if it was time for another throat dilation surgery. He ordered an infectious disease consult to run some tests that would tell her which antibiotic(s) to use.

So the tests were run, and I’ve been put on IV Levaquin for five days, which means I won’t be released until at least Tuesday unless the infectious disease doctor decides I’m well enough to switch to an oral antibiotic on Tuesday. She also ordered a barium swallow to try and figure out why I got pneumonia in the first place.

The barium swallow is pretty simple. You sit in front of an x-ray machine while a radiology tech brings you small food samples of various consistency. When the test was over, the tech told me I was fine to eat any type of food, but I would need to add something with a honey consistency to my water. Which means I’d have to drink/eat? a thickened version of water indefinitely.

I told the tech in no uncertain terms I would not be giving up my water. For all those who have never had to drink thickened water, trust me. It’s disgusting. It’s like water-flavored honey. Until you’ve experienced it, you can’t begin to imagine how weird it is trying to eat water. I told her I’d like a second opinion from an ear, nose, and throat (ENT) doctor. I’d much rather do another surgery. If another dilation won’t work, maybe there’s something else that will.

So I asked my oncologist for an ENT consult. While I was talking to my oncologist, I also remembered something the guy who did my biopsy said (and yes, I do have small cell lung cancer for those who have been wondering). Before the biopsy, he’d mentioned he may be able to remove that particular tumor. When I asked my oncologist about it, he said, “You mean ablate it?” I said yes. He just looked at me for a minute, and I said, “I know he’s not going to be able to get it all, but that tumor is causing me quite a bit of pain, and I’d love to get back off the pain medicine (or at least reduce my doses). He said, “That’s fair. I’ll talk to him about it.”

By this time, it was almost the weekend, so it was decided I could do my ENT consult outside the hospital to speed things up a bit. Unfortunately, the ENT who removed my initial tumor and did my last few dilations had a stroke not too long ago and had to stop practicing. Once I get out of here, I’ll make an appointment with the woman who’s taking over his patients.

While all this has been happening, you may be wondering what’s been going on with the Samsca. My nephrologist was off when I came in on Wednesday, and the guy taking over for him didn’t want to fill out the paperwork. My case manager continued to walk around like a chicken with her head cut off and kept trying to push her work back on to me, and I continued to push back because it’s not my job and I’m tired of being asked to do it.

At one point, the office manager at my nephrologist’s office called me and swore up and down the nephrologist had never written a prescription for me for Samsca (or done any related paperwork) and that he never would. I told her I had a copy of both from the last time I was in here right in don’t of me. She just kept insisting it had never happened and never would. She said the oncologist was responsible for all that. FYI, nephrologist’s are the only specialists that are allowed to write for Samsca.

The office manager finally managed to get the application sent out minus the prescription. Then she wanted me to call Otsuka and ask about the status of my application. I suggested she might want to do that. After we went back and forth, she picked up my phone, turned the speaker on, and made the phone call. The woman who answered the phone said it could now take up to three days to process faxed applications. And she emphasized the word “faxed.” At this point, I almost felt sorry for the case manager because she was stumbling through the phone call while trying to sound professional.

When she got off the phone, I asked her if she’d checked with the Walgreen’s specialty pharmacy to see about the nine pills they usually send me through their bridge program. Since I now have zero pills left at home, I’m going to need some to take while I wait for Otsuka’s specialty pharmacy to send theirs. So she asked if I had a number for the Walgreen’s specialty pharmacy. I used to, but I don’t anymore. So I watched as she picked up my phone and stumbled through more phone calls with no results.

When she finally left my room, I called for my nurse. When she came in she said, “I know. I’m already on it.” What happened next was what should have happened long ago. The heads of the entire case management and nursing departments came down to meet with me. I told them my story (again), and they were appropriately dismayed that it had taken so long to fix this. But I’m hopeful that this time we’ll actually be able to fix it.

The head of case management said she would take over my case for this hospital stay and make sure I got what I needed. Now for the future…

She has an insurance background as well as case management, so I’m hopeful she’ll find a way to get me this drug without jumping through so many hoops. I’ll be eligible for Medicare February 1 (Thank God!), so she’s going to run some numbers and see if a Medicare Part D plan will help or if I’m better off with my current prescription drug program. She’s also going to see if she can get me an advocate from my insurance company to help with this going forward.

Although her help is much appreciated, I don’t think the head of case management will find a pathway that’ll allow me to afford my portion of the drug; it’s just too expensive. And when I asked my nephrologist how his other patients were paying for it, he said they were all on clinical trials for kidney diseases, so they don’t have to pay.

The Otsuka patient portal should actually make things much easier if I do have to keep coming to the hospital since the doctors can get their staff to do most of the work, and we probably won’t have to keep updating much of it once we’re signed in. Anyway, the head of case management is going to speak to all of my doctors and see if we all can’t just get along. I told her I was planning to dump my nephrologist, but she asked me to wait until the dust has settled on this stay, so I reluctantly agreed.

So…that’s where we are for now. Whew!

Thanks for sharing my journey with me.


 Posted by at 2:10 am

  9 Responses to “The Best Laid Plans…”

  1. Well that was in ordeal! I dont know where you get the strength to deal with everything. But I am glad you got not only the strength but the smarts to deal with all the paperwork, people and insurance company, oh and let’s not forget the drug company.
    I am so glad that you got to spend time with your family. I am sure that was the greatest present a person could get and you deserve to have a great Christmas. I love you

  2. Julie, Julie, Julie! I agree with Gina…it’s a good thing you have the smarts to deal with this. It is absolutely crazy that you have to run the gauntlet every month just to get the necessary medicine. I worked for a managed care company for six years and thought if something like that could just be applied across the nation…. But then Prudential closed PruCare because they couldn’t make any money. Surely there are people smart enough to revamp our whole system soup to nuts, which it needs. Too bad there are politicians on the take who block change. Your story is incredible. Actually it’s terrifying. I can’t imagine how you can even share it, though your documenting the events must help keep it straight in your head. Perhaps you could print it, or a summary of it, for your caregivers? Not that they would have time to read it. Have you also pursued any holistic avenues? Like foods and herbs? Never would I give up medicine but I know people who swear by their curcumin, teas, and organic foods in addition to what the doctors dish out. Seeing your family over the Holidays must have been terrific. I so wish you could just find your miracle. You look great if that helps at all.❤️❤️❤️

    • I’ve tried some of the holistic stuff. I just don’t see how people stay heathy enough to keep up with it. I’ve tried green tea, but I can’t drink water. I don’t like hot tea. And the turmeric pills are much too big to swallow. I’ve tried getting the powder out of the middle and putting it in applesauce, but it’s really disgusting. Juicing takes a lot of time, and I can’t keep up with it. Cooking healthy also takes a lot of time and energy. I tried CBD oil, but the doctors who prescribe it and the oil itself are expensive. And according to what I’ve read, I need a whole bottle each day $80/day. And I’m unemployed right now. They all sound like good ideas in theory. And I can’t get any cancer treatment at all until I get out of here. So I don’t know. And thanks. That does help.

  3. Julie,
    IJust the mental and emotional journey you constantly endure is more than we can imagine. Hugs and prayers, Sharon and Gary

  4. Julie,
    God-bless you, it seems it just never ends. I was happy to receive your update although it tears at my heart what you have to go Through.
    John told me New Year’s Eve that things were not going well and that he may be headed to the hospital as soon as he got back home.
    I know you probably get sick of hearing it but we all really do care and do love you and pray for you to get better.
    Do the best you can to hang in there, I know it’s tough and several of the test you had Jack had as well, plus I have had to have my osoph Aguste dilated twice now in it looks like I need to go back in for 3rd 1. In itself alone,It pales by comparison to what you are going through.
    Love you,

  5. Just like what Gina said I don’t know how you do it but you do and its exhausting! I hate that you are going through all of this.
    Love you bunches.

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