← Return to Recently diagnosed with AL Amyloidosis: Any advice?

Discussion
Comment receiving replies
@loribmt

I want to encourage you to not lose hope. Going through chemo can have some side effects such as edema and it’s not unusual. However, if your mom is having any discomfort such as chest pains or difficulty breathing then it is a concern. Don’t hesitate to call the oncologist’s office any time if that’s the case. They would have a doctor on standby.

It’s important to get those final 4 tests done so Dr Gertz can complete his diagnosis and draw up a treatment plan. You’re concerned that WVU won’t be able to complete those. Most hospitals will find a lab that can run the tests if not available in house at the local hospital.
However, you can also contact Dr Gertz’s office and let them know. I’ve had tests that our local hospital couldn’t complete because some test require very sophisticated equipment and were sent to Mayo for processing, or to another lab in a larger city. It is done all the time.
There are occasions where Mayo sends specialty boxes to your home, which you then take to the local oncologist office or whomever takes the blood work. Then it’s overnighted to Mayo for processing. That was a weekly experience for me.
I know how frightening this can be. My daughter went through it when I was going dealing with my cancer treatment. We had some long talks and worked through the fear. It is what it is and we both felt my time wasn’t up yet. I don’t believe it’s your mother’s time either.

I think a good place to begin is to call the WVU doctor on Monday to see if they can find out if those tests can be run for your mom. You need a definitive answer. You can also then contact Dr Gertz’s office through the portal or calling the number provided on the consult sheets to get further instructions. I know for a fact that Mayo will do everything in their power to get this done for your mom so you can both move forward.
It’s important for you to try and decompress to relieve your stress. A good little exercise is to imagine you’re drawing a box with your finger. Draw up, counting to 4. Draw across, holding for the count of 4…then down the other side for 4, and hold for for as you go across. Repeat that box 4 or 5 times. It has an amazing ability to calm the breathing and clenched tummy muscles.
I’m here anytime you need me. If you could though, to make sure I get notifications, please click the blue reply button so your message is typed in the box of to what I’ve written. Then I get a notice. ☺️
I hope you can get some sleep tonight. Let me know what you decide to do. Hugs.

Jump to this post


Replies to "I want to encourage you to not lose hope. Going through chemo can have some side..."

At my moms appointment at WVU (our local hospital) her doc said he would find out about the tests and let her know. But there’s zero sense of urgency it’s so aggravating. I’m going to call Mayo again Monday most definitely . Thank you for the decompression exercises. It’s just a lonely feeling and sad. I don’t want her to know I’m sad , I’m being strong for her.