"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.

Celebrate the Positive

Laying on the cold basement floor Monday night, unable to sleep, my mind starts to wander. Our power is out, phones are down, no internet, cell phone service not working...we can not communicate with anyone. What if the roads are closed in the morning because of downed trees? We are stocked with food and water, but what if I do need to get to the hospital? Hmmm....

These thoughts entice me to get up twice during the night, walk up a flight of stairs and down a bottle of water each time. Of course, this means I need to take a second trip about 20 minutes later up two flights of stairs to use the restroom. Lucky for me, all this work makes me tired enough to sleep in between.

So, we all made it through the night. By 7 am, I couldn't handle the basement floor anymore and the wind had died down, so I escaped up to my own bed. I slept soundly and gratefully for three more hours.

Hurricane Sandy did not wreck the havoc that was expected in our area, she just upset our routine. I am glad that we escaped the potential danger, and wish the best for everyone who did not. I still have to find a way to get updated on the status of everyone else.

We ate leftovers and non perishables for breakfast and headed to the gym where they had electricity that promised warmth, comfort, and hot showers. When we got there, I decided walking on the treadmill might be a good idea. I didn't push too hard, never went faster than 3.5 mph(not setting any records today). First, I walked a mile, got off the treadmill, drank water and sat down. I could feel the soreness in my legs, but I was ok. Then I walked 3/4 of a mile, same drill: off, water, sit. I can still feel it in my legs, but I'm still ok. I grab a couple of two lb weights and walk another half mile, laughing at myself for feeling the strain of two lb weights in my hands while I walk, but I do feel the difference. Ugh. This time I'm done. I finish off with stretching my back, legs and shoulders. I really feel like I accomplished something today. Yay!

I go to my favorite part of the gym next, the steam room, but only for a few minutes, got to watch out for blood pressure issues. Everything is fine there and I get the hot shower I was so looking forward to. We finish the trip off with a very salty meal at Fuddrucker's, and when we arrive home, the power is back on!

All in all, it's a pretty good day for me, looking forward to more days like this one.

Dehydration Decisions & Hurricane Sandy - Oct 29, 2012

So I have been feeling exhausted all week. It's kind of discouraging, but I am trying to be patient. I had an appointment with the Transplant Clinic today, and with Hurricane  Sandy coming in and everything being closed, I believed I wouldn't be expected to come. However, because I wasn't doing great last week, they told me I needed to go in. 

The drive in was rough, not a lot of cars on the road, but visibility was limited. As the rain got stronger, I really started to have doubts that this one-and-a-half-hour trip(well, at least 2 hours in this weather) was a good idea. Eventually, we made it safely and waited the routine hour and a half past my appointment time to be seen. Each minute that passed was a little more stressful, being unsure of the conditions outside. 

When my nurse finally called me in, of course I got dizzy as I stood up. She was not impressed. We talked about eating, drinking, and urinating. Input and output numbers. Both of mine are improved since last visit, but I am still overwhelmingly exhausted and visibly dehydrated according to both doctors. They evaluated my blood pressure history and it's been consistently too low. This should feel like great news as I have suffered from chronic high blood pressure for more than ten years. Since transplant, I don't take blood pressure meds anymore. But too low blood pressure causes dizziness and fainting and is just generally not fun. 

Dr Jackson tells me my Hemoglobin and Hematocrit are still low 8.8 / 29.4. My albumin is low. My red blood cell count is low. I'm confused as everyone has always said my labs looked great. Now I understand...they are steadily improving and great for a person with a recent kidney pancreas transplant who feels exhausted all the time, not great for a healthy person.... Dr Wali wants me to stay and get hydrated via IV. And get a dose of Epo while in the hospital "It should only take 2 hours," he suggests. But this is doctor time, not real people time. 2 hours doctor time typically translates into 4 hours real people time. In 4 hours, I will be stuck at the hospital indefinitely because the storm with be in full swing. 

Dr Jackson, my nurse Linda and I point out reasons for me to go home now.  

• "Her numbers are the best they've ever been." 

• "She's been eating much more, yesterday was her best day of eating." 

• "If I stay now, I'll be stuck here for at least a day." 

Dr Wali eventually compromises by sending me home today, with a shot of Epo right now, a prescription for magnesium, and a prescription for a salt-inducing hormone as my body is clearly not retaining the water I drink. He tells me to get to a lab immediately once the roads are safe post storm and we'll decide based on those results if I need to get IV treatment or not. 

My nurse loads me up on apple juice and waters before I go and we get on the road ASAP. She calls in the prescriptions to speed up our trip, but when we get to the pharmacy they are not ready yet. I take advantage and get some Arby's(lots of salt couldn't hurt). The roads were getting worse and it took a long time, but we eventually made it home safely. I am grateful. 

It's a few hours later now, and our power is out. I'm getting cold. Everyone else is setting up the basement where we can sleep without fear of wind and windows (or flooding-it's a walk out). I've been drinking, but I still feel dehydrated. Sleeping on a cold basement floor can not be any more comfortable than sleeping in my own bed, where i already spend restless and uncomfortable nights. Starting to wonder if leaving the hospital was the best choice. We'll see how tonight goes.

Outpatient Clinic - Oct 16, 2012

Home for a couple days, getting re-accustomed to kids' schedules.  Today I was busy, well, busy for me. I had my first clinic appointment at the Transplant Clinic. Surprise...there was a lot of waiting. Got there at 10:15, was seen about 12:30.  I did, however, have a new experience in the waiting room...hunger! I have not been hungry since transplant, only forcing myself to eat when I could.

So, yay! Being hungry is good. I found a hospital coffee shop and bought a tuna sandwich. It's was really good, well, a quarter of it was...I was full at that point...baby steps… 
 

I was so tired by the time I was called in, but I pepped up because everything in the appointment was good. First off, because I got to leave. (Other diabetics might understand this. One reason why I dislike going to appointments was that I was always afraid they were going to keep me there.) Not today. My new creatinine level is 2.1(normal is in the 1's)!! My nurse made some medication adjustments based on my drug levels. We went over the changes to medications made by the doctor while I was in the hospital and the prescribed drugs my insurance doesn't cover. 



 
My nausea has pretty much subsided :) . I lost all 15 lbs(yes, 15 lbs) of water weight. My incisions are healing well, maybe a little too well. My nurse takes out about half of my staples, and on plenty of them, my skin had started healing over the staple. She asks about my pain levels, I'm still really sore, but truthfully it is improving. I ask her why my old kidneys are hurting because that really doesn't make sense to me. She explains to me with a diagram how the new kidney and pancreas were added, and where, and how the surgeons had to rearrange all my organs to make room. These organs are not designed to be touched or moved, so everything in my abdomen should probably hurt. It doesn't take the hurt away, but it's good to know there's an explanation. She tells me people often need the Vicodin for up to 2 weeks, depending on their amount of activity. Hmmm. Ok. I'm trying to wean myself off, but haven't been successful yet.  






 

I got to see a more clear idea of where my new organs are, and where the old ones are. The whole thing is just impressive that people are so intelligent and resourceful to have come up with this. So, inside my body now looks like a combination of these 2 pics, with 3 kidneys and 2 pancreata(yes, I looked up what the plural of pancreas). My extra kidney is on my left and extra pancreas on the right.