a·plas·tic a·ne·mi·a/āˈplastik əˈnēmēə/

Noun: Deficiency of all types of blood cells caused by failure of bone marrow development

Tuesday, November 15, 2011

Day 100 Results!

My Day 100 results are back and everything is great!  My marrow is now 100% my brothers and there doesn't seem to be any complications.  My risk of GVHD is now decreased.  My counts were about the same as last week, which means they have stabilized.  The doctors are going to monitor me weekly to see if they stay steady, if not, and if they decline, they are going to do more tests.  My liver function tests are much better too!  They took me off of my antibiotic last week and that seems to have really helped with the liver function tests.  My kidney tests are good too.  My iron is still really high (from all the red blood cell transfusions prior to the transplant).  I am going to have to wait 3-6 more months before we can do anything about that.  The only way to get rid of the extra iron is to do phlebotomies (remove blood). 

Though this is all great news, but I felt the best about telling the doctor how I felt.  I asked Dr. McGuirk (the main doctor that I have been seeing) last week to do me a favor and to please not have Dr. Ganguly review my Day 100 results with me today.  First thing this morning, who walks in to my room, but Dr. Ganguly.  Man how I was angry!  I dislike this doctor because he talks "at you" instead of to you, he replies to questions with "because I am the doctor", his bedside manner is awful, he treats you like you are part of an assembly line, etc.  I could go on forever about how I dislike him, including how he wrote in his dictation on my very first visit that he did a complete physical exam, when he didn't.  So today I asked him to stop talking down to me an that I wasn't stupid.  He denied that he was doing it, so when he continued to do it, I pointed it out to him.  Of course he didn't like it, but he needed to know.  My mother-in-law said I was lucky he didn't fire me.  I responded to this statement with, "He's lucky I haven't fired him!"  So after my mother-in-law told me this, I thought it would be good to talk to my therapist about it.  She was proud of me on every level.  She congratulated me for being my own self advocate.

To everyone out there that may not know me or may know me very well, my thinking about doctors is very different than most.  To me, doctors are no better than you or me.  They are not smarter than you or me.  They may be smarter than you or me when it comes to medicine, but everyone has their strengths, who's to say a doctor is smarter than an architect.  When I was a Clinical Research Associate, my job was to go to doctors offices and tell them what they were doing wrong.  I usually never had a problem with that.  Now the tables have turned and when it comes to my own doctors, I have trouble telling them how I feel about them, and trust me, I do NOT ever have a problem telling people what I think of them.  It is very important when you have a serious illness like this, for your doctor to know you, to know you personally, as well as medically.  My doctors at KU have NEVER taken the time to get to know me.  They don't understand my situation, they don't know what I am dealing with emotionally, mentally or physically.  Of course, there are always common denominators with all patients, but each person is an individual, with individual stories.  How can my doctors, who are all male, understand what it is like to be a new mother and living away from her husband and having limited help at home with the baby and dealing with post-partum depression.  Maybe if they would've taken the time to ask, they would have a better understanding of why I have an emotional outburst when I don't feel like anyone is listening to me.  So please, be your own self advocate.  It is ok to question your doctor and he/she should not make you feel bad about this.  You have the right to have your questions answered.  You have the right to understand why they are doing what they are doing.  I had a question while I was in the hospital about why they were giving me Methotrexate (a chemo drug) and what side effects I could expect.  Dr. McGuirk's answer was, "Its in the informed consent, we already went through this with you when you signed the consent (2 weeks prior).  If you have questions, you should read your consent form. You can expect things to get worse before they get better."  I was just absolutely LIVID about this!  I know that it is the doctors responsibility to answer these questions.  I was half out of it, if not completely sometimes, and it was MY responsibility to look something up, when he is suppose to know this stuff inside and out?!  And then he was surprised when I told him to get the hell out of my room.  What does he expect?!  And by the way, things didn't get worse before they got better.  So I may not be an expert on being a self advocate, but I try at every appointment to make sure that I understand completely and fully the reason why they are doing what they are doing.

Alright, enough about that.  I got cleared to go to my parents house, so I am going this weekend.  I also got permission to go back to Hawaii to visit my husband, though, I probably won't go because he is coming here next week for Thanksgiving!  I also got the ok to eat Chipotle, my favorite burrito place!  So that's what I had for lunch.  Overall, this day was awesome!  I feel like I am on top of the world and that I have kicked this aplastic anemia's butt!

Monday, November 14, 2011

Day 111

Today is the day that I get my Day 100 results.  I am still really nervous, but was able to distract myself this week, which kept me from becoming a raging worry wart.  I actually feel pretty good, like my counts are high.  Hopefully the gradual decline in my hemoglobin and red blood cells over the last month was just  a fluke.  Its 12:45 am and I am not a bit at all tired.  I have to get up in 5 hours to go to the doctors office. 

Wish me luck and say a prayer!

Tuesday, November 8, 2011

Day 104 - Good News? Bad News? I'm Confused!

Today was my first visit after my bone marrow biopsy.  Dr. McGuirk came is and was all smiles with good news.  He said the preliminary results were looking good.  My cellularity is good (that is the amount of cells in my bone marrow), my T-cells are higher than he would expect (white blood cells that help with immunity and stuff), my liver ultrasound looked great (no more fatty, enlarged liver).  I asked him about my counts being low and my bilirubin and LDH (liver tests) being high.  He thinks it is the medication I'm on.  We won't know for sure until the final results come back and the big picture is evaluated.  They are taking me off the Dapsone (antibiotic) and going to an inhalation antibiotic.  My hemoglobin was 9.8 and my RBCs were 2.9.  They haven't been that low since before I left the hospital.  ***Sigh***  I just feel like I can't ever get a straight answer from anyone.  I want to be hopeful that it is just my medication, but I've been on the same dose and same kind of antibiotic since August.  I don't want to set myself up for a huge let down next week.

After I got back from my appointment, I noticed Kellan had a runny nose and watery eyes.  Called his pediatrician to get an appointment right away because the last thing I want to do is get sick myself.  So he has a cold and I have to stay away from him for a day and a half or until his symptoms subside :(  And he does NOT like that snot sucker upper thingy!

I had a long day and I'm already super tired from my low hemoglobin.  I'm sure it is going to be a long night with Kellan as well.  Even though I can't touch him, his crib is in my room and so I'm going to wake up everytime he cries.  I need a nanny!  Just kidding :)

Thank you for all of your thoughts and prayers!

Saturday, November 5, 2011

Day 100!

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.

Wednesday, November 2, 2011

Day 98!

Only 2 more days!  Friday is the day that all of my Day 100 testing will be done.  They will be doing and abdominal ultrasound, labs, bone marrow biopsy and breathing tests.  Please pray that these results will all come back good so my family can be reunited.  There is a downside though, I've been waiting for Day 100 like the honey badger stalks snakes, but unfortunately, I won't be getting my results until the 15th :(  *Deep breath* I can wait 11 more days, I've waited this long, whats another week and a half.

I had an appointment on Tuesday and I met with the NP.  I feel so much more comfortable talking to the NPs than the doctors.  Anyway, I was able to express alot of my concerns about GVHD.  Unfortunately, there is no way to be certain any of my symptoms or labs tests or physical signs are GVHD.  By that, I mean, my liver tests were even higher than last week.  If it is GVHD, most likely they are going to put me on steroids and I do NOT want that at all.  Steroids make you fat.  They also increase your blood glucose and prolonged high blood glucose can lead to diabetes.  My blood glucose is already high...which could be a side effect of the Tacrolimus (anti-rejection/immunosuppressant).  I think most of these unanswered questions will be answered on the 15th though, at least I hope.

My husband is going to try and take convalescent leave between now and his next orders.  I really hope he can, I have been really tired lately and my back and head hurt everyday.  (Again, I was told it was probably a side effect of the Tacrolimus).  I just want my family to be back together again.

For now, good night.  Thanks for continuing to pray for me and my family.  The hardest part of this journey is coming to a close, but there is still a long road ahead.