Careful, She's Headstrong

Yesterday, the nurse brings me a neupogen injection. I have never heard of this before, and she assures me it is the same as epogen, an injection I've had plenty of times to increase production of red blood cells.

A few hours post neupogen, I have intense bone pain thought my upper body, itching, stomach pain and headache. I am unable to sleep or even lay still. At 3 am, I let the nurse know about the pain and that I believe the neupogen is potentially the cause.  The doctor prescribes me dilaudid, a morphine derivative that renders me useless and allows my body to sink into the hospital bed. I gratefully sleep for almost three hours.

When I wake up, I look up neupogen.  And now, I get it. Neupogen is a catalyst to increase white blood cell production by stimulating bone marrow(which produces WBC). A side effect of this drug can be bone pain. I'm frustrated that I was given(and accepted)medication I didn't understand. The resident assures me I won't get it again.

Dr Wali comes by for morning rounds and fills me in some. The whole time I feel like he's talking to the residents and I am just listening to plans for MY treatment.  He's ready to leave. "Wait," I interrupt.  "I need to be sure I understand."

I rehash what I think I heard. 

• WBC and RBC are not responding as he has hoped. They are both still unhealthily low. WBC, for me, needs to be greater than 2.5...currently 1.8.  Without adequate WBC, I will be unable to fight infections. 
• My immunosuppressant Prograf level is still 5.3, and has remained in the 5's for past 2 months despite drastically increasing Prograf medication.  
• My GFR(percentage of kidney functioning/eliminating toxins) has decreased from 84% in Jan to 41% currently.  
• My creatinine level, in the same time span, has increased from 0.8 to 1.4(trending in WRONG direction).  
• Despite regular blood thinning treatment, my INR(measures "thinness" of blood) is not increasing and remains below therapeutic level.

Dr Wali believes this combination is worrisome and he suspects graft rejection. He prescribes a biopsy later today to confirm. "See?" Dr Wali grins. "You've got it! You are a good doctor." 

I smile/grimace, equally grateful to amuse him and still concerned at the position in which I now find myself. The doctors leave, and I try to get my head wrapped around the new information. It's not the best news I've received, yet it sounds like he's being proactive.

More unknown medicines come my way. I have to take extra prednisone via IV. The nurse can't exactly tell me why but I do know it enhances immunosuppressant levels and I acquiesce.

Later, she brings a coagulant(all this time I've been taking anti-coagulants to thin my blood). I am confused. A resident explains to me it's preparation for my biopsy to help decrease post-biopsy bleeding...fine... Lab results later show my blood doesn't respond quickly enough(ie still thinner that she'd like) and my biopsy is postponed to the next day.


The nurse returns with a second dose of neupogen. I will not give in on this one, letting her now I refuse to take it and why. She shakes her head and let's me know she will be forced to report this to my doctor. I agree, this is a good idea.

Right before bedtime, the nurse brings in a Solu-Medrol drip. I know I did NOT discuss this at rounds this morning. For me, Solu-Medrol has been prescribed to treat EXISTING rejection. The nurse is not any help in understanding. She reads the doctor's notes and decides its being administered to RAISE my creatinine level(read as being administered to DECREASE my kidney functioning). Even she admits it doesn't make sense. The covering resident, unfamiliar with my case, suggests to the nurse that I take it now and ask my doctor in the morning.

Hmmm. I am torn. Maybe it's a good idea to jump start rejection treatment. I've had Solu-Medrol before and didn't experience negative side effects. It's one dose. I'm in the hospital and want to be better as soon as possible...and yet, I want to understand why I'm being administered medications beforehand. Ugh.

"So, will you take it?" the nurse, with waning patience, wants an answer. Finally, I allow the drip, although not 100% sure. I will get more details from my doctor in the am. 

I am displeased with the lack of reliable communication. I am not a patient who is able to simply trust that the right decisions are being made for me without adequate information. With adequate information, like pros/cons and previous success rates, I can make informed decisions and be proactive in my own health care. Uninformed, I feel defensive, protective and uncooperative.

At change of nurse's shift later this morning, I am laying down, resting but not fully asleep. The departing nurse shares what she knows with the nurse starting her shift. As they walk away, the departing nurse's voice drops to a whisper.

"Be careful, she's headstrong."
It's a fair assessment. :)

Re-Focus

I went to the doctor last week.  It seemed uneventful, but afterwards I was left confused.

First,  I had an ultrasound to check status on my blood clot.  As always, the first tech needed to get it reviewed after taking forever to get the first set of pics.  He came back with a second tech and ultimately brought the radiologist in.  The radiologist said he believes the clot is not in the artery going to my pancreas(as was previously concluded) and the the clot is still the same size.  I understand the same size part(not good news), but I don't get the "not in the artery" part.  I'll need to consult my doctor.

At my clinic appointment, my nurse reviews medication and expresses concern over my recent weight gain.  I had first thought very little of it, but she's right, its extreme.  I have gained 12 pounds in two weeks...ugh.  She tells me to look in the mirror and notice that my face is swollen and round; I have "moon face." Linda explains to me that these are side effects of the prednisone I am taking.  I'm still not too concerned, thinking I'll be able to exercise any additional weight off.

Dr Jonnson, who I met once while hospitalized,  comes in, asks a few questions, and basically I am ok...Yay!  He lowers my coumadin dose because my blood is now getting too thin. Everything else is stable.  I ask him about the blood clot.  He tells me not to worry - if its not in the artery, it wont affect my pancreas and kidney, which are functioning great.  He tells me to schedule an appointment with my nephrologist next month and that I am beginning the transition from the transplant clinic back to my nephrologist.  "Merry Christmas," he says.  "Come back in three months."

Three months?  I don't feel ready to move back to my nephrologist.  I am still paranoid each time I get my blood drawn that they're going to find something that puts me back in the hospital. I breath in his statement and realize its probably good news.  It means I am improving.  Dr Jonnson leaves.

Linda asks me if I have more questions.  I do...what about the clot? I'm wondering if its not in the artery, where is it? Linda explains to me its therefore in a vein. Ummm...I remember reading that the risk of a venous clot is that it can break loose, return to the heart and cause a pulmonary embolism.  I am confused as to why the doctor said not to worry.  Linda explains to me that if it doesn't affect the transplanted organs, its not a big concern to the transplant doctor.

Wow...I'd like to avoid a blood clot blocking blood flow to my heart or lungs.  Good news is that, despite a lot of coumadin, the clot hasn't decreased or moved yet.   I need more answers.  Linda promises to get me some more information.

The next day, Linda calls me to let me know she went over my lab results with Dr Wali, who is much more familiar with me, and he wants me to come back in three weeks and to continue weekly labs.  I feel reassured that he's going to look over everything.

When I get home, I look up venous blood clots and side effects of prednisone.  I don't find anything definitive on clots and the prednisone info is disappointing.  Essentially, not much can be done about the weight gain and will probably take a long time to lose it after coming off the medication.  I am disappointed.  I have worked hard to get where I am physically and I feel it slipping away.  

Hmmm. Now I know what my New Years resolution is. I need to make a healthy, regular exercise program a priority. I need to focus on the fact that my lab results are good, my kidney and pancreas are working great and I am way healthier than I was before. 

I smile a pudgy, swollen cheek, purposeful smile. 

I will control what I can and let go of what I can't.