Practice Run (Sept 2012)

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 (June 2012)

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.

Dialysis is a temporary solution (Fall 2011)

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 (Jul 2011)

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.

Surgery and surgery, and...more surgery (Mar 2011)

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.