Impossible is Nothing

Wow! It's been a few weeks since my last post. Things are steadily improving...slowly, but still improving.

I'm tired still, but less tired than a month ago. My doctor extended my time between lab tests to two weeks. Honestly, this makes me a little nervous as I've already experienced how much can change in a few days.

Despite my concern, two weeks pass without incident. I'm working and working out...sporadically. I feel markedly better(but I'm still aware there's plenty of room for improvement).

And today...I got the best lab results I've ever gotten!

• Creatinine (level of toxins in your blood) - 0.98 (healthy = 0.6-1.2)
• Albumin (protein in blood) - 4.0 (healthy 4.0+,  I've never been higher than 3.5)
• Amylase & Lipase - 97 & 45(pancreas functioning perfectly!)
• GFR 84 (kidney filtration rate, normal range for healthy women with 2 functioning kidneys is 88+)

Wow! My one transplanted kidney is exceptional! It's been explained to me that GFR is kind of like the percentage of filtration your kidneys are doing. When I was diagnosed with end stage renal disease, my GFR was 5(ie kidneys functioning at 5%). And now, my ONE kidney is functioning at 84%.  (They don't even call it kidneys damage until you fall below 60!)

It's reasonable for me to expect 50% with one functioning kidney, but 84% I never saw coming...Yay, me!

I'm determined to keep this momentum going. I've set my sights on a day where I wake up refreshed, full of energy and without dark circles under my eyes.

This used to seem impossible, but with a GFR of 84, I'm pretty sure my body can do just about anything!

I also used to think this journey was physical, it's really not. If my body can achieve what never seemed possible, why can't I?

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. 

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.

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.

Surprising News

Today I had a follow up appt at the Transplant Clinic. I was pretty sure I was going to get good news all around. It seemed like things are going well...I stopped taking pain meds over the weekend, I stopped taking anti-nausea meds as well, I am eating (a little) more.  I'm tired a lot, but this feels normal.

When I walk in to get my blood drawn, a lab tech(who is not drawing my blood but looks concerned) comes over and asks me quite deliberately, "Michelle, are you feeling ok today?" I tell her I'm good, and she smiles halfheartedly and walks away. This is the first time my arm has really felt like a pin cushion.  There's been a lot of blood drawn and IV's in my arms in my lifetime.




When my nurse calls me in, I stand up and get dizzy.  She asks how long this has been happening and I let her know it's been happening every time I stand up since yesterday. I just thought it was my blood pressure dropping when I stood up. "This is concerning." She frowns. "Hold my arm and I'll take you to the exam room." 

She asks more questions about eating and drinking and sleeping and activity. And then she looks at my weight. Ugh. I have lost 30 lbs since I left the hospital. To be fair, however, I gained 15 lbs of water weight post surgery. She is alarmed that I lost over 13 lbs in the last week. She looks over more stuff and tells me I am symptomatic for being dehydrated again. Before the doctor comes in, she warns me that I might end up staying at the hospital for a couple of bags of IV fluid.  I am unimpressed but keep my mouth shut.

Dr Piper comes in, listens to the details, examines me.  Yay! All my staples are taken out and my incision is healing beautifully. My medications can stay as is(except removing the pain med and anti-nausea meds that are no longer necessary). My creatinine(measures the level of toxins in the blood) is 1.5!! A healthy person with one kidney should be below 1.8.  Yay! I am a healthy person with one kidney!

But I am supposed to have more energy than I have; I am supposed to be feeling better. "I didn't know I was feeling bad," I respond.

"So," he says. "You need to get hydrated." I brace myself, and then he explains his approach to get this done. First, I need to eat more, like all day long in small amounts; I am to be a grazer. Second, I should supplement my grazing with Boost or Ensure. (Did you know there's 260 calories in each bottle?) Third, drink more, easy enough. Fourth, start putting salt on everything!

He told me the extra salt would retain the water I drink in my system because right now my kidney is in super efficient mode and it's getting rid of all the water I do drink. He recommends Big Macs and fries, potato chips and pickles, tomato juice and canned soup...all of the things I am trained to stay away from. He suggests adding salt to all my food.  My taste buds are going to be so confused….

But, I get to leave :)

We stopped at McDonalds on the way home. I wasn't sure what my stomach could take, so I played it safe and had a kids meal.  Smiling as I started to eat, I tried to enjoy the liberating meal. It was good at first, but way too much for my tender stomach by the end. 

So I'm trying to graze, tomorrow I'll go get some Boost, and work on adding salt and making frequent trips for fast food. It could be worse....

Sur-Real Life

So real life has totally started up again. We get up at 6, kids go to school.  Errands and lab trips.  Vital signs and records to document.  (All my numbers are good so it's easy…)   Especially my blood sugar.  I love not being diabetic. 

When I was diabetic(nice ring to it, huh?), I dreaded taking my blood sugar because I never knew what the judgmental meter was going to tell me. Since I've come home, my blood sugar varies between 95-105 ALL THE TIME. It makes me want to check my blood sugar just for fun. And maybe share it with everyone, because I'm proud, like I accomplished something…ha! As a diabetic, of course I took credit for good blood sugars, I guess I've got to let that one go now...

Other stuff to do:  Apply a dressing.  Uh oh.  My incision is oozing really weird looking kinda-blood-kinda-not stuff.  A lot of it. I need to call my nurse.  Finish the rest of the morning. Try to eat.  I get down a slice of bread with butter - small victory!  Fold laundry and prepare stuff for work. The day goes by faster than I planned.  I call my nurse with my list of concerns: I'm having night sweats, my nose is running and I have a little cough, my gums are swollen and tender, and my incision is oozing.  I don't even know if any of these are important or not.  She doesn't call me back. Pick up daughter's band shirt, go to grocery store, cook dinner, start the evening taxi route.  Kids asleep tonight by 9:10 - awesome.

I have a few more things to finish for work tonight and then I'm done.  I'll go to bed AND I wont have to do dialysis.  There will be no throwing away old saline, no sanitizing, no setting machine up, and especially no alarms during the night.  I will not be tethered to a 20 foot leash. I can check on my children without following a multi-step medical procedure to disconnect and remain safe. And I will wake up when my alarm goes off, not on final drain with a jarring tug.

Maybe its sinking in.  Twenty two years of diabetes and a year and a half of end stage renal disease are over. It's surprisingly easy to adjust. There are very few down sides. The pain is slowly subsiding, I am slowly getting more energy. 

Hi, I'm Michelle. :)  
I am not diabetic. :)
I do not have kidney failure. :)

I think I'll start introducing myself that way. :)

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.
 
 

Boring Weekend - Oct 14. 2012

The doctors came to see me in the morning. Dr Wali said he was glad I was here as I appeared to be very dehydrated the night before, but my labs had improved since yesterday. Other news was good that my creatinine level was still dropping(translation: new kidney functioning better and better).

I'm still anemic and my iron level is low, but they give me an Epo shot as a booster. I'll probably continue to need these. Not a biggie at this point. Turns out the reason for my nausea (and subsequent dehydration) was that a doctor forgot to prescribe the anti-nausea medicine on my initial discharge. 

Because of the bleeding incision, they need to do an ultrasound. I've had these before and there was, of course, no pain. This time, though, every part of my abdomen is tender. "Wont that hurt?" I ask the doctor. "No," he soothes. "it's just an ultrasound." I am unconvinced.  

Transport comes and takes me to ultrasound. I ask the tech how she's going to do the ultrasound and not hurt me. God bless her for her honesty: "I don't think that's possible," she apologizes. So warm gel, ultrasound, ouch. She tries to be gentle. I am appreciative, but it definitely hurts.

When she's done, they review her pics and video, and my stomach starts to hurt even worse. I can feel the blood pumping through my midsection like a heartbeat. I have never actually had someone use my stomach as a punching bag, but THIS is what I imagine it feels like. I am curled up trying to convince myself it doesn't hurt that bad when the tech returns to tell me they need a few more angles. 

She brings a second tech to get the missing angles. Maybe it's in my head, but she is way less gentle and the five minutes it took felt like 20. They leave again to review and I am left crying in pain. Boldly, I decide to refuse if they want to do it again, but I miss the opportunity to put my foot down; they have what they need. Whew! 

In the morning, the doctor says the ultrasound was unremarkable. I try not to be offended. :) 
Since everything is ok here and I'm hydrated, I can go home. Yay! I get my new prescriptions and leave just as quickly as I'm allowed.

Round 2 at the Hospital (Oct 12, 2012)

Ugh. I don't want to go back, but I am grateful that they took my situation seriously. I wasn't going to the ER and wait until they could see me, they were having me re-admitted. When I arrived, there was, of course, no sense of urgency, but I was tired, not feeling well and just glad to be able to lay down....At first. 

I walked into my room and laid down at 6:30pm. A nurse greeted me and told me her shift was ending and I'd see the new nurse shortly. My dad had driven me, and he needed to get some dinner, so he excused himself and was gone for maybe 45 mins. While he was gone, no one came.

When he returned, he told me the nurse said I was staying until tomorrow. This was news to me. My nurse had told me I was to go get rehydrated/IV fluids and return home. I'm confused and he's tired, so he goes home and tells me he'll see me in the morning.  

Now it's 7:15 and I have to throw up. I painfully rush(this is probably hilarious to watch) to the bathroom, but it's just the omni-present unproductive stomach lurching that hurts so bad. I walk to the nurse's station and ask for a basin. The nurse let's me know that I need to be back in bed because I am dehydrated and I could be dizzy. As grateful as I am for her concern, I need the basin AND I point out to her that I have now been dehydrated in a hospital bed for an hour and no one has hooked up an IV to help me. She tells me they are working on it and to go lay down. 

So now I am sick and frustrated. At 7:45, a tech comes in and takes my vital signs. I ask him about putting in my IV. He says he's here to take vital signs, but he let the nurse know I asked. The nurse comes in. I ask her if she's going to put in my IV, she looks at me like she doesn't understand. I ask again, she says yes. Hallelujah. When? She tells me the tech is going to do it. Aaaargh!

Ultimately, the tech actually inserts the IV at 8:05, an hour and a half after I arrived to be treated for dehydration. Angry and frustrated and glad to be receiving liquids, I try to rest.

I don't really remember that night. At some point, they gave me anti-nausea meds and my stomach calmed down. I slept. I did not get up and walk. I was only bothered a few times during the night by a tech coming to test blood sugar and draw blood at 5am.

Home…briefly Oct 12, 2012

So, at home, sleeping(trying to sleep) in my bed is much better than the hospital. I can turn off ALL the lights and don't have to worry about a lab tech or friendly nurse or X-ray tech or inquisitive med student dropping by every couple of hours. I am also able to get up and walk without dragging the IV pole around. Ah, simple pleasures....

There's still plenty of pain. I take pain medication pretty religiously because my body lets me know if I missed it...I don't have to rely on a clock to know when it's been more than 4 hours. 

My incision starts bleeding, more than I would expect. It soaks through my shirt and pants. It doesn't hurt more, but it is alarming. With nurse's direction, I apply a dressing and realize I'm a lot more gentle than any of the techs, nurse, and especially doctors were. 

I do a lot of walking up and down the stairs. When I can't sleep, this gets me tired enough to fall asleep. I use a heating pad on my back which is especially helpful. I still can't really eat very much, and I am especially nauseated. In the first 2 days at home, in total I ate about 2 servings of soup and drank some water, all of it was forced. And I threw up most of it. By the second day, I couldn't hold down sips of water. I called the nurse. She told me I needed to return to the hospital; I was dehydrated.

Homecoming - Day 6 Post-Op (Oct 10, 2012)

I went home today! It took til the afternoon, but I still got to go! :) 

And, as soon as I got in the car(like a normal person with a functioning kidney), I had to go to the bathroom. I laughed at my own surprise.  I can't remember the last time I had to urgently go the bathroom, but I guess this does happen to people who's kidneys work. The drive was long, and we had to stop at the pharmacy. I couldn't make it waiting in the pharmacy and had to excuse myself to wait in the car. I was spent. 

When we got to the house, I went straight to bed. Climbing 2 flights of stairs really pushed me over the edge. Everything hurt, and I needed sleep. I had been awake longer today than I had for the past week. When I laid down, I could feel my body shaking inside, everything was tense and tight and swollen.  I appreciated the calmness of laying down, but it was the first time I had laid on a flat surface(hospital bed was always raised) and the stretching on my abdomen was way more bitter than sweet. 

I miss the IV pain medications. I had made a mental resolve to only use Tylenol once I got home. That lasted about 2 minutes into my arrival at home(the time it took me to find the Vicodin and open the bottle). 

Day 4 Post-Op (Oct 8, 2012)

I really looked at my stomach today. It's not pretty. There are 8" of staples is the shape of a slender S(like a snake) flowing down from my navel. It looks like an industrial strength zipper. On the left, there's a few staples closing up where my PD catheter used to be. On the right, there's a tube coming out of my abdomen connected to a fist sized bulb syringe, where the blood that's leaking internally can collect and get drained out. This is a lot to visually take in. 

My red blood cell count is down, my white blood cell count is up. I am anemic still. I get a blood transfusion. Everyone else says I look better afterwards; I feel the same.

But the doctors say everything is going exceptionally well, and they're prepping for me to go home. My creatinine is down to 5 something and my blood sugar varies between 95 and 120 WITH NO MEDICATION EVER. I have to keep reminding myself that I don't have to do dialysis anymore AND I don't have to take insulin shots anymore.  The way things are going, I wont have to take blood pressure medication either. Maybe my grey hairs will go away and my stretch marks will disappear.  The windfall is pleasantly unpredictable...It's all amazingly overwhelming. 

Day 2 Post-Op (Oct 6, 2012)

The doctors tell me everything went great with the surgery, and both kidney and pancreas are already functioning well. The pancreas is the big surprise; my body has not made insulin in more than 22 years, but my blood sugars are controlled completely WITHOUT MEDICATION already. The kidney is also doing its job. My creatinine levels have dropped 3 points already. I am impressed. 

NG (Naso Gastric) tube

The surgeon tells me I'm doing so well, he's going to remove the ng tube. He tells me to take a deep breath, and exhale really big on his count. Ouch! But it's out. I feel the scratchy, rawness of my throat but it's worth it to have the tube out. I'm grateful and hoping the nausea will go away.

I walk 5 times today. And I sleep like 20 times. I am in awe of how much pain I feel and how tired I am.

Day 1 Post-Op (Oct 5, 2012)

The surgeon had told me the most important thing for recovery was to walk as soon as possible. So, last night, I stood up and walked 2 steps. OMG, that hurts. Getting back into bed hurt almost as much as getting up. After I'd done it, I couldn't decide whether it was a good idea or not. 

 Today is a blur, too. Mostly I felt nauseous and my stomach was lurching. I couldn't throw up, it was just repeated lurching. I am amazed at how much it hurts when involuntary muscles in my stomach contract. I can feel the fuzziness that the pain medication is causing but I'm not sure it's doing much for the pain. 

I'm up and walking three times today, but in between, all I do is sleep. 

I had a few visitors today, and I am sorry to all of you. One I didn't recognize and others I didn't even remember being there. I do remember late in the evening when the hard candy(and visitors) showed up because being able to suck on candy and chew gum(can't eat anything with ng tube in place) relieved some of the ever-present nausea. 

After about 4 candies, though, my diabetic taste buds can't handle the dense sugar in Jolly Ranchers…back to ice chips...