Tuesday, June 23, 2009

Second and Third Opinions, IVs, Stress, etc.

After Gess was discharged I contacted two other CF Clinics--Denver and UNC--to see if the doctors have any other ideas about the bleeding and also to see about a general second or third opinion.  The nurse coordinator from UNC contacted me immediately. She is SO great!!  She is going to talk with the CF docs and going to see about the IR doctors taking a look at Gess's last BAE.  I think that this might be our best option regarding embolizations.   

The nurse coordinator from Denver also got back to me and told me that Dr. Nick wanted to talk to me directly.  I talked to him yesterday about the situation.  He said that they don't do a lot of embolizations at Denver and that there "go to" IR doctor left, so now if they need a procedure, they just use whomever is on call.  He said that embolizations are really only good for life-saving situations.  It was nice to talk to him and get his perspective on things.  We may still go to Denver for a consultation about general CF stuff, but it doesn't look like anything specific will happen with the bleeding issue.

This whole bleeding thing is so frustrating and we really do seem to be running out of options. 

On top of this, Gess started to feel like he had an exacerbation coming on.  So...back on IVs.  He is doing tobra once a day and ceftaze three times a day.  He did go back to work too, which is good in a way.  I think that being home is really mentally difficult on him.  So...I think that finding the balance between work and rest is going to be key.

With all of this, I am just extremely stressed. I ended up taking an unplanned nap for a few hours yesterday and then slept until 10 am this morning.  I think that my body is just exhausted.  I struggle with what to do with my workouts since I know that exercise is good, but too much can be stressful on the body too.  I have yet to start looking for a job, so that freaks me out a bit too.  I am trying not to get too worked up, but if you know me you realize that is extremely difficult for me.  So, right now it is one day at a time.  I am sitting in a Starbucks catching up on blogs and email while waiting for my car to be serviced.  I have a massage scheduled for tomorrow.  I am making lists.  I am taking deep breaths.  


RunSickboyRun.com said...

Well I know that University Medical Center in Tucson, AZ is not afraid to do embolizations. They do have minimum "requirements" to be embolized though. You have to cough up at least 1/2 cup of blood for 3 days in a row.

I hope you guys get some things figured out.


Katey said...

Yea, the University of Alabama at Birmingham isn't afraid to do them either. I know multiple CF patients who have had them done. I'm praying that you get everything worked out! And that Gess feels better.

CowTown said...

Well, I'm happy to hear that you're signed up for a massage tomorrow! Yay!

I'm glad to hear that the UNC nurse was so responsive and helped you out on the phone as much as she did. You must be exhausted! I'm not surprised, you're juggling oh so much right now, it's amazing.

Hugs Lisa.

Amy said...

I'm glad both clinics called and were able to help you a bit in some way. I have you guys on my prayers list :)

jordysmom said...

Glad to hear you are getting some feedback. I hope someone comes up with some ideas.

Hope working helps Gess feel better at least mentally. Enjoy that massage.


Tina said...

Lisa I'm sorry to hear G's bleeding issue is such a bitch. I'm so proud of you for being such a wonderful advocate for your husband and for doing what you need to to take care of yourself as well. Thinking of you guys often.