Now It’s “My Life After CKD”!

I got the call early on Sunday, June 1, that a kidney was available (as long as the results from my tissue typing tests were good).

The results were good. And by that night, I had a new kidney.

So I’m no longer living with CKD! Now I’m someone who used to have CKD.

I’d been thinking that I needed to blog because wow, it had been awhile. But for me, living with CKD meant optimizing priorities, and all sorts of things floated higher in the list than blogging. Things like spending time with my son (OK, so typically I was the chauffeur, but still…). Making dinner. Doing laundry. Things that other people typically took for granted, I had to account for because there was only so much I could do in a day.

And now, I’ll be blogging about my experiences of the last week. I’ll talk about my pre- and post-op experiences, what I think you should do and know if you have chronic illness, what happens when someone gets a new kidney, my new drug regimen, and more.

In another couple of months, I’ll get my tattoo touched up.

Because I no longer have CKD!

Celebrating WWII Veterans in Watertown, MA

Part of living with CKD is finding enough time to do things…like blog ;-). And it occurred to me that I haven’t talked much about actually living with CKD, just my treatment of it. Here’s yesterday’s story.

In 1942, my dad was 16 years old. He dropped out of school and enlisted in the Army, ending up in Germany. I don’t know a lot about his military history (he rarely spoke about it), but I do know that he fought in both World War II (WWII) and the Korean Conflict.

Yesterday, I remembered his service to our country.

Last year, the members of the Private Charles J. Shutt Marine Detachment in Watertown decided to honor their WWII veterans with lunch and a ceremony on April 21, 2012. The Lynn English High School Marines JROTC Drill Team was invited to participate. All 80 kids wanted to attend! But only eight (four girls and four boys) were selected. (And my son was one of them!)

When we arrived at the Hibernian Hall on Watertown St. yesterday, dozens of people were still getting everything arranged. There was a stage in the hall with a screen, the United States flag, flags from all the branches of the service, and speakers playing 1940s-era music (I was singing along with some of it). Twenty tables were set up for lunch, along with a long buffet line. A TV reporter from the local cable access channel was recording different areas of the hall and would record parts of the ceremony. (She also interviewed the kids while they were waiting their turn for lunch.)

The kids spent much of this time practicing their routines. (Because this was a special event, each squad had created a new routine specifically for the event.) But when the doors opened, they lined up and escorted the veterans and their spouses or assistants to their seats.

The ceremony opened with a short speech (where all veterans from all conflicts were recognized), the national anthem (Whitney Houston’s version from YouTube), an opening prayer, and a welcome from the Secretary of Massachusetts Department of Veterans’ Services. And then it was lunch time :-). The Hibernian Hall presented a great buffet: Italian bread and butter, salad, pasta with meatballs and sausage, green beans and carrots, roasted potatoes, herbed chicken, and ham. (From the number of times the kids went back for seconds, I’d say that the food was really good!)

And then it was time for the ceremony to start. After being introduced, the JROTC squads performed. (Yes, I have permission from Sergeant Major to share this video.)

(That’s my voice in the middle of the video, explaining to the veteran I was sitting with about the squads. Other than that, there’s very little talking…just a few commands every now and then.)

The veterans loved the presentation. As “the mom”, I received many compliments about the kids because of their respectful behavior and their presentations. I was close to tears several times throughout the day.

The rest of the afternoon was filled with various speeches. Watertown’s State Senator and State Representative, a member of the Governor’s Council, and Watertown Town Council President all read resolutions. Several videos were shown, including the signing of the terms of surrender (search YouTube for “end world war II” to see the video). The final speaker was a WWII submarine officer.

It was a day to remember “The Greatest Generation”. It was incredible.


I just realized that I had also taken several photos yesterday:

Sgt Major and kids
Sergeant Major and the Young Marines

JRTOC kids with vet (1)
One of the veterans, his wife, and the Young Marines

JRTOC kids with vet (2)
One of the veterans and the Young Marines

Kidney Transplants in the News…

Lots of articles and interviews lately on kidney transplants. (Yay!)

PS Yes, I know I haven’t posted in awhile. I got busy :-)

Anyway…on Sunday, Dec 25, Parade Magazine poasted an article called The Miracle of Life: How One Woman Turned Tragedy into the Ultimate Gift. Kidney chains are created when someone who needs a kidney has a donor who isn’t compatible. Some chains take place very quickly…for example, in March 2009, six donors and six recipients underwent operations within a span of 36 hours. In “The Miracle of Life”, the chain has been going on for several years.

On Sept 29, The Today Show interviewed a brother with kidney disease and his sister, who donated her kidney to save him. But she faced a problem of her own…before she could even get tested to see if she was a match, she had to lose 135 pounds.

And today, Jan 1, MSNBC had an article about an Indiana woman who donated a kidney to her former boss.

As of today, more than 112,000 people are on a waiting list for a transplant, and more than 90,000 are waiting for a kidney. Kidneys are the only paired organ humans have when only one is needed. (The current number of active waiting list candidates is more than 72,000. For example, I’m now listed on UNOS for a kidney, but I’m inactive because my GFR jumped above 20 again last month.)

Are you thinking of donating a kidney to save someone’s life? Get more information at the National Kidney FoundationTransplant Living, and Living Donors Online. Not only could you save someone’s life, but you will also know if you have any medical issues that haven’t shown up yet. (Donors go through testing that is just as rigorous as the recipient.)

By the way, kidneys are not the only organ that can be donated by a living person. Liver lobes, lung lobes, a portion of an intestine, and a portion of a pancreas can also be donated.

And if the thought of living donation scares you, please consider registering to be an organ donor when you die. (And make sure your family knows your wishes!) One organ donor can save as many as eight people, which is a lot given that an average of 20 people die each day waiting for an organ.

I hope you have a happy and healthy 2012 :-)

“The Letter” arrived…

Late last Friday afternoon, I got The Letter. The one I’d been waiting for. The one that would tell me if the Multidisciplinary Renal Transplant Committee had approved me for transplant.

I read The Letter three times before I realized that it didn’t say what I was expecting. I was looking for those exact words: You have been approved. After all, I already knew the results of all my tests. I suppose there could have been a reason why they wouldn’t approve me, but it would have to have been something really weird.

What The Letter said, in part, was “…although you were deemed to be a suitable candidate for kidney transplantation, you are too early too list at this time.”

So…was I approved or not? I sent an email to my nephrologist.

It turns out that yes, I was approved. But I’m not sick enough to be listed with UNOS (the United Network for Organ Sharing) for a deceased donor kidney. Here’s why:

Kidney function is measured with the Glomerular Filtration Rate (GFR, sometimes abbreviated eGFR). The stages of kidney disease are determined by your GFR and your symptoms. If you have no symptoms (as determined by lab work), your GFR can get down to 60 without much cause for concern. The highest value for GFR is 130 (technically, it’s 130 mL/min/1.73m2). Most kids have GFR values around 110.

Because the kidneys have to deal with everything that goes into your body, your kidney function progressively decreases as you age. Throw in some form of kidney disease, and that progression moves along at a much faster rate. People with a GFR of 15-29 are considered to be Stage 4; those with a GFR less than 15 are Stage 5, which is also known as End Stage Renal Disease (ESRD). Dialysis is typically started somewhere between 15 and 20.

As of August 4 (the latest set of labs when the committee made its decision), my GFR was 22 (right in the middle of Stage 4). UNOS requires that a possible recipient either be on dialysis or have a GFR of under 20. (And as of September 1, when I had another set of labs, my GFR was 23. However, back in May, my GFR was 19.)

So, to recap:

  • I’m not sick enough to go on UNOS for a deceased donor kidney. (The typical wait time for someone with my blood type is 4-6 years. I could have a long wait going this route.)
  • I am sick enough to look for a live donor. As with anything, there are pros and cons if I go with a live donor. The pros include a slightly better success rate, surgery according to both our schedules, more immediate reaction following the surgery (that is, kidneys from living donors tend to start working right away), possibly no need to go on dialysis, and no waiting list. The cons include starting anti-rejection drugs sooner (the drugs are my least favorite part of this whole thing), the possibility of rejection, and starting the clock running on the new kidney too soon (transplanted kidneys average 15-25 years before the recipient needs another transplant).

On to the next step! (More on this soon.)

Tests, tests, and more tests…

I spent a lot of time last week at different buildings at Mass General Hospital (MGH) getting more tests done. (The good news is that I can now get between all the buildings without feeling totally disoriented. And I can find the parking garage when I’m done. Yippee!)

On Wednesday, I had an Echo Stress Test to see what kind of shape my heart is in. I went in thinking I was going to do the stress test where exercise is involved…boy, was I wrong. I had a medically-induced stress test, which has to rank among one of the weirdest tests I’ve ever had.

For this test, I had an IV. It’s always fun watching the nurse play “find the correct vein” (my veins tend to be really good, but they have a tendency to roll). I needed my left arm for lab work later the same day, and my right arm was still sporting a bruise from last week’s routine lab work, so the IV went in my left hand.

My pretty pink IV on my left hand for my echo stress test, below my medical alert tattoo. PS: I hate pink.

The nurse then instructed me to lie down so she and the cardiac sonographer could attach the first batch of leads for the baseline electrocardiogram (EKG), which was followed by a resting echocardiogram. The nurse also put a blood pressure cuff on my right arm, and then they had me roll onto my left side. The base tests took about 40 minutes. I think I started to doze off ;-). When I wasn’t thinking about maybe taking a nap, I could watch the results. Then the cardiologist came in, and that’s when the fun started.

The nurse and the sonographer attached more leads to my torso. Then, while the cardiologist and the sonographer watched the ultrasound monitor, the nurse started injecting Dobutamine into the IV to raise my heart rate.

Have you ever run up a flight of stairs or a hill? You know how you feel when you get to the top, and your heart’s racing so hard you can feel it everywhere? Well, this is the feeling I got as they kept injecting Dobutamine, taking my heart from a resting rate of 70 beats per minute to the target rate of 140 beats per minute. The difference was that I wasn’t short of breath because I was just laying there. It was such a strange feeling, listening to my heart pound but laying perfectly still. The nurse said it’s similar to an extreme adrenalin rush (and it lasts longer, too).

Meanwhile, the nurse kept monitoring my blood pressure, which dropped to 80/50. After 250 cc’s of saline, my blood pressure went up (I think they got it to 100/75 or thereabouts). Finally, when the test was over, the cardiologist left, and the three of us waited for my heart to get back to normal.

I then had more lab work (left arm, please!) and a chest X-ray (in a different building, of course) before heading home.

Friday morning, I had the quickest CAT scan yet. The surgeons needed to know how my pelvic blood supply was, and I was thinking that this was going to be another one of those hour-long tests. From start to finish, I was there about 15 minutes. The two (male) techs were worried that my underwire bra might cause issues with the open MRI machine (gotta love those…it’s like going in and out the middle of a doughnut), and they were surprised when I just whipped the bra off. Seriously, guys, after 33 years of being poked and prodded by everyone from students to master surgeons, removing a bra is no big deal. (Especially when I just unhook it and pull the straps out through my shirt sleeves ;-).) I did use a changing room to put it back on!

This was followed by something that’s actually a bit unusual for me…I spent close to two hours in a room waiting for a doctor from infectious diseases. Most of my doctors tend to see patients really close to their appointment time, but this one? Not so much.

I was shown into the room fairly soon after I arrived, which made me think that I’d be out pretty quickly. After 30 minutes, someone knocked on the door to tell me that she was on an important conference call. (Yeah, that makes me feel better.) After another 20 minutes, her Fellow came in to talk to me. He never looked at the pile of forms they had me fill out, and he obviously hadn’t spent a lot of time looking through my records. I spent about 20 minutes with him, going over what is now the condensed version of my medical history.

It was another 30 minutes again before the doctor showed up. She had all sorts of things for me to read that she had written. About the only good to come out of all of this was that I found out that, even though I had a positive tuberculosis (TB) test when I was 21, my labs showed no active TB, and that I’m CMV negative. CMV, or Cytomegalovirus, can cause problems after transplant. And I guess it matters when it comes to finding a donor (although until my doctor explains it to me, I really don’t quite know what that means).

The bad news? We have to get rid of all of the birds (we have a parakeet and five cockatiels). And they’d really like it if we got rid of the two snakes and the bearded dragon, but they’ll be happy if I don’t pick them up or clean their tanks after transplant. (Why does everyone think that we cuddle with our snakes? I haven’t quite figured that one out yet.) In case you’re curious: all reptiles tend to carry salmonella on their skin. We’re all very good about washing our hands (with hot soapy water) after we do anything with any of them. (Jesse’s better at that than at washing his hands before dinner!)

As of right now, I don’t have any more tests scheduled. Of course, that could change tomorrow…I’m just hoping that the Transplant Team gives me the news soon that we’re set to go ahead!

Support Senator Richard Durbin’s bill…please!

(Note: This applies to U.S. citizens only. I don’t know what the laws are in other countries about transplants.)

As I mentioned in I’m an anomaly, one of the stupidest things that kidney transplant recipients have to deal with is the 36-month limit on Medicare’s transplant drug coverage. (Basically, after the government pays for the transplant and the first three years of transplant drugs, recipients must then cover the cost of the drugs themselves…about $4000 a month…until they can go on Medicare. Without the transplant drugs, the chance of rejection increases. If the organ is rejected, a new donor organ must be found…and the process starts all over again.)

Senator Richard Durbin (D-IL) is sponsoring S.1454, “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011“. His co-sponsors are Scott Brown (R-MA), Benjamin Cardin (D-MD), Thad Cochran (R-MS), Daniel Inouye (D-HI), Carl Levin (D-MI), and Charles Schumer (D-NY). This bill would amend Title XVIII of the Social Security Act to provide for extended coverage of these drugs for kidney transplant recipients.

The bill has currently been referred to the Committee on Finance. See the status at GovTrack.

Please contact your United States congressmen and ask them to support this bill.

I’m an anomaly :-)

Stop laughing :-) We always knew I was a little different…now I know (at least in one area) by how much.

During day 1 of my transplant evaluation, Paula and I kept hearing that I was an anomaly. But *why* I was an anomaly…well, it seemed I just don’t fit into any of the standard categories.

  • The surgeon was a bit stunned when he asked how long I’d been sick, and I answered, “33 years”. It turns out that not many folks are sick this long without needing dialysis or a transplant. (What can I say…I’ve had an awesome nephrologist for the last 6 years :-). And I had an awesome nephrologist the first two years. The ones in the middle…well, most of them weren’t quite as awesome. I managed to keep going anyway :-).)
  • I’m going direct to transplant without going on dialysis. The latest figures I could find were for 2008, when 2.5% of all kidney recipients (out of more than 16,000) went direct to transplant. MGH performs between 80 and 100 transplants a year…which means that only 1 or 2 are direct to transplant. (I’ve asked for the exact count, but no one’s gotten back to me yet.)

This means that there are a couple of ramifications:

  • Medicare covers all End Stage Renal Disease (ESRD) patients. It pays for all costs related to dialysis and transplant. However, a patient can’t file the paperwork until either dialysis starts or the transplant has taken place. (Think of it as “making the commitment” ;-).) So by going direct to transplant, I’m going to come out of surgery, and then have to deal with the paperwork. (Yes, some things can be taken care of ahead of time, but not everything.)
  • While Medicare covers all costs for dialysis for as long as its needed, it only covers three years post-transplant. (This has to be one of the stupidest things I’ve ever heard.) After transplant, I’ll be required to take a long list of drugs. Daily. These drugs can cost as much as $4,000 a month for patients without insurance. (This makes the $1300 a month we currently pay for our health insurance look like a bargain, because it should only cost us around $200 a month.) Three years post-transplant, I have to go off Medicare until I’m old enough to go back on again, which means that we’ll be responsible for all drugs costs until I’m 65. (Yep, this means that Medicare will pay thousands so that I can get a new kidney, and then stop paying for the drugs necessary for me to keep it working. Dumb.) We laughed when the social worker told me “You’re really too young.” Haven’t heard that in awhile!
  • If the new kidney doesn’t start working right away (and sometimes it doesn’t), they typically put the patient on dialysis until it does start working. This isn’t a big deal when the patient has already been on dialysis, but it is for someone like me. It’s not that they can’t set up the fistula, they can…but it’s another step that they have to be ready for.

I’m also considered a bit of an anomaly because of my attitude. I’m not freaked out by this. My husband and my son aren’t freaked out by this. I think some of my friends are, but those who have known me for a long time all knew this was coming at some point. The point has arrived :-) (OK, to tell the truth, my mother is freaked out by this. But she’s my mom…it’s to be expected.)

During all the meetings on day 1, I think people were expecting someone who wasn’t calm, wasn’t joking, and frankly, didn’t know as much as I do. But the one thing I’ve done since I first got sick was to learn EVERYTHING I could. My very first nephrologist in Allentown, PA, made sure that I had all the information I wanted…what was involved in dialysis (at that time), what was involved in a transplant (at that time), what the various lab tests were for, and more. I’ve had a long time to prepare for this.

So when you ask how I am, don’t be surprised when I say “I’m good”, because I am. For the most part, I feel fine. I continue to work, to watch TV with my son and fight with him about doing homework, to shop for groceries, to make dinner, to do my part around the house. My travel is currently limited by budget, not by my health (although I’m sure that day will arrive).

To me, CKD is just part of who I am, and the transplant is the next step. I’m good with that :-)

And so the “transplant evaluation” process starts…

On Tuesday, July 12, I spent the day at Mass General Hospital (MGH) so that I could start the transplant evaluation process. My friend Paula Berger went with me…it’s always good to have someone else there to take notes and ask questions. (Besides, my husband hates doctors. Hates hospitals. Hates needles. Hates sitting around. It was good to leave him home for this pass ;-) )

We arrived at 10:00 am, where I started by getting some blood drawn. 15 vials, to be exact, so that they could check me for a variety of diseases, antibodies, etc. Then they took my vital signs (pulse, blood pressure (which was low), height, and weight). Note to anyone else going through something like this: make sure they take your vitals BEFORE drawing blood. Oh, and make sure you eat something first. While 15 vials really isn’t all that much (not even a half-pint), it’s enough to make you woozy if you haven’t eaten and it will affect your blood pressure reading.

We then sat through a PowerPoint presentation given by the Transplant Coordinator, designed to answer a bunch of questions. They gave me all the paperwork when I first walked in, so by the time we got to this stage, both Paula and I had already read through them. If this had been a conference session, it would have sucked, given that the slides were displayed and then read to us. But we’re not their typical audience, and the slides did have a lot of information. (True to our nature, we pointed out mistakes between the handout and the presentation ;-).)

This presentation covered transplant statistics, donor types, living donor criteria, blood and tissue compatibility issues, the MGH Transplant Team members, recipient requirements (in other words, all the tests I have to take),  nutritional issues, food safety, transplant list placement (people with O+ blood like me typically wait 4-6 years for a cadaver donor kidney once they get on the list), the transplant itself, and follow-up.

Lunch came next, and we went to the Whole Foods Market in the same complex. They had already given me the list of “don’ts” following transplant, so I had salmon and tuna sashimi :-) (Yep, no raw fish following a transplant. Damn.)

And then the meetings started. We started with the team nephrologist (who just happened to be my doctor), a fellow, and a student. Because my doctor knew me, she let the fellow and student take care of this part. Next up was the social worker, the dietician, the finance folks, and finally one of the surgeons. We asked dozens of questions, both of us took copious notes, and we were exhausted when we finally left at 5 pm.

At this point: I have more tests to go through (on August 10 and August 12); it will be awhile until I’m approved; I won’t start looking for a live donor until I’m approved. I’ll have more blog posts on the various meetings, I’ll give you the list of donor criteria, and I’ll tell you why I’m an anomaly :-)

Let me know if you have any specific questions! If I don’t know the answers, I know where to get them :-)

Meet a kidney transplant recipient

Thanks to my friend Dana Worley (who creates awesome fuzed glass soap dishes, jewelry, wall hangings, and more…check out her store on Etsy), I exchanged emails with Bob Bayn. Bob, who has Polycystic Kidney Disease (PKD), got his new kidney on December 17, 2010 from a live donor.  You can read his original post about needing a kidney at his personal blog. He’s got lots of information about donating and the requirements. And after he got his kidney, Bob was interviewed by Jared Thayne for Utah State Magazine in an article called “He’s Got a Ticket to Ride“. (As of June, he was back riding his bike to work :-).)

Bob knows what I’ll be going through…after all, he’s already been down that path. And even though our initial steps were different (PKD is hereditary, while what I have isn’t), the overall treatment is similar: maintain as much kidney function as long as possible. And when the kidneys finally call it quits, get a transplant. (Bob had to go on dialysis for a month or so because his original kidneys had to be removed.)

I’m not quite ready to post the “got a kidney?” request, although it’s coming. I’m an information-gatherer, and I haven’t gotten nearly enough information yet. I’ll know more after my all-day meeting next Tuesday in Boston.

If you’re curious, feel free to post questions in the comments. (Comments will NOT be interpreted as a commitment!) I have a list of questions already, but I’m sure I’m missing some :-)

Now for a slight change of plans…

In April, my doctor told me it was time to start dialysis and had me meet with a peritoneal dialysis nurse. That went fine, although no one here was really looking forward to shipments of 120 bags of solution every month. (Where on earth would I store them?) And trying to figure out future travel plans was even worse: I was picturing me and TSA and a portable dialysis machine ;-)

Two weeks ago, I met with my doctor (this happens frequently). This time, she told me I could go straight to transplant if I wanted. Given that I’m extremely logical, and given that I’m going to need a transplant anyway, I’m perfectly fine skipping the “dialysis” step.

In two weeks, I meet with the transplant team at MGH. This is an all-day affair…looks like there’s a lot to learn. I’ll meet with the surgeon, transplant coordinator, nutritionist, financial specialist (transplant drugs are really expensive), and a few other people. I’ll have more lab work done. (Yay! More needles!)

And I’ll have more information on what comes next.

What I do know is that I do NOT need a transplant immediately. My numbers are in the “let’s get prepared” range. I have time. How much? No one knows for sure. But I won’t be scheduling surgery any time in the next three months.

I’ve already started researching transplant information. I’ve gotten pointers to several websites. (I always feel like a fraud on those sites…I’m so not sick when compared to what other people are dealing with.) I’ve talked to a friend who was a live donor for someone she didn’t even know. But I know I need to learn more. (Have you figured out yet that I’m really proactive when it comes to medical stuff?)

Let me know if you have any questions, or if you think of questions that I should ask during my “transplant information” day.

And thanks for being here :-)