THE CALL PART TWO

Literally, this is what I writing shortly before 11:40PM tonight…

Just a vent before a scheduled 5-day workweek.

Dear Universe, please engineer a situation that provides me with a donor kidney from the Charlotte area ASAP.

This doing hemodialysis three times a week and working full-time is getting really old. Every week is just a game of survival. Thriving is not an option. I’m maxed out in what I can do. The last prime years of my life are evaporating.

Even getting the call from Charlotte doesn’t solve everything. I got to avoid rejection. I’ve got to avoi…

Well, I’ve got to avoid infection. I’ve got to cope with a bloated face indefinitely. But all things I’m ready to do right away, and I got that call from Carolinas Medical Center, and now it’s just a two hours wait to see if I make the three hour drive.

This is stunning and ridiculous and amazing and…I’ve got a lot to do….

Will update this thread as time allows…

12:53 AM – OK…basically packed. Contacted potential temporary pet guardians and sitters. And now waiting. Waiting and hoping this is not another dress rehearsal.

Unable to truly digest the risks and fears and benefits involved in this procedure. I imagine I will do ten hours of thinking on the three hour drive down, should I actually make that drive.

1:14 AM – WAITING…BBC World News overnight…riveting…

1:25 AM – BONUS PET PICS!!!

Aremid 2011.06.25 3

Herman 2011.06.25

1:56 AM – Morbid curiosity has set in. I am reading the Charlotte news web sites. There have been a couple of tragic deaths in the last 24 hours. Waiting is excruciating. I know that a false alarm will not be the worst thing in the world…

2:20 AM – No call yet. 10 minutes until the estimated call-back time. Either it’s good news and I load up the car along with Herman and his stuff so I can drop him off at a friend’s, and I head out of here for a month…or my heart sinks and gut contorts, and I try to figure out how to absorb the disappointment….2:22 AM….

2:50 AM – OFF TO CHARLOTTE!

Divorcing Duke

I quit working there back in November, and now I am symbolically leaving their kidney transplant program.

I have now officially had my 1169 days of “waiting” on Duke’s transplant list transferred to the medical center that’s in the big city in the southern part of the state. Given the average seven-year-wait for B blood-types at Duke, having zero days accrued leaves me with little chance of getting a second call from them.

The wait may only be slightly less on the new list, which I’ve been trying to get active on since October 2009 due to their presumably shorter wait-times (that have grown in the interim). But Duke lost me in recent months with their aggressive game of blame-the-patient. Blame me for the insurance problems that prevented me from receiving a transplant back in March. Blame me for my lack of civility with a surgery intern following my January surgery.

[Redacted additional details that can have a life on Facebook. Why risk completely burning bridges with Duke?]

I’m extremely disappointed that I will not be getting a kidney transplant at Duke.

I am somewhat optimistic that I’ll be getting one somewhere else soon* enough.

*soon–Any day now or another 2-3 years…who knows…


Also, I am not divorcing Davita just yet. Too much stress involved in changing. I was given my time to vent. I hope I was heard. Now I will just hope for the best.

CIGNAture Service

Oh, CIGNA. More crap from you. “Welcome to the CIGNA HealthCare Transplant Case Management program. Thank you for taking the time to talk to me about your health care needs. As we discussed in your call…”

We didn’t discuss jack, because I didn’t return your call…

“As your Transplant Case Manager, I will work with you, your doctor, and other health care providers to offer support assistance. I can also help you access information about treatment options, provide resources on your condition/treatment…” Like what? Not getting a transplant? “I’m also planning to mail you educational materials about treatment options that may be available to you…” I’ve got a *&#&$* file cabinet full of “educational materials”. Please don’t kill any trees by sending me anymore kidney disease or dialysis or transplant pamphlets.

He actually needs me to sign a release (“the Case Management Consent form we talked about” that we didn’t talk about). Not signing it.

After a year-and-a-half, I’m still trying to become active on the transplant list at Carolinas Medical Center in Charlotte. Most recently, the delay has been that CIGNA has asked for further tests before they’ll agree to cover a transplant.

CIGNA is getting in the way of me getting a transplant.

“I can…support your individual choices for health care”.

I choose to get a transplant. Now leave me the *&#$ alone.

(I basically bitched about the same thing just a few months ago, when I had BCBS of NC).

To be clear, I am really fortunate to have an awesome health care plan, but that’s due to the generosity of my employer and has nothing to do with the company that administers the plan. I trust CIGNA about as much as I trust car salesmen.

My kidneys as drawn in Microsoft Paint

I saw CT scan images of my kidneys today during a visit with my potential nephrectomy surgeon. I was pleasantly surprised when he told me he could laproscopically remove one or both of my kidneys despite their extreme mass. They apparently have some quite-advanced tools for clamping arteries and other intricate tasks involved in the surgery such that they can get the kidneys out through a tiny hole, so no football-sized incision is necessary.

It was nice to have the surgeon validate what I’ve been dealing with–that I’ve had these massive and ever-growing kidneys causing life-altering pain for two decades. A healthy kidney is the size of a fist. Mine start at my ribcage and extend down to my pelvic bone, from my spine to my abdomen.

I was looking at cross-sections of my body in these CT scan images. Here are Microsoft Paint images, if they were done by 5-year-olds…or by me five minutes ago. The white block represents my spine. I don’t think anyone needs to see my lungs or bowels to get my point.

Normal kidneys:

My polycystic kidneys:

The surgeon says I will immediately be twenty pounds lighter when these are removed. I can’t even image what that would feel like. I know it is unfair to compare this to something I will never experience, but I imagine that carrying twins is a little like that (without my breasts and other body parts blowing up along with my abdomen).

I would like to opt for my heavier, more painful kidney to removed rather than both because my kidneys still have some fluid-eliminating capacity. I would love to have this done as soon as possible.

However, I don’t even know how the new employer feels about me working around my dialysis schedule. It would be pushing matters to see if I could work around a one-month downtime to have this surgery. I’ll hope to have this done sometime in the next year or so. Realistically, a new kidney won’t come along for another 2-3 years or so.

On a related note, a hearty congratulations to my friend, expectant father, and former-PKD and former-dialysis patient Rob, who received a kidney transplant early Sunday morning and is doing well!

August 5 rapid blogging: dialysis

I’ll continue to write relatively little about dialysis, compared to my ongoing tirades about nocturnal dialysis.

I know people would be happy to hear that my new shift is going so much better than the old one. It’s not. It’s going a little bit better. Sleeping at home every night is a big plus. Not starting some of my days cold and sweaty in that place is a big plus. There are a couple of people that I definitely do not miss.

With the new shift, I need to be waking up very early for work; I haven’t quite gotten the hang of that yet. Obviously, I should be getting to bed earlier. On dialysis days, I’ve pretty much exhausted after I leave, so the rest of those days are pretty much shot. Time flies by just as quickly as it did before, which is too quickly.

The hot flashes and cold sweats haven’t gone away. No possible solution on the horizon. Well, I am trying a non-doctor-approved remedy. I’ll let people know if it works. I’ll keep it to myself if it doesn’t. Nothing dangerous. Just tired of nothing and no one helping.

I’ll get my first lab results from the new place tomorrow or Monday, and that’ll give an indication on the efficacy of the new schedule versus nocturnal. I’d be surprised if my numbers didn’t take a hit.

Meanwhile, I am still waiting for a second set of appointments with Carolinas Medical Center in Charlotte to get on their transplant list. I went for orientation in March and a first set of appointments in early July. This is being dragged out far longer than I anticipated, and it’s very disappointing. I guess I’ll need to put in another call to them to see what the heck the problem is scheduling me in.

897 days on the transplant list. Going by averages, I still have another 1476 days to go.

Craigslist for a kidney

I know you mean well, but, no *****, I will not ask for a kidney on Craigslist. I don’t care if Duke would do a transplant from a stranger, although I’m pretty sure they won’t; there are legitimate reasons to have a policy against this. I have an appointment down in Charlotte this week, and I will ask them, just so I know. In any event, I wouldn’t have a good story to tell in an ad, and I’m not going to make stuff up.

It also doesn’t help to read about anyone who’s been waiting for four years, who was “weak and tired from spending nine hours a week in dialysis”. Chances are, I’ll still be in this boat two years from now. I’d like to think I won’t be weak and tired. I can’t afford to be.

However, so your suggestion is not in vain, I will at least post here the link to the article about the woman in Arizona who got a kidney off of Craigslist.

778 days on the transplant list

I tend not to want to think about dialysis or my kidney disease when I’m not actually at dialysis, since I’m actually at dialysis for approximately 27 hours per week. I just want to do a quick catch-up on transplant news. (I don’t know why I feel the need to preface this by saying I’m just banging this out without much thought or editing, but that’s what I’m doing. I suppose I feel like the topic warrants a more thorough review, but I’m just not up for that).

Last week, I went to Charlotte for a day so I could attend an orientation for the kidney transplant program at Carolinas Medical Center. I had been looking forward to getting on the “Charlotte list” because the average wait for a cadaver kidney at Duke (and the three other North Carolina medical centers that share the same list) for my bloodtype, B, is 6-7 years. I had had the impression that wait at Carolinas might be about half. If I applied my two years on the Duke list to CMC, I might have a kidney in just a year or two!

Well, my visit to CMC cleared up any optimism. Perhaps the wait times at CMC had been significantly less at one point, but word probably spread of this, and the wait times are catching up. I suppose I don’t know the average wait time; they say the median time for B is 5 years.

There was all sorts of useful information provided at this orientation on what to expect during the process–what needs to be done to get on the list, what’s required following the surgery, all the meds one has to take for the rest of one’s life afterwards. Duke may have given similar information to me a couple of years ago, but they did not provide a similar orientation session.

However, I already knew that the operation is a major operation, that recovery is kind of a bitch, and that the anti-rejection meds are pain in the ass for the rest of your life. The bottom-line for me was, how soon can I get a transplant in Charlotte, so I can get on with my life?

And the answer of, well, on average (roughly), THREE years (if I apply my two years from Duke), was NOT what I wanted to hear.

Six months ago, I thought there was a chance I could get a transplant by January or Feburary. Three months ago, I thought that transplant could happen in June. A few weeks ago, I learned that transplant would not be happening. I’ve got no other live donor possibilities lined up. Best case, it would seem, I’m looking at at least three more years of dialysis.

I’m just spilling out my thoughts here…not censoring…not caring if I sound ungrateful or feeling sorry for myself…I don’t know how I’ll get through another three years of this. I can’t imagine taking the last six months and multiplying them by six. And my kidneys aren’t going to get any better. There’s a big difference between 8% functioning and 0%. If I actually did have to watch my diet closely and my fluid intake, I don’t know if I could do it. I DON’T KNOW IF I WOULD CARE.

But then there’s the question of, so what if I did have a new kidney right now? Then what? What would I be doing differently right now? What do I want to do with my life? As I’m asked again and again, If you could do anything, what would you want to do? I have no answer to this question. I don’t have a clue. If I had any idea, I can imagine how I might care about taking care of myself and preparing for that day that I get a new kidney.

That’s my venting for the time being.

I’m going to hit the Publish button and feel a little bit better, just because I know these thoughts aren’t solely stuck in the space between my ears.

Here’s where I ask for a kidney

Herman and Toastie 2010.03.13I’ll put a happy face (well, two happy faces) on a pessimistic post. My one strong lead for giving me a new kidney in 2010 is not going to pan out.

I have a non-blood relative who generously and painstakingly went through the required battery of tests of several months. There was reason for optimism late in 2009 when the tests up to that point revealed a decent match. I tried not to think about it too much, but there seemed to be a real possibility that I could have a new kidney in January or February. Then came the insurance mess. Fortunately, that was remedied. If subsequent tests went well, we could proceed with a transplant, perhaps early this summer.

But I learned on Friday that these recent tests did not go so well. Neither of my potential donor’s kidneys are going to be feasible for donation.

And so I am back at square one. Sort of. I am now two years into “the list” for Eastern and Central North Carolina, or the “Duke list”. The average wait for my blood type (B) to receive a kidney from a deceased person is 6-7 years.

Later this month, I’ll be headed to Carolinas Medical Center in Charlotte so I can be listed there as well. I am told that the wait is perhaps half the time of the Duke list.

In either event, my best case remains a kidney from a live donor. At this point, I don’t have any idea where that might come from.

Mom—I’m not going to put an ad on Craigslist. This blog is my ad, for better or worse, at least for now.

Any blood-type will do. If someone isn’t a B but is an O, great! I have a friend who needs an O, and he’s got a friend who’s a B. That’s a cross-match, and Duke will do that.

Anyway, I’m a terrible salesperson, particularly when it’s selling myself, whether it’s for dating or for a job. Why I’m worthy of any living person’s kidney, I cannot answer, and I won’t try to.

New insurance

from hr
to me
date Tue, Jan 5, 2010 at 3:07 PM
subject Blue Cross ID

David, your Blue Cross unique ID number is xxxx xxxxxxxx. The group number
is xxxxxxx.

I am very relieved to have had this taken care of. Now…I don’t really know what happens …chances for a transplant in 2010 just went up a lot, I think.

Reading the fine print (part 2)

The person in HR who could switch my insurance over is not in today and won’t be in until January 4. A particularly unhelpful person in HR left a message for the helpful-but-unavailable person, who had been pretty clear that I could switch insurance, but only before January 1. So am I screwed? I won’t know until Monday.