Sunday, July 7, 2013

When it's your lungs

A lot of people believe that once you have a bone marrow transplant, your major health issues will be resolved. No more cancer means no more problems. These people are horribly misinformed.

I'm currently struggling with graft versus host disease of the lungs. Again. Things have been gradually getting worse. I've begun to feel a familiar pressure in my abdomen on the upper right side, just under my rib cage. It's similar to the feeling I had when graft versus host disease began to affect my liver.

I emailed my transplant team about my inability to breathe on Thursday. On Friday, Chris and I began playing phone tag with my various nurses and PAs. My transplant doctor was out of the country. My local oncologist was out of town. The doctor covering for him would be out of the office over the weekend.

Fortunately, my transplant doctor's PA is a champ. Long story short, I narrowly avoided being put on a daily dose of 120mg of prednisone by the doctor covering for my transplant doctor. He's never treated me and so he's not familiar with my history involving steroids. I'm hyper-sensitive. It can be a problem. My PA managed to get through to Dr. K. who will see me when she returns to clinic on Wednesday. I will have tests. Experience tells me that there will be chest x-rays and CT scans. I will probably need lung and liver biopsies. I'm not thrilled by the prospect of 2 more surgeries, but I understand that the specialists need to see what's going on in my body.

I just want to be able to breathe again. Scratch that. I want to be able to walk and talk and breathe without feeling like I've run a marathon after taking 20 steps.

I probably won't be up to blogging on Wednesday, but I will update throughout the day on twitter.

11 comments:

lisa adams said...

I hate when you are having trouble. Nothing more important than breathing... it colors every second of every day. I will follow along and hope you can find some relief. I am learning so much from you about GvHD and all of the nasty lifelong issues it causes. Thank you for the update. Sending love.

LPC said...

So sorry. I also hope you can find some relief. Some breathing room.

Ronni Gordon said...

So sorry to hear about this. You know from reading PJ and me that to one degree or another things keep happening to us too. I was one of those people who thought that after the transplant we were done. Who knew? You are so strong. I know it is hard, but we all have to see these things as just another bump in the road. 120 mgs of prednisone? Gheesh. I'm glad you dodged that one!

The Plush Gourmet said...

Badger Jenkins kisses.... anything that makes you smile :)

stacyreno said...

Oh, honey. Prayers & love to you. So, so much of both.

PJ said...

Your strength facing this beyond-challenging disease is what makes you my hero. Sending healing thoughts your way.

Jody said...

Sending you love - can I come see you at MDA?

xxoo

LacubriousOne said...

It's only thru stories like yours that we can understand that a cure for cancer can also mean lifelong management of side effects. Thanks for sharing the details and hope to hear good news soon from the docs on a solution. Sending positive thoughts your way!

Vicente said...

Thank goodness for the PA! Sending my love and goodness to you this week, and always. xxV

stephanie brandt chivers said...

:( my heart just aches for you. All my best!

Tiffany Thielke Lesmeister said...

Unfortunately I can relate. People have a hard time understanding unless they have been through something similar. But I am praying and hoping that you do not have any permanent or life long lung damage when everything gets figured out.