99% is an A+ !

I have been home for four days in a row. It hasn't been hard to adjust.

Little by little, I am returning to real life. I sleep on a regular schedule, get up with the kids, go to all my appointments, work a little, taxi the kids around, do chores and make dinner. Mostly. And I nap a lot.

I am so lucky to have had my dad here to help me.  Well, sort of.  Up until this point, he hasn't actually been helping, he's been doing.  I've been the one helping him.  I know he wants to and enjoys time with his grandkids, but being a dad when you're really a grandpa looks exhausting.

My removed stent

I have my stent removed today.  It was placed inside my transplanted ureter at transplant to keep it open, but its no longer necessary.  The procedure only takes a few minutes and is uncomfortable but not really painful.  (I think I've built up an almost impenetrable strength/resistance to this kind of stuff.) The doctor advises me to be wary for excessive bleeding, but all day long, there's been none.

 

 After stent removal, I have my first post-hospital-release outpatient clinic appointment.  I'm feeling a little paranoid that anything could go wrong given my history, but everything falls in place.  My blood work looks great and I get back the best results I've gotten yet!

Dr Wali had previously explained to me that my CD3 level measures the amount of rejection cells present in my transplanted organs.  This test takes two days to culture. Upon admission, my CD3 was an acutely high 41%. (I'm not sure that I understand this completely, but logic says that leaves only 59% for the healthy organ cells...Ugh!) Dangerous and a little scary, he told me the safe zone for CD3 is less than 10%, so we are shooting for 90% healthy cells.  I am hoping for a trending down number, like the 20%'s or so. My post-hospital-release CD3 test comes back today with rejection cells at less than 1%!!

"This means the Thymoglobulin worked," Dr Wali says, but I'm really not paying attention at this point, just in awe and excited. Less than 1%?
 

"YAY!" My typical business-like approach to clinic appointments takes a back seat to my ear-to-ear grin of astonishment.

He goes on to tell me that he wont need me to return to the clinic for four weeks...woah! But I will be doing weekly labs and conferring with my nurse for any medication adjustments or unplanned check ups.  I'm looking forward to the break in trips to the hospital but a little nervous about being given such a long leash.  I remind myself that the only thing the doctor goes by in our clinic appointments and at the hospital is the lab work anyway; I can live with this.

What am I going to do with all my new free time and energy? I confirm with my nurse that I am allowed to do normal activities.  I can spend time in a kindergarten classroom, clean bathrooms, teach classes, go to the gym, eat at a pot luck?  Yes. "Live your life. Love your kids," Linda tells me. "You need to build up your resistance - just take it slow and use common sense."

My mind wanders and I imagine myself in my real life, busy again, really working and taxi-ing and changing diapers and paying bills and going to the gym and...I realize I wont be living MY real life anymore.  MY real life will be different than I have ever experienced. I don't know life without dialysis and diabetes, without taking the time to check my blood sugar and run the machine and all the other preventative and reactive measures I never seemed to have enough time for. 

Dr Wali interrupts my inner monologue and we say goodbye, shaking hands like old friends. I almost want to hug him. 

I smile and tell him I hope to not see him anytime soon.

Hooray for Home!

Homeward Bound :)

Blurry Memory

Today is my sixth day in the hospital this round. Since surgery, I think I've spent as much time in the hospital  as out.

It's becoming routine. 

• Blood draw at 4:30
• Resident comes by around 6:00
• Vitals at 7:00
• Breakfast by 8:30
• Morning medicine 10:00
• Doctor rounds around 10:30
• Vitals and Pre-treatment at 11:00
• Thymoglobulin treatment from noon-5:00
• Eat lunch before nodding off
• Treatment knocks me out every afternoon for a long nap, repeatedly interrupted by vital sign checks
• Dinner by 6:00
• Walk the stairs/tour the hospital after dinner
• Vitals, evening medicine and blood draw by 10:00
• Try to busy myself with iPad, phone and tv until bedtime

it's predictable, tedious and not productive, but I want to get the benefits of treatment, so it's do-able. I remind myself it's necessary and the end results will outweigh my current frustration.

When the resident comes, he goes over the update as he knows it. He tells me I am going home today, that I'll need to go back on a blood thinner at home, and the blood in my urine is not really bleeding; it's the clearing out of the dead rejection cells.

I listen to everything he has to say, ask pertinent questions, and then remind myself the attending doctor will do rounds in a few hours and he's likely to have a completely different assessment.  There hasn't been a day yet when the resident and the doctor didn't give me conflicting updates, and the attending doctor's opinion weighs heaviest.

When Dr Wali rounds, he tells me I won't go home today; there is still evidence of too many rejection cells in my blood work and this number needs to go down to confirm the rejection is at bay. I grin and hold back a chuckle, amused by the two doctors' contrary updates.

Translation: Two more days of Thymoglobulin treatment to attack the rejection. A blood test taken today will take at least two days to culture to check how well the Thymoglobulin is ridding  the rejection cells. 

"And potential rejection will always be an issue," Dr Wali says. "We will have to monitor lab work routinely to screen for issues."  Ugh. I want for this to be behind me, to be able to hit a fast forward button and jump to a time when my post-transplant complication memories are blurry and abstract because of all the tangible positives I've experienced since.

Dr Wali provides me with my first one: both my kidney and pancreas performance numbers are up, and he believes we are on the right track. 

I really want him to be right.

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.

There's no place like...the hospital

I have been home since last Sunday. And the week has been rewardingly uneventful. :)

By Friday, though, I hit a speed bump. My urine is brown, not a little dark like amber-colored, but brown like soda syrup. I am alarmed and it continues throughout the day. I investigate on Google and it could be dehydration, blood or further kidney issues. Uh-oh.

I call the on-call transplant coordinator, who tells me not to get too concerned, it's probably a little dehydration and to boost my water intake. I can do this, but I do have a nagging feeling I'm not dehydrated; I don't have any other concurrent symptoms.

Saturday and still brown urine, and the coordinator doesn't think I should worry as I am due to go for lab work on Tuesday. That is 3 days from now, and based on my post-transplant experience, A LOT can happen in 3 days. I push a little harder, explaining my concern and the on-call surgeon sends me to a local ER "just to get blood drawn." Gratefully, I head off to give the blood and get everything cleared up. I'm figuring it will be like stopping at an outpatient lab. 

Five hours, a blood draw and lots of discussion later, the surgeon remotely orders me to be admitted to the hospital where I had the transplant. It's an hour from the current hospital I'm at.  I am further on edge as the local ER doctor doesn't really have any answers, just that some of my blood counts are elevated and that the surgeon wants me admitted. I don't argue, but leave unsettled as I'd like more information about the situation and risks. What exactly is the reason or course of action for my admission?

By midnight, I am checked in, but still no answers. At 2am, an anxious med student comes in, asks lots of intake questions and looks at my abdomen.  He is in data-collection mode and has no answers either. By 3:10, a yawning resident stops by, asks more questions and lets me know they will be starting a round of IV antibiotics. 

Yay! Some details and action. She tells me about some elevated kidney and pancreas levels and especially a more concerning high white blood cell count(your WBC count goes up typically when fighting something). They can't determine the cause of infection yet but they've drawn more blood to help determine the source. 

At 6am, my old friend/resident George stops by and tells me they've concluded it's an infection and I'm being treated with antibiotics and "Its not too big of a deal." At this point, lying in a hospital bed, feeling less-than-informed, I am not convinced. I do, however, believe that antibiotics seem like a safe course of action.

Eventually, I sleep, a restless, frustrated, want-some-answers sleep. At 10am, Dr Jonsson, the transplant surgeon appears. He talks kind of like the Wizard of Oz, and I really have to press for more details. He tells me he does NOT think its an infection, that the lab work is once again ambiguous. He will send my samples to be cultured to eliminate infection as a cause; this will take 2 days to complete. 

Initially pleased to hear no infection, I quickly remember I still have elevated blood tests and brown urine. And I have developed a nagging pain, not medication worthy, but still there, in my abdomen. Why? Dr Jonsson drops the bomb I am not expecting.

He thinks it is more extensive rejection. He is starting me on Solu-Medrol, an immunosuppressant steroid I was taking during my last go-round at the hospital. He will start Thymoglobulin, a more potent steroid by tomorrow.  He believes I should have had this during my last visit to completely eliminate all signs of rejection. 

I am muddled, thrown off balance. "How is the brown urine related?" is all I can come up with.

Tests confirm there's blood in my urine changing the color. Dr Jonsson believes its probably from my kidney biopsy last visit and the blood thinners knocked the blood loose. He stops blood thinning treatment for the time being.

He stops talking again. We are all silent as I take it all in. I wanted better news, and I am shocked and frustrated at the lack of an answer. 

"So, I will at least be here two days?"

Dr Jonsson looks down and shakes his head. "Probably longer than that," my Wizard of Oz answers vaguely. "These are valuable gifts you've been given and we need to take care of them."

It takes me a while. I am caught off guard and scared and frustrated and tired of always waiting for answers. Doctors are detectives, trying to come up with and prove their theories, not omniscient all-knowing gods. I can not deny my frustration, but I'm not mad at them. I breathe deeply, look around my room and remind myself another stint in the hospital will be a distant memory once I'm living the life I am preparing for.

And Dr Jonnson is right. I realize I am not in a rush to leave, and I need solid answers and definitive action to be taken, which can only happen here in the hospital. There will be no clicking sparkly red shoes or chanting "There's no place like home" for me.

I let the doctors leave and I reflect on what he's told me. The situation is frustrating and the treatments are contradictory. Taking a potent immunosuppressant furthers my risk of infection, which may or may not be the reason I am here in the first place. How will this risk be balanced? How long will the Thymoglobulin stay in my system? When I go home, will it be risky to be exposed to my five-year-old bundle-of-germs?  How long does "longer than that" imply? What about the pre-existing blood clot and the effect of taking away blood thinners? Are these complications typical? 

I take notes on my questions to ask George when he returns.
I breathe some more.
And I...WAIT.

I'm...Going...Home!

I'm...

Going...

Home!

"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.

I Vote for No Rejection - Nov 7, 2012

The night shift resident returns at 7 a.m. and continues on the same path as Dr Piper started down. My lab results have come back and things are still trending in the wrong direction, indicating more symptoms of rejection. My pancreas performance numbers are off. My amylase and lipase are outside of range. My blood sugar (previously 80-90s) is 150. And my creatinine, demonstrating the level of blood toxicity via the KIDNEY (Now it's affecting my kidney? I thought the concern was for my pancreas?), has jumped from 1.0 to 1.3. My GFR, the percentage of effectiveness of the kidneys has dropped drastically from >60 percent to an alarming 46 percent. My blood pressure is high (160s/90s) when last week it was so low I was having dizzy spells and taking salt tablets to raise it. 

He softens the blow, but only a little. My creatinine is still good, but trending up is not. My elevated blood sugar might be a result of the steroid treatment but there's no way to confirm the cause.

The resident asks me if everything is good. Color me confused.
"No," I answer honestly. "I just learned I have more signs of rejection and that the treatment can give ambiguous results. How will we know if the immunosuppressants are working or not?"

He explains that we simply have to ...WAIT. They will continue to check labs every four hours. I want to know how long to expect on this waiting, but he explains there's no concrete answer he can safely give. I search for the silver lining in his update, but I'm struggling to hold on to how positive I can spin this situation. Again, I feel confused and disappointed and frustrated and powerless. 

I force myself to sleep. My other surgeon, Dr. Wali, comes by on rounds with three residents. I am happy to see him: he is definitely a face and voice I trust.
He shares his opinion with me: He does NOT believe I am experiencing organ rejection! His team has been analyzing my results and condition, and the doctors do not agree. The final votes are two surgeons and two residents say it's rejection, one surgeon and one resident believe it's not. Predictably, I vote for no rejection. 

Dr. Wali explains the results are ambiguous, that some factors lean toward rejection, while others are not consistent with that diagnosis. He recommends another ultrasound, and if it shows substantial improvement, rejection can safely be ruled out. If the ultrasound shows worsening or no improvement, a biopsy to rule out rejection will be necessary. 

I'm surprised when he tells me they'll do a biopsy on my transplanted kidney. My kidney? For a pancreas rejection? He explains the organs are from the same donor, so if my body is rejecting the pancreas, it is simultaneously rejecting the kidney. And it's safer and easier to sample the kidney.

Dr. Wali goes over what the biopsy results will tell us:

   1. BEST RESULT: No rejection

   I will be sent home tomorrow on blood thinners to treat the clot.

   2. GOOD RESULT: Mild rejection

   They will continue to treat with Solu-Medrol steroid immunosuppressant. This is the       
   result with 80 percent success rate quoted by Dr Piper.

   3. NOT-SO-GOOD RESULT: Substantial rejection.

   They will treat with a more potent steroid, Thymoglobulin, that I was taking immediately after transplant in hospital. No specifics on outcomes are discernible until after the biopsy results show how substantial the rejection is.

I am pleased and hopeful with Dr. Wali's opinion, but I am aware that other doctors don't agree. The lack of a definitive conclusion frustrates me, but Dr. Wali assures me that 24 hours after biopsy, the results will be clear. So, surprise, surprise, my primary course of action for the next day will be ...WAITING. 

I go for an uneventful ultrasound and the tech confirms the clot is still there, and its size remains unchanged since Monday. Biopsy here we come.

Dr. Wali performs the biopsy. It isn't as painful as I expected. The anesthesia hurts more than the biopsy needle. It's just a tiny sliver he removes from my kidney, but there is substantial risk for excessive bleeding with the blood thinners I've been on.  

The hole from from the biopsy is just the size of a needle. The bandage, with a huge pack of gauze, is stretched as tight as possible and runs the full width of my abdomen and around my hips. Uncomfortable is an understatement.

Dr. Wali reminds me he thinks there's no rejection and he's looking forward to being right. Me, too. I am not looking forward to the next 24 hours. I will have vitals drawn every half hour for the first few hours after biopsy. I will have extra blood work so I can receive a plasma injection to help my blood to clot. The irony is not lost on me. I've been on anti-coagulants for two days and now they'll need to administer a coagulant because of it. Medical treatment being used to treat medical treatment. I don't argue. I'd really like the bleeding to subside. There will also be repeated blood tests to confirm my body reacts appropriately.

Not going to be a restful night, but I am eager and anxious for tomorrow's news. Again, I'm trying to focus on the positive. I've grown attached to my new functioning pancreas and my new functioning kidney and the results they have been providing. Despite the pain and the exhaustion and unexpected events, I really appreciate not performing dialysis and not repeatedly checking my blood sugar and not taking insulin shots four times a day. And I really, really look forward to the opportunity to live a longer life, to live it with an increased quality of life and less dependence on machines and doctors and shots to maintain myself. I'm not ready to give up on seeing my kids become adults, experiencing my soon-to-come freedom and creating an inspiring future. 

80% is only a B- - Nov 6, 2012

During the night, the nurse brings me the CT scan contrast dye mixed with apple juice and water. It's like two really big glasses full. I've got half an hour to drink them and my CT scan will be in two hours. They are difficult to get down, but I manage. My stomach is sloshy and my abdomen sore as I walk over to the transport stretcher. 

The CT scan is done and I am back in bed by 3 a.m., just in time for the blood draw at 4 a.m.

The night shift resident comes at 7 a.m. and confirms the results from the CT scan: there's an arterial blood clot. They will continue with the planned treatment. I want to know how we'll know when it's gone. "There'll be no more pain," he tells me. Fair enough, and I'm too tired to ask any more questions right now.

Another resident comes by at noon and reiterates what the first resident said. Rejection has been ruled out. We're just going to wait for the blood thinners to do their job and I'll probably go home tomorrow. I like the direction we're going at this point.

My surgeon, Dr Piper, does rounds in the early afternoon. I am glad to see a face and hear a voice I know, but he gives me less-than-pleasant news. He tells me he is now concerned about rejection stemming from the clot. He talks to me about treatment for rejection. Again, I am confused.  "I thought I was admitted for a blood clot."

Dr Piper tells me the blood clot is now a secondary concern, and it can be routinely treated with blood thinners that are already in place. With the changes in my most recent lab work, pancreas rejection is his primary concern. 

I need to receive an IV steroid, Solu-Medrol, as an immunosuppressive treatment to keep the rejection at bay. It will start immediately (doctor time, not real people time). Dr Piper tells me there's an 80 percent success rate with this treatment. We have to keep checking lab work to look for positive or negative changes. Which means more blood draws and MORE WAITING. 

So I wait. Eventually, the nurse hooks me up to the steroid. I feel concern, but no pain. I am torn. I was grateful when all I had was a treatable blood clot. I want to remain this positive. 

I was not prepared for the clot to lead to pancreas rejection, though. 80 percent success rate? That leaves more wiggle room than I'd like. And more hospital time. And more uncertainty. And more powerless waiting. 

Long Day at Hospital - Nov 5, 2012

On Monday morning, we loaded up the kids (teacher workday) and drove to my Transplant Clinic appointment. They were especially behind today. My appointment was at 11 a.m. I was called into the exam room around 1:30 p.m.

The resident asked me a few questions; he didn't know anything about me. He asked what kind of transplant I had, when, how it was going, etc. It really just seemed like he was trying to fill the silence while we waited on my nurse and doctor. Dr Wali rushed in. I told him about my pancreas pain and swelling and about missing my medication the week before. Concerned about the unexplained pain, he ordered an ultrasound STAT.

My nurse Linda explained they would do the ultrasound, and then I would need to wait for Dr Wali to determine if I would go home or require an admission. I was taken aback. "Admission for what?"  Linda explained if there was a blood flow problem, I would need to be admitted immediately. 

We found the ultrasound department, and I sent everyone else to lunch. It was already 2:30 and no one had eaten. I was pleasantly surprised; they called me in within 15 minutes. ... Hooray for STAT orders!

The tech started my ultrasound on my kidney side and it was pretty uneventful. Moving over to my pancreas was NOT. I am amazed at how much it hurt and how much she couldn't tell. She kept reminding me not to move. (I was really making my best effort, and she was applying pressure to an area that hurt without even touching.) At 3:50, she left to review the pics with a supervisor. At 4:00, she returned with two supervisors and they started again. They discussed what they could and could not see on the screen.
I could hear them, but I couldn't tell who was saying what.
I wanted information, but instead I heard uncertainty and it was unnerving.

"That's her ovary, right?"

"And her pancreas?"

"That's not a pancreas. What is it?"

"Why is it wrapped around like that?"

"This is surely her pancreas."

"Is it pro-fused?"

"That's the iliac."

"That's a cyst, right?"

"Here's the thrombosis."

"Maybe pancreatitis."

"This is definitely arterial."

"The venal is ok."

"It's a sizable hematoma."

They went on for a while. Basically, I understood that they were unsure what they were looking at. I tried to rationalize that my insides look different than most people's. I uneasily left the ultrasound department at 5 p.m. The tech called me shortly thereafter and told me I was going to be admitted immediately per Dr Wali's orders. I ventured a "Why?" but she could only tell me that's what he decided.

I sent everyone else home; the kids can't be in a hospital room. I tried to get admitted quickly but got really slowed down as paperwork wasn't ready. I took care of some phone calls, ate dinner and talked to my nurse. She told me the ultrasound strongly suggested a blood clot, but they'll do a CT scan in the hospital to confirm. They will start me on an IV blood thinner right away because I am in an emergent situation. If the blood flow is cut off, I will lose the pancreas.

OMG - this is devastating. I had a pancreas now and I'm potentially going to lose it. I try to block out the overwhelming gravity of this revelation. I have to stay positive, I remind myself. I am grateful that action is being taken right away.

My nurse, the hospital and I have different opinions on the definition of "right away." 

Within an hour, I had paperwork to fill out.

Forty five minutes later, I was assigned a room.

An hour and a half later, a resident briefed me on what to expect: IV blood thinners now, CT scan during the night to confirm clot, probably be on blood thinners for weeks to months, but it can be taken care of. 

Two hours later, I received some treatment. I got an IV and a Heparin (blood thinner) drip. I remind myself to be patient; it's going to work. And I am grateful there's a solution at hand.

Pre-Thanksgiving Gratitude

Fruits of our labor

So this past week was Halloween, and I took my son trick-or-treating. This year, I took a little more interest in his candy, though, as I knew I would be sharing it with him. Hooray for not having diabetes!

Trick-or-Treating was tough. It seemed like a lot of walking, and it was cold. I got tired way before my son did. By the time we got back, I was so relieved to be back in a warm house, sipping hot chocolate.

But the evening continued. I made dinner and we carved pumpkins. It was a really long night for me, but, of course, we had fun. After the kids went to bed and everything was cleaned up, I again felt the sweet relief of being still, laying in bed, physically drained, but grateful to have been able to have made another memory with my kids.

The next day, though, I felt really sore. like it-feels-like-I-did-1000-pushups-and-then-got-hit-by-a-mac-truck sore.  I still had to go to the lab and get blood drawn.  On lab days, I'm supposed to hold my morning medicine until I have the blood drawn, so they can check my immunosuppressant drug levels.  I was really tired, so the trip to the lab got delayed until afternoon, and, therefore my am medicine got delayed. Way behind, I went on with the rest of the day and, ultimately, I forgot to take my morning medicine completely.

Aaaargh! When I realized, it was already deep in the afternoon. My nurse had advised me if I miss the dose by more than 6 hrs, to skip it. Disappointed in myself, I planned to take my next dose right after dinner.

Aaaargh, again! After dinner, I fell asleep downstairs, still exhausted from yesterday's "workout."  When I woke up hours later, I dutifully carried myself off to bed, still desperate for rest with no recollection of needing to take medicine.

The next morning, I realized I had missed both doses of immunosuppressants the day before. OMG - I don't know how serious this is, but I leave a message for my nurse. I look up signs of rejection and I am relieved that I'm not feeling any (extra) abdominal pain, no fever, no elevated blood sugars. Whew! Feeling like I dodged a bullet, I will NOT allow myself to do this again.

Fast forward to Saturday evening. Now I feel a new pain I haven't felt before.  It's sharp, internal and deep, like where I think my new pancreas is located. It becomes bad enough that I decide to take some Vicodin, which I haven't taken for two weeks. I sleep well, but in the morning, I feel the sharp pain again in my pancreas area.  I still have no fever and my blood sugar is 79, hmmm.

My day progresses, and I'm still in pain. During the afternoon, I realize I have a fever--its 101.2'  A few minutes later, I am sweaty and clammy; it breaks quickly. All of this is very confusing. And I start to get more nervous. My nurse still hasn't called me back.  If this is an early sign of rejection, how much time do I have to respond? How long do the immunosuppressant drugs stay in my system? Do I need to go to the ER? Am I freaking out over nothing?  Feeling a wide variety of emotions at this point: disappointment, anger, unworthiness, worry, but mainly...fear. Most transplant patients experience some type of rejection in the first year post-transplant, but I am not prepared to follow this trend. How could I have forgotten something so important?  Don't I value the gift I've received?

Demoralized and a little desperate, I call my nurse again. No answer. I page the on-call post-transplant nurse. I need info so I can make a decision.  It takes a good two minutes(although it feels like 2 hours) for the nurse to call me back. I am so glad to talk with her; she assures me I would have more symptoms, especially the fever.  If I was in rejection, it wouldn't have broken on its own. Whew!

So, I take some more Vicodin and resume my day, again relieved. I pause to think about my recent roller coaster of emotions.

I DO value the gift I've been given. I feel lucky and blessed and overwhelmingly grateful. Only this time, it's much more than being grateful for warmth and comfort, I am grateful to be ALIVE and HEALTHY.

Ok, well...working towards HEALTHY, but I am closer than I've been in twenty-two years.