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.

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.