Adjusting My Sails

Last week while I was busy concerning myself with the lack of medical news in my life, my inner voice was telling me to knock it off and just appreciate the calm.

I should have listened.

Thursday night my period starts. Ho-hum.

Really early Friday morning, like 2 am, I realize ridiculous and alarming amounts of blood are leaving my body. And it won't stop. I wait a couple hours, believing it will subside, but it only gets worse. I debate over how crucial this is, but ultimately decide it warrants a call to the on-call transplant coordinator.

She calls back quickly, and I explain the situation. She speaks calmly, but definitively.

"You need to go to the Emergency Room now. Do you have someone to drive you? If not, call an ambulance. You can not drive there."

 "Why not?"

"You're going to the ER to be sure you're not bleeding to death. You can't drive yourself."

Bleed to death? Whatever…but her words still haunt me getting into the car. I'm trying to maintain her calm and definitive nature as we rush to the hospital. I am starting to feel really tired and a little dizzy. I keep nodding off on the ride there.

Bright lights in the ER lobby wake me up quickly. I am assigned a bed almost immediately, no triage. A nurse asks basic history questions and I am cranky and impatient. I'm losing faith in the nurse, feeling like she's not really present when she asks me why I'm taking immunosuppressant drugs after I've told her I had a kidney/pancreas transplant 10 months ago.

A calm, accommodating doctor lets me know she's going to be drawing blood and running tests. I am adamant that they page my transplant team, as the coordinator instructed me to do. Despite her reassurance that she'll contact them once test results come back and she's done an exam, I don't feel comfortable with the soft-spoken ER doctor I don't know.  

She asks me if I'm light-headed, and I admit I am but I'm not sure if its psychosomatic, the fact that its 5am and I've been awake for 24 hours, or the loss of blood. We discuss medications some more and she suspects an interaction of ciproflaxin and coumadin are the cause of the excessive bleeding.

My faith in her is growing.

She completes the exam and test results come back quickly. I am healthy on paper, good H&H, white blood cell count and red blood cell count despite the blood loss. Nothing is out of line. They've ruled out any other reasons for the excessive blood loss. She has discussed the issue with Dr Piper and they've concluded I should stop taking both the cipro and the coumadin until Monday at least.

I really trust her by the time she says I get to go home.

Riding home, exhausted physically from no sleep and emotionally from the mini roller coaster ride the evening provided, I laugh at myself, thinking how silly my over-reaction was, and I imagine telling my daughter about today's late night/early morning adventure. 

My daughter in mind, I immediately realize there was no over-reacting. If this had happened to her, I wouldn't have waited a couple hours "just to see." I wouldn't have called for advice. I wouldn't have "whatever-ed" the possibility of bleeding to death. I would have rushed her in to be safe.

Gulp. I understand transplant is not only re-shaping my body, but my mind as well. Like all moms, it has always been instinctive for me to take care of my kids and back-burner my own health. Transplantees, even moms, don't have that option. I'm still new at this, and it's not as easy as it sounds.

                                         

I am adjusting my priorities. 

I am not de-prioritizing my kids. 

I am just re-prioritizing me.

No Surprises

George the resident never returned yesterday, so I save my questions for Dr Wali today. 

Dr Wali starts with good news - lab results confirm there is no infection. Yay!

The rate of blood in my urine has not yet slowed. Dr Wali lets me know the ultrasound says it is not caused by my previous biopsy, simply that the blood thinner I was taking has been making my blood too thin and causing excessive bleeding. It should slow down soon as the blood thinner was discontinued Sunday, and they are going to continue monitoring the thin-ness of my blood while I am here. Today's results are the thinnest yet; its time for scales to tip in other direction

My elevated white blood cell count and pancreas numbers are believed to be caused by more extensive rejection, and treatment has already begun for this. Dr Wali tells me we'll be able to gauge the effects of the treatment, the potent Thymoglobulin, within a few days of treatment.

"So, how long will I be on Thymoglobulin?"

Full rejection treatment takes five days in hospital. Hmmm, this is outside my plan, but I understand it's necessary, and I want all chance of rejection eliminated. 

Dr Wali assures me that my concerns about infection risk are unfounded at this point. I will continue taking preventative antibiotics and I will not have to take crazy precautions once home. I'm glad to hear I can eliminate my images of living life in a bubble. I will be able to interact with my kids and do normal activities, but will need to stay away from anyone sick. Fair enough.

The pancreatic blood clot has not increased or decreased in size. It remains unchanged. Everyone is hoping it would have decreased by now, especially with the previous blood thinning treatment. They will monitor(ultrasounds) while blood thinner not being used. 

Dr Wali ends his update, letting me know there is a slim chance the elevated levels are caused by blood flow issues alone, but no one on the team believes it. I appreciate his honesty. Based on lab work, this can be confirmed/eliminated within a few days of rejection treatment.

My dad asks a good question about if my experience is typical of kidney pancreas patients.

"No, her history is highly unusual," Dr Wali admits. "But not outside the realm of expectations."

None of his update surprises me. I am a little numb but it all seems logical and achievable at this point. I will be in the hospital for as long as necessary to eliminate the possibility of organ rejection. I am disappointed, but the course of action seems obvious. I don't forget, even with this road block and other speed bumps, I am lucky to have received my new organs and I appreciate everyone's proactive efforts.

I receive my pre-Thymoglobulin routine, some Tylenol and Benadryl to decrease the negative side effects of the steroid. The Benadryl makes me sleepy and I steal a four or five hour afternoon "nap." 

I pass the rest of the groggy evening, not really aware of time passing, but it does. 
Tomorrow, with it's own possibilities for challenges and opportunity, is coming.
And I'm feeling opportunistic.

"Be patient, young lady!"

Saturday passes mainly uneventfully. Dr Wali and George, a now familiar resident, update me.  My labs are remaining constant, not yet improving. I know this is better than getting worse, and they seem upbeat. I want to know why I am not improving faster. Dr Wali explains that the stress of the situation, the medications being used to treat it, AND the acute illness are all contributing. "Be patient, young lady!" (I'm pretty sure he calls me this to divert my path of questions, and keep me positive--it works, for now.) I still plan to go home Sunday.

George goes over more details. I will have to keep taking Coumadin and injection-based Heparin at home, still maybe four-six weeks, tapering off towards the end. Coumadin and Heparin are not that risky for me, but pose a more substantial risk to older patients. However, I am to avoid knife fights and contact sports while taking them. I can make this sacrifice.

I will continue taking the steroid prednisone for about 3 months, also tapering off.  I have heard some horror stories about prednisone, but George assures me I am at low risk.  I will continue to have high blood sugar, high blood pressure, weight gain and maybe some other minor stuff. Fair trade off to rid myself of organ rejection.

All in all, good news. I'm tired of the hospital. Being at home means multiple trips to the lab and hospital each week, but it also means sleeping in my bed when I want to and leading a more "normal" (to me) existence. Hooray for Sunday!

Saturday night comes and the nurse lets me know I need to switch rooms to consolidate patients. We load up in a wheelchair and I wait outside the room I'm scheduled to go in. I am taken aback when what feels like a clown car full of people, including a sneezing teenager and a baby, are making their way out of my soon-to-be new home. I laugh as I watch them load up the stroller, blankets, jackets and all the other stuff required to navigate a big family. I close my eyes, imagining them tripping over themselves to get out, with their red clown noses, spotted hats and Ronald McDonald shoes. At this point, I realize how much I do feel like an organ transplant patient; there are a lot of potential threats to my health pouring out of the room.

The dad lets the nurse know they are cleaning up their stuff off the spare bed, which will be mine in a few minutes. Ugh. I have mixed feelings on this situation. They are a cute clown family and I do not want to offend anyone, but I am on immunosuppressant drugs, I can't see my own children because of the fear of kid-germ exposure, and I really want to avoid any potential risk at all.

I gauge the risk back and forth in my head. Luckily, it takes them a while to load up, so I have some time to think. Ultimately, I err on the safety first side. I share my concern with my nurse, who discreetly gets me checked into a private room down the hall. I am relieved.

They'll be plenty of time for real-life encounters in the future. I'll have runny noses to wipe, diapers to change, greasy dishes to scrub, and bathrooms to disinfect. Just not tonight. I remind myself getting back to real life, in all aspects, will take time.  For today, no knife fights or unnecessary contaminants or running any marathons.

Maybe tomorrow :)