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. :)

Definitive but Disappointing

Dr Wali and team returned late yesterday afternoon. He tried to keep his news light. "What do you think the biopsy showed?"

I didn't blink. "No rejection." I was certain.

"You are strong and positive." He smiled and shook his head. "I'm sorry, we lost the bet. The biopsy showed signs of rejection."

Huh? I was not prepared for this kick to the gut. I was counting on Dr Wali's opinion to be the winning one. It took me a few seconds to catch my breath. Deflated, I asked him how substantial the rejection was. He explained it presented as mild in the kidney biopsy, but pointed out that the rejection found in the kidney would not be as substantial as what was present in the pancreas because that's where it started. 

He went on. They would continue the Solu-Medrol steroid to suppress my immune system from further rejection. I would need 5 full treatments and should be able to go home by Saturday. They would also continue the Heparin blood thinner to break down the blood clot near my pancreas.

"Why don't you just give me the super strong steroid, the Thymoglobulin, so it removes all chance of rejection?" I wanted to eliminate any possibility of the rejection surfacing again.

Dr Wali told me that strong of a steroid would compromise my immune system too drastically and I would be at undue risk for infection, like pneumonia, a cold or just about anything. He said the rejection would have to be much more substantial to merit that sort of treatment and the potential risks that went with it. 

Hmmm, good point. I quieted, unable to come up with more questions.  They would keep checking my blood results every couple hours and adjusting my steroid and blood thinner regimen based on the lab work over the next few days.  There's a balance that had to be maintained to ensure improvement. 

I thought of an important question. "When should I expect the rejection signs to be gone? How will we know for sure?"

The doctor couldn't give me a specific answer but assured me they wouldn't send me home until my lab results indicated substantial improvement and that I was only trending in a positive direction. Once home, I will continue on oral blood thinner(Coumadin) and oral immunosuppressant steroid until all my lab results are back to safe levels and the risk for rejection is eliminated. He ventured that it would take a week or two, but not a month. The additional medications will be tapered off and not planned to be a long term treatment.

Dr Wali comes back this morning, and again it's not my favorite news. He lets me know my current lab results are going to keep me in the hospital at least until Sunday, not Saturday as originally planned. But he is still sure we are taking the correct course of action. 

My father-in-law just sent me an email, reminding me that 24 hours is not that long to wait. I guess...it's just one more day in the hospital. And lots more blood draws. I look down at my arm, wondering if my poor veins can take another day, now another two days, of this "therapy."

Again, I am stunned. And silent. And unsure how to handle the news. It could be worse, but I am disappointed. I'm not ready to share the news with anyone and I sit on it for a little while, just taking it in and feeling it out. I try to rationalize that 80% success rate is not bad, but my logical brain reminds me that no rejection(ie 100% success rate) is a much more appealing situation, and it's what I expected to hear.

I'm concerned about the side effects: the steroid causes high blood sugars and I'm once again taking insulin to keep it down; it also causes high blood pressure and they're giving me Norvasc to keep it down. More medical treatment to treat medical treatment.  Because of the blood thinner, I need to be really careful and avoid getting cut for a while. I'm not that careful in general...

I take a deep breath and exhale slowly. 

So, another hurdle, and more WAITING.