Friday, January 15, 2010

Bronchoscopy number 486

...Ok, not really, but sometimes it feels like it. I have had many of them since my lung transplant over 8 years ago, but not quite that many (I don't think).

I went to Duke yesterday for another bronchoscopy (biopsy of lungs) and a visit with my lung transplant pulmonologist. I had some acute rejection back in October and did some IV steroids and a prednisone taper for it. I went for a follow-up bronch in November, and everything came back clear. No rejection or infection. This was to be my last follow-up bronch due to the rejection, and then I would just go back to my yearly bronch like normal.

Before my bronch yesterday, I had blood work, pulmonary function tests (pfts), and an xray done. My pulmonary function tests were down quite a bit since my last visit. My total lung capacity was only down about 4%, but the number that indicates how your smaller airways are working was down 17%. I had my bronch, and just like last time, had an allergic reaction to something. I believe they have switched the medication that numbs the back of your throat, because the meds they use to sedate me are still the same. Anyway, on top of the sedating medications, I had to get 50 ml of IV benadryl. The rest of the day is a little blurry, because of all of that.

After the bronch, I saw my pulmonologist, and he explains to me that my blood work shows that I have bone marrow suppression. This means that my blood cell counts are really low... both red and white. I'm even more anemic than I was at my nephrology appointment last week, and my white cells are down even lower too. My pulmonologist believes that the combination of two of my medications are doing this, so he has discontinued one of them. It is the medicine that prevents me from getting CMV or cytomegalovirus. Because I was CMV negative at the time of my lung transplant and my mom was CMV positive (in other words, she had the virus sometime in her life, and I hadn't), it put me at risk of developing the virus. For someone healthy, this doesn't mean much, but for someone immunosuppressed, it can cause a lot of problems if you get this virus in your lungs or intestines. I have had it in my blood twice since transplant, but it was treated with an IV medication. Now that I won't be on the medication to prevent it, there will be a chance of me getting it again, but that's the chance my doctor is willing to take, because bone marrow suppression can be much worse and can keep me from fighting off ANY infection. The other med that was aiding to this suppression is one of my anti-rejection medications called Cellcept, and especially because of my recent rejection, he did not want to discontinue that one. He is hoping that my counts will be up in a few weeks.

Now concerning my smaller airways and my lower pfts, he is thinking we might see some rejection or infection on this bronchoscopy. The results will not be back until Monday unfortunately. If it is a negative bronchoscopy (in other words, nothing shows up), then he thinks this is probably just continuation of my chronic rejection, which started back in 2007. Chronic rejection can progress at different rates, and differs from acute rejection in that acute rejection is usually taken care of with a round of steroids, whereas chronic rejection is very unpredictable and can be slowed down, but not really stopped for good. You can have a sudden drop in your lung function and then stabilize for years, or it can be fast and you can lose all lung function over a period of months. My chronic rejection has previously been treated with Cellcept and Azithromycin. That seemed to stabilize everything. Now that my lung function is dropping again, if the doctor suspects it's the chronic rejection doing it, he will decide on a course of treatment. I asked him yesterday what that might be, and he said he won't make that decision until my bronch results come back.

This is just going to be a waiting game to see if my blood counts come back up, and to see what my lung function does. I recently started exercising again, and it seems that every time I start to get in shape again, something sets me back. I'm going to attribute that to being allergic to exercise!!! :) Just kidding... I won't let any of this stop me from continuing my exercise regimen. I will post again on Monday after I get the results. Love to all!


Heidi said...

Boy, way to hit you with 2 major things at once. I am sorry it did not go so well. Will be praying for good bronch results. The big CR is our biggest fear this far out. Hang in there! XOXO

Alicia said...

Wow, that's overwhelming for me to read, so I know it must be a lot to experience. How are you feeling physically after yesterday?

Christy said...

I know Heidi... hate even saying those words. XO

Alicia, I'm coughing up a lot of blood. The doctor that has done the past 2 bronchs is a little rougher than my normal doc who does them. I seem to bleed more. I slept really hard and long last night, so feeling pretty good today. Thanks. :)

Juliet Page said...

I hope the switching and mixing up the meds help get things stabilized for you!!

Nicole said...

Praying for good results! Love you! XOXO

OceanDesert said...

Funny that's the same thing my dr at UCLA told me back in June when they 'suspected CR' 'wait for the bronch'.. ugh. it's so mysterious of a 'diagnosis.' You've done so well, Christy.. I will only keep picturing you beating the odds!

hugs cyster!

Lisa J. said...

Praying that your results are negative!

Katey said... after posting on your most recent post..i feel a little stupid for not reading this first...sorry. I knew you had already been through the chronic ignore that part on the comment post...sorry! Praying they can figure something out to make your PFT's better and for you to feel better.

My WBC is always extremely low and has been for the last couple of years...they can't seem to get it back up. And I think this is one of the reason's I have been getting sick more frequently. However, they aren't willing to remove an immunosuppresent (even though i'm already on 4 including prednisone). Have your doctors ever mentioned doing the photopheresis???