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

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

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

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

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

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...

Day of Surgery

At 12:55, it's time to go! I'm excited and scared and eager and nervous and dizzy. I go over in my head to be sure I've said everything I had to to anyone I had to, just in case. In the pre-op room, there is...more waiting. The nurse laughs at me when I ask if I can leave my pants on for surgery(I get cold really easily.). More waiting, but not for too long, less than an hour. The clock ticks get louder and louder the longer I am there. 

The surgery is over now, and I am groggy. I can't lift my head and can barely open my eyes, but I know I'm awake. There's a nurse near me who is talking a lot to somebody and she seems really busy. It takes me a while, but eventually I realize she's talking to me. I can't understand her, but she's definitely talking to me. I'm not sure how long I was like that, but after a while, I can understand her...well, a little. She is telling me the surgery was done and I am in recovery. 

I can feel tubes and tape on my face but I'm not allowed to touch. I really feel like gagging on the ng tube that is down my throat. An x ray tech keeps coming back and taking X-rays. Ugh. After one x ray result, the surgeon comes in and says the ng tube is not in the right place and needs to be pushed in deeper. I do not have the ability to protest. He forces the tube deeper. Ugh. I am exhausted but the X-ray tech keeps returning and there's lots of people moving around in the recovery room. 

I do not know how long I was there. I know by the end, I am the only patient left, and I am coherent when carted off to a regular hospital bed. I'm tired and feel like gagging all the time - this is unsettling. 

I think I am happy, but I'm too tired to know for sure.

October 3, 2012

It's Wednesday, and it's afternoon so I'm performing my normal taxi service, picking up kids, dropping them at practice, preparing quick dinner, and everyone eating on the run. Transplant Center calls. I am the primary recipient eligible for organs from an almost-deceased donor. He was 38 years old, healthy kidneys and pancreas, and he died from a brain hemorrhage. The nurse tells me he had a history of pot smoking, but that there is no effect on these organs. Will I accept his organs? Because I obviously have nothing else on my mind, I briefly wonder if in the future I'll be up late with the munchies because of my potentially new pot smoking organs. YES, I'll accept the organs. 

What next?

Cross match tests. The nurse tells me to eat immediately and then nothing else to be sure my stomach is empty for potential surgery. I decide the best thing to do is to eat the least healthy food I can think of as it could be the last food I eat for a while. My son is shocked and excited when we pull into Kentucky Fried Chicken parking lot. He gets to receive the trickle down benefits of my "last meal" choice, and he is so excited for fried chicken and French fries. I order the worst possible meal for a diabetic, a KFC mashed potato bowl. It's mashed potatoes, gravy, chicken nuggets, and corn. And, as luck would have it, there's a water shortage today and the only drinks they have are regular, not sugar free, canned sodas. My son enjoys his fried food and Sprite. I top off my meal with a very thick, sugar-laden Dr Pepper. I devour all 1000 calories and 134 carbohydrates without blinking. I don't forget to pick up more unhealthy food for the kids I've yet to pick up. 

I start the countdown process again, call kids' dad, he'll take over after school tomorrow. I let my employers know, and this time, there's a lot more that needs to be taken over in my absence. Ugh. I pack the kids' bags, get my stuff ready, and, of course...WAIT. The house is clean, all laundry is done. I can't find anything else to keep me busy, and it's only 10 pm. No call yet. I still can't sleep, and I try. A lot. I refuse to start dialysis tonight as it feels like I would be giving up on the potential call. Emotionally, I can't afford to do this now. I think I drifted off a few times, but I was wide awake at 4 am when the nurse called. 

"Michelle? At this point, you are eligible to receive the organs we've checked via cross match. Are you able to come to the hospital right now?"

YES! I kiss my daughter goodbye, remind her how proud I am of her for getting her brother up and on the bus in the morning, and head off to the hospital for a kidney and pancreas transplant. On the drive, I'm figuring in a few hours I'll be out of surgery and living a life without kidney disease or diabetes...Yay!

An hour an a half later, registration takes an amazingly long time at a barren hospital at 5:30 in the morning. We are given terrible directions on where to go, and end up in the pre-surgical check in(makes sense, right?), but that was wrong. We eventually find our way to my room on the 10th floor. I have to wait in a hospital bed.

It seems so strange to me as I don't feel sick; I feel excited. Although the nurse on the phone made it seem important that I come right away, no one at the hospital shared that same sense of urgency. 

Eventually, a nurse came in and suggested I put on a gown(There's nothing like a hospital gown to make you look sick.). A resident came by and asked some health history questions. An hour or so passed. I was carted off on a stretcher for a chest x ray. More hours passed, just waiting. The resident came back and asked some more questions. A tech took some blood. More waiting. The surgeon came, told me we wouldn't get started for a few more hours...geez. I signed a bunch of paperwork and...waited. On the surgeon's second visit, he let me know, by the way, we'll be removing your appendix too, as it gets in the way...hmmm. And, surgery is now scheduled for 1pm.

Practice Run

Mid-September I get a call. I am secondary recipient, but this is a unique situation. The donor is an 11 year old. They give me some details and want to know if I'll accept the organs. I am shaken. I had never considered getting organs from a child who died, and this is tough to wrap my head around.

The nurse convinces me to accept and there's a good chance I will be selected as the recipient has to be relatively small (because organs are coming from a child) and a lot of diabetics are larger than I am. With mixed emotions, I am hopeful. I get to the hospital quickly, give blood for the final cross match and the nurse tells me to go home and wait, that I should get a call, yay or nay, during the night. (Cross match tests take 6 hrs to complete.)

So, I go home and start setting my plans in motion. Call kids' dad, let him know he'll potentially be taking over their care after school the next day. Talk with my bosses, share schedules and responsibilities. Oh yeah, call my dad! Pack bags for the kids, don't eat any food or drink any water and WAIT. Midnight comes, no call. I decide to perform dialysis that night. At least it occupies me for 15 minutes to set up. 2am, no call. Finally, at 4:30, I fall asleep.

5:30am phone rings. Nurse tells me that the organs have been successfully placed with the primary recipient. Exhausted, I text everyone to let them know. Sad for me, congrats to the primary recipient. I'm still up there on the list.  :)

CA trip

In June, I got news that my step mom had been diagnosed with ovarian cancer. She quickly had a hysterectomy and lots of other stuff removed, but she was really struggling. My dad said it seemed like 2 steps back for each 1 step forward.

In August, he called to tell me the most disappointing news; she had decided to stop any life saving treatments. I couldn't handle this news; I was scared and sad and hurt and mad and disappointed and confused. I packed up the kids and we left for California to say goodbye.

Unfortunately, we didn't make it in time, and she passed away while we were in flight. This was a lot to take in, my daughter was shaken, and my son was oblivious. We spent 2 weeks with my dad, helping with arrangements, keeping him company, and generally keeping his house from being quiet.

My dad did such a great job, he handled everything so well.   Sometimes, I'd get concerned because he'd just blank out for a minute, but this was short-lived.  We saw lots of family and I was glad to be there, albeit under unfortunate circumstances. I spoke at the funeral and my daughter stepped up and spoke and the internment. I was very proud.

On the health note, I learned plenty about traveling with medical equipment and just how cumbersome that can be.  Call ahead, tell everyone who'll listen what you're doing, and show up extra, extra early to the airport. Do not take no for an answer ever.

Once in CA, I continued dialysis.  On the third night, while at dinner, I noticed my catheter was leaking and had a tear in it. Ugh! Trip to the emergency room, round of antibiotics, argue with the ER doctor who was sure I'd need catheter replacement surgery in the morning. I wasted way too much time fending off the doctor's hard line that my situation required emergency surgery in the morning.  He lectured me on the risks, medical, financial and personal, of leaving against medical advice. I hard-lined him right back.  I searched on my iPad and showed him there's a splicing kit and it could be repaired WITHOUT cutting me open. Five hours later, I was released and had the set spliced at a local dialysis center in the morning.

Catheter Revision and Good News :)

I had PD catheter revision surgery.  The surgeon let me know that omentum(fatty tissue) had formed over the end of my catheter and was completely blocking access into my peritoneum.  He removed it, cleaned it out, and moved the catheter to a more optimal location.

After about 3 weeks of hemo, the PD catheter is ready to go. And it works great.  Only now, it really hurts when the cycler drains, like it wakes me and I double over kind of hurt. My nurse believes its because of the new location and changes my cycler program to tidal(it only completely drains and the beginning and end instead of 5 times),  This helps - now I only have double over pain twice a night instead of 5 times…This sounds sarcastic, but it is so much better.  The machine barely alarms, I sleep through the night mostly…I am pleased.

More good news: I get the hemo cath removed and my chest starts to heal again - there is light at the end of the tunnel

More good news: I have been called twice as secondary recipient for kidney-pancreas organs.  Both times it didn't work out for me; it went to the primary recipient, but this means I must be near the top of the list.  I've got to be sure to answer my phone EVERY time it rings.

Hemodialysis again :(

Not me, but here's what a perfect chest cath looks like...

So I had the hemo cath placed 2 days later.  I was so worked up and anxious. I looked at old pics of when I first had the hemo cath, hoping it would help, but it only made my painful memories ring truer. I sat and cried in the waiting room as an elderly woman who just finished the procedure cheerfully walked out with her walker. I was shaking and muted as I lay in the stretcher while the nicest doctor I have ever met calmly talked me through how everything was going to be fine.

He was right.  They gave me anesthesia and I counted backwards from 10, and that's all I remember from my catheter placement surgery.  When I woke up, I ate some crackers, drank some juice and went home.

I started hemo dialysis the next day.  I still can't manage to get through a session without my legs seizing from cramps, my blood pressure dropping and feeling dizzy and light headed.  And, I'm angry that I have to be there in the first place.  The nurses and techs are nice, but I simply resent being there at all.  In 2 days, I'll have my revision surgery and will learn how long before I can resume PD at home.

Dialysis is a temporary solution

Life on peritoneal dialysis almost becomes routine, but it does seem like there's always something.   My iron level is too low, running out of supplies, power out for multiple days, but it is all survivable. In June, I went through a horrible, scary period where my blood sugars kept dropping, without explanation. In a period of 2 weeks, the paramedics were called for me 4 times because I was incoherent.  After recovering from one of the episodes, a friend asked me, "Can you keep this from happening again?" I couldn't. I was scared.  I had children to care for and no answers.  Asking my nephrologist and doctors in the hospital wasn't helpful; they said they didn't know the diabetes aspects of it.  I saw an endocrinologist who said the only way to stabilize was to get a continuous glucose monitor and an insulin pump, but she still couldn't tell me why it was happening. I was frustrated that to keep myself alive, I was expected to be an expert on both diabetes and renal failure, but none of the trained doctors treating me were. Ultimately, I was grateful to get through every day.

While my blood sugars were all over the place, I was having more and more trouble with the dialysis cycler at night.  I got very little sleep as it was constantly alarming CHECK PATIENT LINE and LOW DRAIN VOLUME.  Often I couldn't get it to stop alarming, and I had to simply shut it off.  Somehow, through all this, my dialysis adequacy numbers stayed within range, but I was exhausted, and, again, just got used to being tired all the time. Eventually, I stopped being able to drain at all.  Nothing would come out and nothing would go in.  I tried manual exchanges, it worked for a couple days, but ultimately nothing.  Something was blocking my catheter.  My nurse told me I was going to need catheter revision surgery to diagnose and fix the problem.

Getting a consult appointment with the surgeon took over a week.  At this time, I have not had a full round of dialysis in about 2 weeks and I can feel it.  I do everything I can not to toxify myself any further. I eat very little, no meat(and I'm not hungry anyways) and I am trying to hold on and stay healthy until I can get my catheter repaired. I look up what happens if you stop dialysis, and the answer is clear: you die, within days or weeks.  I am running out of time. While I am waiting to see just when the surgeon can actually do my surgery, my nurse calls me and tells me I need to have surgery to get a hemo catheter placed. I break down at the thought of this.  A hole in my chest again? Last time the anesthesia did not work and I remember the radiologists, scared and apologizing, and the intense, unbelievable pain. I argue with her and let her know I can hang on a few more days, but ultimately, the PD catheter surgery will have to heal(maybe as long as a week) before I can use it/do dialysis again…I know I don't have that kind of time.

Settling in on Peritoneal Dyalysis

Manual Dialysis Exchange

I have been on overnight peritoneal dialysis for  four months now. That means I hook up to the cycler for about 9 hours every night, no more manual exchanges during the day.  It's better than manual exchanges, but it's still majorly inconvenient. I hate it, but I am appreciative that I am alive.

Some days/nights are better than others. Some nights I get very little sleep at all; the cycler alarms repeatedly go off "CHECK PATIENT LINE" and there is nothing I can find to adjust.  The tech support folks haven't always been able to solve it either.  Twice, under their direction, I have had to simply halt the dialysis for that

Automated Overnight Peritoneal Dialysus

evening. My nurse thinks its positional; I am experimenting with different ways to position the catheter and tubing, experiencing small improvements, and this pleases me.  Another alarm I repeatedly get: "LOW DRAIN VOLUME"- this one I am unsure about.  I have yet to figure out a direct connection between eating habits(like too much salt) and low drain volume.  Sometimes I do feel dehydrated though.

Its still a struggle to drink adequate amounts of fluid. (I have spent years limiting my liquid intake and it feels almost instinctive).  Same with protein intake…I have trained myself to avoid it and I even don't enjoy meat very much anymore.  My dietician keeps giving me ideas on how to increase my protein intake(eggs, peanut butter, etc) because my albumin level is too low. Overall, my lab work has been consistently good, and I am trying to take it all in and learn what each level is and how it affects me.  It's a big, never-ending balancing game to play.  I'm hoping I wont have to play it for too long. I have had a night where I discovered my transfer set disconnected from my catheter, a scary night, lots of antibiotics, but no infection, very glad.  Also, strangely, I have had a few days where the transfer set minicap simply comes off, causing more fear of infection, but everything thus far has been fine. This contamination has caused me to have to skip dialysis for a few evenings, until I could get a replacement transfer set.  All of these issues have reinforced to me that dialysis is a work-around, a temporary solution that needs to be monitored very closely, again, hopefully not for very long.

That being said, the next goal is transplant!  I've had my first introductory transplant appt.  According to the surgeon and case manager, I am a good candidate for both kidney and pancreas transplant; more good news. And…the case manager told me their average waiting period (once officially on the LIST) is about six months! I need to get some routine tests done, get cleared by a dentist and cleared by a cardiologist(because of previous heart attack).  Most of it seems straight forward, but I am most concerned about the dental clearance, my teeth will need plenty of work to be ready for the immuno-supresant drugs post-transplant. And I do not have dental insurance. Looking into community based programs provides hope but lots of waiting…been told there's a 3-4 month waiting period.  For once, maybe I can be glad to have ESRD…it might bump me up the wait list….might…I am going tomorrow to turn in documentation and plead my case.  Again, I am very hopeful and wont be deterred. Six months? Just a blip on the screen of my life.  Real life continues,  my daughter's in 8th grade and has started taking dance, my son is in preschool and I'm considering potty training, I am 37 and busy…I refuse to live like I am sick.

Home and Hemo

So I am home, and the days get kind of blurry.  My body still feels weak and my mind is racing all the time, getting exhausted with the tons of ideas going through my head while my body moves painstakingly slowly. I have to go to the dialysis center three times a week for hemo dialysis.  I hate it. Everything I read says it should be painless, but every time, my blood pressure drops, I get dizzy and I feel like I am going to pass out.  I am so confused as the nurse tells me to have some soup, that I need more sodium to stay coherent…But…I am on dialysis to remove sodium and toxins from my blood…and now to fix their "solution" I have to put more toxins and sodium in...none of it makes any sense to me.  I try to get answers from the techs and nurses, but they are less than helpful. 

I resort to online research, and learn a little more, but I still can't seem to make it through a 4 hour hemo treatment without needing half a day to recover afterwards.  I dont understand how all the elderly people I see in the center do this for years; I dread going to the center. The silver lining: my pd catheter wound is healing well and I begin training for at-home peritoneal dialysis. 

The first step is manual exchanges.  It's relatively simple, but still very time consuming.  I have to spend abut 30 mins per exchange, 4 times a day.  Logistically what this means is I have to be in my bathroom at 8am, at 12noon, at 4pm, and at 8pm.  The exchanges are not difficult, but adhering to the schedule makes getting anything else done almost impossible. I really try to meet the exchange requirements and re-start my life, but it is a challenge.  I end up falling short on both; I often only get 3 exchanges done in a day AND haven't yet been able to reclaim my responsibilities.  I am frustrated at needing the help, but especially grateful to those who stepped up and helped me for such an extended period of time. 

I rejoice in small accomplishments: completing all 4 exchanges in one day, getting my son to the bus on time, remembering to take all my prescribed meds. My blood pressure is well controlled, my energy is building, I'm not scared all the time.  

Surgery and surgery, and...more surgery

I spent a total of 6 days in the hospital.  The day after my first surgery, I had my first hemodialysis treatment.  Hemodialysis means they remove a ton of your blood, filter through a "washing machine" where it removes the toxins from your blood(acting like an artificial kidney) and then return your own blood to you. Pretty exciting in theory, but it was relatively uneventful the first time.  I slept through much of it and had a low blood sugar episode at the end. 

I felt exhausted from the recent events, but friends came to see me that afternoon and commented that I looked better than I had in months.  There was pink in my cheeks and I even noticed that my face looked less hollow and less pale.  I was excited to start feeling better; I began imagining all the things I'd do with my soon-to-arrive energy.  

Then my doctor returned and let me know, surprise! The catheter surgery that I'd just had was only emergency/temporary and I'd need a second surgery, for a perm cath, on the next day. What?! I was really, really upset….to think I'd gone through the hellacious nightmare and it was only a temporary placement.  I was also scared to go though surgery again, given the terrible experience the day before, but it was necessary, and I went through it.  

As I was being prepped for the surgery, I saw Omar, the radiologist who had so much trouble with my placement, and I could hear his "I'm sorry"s echoing over and over in my head. I asked the nurse if he was going to perform the surgery and she assured me it would be another surgeon. Awesome. I skated through this time, under local sedation, didn't feel much at all but I was awake for the whole thing. I got to shower that evening, a simple pleasure I had recently missed.  The next day I found out I wasn't supposed to shower as it was too risky with the open line to my heart. I was glad to have gotten to shower and escape unscathed. I am planning to go home in the morning.  

But my doctor has other plans…next morning he lets me know I've been ok'ed for the peritoneal dialysis catheter placement and it is best to take care of it while I am still in the hospital.  It takes a lot of discussion for him to convince me; I am exhausted and really, really done with my hospital stay.  I am frustrated with the lack of understanding, rigid treatment and nonexistent communication regarding my fluctuating blood sugars and feel like I can do a better job of monitoring myself at home. Ultimately, I stay another two days, all the while receiving in hospital hemodialysis and finally have peritoneal catheter placement surgery on day 6.  I go under general sedation and it goes without a hitch.  I don't even remember a doctor following up with me afterwards, but I went home that evening. 





Although I am nervous about what the future holds and what my limitations may be, I am excited to be free of the hospital. After the nurse wheeled me out of the exit doors, it took all my restraint to keep from skipping to the car.