Yeah! I finally made it! Though it wasn't as exciting as I thought it would be. I got an ultrasound on my liver and the tech said that it wasn't fatty or enlarged like last time. I also got lab work done. The tests that come back immediately were not so good. My WBC, RBC, HGB are still low. The RBC and HGB dropped from last week. The WBC stayed the same. In addition, my liver tests were high. My bilirubin was almost 2x the upper limit of normal, which is really bad. Also, my lactic dehydrogenase was high.
My interpretation: The breakdown of red cells will cause your hemoglobin to decrease. When red blood cells break down, they are filtered through your liver and will cause your bilirubin to rise. When your bilirubin rises, your urine turns dark. Thus, this fits the definition of PNH. So since I have all the symptoms, I'm concerned that my PNH did not go away. Booo! And now I have to wait to Nov. 15 to find out, because the last piece to that puzzle is the DNA confirmation, which they got from my biopsy.
My bone marrow biopsy went great! So much better than the last time! We just want good results to come back now.
Lastly I had pulmonary function tests done and the tech said that all of these were better than the last.
My next doctor appointment is on Tuesday. Hopefully they will be able to tell me at least a little something by then so that I don't drive myself crazy waiting for the 15th.
I never thought I would read the words "my Bone Marrow Biopsy went great!". If they told me they needed to do another one of those I would need a boat-load of ativan!
ReplyDeleteI hope that you get great results on Tuesday!
ReplyDeleteAshley, I never thought that I would say that a BMB would be great either. My first was not too bad. No drugs, no pain. I didn't know what to expect. The 2nd one was AWFUL! It took nearly 45 min. to an hour, dreadful pain the whole time. They gave me 1 ativan and later a fentanyl pop. This time was so much better than the last. They started me out with the ativan and fentanyl pop in the beginning. I also required the most experienced NP to do it. I have really hard bones, so I needed someone strong to do it. The first one was done by an Army Colonel, the 2nd was a petite 100 lb NP, the last was done by my favorite NP with 12 years of experience.
ReplyDeletei still don't like BMBs :(. my recent one was painful. i didn't like my recent Pulmonary test either; i felt suffocated and panicky. i know, i sounds whiny today but i'm happy that you made it! keep going!
ReplyDeleteHi! Thanks for sharing your story. I was diagnosed with Very Severe AA right after labor day. It's been 60 days since my ATG and my WBC is near normal but the RBC and plates are still transfusion dependent (every week or two). I don't have a sibling match so this is the preferred course for me but it is great to follow your journey in case I do need a BMT. Praying for you!
ReplyDelete@KJR - They told me my WBC would be the first to recover, then the RBC and then platelets. From what I've heard, you are on track! I hope for your sake that you never need a BMT, but if you do, I hope that I can provide insight, support and strength. Good luck to you and I will keep you in my thoughts!
ReplyDelete@Kayni - I don't like the PFTs either. If those made you feel panicky, don't ever get an MRI! :) We are going to be in the DC area in January, when we are both healthy enough, maybe we can get together and talk about Hawaii :)