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.

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.

I'll Take Uneventful

Yesterday and today pass slowly. There are no drastic changes, and I am stable. 

Treatment makes me sleepy, so I rest a lot.

My lab numbers are a little better, but not much. There's still lots of bleeding.

Dr Wali is not concerned, and says they're going to find my baseline normal and target that, but only thing that can be done right now is Thymoglobulin treatment to suppress rejection. I should be able to go home Friday or Saturday, as long as my numbers continue to trend in the right direction.  If my bleeding has subsided enough, I'll also have my stent(from transplant surgery) removed on Friday.

He tells me there's a slim chance I'll have to stay two more days if there's not enough improvement in five treatments. 

So, I'll wait. It's just a few more days, and my kids and my dad will come for our in-hospital Thanksgiving visit. It will be rewarding to see them and revisit everything we are grateful for; there's plenty this year. I'm looking forward to tomorrow.

And I'll take uneventful and boring over traumatic and exciting anytime.

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 :)

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.