No More Dual Listing…For Now

I had to cancel my appointment with Johns Hopkins because I was sick. I’ve been sick since about last Wednesday night, but went to the doctor Thursday.  I’m still recovering, but I knew even on Monday I wouldn’t feel up to going to Baltimore yesterday.

I also had to cancel another appointment with my center. When I called to reschedule them both,  I was now told by the coordinator at Hopkins I would need to fax a doctor’s note to the office before they would rebook me.

I was nice on the phone, took down a few dates & the fax number.

When I hung up I blew a gasket.

Why a doctors note for a consult?   For just meeting with a new doctor?     I needed it just to reschedule an appointment that I had already set up & was just calling to move because of illness.  I gave them 48 hours notice in cancelling. Which I wouldn’t have had to do.

I was done then.

I’m done chasing records,  done chasing notes.

I am not going to pay another copay for a note from a PCP who has just started to treat me (since my other left) to act as a permission slip to just talk to another doctor at another center.

I’ve done enough bureaucratic tangling  & done enough calls with both my insurance & with scheduling appointments & getting information.

I’ve dealt with three centers for transplant services in the past year & half.

Two have made it next to impossible to even get my foot in the door & given me nothing but headaches.

They’ve created more work & stress in a time when I reached out for help.

I resent that.

One, if it has a problem actually confronts it & addresses it.

I know they aren’t perfect & don’t expect them to be.

This decision was not made in haste.

On top of the paper pushing, the resources just aren’t there.  It would be 10 times tougher for me in a time when I’m already struggling.

Their hotels in the Hopkins area (even with medical rates) & an adjacent hospital house are at least double or triple a night what I pay at the either transplant house now.

I even booked an AirBNB reservation originally for the night of the original appointment because the hotel & parking (as an additional fee) were atrocious.

I also needed to be close to the hospital with the way I’m feeling.

I re-read over the packet they mailed me about the program the past few days. I was not satisfied when I stacked head-to-head.

This won’t do what I need it to do for me.

If they are throwing up blocks now scheduling appointments I don’t even want to think of what will happen post transplant with my after care.

If they did my surgery I couldn’t go to my current center in an emergency even though it’s closer.   You have to go where you’re transplanted.

I don’t feel comfortable being that far away with doctors I don’t know.

It makes me extremely nervous.

I pursued this far enough to know what I want.

I will wait as long as it takes for my center to transplant me & take my chances.

I know I’m in good hands & want to keep it that way.



11 thoughts on “No More Dual Listing…For Now

  1. only you know what is best for you.
    I went to John Hopkins for a consult on my vestibular issues.
    Yes, it is EXPENSIVE to stay around there! It was crazy. and I had to stay 3 days because of tests. when I left he recommended a treatment that no other doctor I can find will perform. I could go back there, but if I had an emergency…what would I do. I’m 6 hours away from there. and I didn’t feel like the appointment I had was set up correctly. It was really kind of useless. He was supposed to consult with my doctor at home. They never spoke. My doctor simply said he would never do what they recommended. I no longer have either doctor now.
    Thinking about you Nikki.
    May things happen with your team quickly.

    Liked by 2 people

    • Wendy, indeed & I figured that might be the case, but now really being uncertain with what’s happening with my benefits next year that was another reason I opted out. I’d eat through my small allowance for that pretty quickly & I would rather save my money for post transplant care and drugs if I can. I also felt like I spent enough time looking into this and was done fighting. There are certain things I have to fight for and am more than willing to, but I’m past the point of wasting time I stuff I don’t want to or shouldn’t have to fight. I feel confident I weighted it out all enough to come to the best decision for me & anyone else whose helping me through this too. If my current center wasn’t as strong, then maybe I would have felt the need to press, but since it’s actually stronger I can close the book & at least know I weighed things objectively. Thanks for sharing. I can’t also imagine anything more useless than a consult yielding a treatment you can’t get decent access to & feeling like you wasted your time because the doctor couldn’t be bothered to consult with your own doc.

      Liked by 1 person

      • Nikki, I can’t agree more about choosing what to fight for.
        I’m really not sure if the consult didn’t happen because of JH doctors or Duke doctors. But no one talked. And Duke suggested I go there. Geez. Enough of that though. I’m actually doing much better, so I don’t have to worry about it right now. If I get worse again, then I may need to start looking for a new doctor.
        I’m glad your center is so strong. I hope your transplant happens soon.

        Liked by 1 person

      • I’m glad you don’t have to worry and it was some comfort that some of my friends who dual listed in different regions, where waits were supposedly shorter, my center still got to them first. So I just have to ride it out. Which I think I can do. At least I’m not feeling any worse & my oxygen use has leveled off some again. So, I take what I can get, long as I can wait at home, & stay out of the hospital, right? 🙂

        Liked by 1 person

      • That sounds like a plan. I’m glad your oxygen use has leveled off.
        Sending you my best. As always.

        Liked by 1 person

  2. Nikki, 100% support for your decision. I agree with you about the outrageous need for a doctor’s note. Shame on Johns Hopkins. Someone needs to bludgeon them with their U.S. News & World Report plaque proclaiming their excellence in medicine. Trust me from personal experience, their patient portal is the absolute worst!
    Move forward Nikki, and don’t look back.

    Liked by 2 people

    • Thanks Dennis – I do want to thank you for your offers of assistance. I just have to look support wise too for my caregivers what’s also best for them and after we talked it over we had decided overall Penn was tops as far as that’s concerned.


  3. I had a pretty terrible time just trying to get in the door there too. Now there’s a center set up specifically for just CSF problems, and I would probably be someone they would treat, but because of how unhelpful they are, it’s unlikely that it’s going to happen. I’d also have to deal with the traveling from MN and finding accommodations and I wouldn’t have known about the rates until after I made the appointment, so I am doubly grateful that you talked about ALL of the details. Great for patients with cash to burn. Good for them. We’re just not getting the help we need.


    • yeah, I knew their hospital house was about $80 bucks just going myself and one other person but the other reason my costs were higher was that for EVERY clinic visit they insisted I bring TWO people, which pushes up the room rate which effing sucks & creates a scheduling nightmare every month that I didn’t want. Still, I couldn’t really find much under $100 a night even with medical discounts, plus usually something for parking included with that to push to 100+, so that’s why I lucked out & found something on AirBNB.
      But yeah….overall it’s disappointing. I didn’t burn the bridge just in case something drastically changes, but if they ever bother to call me back, I’m going to tell them why I didn’t reschedule. Basically, that I changed my mind about dual listing but also the hoops to jump through to just meet a doctor are a little ridiculous & made me have real reservations about the program & then also how aftercare is dealt with.


  4. I will say, they were fast with sending the lodging info. I didn’t have to pry it out of them like I did U of MD who never sent me anything.


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