July 30, 2020 at 9:25 am #26478
I had a new test this week, which was initially scheduled last week. Because of some insurance issues, the test was canceled just before the procedure. My hubby and I discussed this and decided to pay and have the test down while insurance is doing their thing.
So, I did finally have the test done on Tuesday afternoon. Now, the waiting game. The waiting for test results can be so nerve-wracking, don’t you agree? The doctor said it would be 2-3 weeks before I would hear back. I am hopeful that after about a week that he will have a cancellation and can call me to discuss the results and plan of care from there.
I have always liked my PH doctors as I talk with them just after my heart cath Maybe I am spoiled. Unfortunately, this is a new Neurologist. How do you handle the nerve-wracking waiting for test results?
July 30, 2020 at 3:15 pm #26496
You have had a rough month @jenc. I hope the results of this test will offer helpful information that will inspire a plan to get you feeling better. The wait for results is horrible. Movies and reading have helped me pass time in the past. It offers a slight distraction but it’s hard not to let the worry linger.
I was told the neurology department at my son’s hospital is booked up for many months. For that reason he is going to meet with a headache clinic instead. I wonder if neurology is that busy at most places and that’s why results will take 2-3 weeks. Just a thought.
I agree, it’s nice how PH doctors usually discuss the heart cath right after the procedure. They do the same for Cullen’s bronhoscopy, cath’s and biopsies post-transplant. It would be nice if that were the case for everything.
July 31, 2020 at 3:37 pm #26520
Thank you for your kind words and support @colleensteele. Yes, the neurologist is busy and will continue to be, I am sure. He had told me on my virtual visit with him that he takes at least a week to go over the test with a “fine-tooth comb,” which I can respect. But 2-3 weeks is absurd, and I am hoping that once he has time to review it to his satisfaction, that he will have a cancellation and I will get in sooner. This neurologist has a subspeciality in seizure disorders that no one in our area has. This may be why the delay, too.
REading and funny movies help. I am hoping to take a drive with Manny by the beach tomorrow in an area that no one usually goes to. If the weather permits, that way we can drive on the beach, and I can at least put my feet in the sand and the water and listen to the waves. I love the water.
July 31, 2020 at 4:33 pm #26523
Oh my gosh Jen, your plans for tomorrow sound so lovely! I hope the weather behaves so you can enjoy it.
August 11, 2020 at 9:27 am #26666
I wanted to update and say that I continue to wait, not as patient as I should, but waiting nonetheless. I am restless, and my anxiety has been getting the best of me some days. I try to take time outs to sit out back, deep breathing, and to listen to calm relaxation music.
I also call the doctor’s office at least weekly to see if they have any cancellations. Is anyone else waiting on test results at this time? If so, what are they and how long have you been waiting?
@jimi, you cannot answer at your are the patient King, lol. JK, but I do admire your patience.
August 11, 2020 at 5:32 pm #26675Carol VolckmannParticipant
Jen, just now caught up with your last post with you waiting so patiently – not fair!!!! My heart goes out to you and Manny waiting and more waiting. I am so sorry you are going through this. You have a lot of folks praying for you and sending you very positive thoughts – me too with love!
August 12, 2020 at 3:12 pm #26700
Thanks so much for your kind words of encouragement and support, @cdvol3gmail-com. It is appreciated more than you know. The prayers I know are felt here in Texas. We will get through this, too.
I just called again and was told, no cancellations, so yes, we are still on for Monday evening as a follow-up. I am counting down and know it is all in God’s hands.
August 19, 2020 at 3:47 pm #26819
I just wanted to give a brief update. I did have the virtual follow up Monday afternoon. But, I did not learn as much as I had hoped from this test. Now, the Neuro is waiting for me to get him the CD of my MRI. He wants to compare and hopefully have some answers with that. But this is not planned for 3 weeks.
The positive is that I have not had any active seizures as far as we know since I came home, just tremors and other symptoms.
In the meantime, I am still working with Cigna to try and get this doctor covered. As y’all know, never a dull moment, but we keep on, one day at a time.
August 20, 2020 at 5:01 pm #26833
August 20, 2020 at 6:02 pm #26841
Our sweet @jenc has been so concerned about me and my son even though she has obviously been going through a lot herself. Jen, I’m so sorry the test hasn’t provided sufficient answers. You must feel so frustrated! Then to have insurance still delaying their support is ridiculous!
Is there anything we can do for you? Anything you need? Some way we can cheer you up? Please never hesitate to update us about what is going on with YOU! Big hugs to you from WA!
August 22, 2020 at 10:33 am #26880
Thanks for your support, @mamabear007. I am hanging in there. I hope that you and your family are staying safe. I am sure that you are keeping busy.
@colleensteele, you are so kind and thoughtful, but I am alright.Y’all always support here, and the forums are one of the best parts of my day. It is like catching up with old friends. <3
I am not in the hospital. I'm at my home in my comfy PJs, sipping my morning coffee. So, life is good. I hope and pray that you will get home today.
Also, I was so excited when my MRI CD came already, and I had Manny drop it off at the doctor's office. That is a big win!
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