Tuesday, August 30, 2011

Trying to Keep Calm and Carry On

I have a lot of turmoil inside of me, a lot of things I want to write about but can't seem to find the words. It's been a pretty shitty couple of weeks (excuse my language but that is the only word that will suffice at present) and though great things are coming up, and some great things have happened recently, I feel in crisis. I am coming to the end of my rope with this kidney saga. Dialysis for 20 months is bleeding me dry- literally and figuratively- and the new graft in my arm is not helping me feel better about it. I do pretty well considering my situation, but I am struggling right now. I just need a kidney, that's what it boils down to, but I don't seem to have anyone on my side at transplant to fight for that to happen. I know a transplant isn't easy- I've been there before- but it was better than life on dialysis. And I know life isn't easy. It isn't supposed to be that way or it wouldn't be considered a test. I've had a pretty rough adult life, and I'm ready for a break. Please, can I have a break?

My saving grace at this point is the people I surround myself with. I have such a loving and caring family who would go to the ends of the earth and back for me if I needed it. I couldn't ask for a person in my life better than my sister Liz. I know she'd have given her kidney to me 19 months ago if she was still a match. I hold her in the highest esteem and am so proud to call her my sister. My very best friends Stephanie, Mehgan, Lacey, and Jamey never cease to amaze me with their support and love. Even though I don't see most of them as much as I'd like, they do wonders for me and I can't believe how lucky I am to have them in my life. There is another person, who has come into my life more recently. And though I'm not sure where our friendship will take us, when I close my eyes, all I see is infinite possibility through the sparks.

Tuesday, August 23, 2011

Saltwater Tears

Caution: This is a diatribe, a soapbox I'm standing on, a harangue, if you will.

Today I was "reactivated" on the kidney transplant waiting list. I should be ecstatic, right? Nope. I'm mad. I'm mad for several reasons. A) I shouldn't have been listed as "inactive" in the first place and B) it took 35 days for the University Transplant program to reactivate me after my nephrologist recommended I be reactivated. Why? That is an excellent question.

Mid-way through June I received a call from my dialysis NP saying I needed to go directly to the ER because my blood cultures showed I had an infection. I needed to have my dialysis catheter pulled and be started on antibiotics right away. It felt like one of those Monopoly situations- "PROCEED directly to JAIL. DO NOT pass GO. DO NOT collect $200".

I went to the hospital despite feeling fine, failing to present with any symptoms, and having just returned home from lunch with friends and a badger encounter in downtown Salt Lake City. At the hospital I sat around until the next day, when the doctors treating me finally put a plan into action. I had a TEE done (of which I was told everything looked just fine on my heart) then some dialysis and finally the feared catheter pulled. Some more blood cultures were drawn to determine my fate: if they came back positive I'd have a temp cath placed, negative I'd have a perm cath placed. I was to report back to out-patient surgery first thing Monday morning.

The cultures were negative. A new permanent catheter was placed, but, my Vascular Surgeon Dr. Sarfati said, it is not a viable long term option. A vascular mapping of my left arm was done to determine if I had any veins that would work for a fistula. There was one vein the doc thought would work. It would take 2 surgeries and 3-4 months for the fistula to be usable. I'd been resisting getting a fistula for 18 month, knowing the poor state of my veins would more than likely not allow for a successful fistula.

But I was running out of options, so I gave in.

Mid-way through July Dr. Sarfati performed the first fistula placement surgery. It did not go well. In fact, the whole thing turned into a debacle and the only thing I left with was a scar on my elbow and 2 kilos of fluid in my blood. Neither the vein or artery in my arm would sustain a fistula. Yep, I told ya so.

The day before this surgery my nephrologist determined I was done with my antibiotic treatments and could be reactivated on the transplant list. It had been a month since the "infection" had presented itself and Doug had so willingly placed me inactive on all the lists. The brass in the transplant program were not convinced (Heaven forbid I should actually get a kidney) and so as is their MO, placed several more hoops for me to jump through before they could feel okay about placing me back on the list. I needed to go see an infectious disease specialist who, without knowing me, my case, or my history, would have the final say in when I could be reactivated.

Naturally she only works Mondays, so it was several weeks before I could get in to see her. August 1st was the magical day I would see Sarfati to map my right arm for a possible fistula placement and see Dr. Hanson about my phony infection. Dr. Hanson spent 1/2 an hour with me and determined that protocol said 6 weeks, not 4, of antibiotics were needed so I needed 2 more weeks of treatment and more blood cultures before I could be considered cured.

This was bullshit. Nothing about me ever follows protocol and it certainly isn't going to start now. All the blood cultures I'd had drawn for the last 6 weeks came back negative. I'd had almost 7 straight weeks of the antibiotic already. Let's do another TEE and draw blood cultures today. I'll march right down to the lab. Nope. Sometimes "clumps of platelets can form on the valves of the heart and look like an infection". So wait a sec, this "infection" for which I've never had a symptom and has caused me months of pain and 2 surgeries could have been platelets??? REALLY? Fine, then let's do blood cultures today. Nope. Protocol says.... really. It didn't matter what I said to Dr. Hanson. Protocol was what mattered to her. Patient cases aren't individual in her office, someone once came up with a little something called "protocol" and hence it has become the law. I repeat, bullshit.

But that was the word and I had no choice but to do 2 more weeks of antibiotic and more blood cultures. If everything came back negative, I could be relisted. Well the cultures did come back negative, just like I said they would. And for reasons unknown to me, it takes 6 days for a blood culture to be determined truly negative, whereas only 2 for it to be positive. It only takes me about a second to turn negative. After missing 3 months of the paired donor exchange matching and 2 months of possible cadaver matches, I'm active on the list again. Yippee.

In the meantime, Sarfati mapped my right arm and decided to place a graft in my forearm. Of course this couldn't be done until I finished the loathsome antibiotics. So on Tuesday last I had my third surgery in 2 months for dialysis access. It was a success, so far, but my right arm is about the size and temperature of a turkey leg, with a purple-ish hue that runs from wrist to bicep and 2 incisions in between. I can feel. and see, the graft underneath my skin. I can only imagine what it will look like when the swelling goes away. It's a damn miracle that I can even type right now because the pain and swelling have been prohibiting me for a week. I am not left handed.

After I got off the phone with my transplant coordinator this afternoon I laid in my bed and cried. Not tears of joy, but big saltwater tears of frustration. I generally have a pretty good attitude about my life situation, but this has been a cruel, cruel summer and I felt sorry for myself. The pain in my arm, the missed opportunities, the scars on my chest, the frustration over the seeming incompetence of the entire University Transplant Program were overwhelming. I feel like I'm being punished for something. But I don't know what. And I don't know why. And I don't know how to rectify the situation.

And I think about people who have it a lot worse than I do... about my old boss whose husband was shot 4 times in a mall with a sawed off shot gun and now lives life in a wheelchair. Her entire life was shattered in a second, everything changed, everything became difficult. And about Bethany Hamilton who, at age 14, lost her left arm to a shark on the eve of her professional surfing career. She got back on the board.

I feel defeated right now, even though I'm back on the list and the swelling and pain in my arm are slowly subsiding. I feel beaten. I need to figure out how to get back on the board.