Hemodialysis again :( (Oct 2011)

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 (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.

Home and Hemo (Apr 2011)

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 (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.