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.

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.

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.

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.