Celebrating My 2 Year Transplant-iversary

The Commercial Appeal, Aug 25, 2014

Mary Rice...An online transplant buddy posted  this quick clip about Mary Rice. I was overwhelmed with emotion. I felt the moisture on my face as I teared up, the glare from the monitor warming my now flush cheeks. I wiped them away, puzzled at myself.

Mary Rice was 94 years old when she died. She was diagnosed with insulin-dependent diabetes at age 9 in 1929, only 6 years after the first human was treated with insulin. She lived for 85 years with a debilitating chronic illness. 

85 years? I am amazed, impressed, inspired.

I lived for 22 years with diabetes.
85 years was incomprehensible. Until now.

Not just impressed, I am grateful.
I am grateful to know she existed, she persevered, she triumphed.
I am grateful that she's real.
That she's not a pipe dream that doctors allude to when you ask, desperate for reassurance, "So, what's my life expectancy?"

Other transplant recipients commented on Mary's inspiring life. Amid comments from other members, there was one that struck me. Another kidney pancreas recipient, a woman whose name I didn't recognize, praised Mary Rice as an inspiration, but said she herself didn't feel like one.

This also festered in my brain as I settled back in the chair. Now the monitor was a spotlight, forcing my inner devil's advocate to prove her wrong.

Internally, I echoed her thoughts. I felt them.

Externally, I disputed her claim, spouting off reasons, monologuing with my hands into the light. You, self-doubting commenter, are inspirational.

You're strong
and resilient
and resourceful
and motivated
and alive
and an example for every person battling chronic illness.

None of these reasons take my knowing the woman at all. I just know, because I've done what she has, and I'm surviving. And tomorrow brings more surviving.  There will never be a day where we can coast and just know that everything will be fine.  There will always be a pending blood test, an unexpected tenderness in your abdomen, a cold sweat when you hear that your co-worker has the flu, an exhilarating annual checkup when everything(YES, EVERYTHING) comes back within normal range.

And these types of battles are not for the weak.
These types of battles can even break the strong.
That's why we are an inspiration.

We are here and alive and looking forward to tomorrow and whatever it may bring.
We are an inspiration to everyone who has suffered diabetes and kidney failure, and to people with chronic disease of all kinds.

By our survival alone.

As of today: (http://optn.transplant.hrsa.gov/)

123,855 people need a life-saving organ transplant. Every day this number grows.

Becoming an organ donor can save up to 8 lives.
Becoming a voice, sharing your story,  can affect infinite amounts of people. Or maybe just one scared, sick woman who can't imagine being a survivor. 

I want every person with diabetes and end stage renal disease to know I, a scared, sick woman who couldn't imagine being a survivor, made it.
That they are not forging out alone into an unknown world where no one has been before.
There are survivors, there are success stories, there is inspiration.
There is me. 

So, if you're a transplant survivor and you stumble or doubt or wonder if the next challenge on the horizon is the one that's too much for you, don't forget who you are, where you've been and what it all means.

                      My name is Michelle Buscema.
Today, October 4, 2014, is my 2 year transplant-iversary. 
                      This is how I’m celebrating.
             As of today: 17,956 page views to my blog.
                                    Join me.
                 Speak up. Share. Be the inspiration.

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.

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.

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.

Kidney Failure takes over (Mar 2011)

The physical debilitation came on slowly; I didn't realize it, or maybe I purposefully ignored it, not wanting to admit that I was weakening, but I was.  I ate very little, trying to avoid toxifying my system and because, frankly, I wasn't hungry ever. I continued doing the things I had to do, but little else. I got to the point where I really had to work up the energy and strength just to walk up the stairs. My stomach started hurting, I was nauseous and dizzy one morning, so I gave in and called my nephrologist.  

He was clear, "Go to the ER today, check yourself in and we'll get you on dialysis tomorrow." I was still in denial, and I thought he was overreacting.  He told me I needed a chest xray to be sure I didn't have pneumonia. I resisted but eventually went in. In the ER they drew my lab work and were shocked at the toxic levels in my system.  I started feeling really badly, realizing the seriousness of my situation.  I also understood that there was nothing they were going to do to help me.  

The surgery my doctor wanted me to have(peritoneal dialysis surgery) would take 2 weeks to heal and I wouldn't feel any better in the meantime. My body was seriously deteriorating.  The doctor explained to me that I was at risk for so many other things, not necessarily related to my kidneys, but rather because my body was so toxic.  My internal organs were getting damaged, my red blood cell count was like an AIDS patient.  

The next day, the doctor talked to me about emergency catheter surgery. They would place a line in my chest that they could use immediately. No one was there with me to discuss it with the doctor, but I knew I needed to do it.  I went in to the surgery alone, and it was a nightmare.  

The anesthesia didn't work correctly, and I felt everything.  The two radiologists kept consulting each other and I had never heard so many "I'm sorry's" ever.  I felt the burn of the anesthesia each time they replaced it, but I never went numb.  I cried a lot, but I was scared to move as my chest and neck were exposed and open. I could feel the tears running down the sides of my face and settling in my ear lobes.  As I got more and more scared, I was feeling stifled under my mask and started to hyperventilate…I had to calm down.  

I thought about watching the sunset, smelling a fire, my son falling asleep in my arms…I think it worked.  The head surgeon came in, and told me bluntly, "This is going to hurt, Michelle, but if you move, it will hurt more and we'll have to start over."  I was so glad for his calm demeanor. He was right; it hurt, a lot.  He had to push three times and each time felt more excruciating. He told me the catheter was in.  

One of the radiologists - (who I'm sure was introduced to me as Dr Somebody), the one whose friend kept saying, "Omar, stop! Omar, it's not working..." - sewed me back up. I know this hurt too, but relative to the placement, it was a breeze, and I was emotionally and physically burnt.  I don't remember much more of that evening.  I know my parents arrived and my daughter came to see me.  I remember trying to fake like I was feeling ok while she was there, but I don't think I was especially successful. I was determined to be a model of strength and flexibility to her. I could handle anything.

Initial News 2010

So…I'm starting my blog.  I've looked and looked and have found very little information available about other people's experiences with kidney failure.  So here's mine, and, as usual, I am late…my doctor let me know my kidneys were starting to fail 4 years ago when I was pregnant with my son; they were functioning at about 70%.  Two years later, almost 60%…I made the suggested changes, eating very little meat, drinking less than 50 oz of liquid a day, and I quickly and easily adjusted to the changes. 

Last winter, my doctor(not his nurse or a receptionist) called me to say he had bad news after my most recent lab work.  He wasn't explicit, but he wanted me to come in and retake the labs as he hoped there was an error.  There was no mistake, the lab work indicated that my kidneys were functioning at 13%. He had never seen such a quick drop in performance. He explained to me I had end stage renal disease(ESRD) and that I would be on dialysis within the next 12 months. I searched for ways to repair my kidneys or slow down the process, but the end result was inevitable.  I lived for next few months in a weird, psuedo-aware-but-not-accepting limbo. 





Resentfully, I started the process to prepare for dialysis, learning about different types of therapies, how I would live, what I would need, and trying to find out what to expect. My life continued without any grave changes. I still worked, I still cared for my kids, I still got speeding tickets, I still enjoyed roasting marshmallows. But I started to feel the weight, just emotionally at first. I worried about sharing the news with the people who cared about me, how it would effect them.  I dreaded telling my father; I hated giving him news that made him feel helpless. I couldn't think of ways for people to help me. People told me how strong I was, but I didn't feel that way. 





I felt damaged and dependent. I felt alone and scared.