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Grrrrrrrr

Forums General Melanoma Community Grrrrrrrr

  • Post
    mrsaxde
    Participant

      Up until now I've had many good things to say about NIH. But they really irritated me today.

      At my last follow up in September they set up my next scans the same way they had been doing it. Brain MRI and chest CT one day in the late morning. Abdomen and pelvis MRI the next evening, so there would be at least 24 hours between contrast injections.

      I get over there today, get my blood work done, have a little breakfast and hang out in the atrium for a while, then head for my MRI. After I get checked in the woman at the desk says "You're not having contrast today, so you don't need an IV." I wasn't sure I had heard her right — I always get contrast. So I didn't ask about it.

      Then the tech came to get me. She said, "You're not having contrast. That's very unusual. Do you know why? Are your kidneys ok?" I had already received my blood work results and my kidney functions were fine. "I'll double check upstairs," she said. A couple of minutes later she came back and said, "Nope. No contrast today. And none tomorrow either."

      I've been trying to find out why, but my doctor hasn't answered me yet. I don't know whether this was the way it was planned at the last follow up and no one told me, or if something changed in the meantime. All I know is that if there's no contrast involved I could have had all my scans on one day and saved a 220 mile round trip.

      I don't know if they'll say I'm still stable when I see the docs on Thursday. I suspect they won't. The nodule below my navel, which they said has "been there," has gotten bigger and is visible under my skin. I call it my "baby bump." I've also had increasing shortness of breath, a mostly dry cough, and for about 2 weeks now some mild to moderate discomfort toward the middle and bottom of my right ribcage when I inhale. I'm ready to go back to Dr. Sharfman, and maybe make a trip to NY to see Dr. Weber and see what they think. I've only dealt with NIH since this spring and I think it's time to hear from another expert or two that I have access to.

      -Bill

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        Bubbles
        Participant

          Oh, Bill.  I am so sorry!!  Craziness like that is infuriating!!!  Gonna keep fingers crossed that you have a cold that gets better super quick and the scans are clear!!!  BUT….you know I think the world of the Wizard!!!  c

            mrsaxde
            Participant

              I have had a cold that I caught when I went out to help coach our last soccer game of the season in a warm drizzle three weeks ago. I wound up at the walk in care after that and left after a chest x-ray in which the radiologist said he saw no significant changes when comparing it to the CT I had at NIH back in July. (I’ve found NIH to be so-so on getting my scans to my other docs and my local oncologist/hospital didn’t seem to get my September results.) Maybe it is the cold hanging on a bit. The doc gave me an albuterol inhaler and that has helped my breathing. Maybe these old compromised air sacks are just having a hard time clearing up.

              I’m ready to fuss about this contrast snafu on Thursday. I emailed my clinical fellow while I was there today and as of yet have no reply. My old fellow, Dr. Shindorf, moved on to another area back in July. She always answered me within a day. Unless for some reason Dr. Seitter’s email is wrong on the NIH site I’ve yet to get a response from her to either of the two emails I have sent her. NIH has treated me good but the ball seems to be getting dropped lately.

              RichInLife2
              Participant

                Fuss away, Bill. Perhaps my biggest pet peeve right now with my various health care providers is lack of communication, both with me and with each other. I won't go on a rant, but I feel like I have to manage both my health and them. I wish it wasn't the case, but there it is. Good luck!

                 

                mrsaxde
                Participant

                  Yes, these days a patient has to be his/her own advocate. My wife is an RN and even she says that. What amazes me is that you have to follow up on things you expect to be automatic. Like my scan results, for example. I filled out release forms to have my scan pictures and reports sent from NIH to Dr. Sharfman at Hopkins and also to the cancer center here at home. Back in the summer Dr. Sharfman's research nurse told me he hadn't received anything, and when a chest cold landed me at the walk in care several weeks ago and got me a chest x-ray, the radiologist here commented he was comparing the x-ray to CT images from July. I had another set of scans done in early September that should have been sent to them.

                mrsaxde
                Participant

                  I did get a reply from Dr. Seitter this evening, and it was as I suspected. I should have had contrast. Somebody in the chain screwed up. Fortunately I don't have to have the scans redone. She said they were able to see all they needed to see without contrast. Although that was just the brain scan, since I was having the abdomen and pelvis scans done when she sent the email.

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