I’ve Graduated!

Rhombic Dodecareuleaux Calendar 2013 by Philip Chapman-Bell, on FlickrSo after you get a transplant, you have to report to the Transplant Clinic on a regular basis. During all the sessions where this was discussed, the breakdown was listed as:

  • Two visits a week for 3-4 weeks
  • One visit a week for 3-4 weeks
  • One visit every other week for a couple of months
  • One visit a month for several months
  • Etc., eventually leading to one visit a year

In addition, lab work is required to check how the various drugs are working and how the new organ is functioning. Typically, lab work takes place on the same day as a clinic visit (although the pacing for that also stretches out…twice a week for a bit, then once a week, then once every other week, etc.)

While the initial visits are with an assigned doctor from the surgical team, eventually they transition you to the nephrologist. That usually takes several months.

My first visit to the Transplant Clinic was on June 9 (which happened to be my real birthday, causing all kinds of confusion because my paperwork was printed several days before, so I kept changing my age ;-) ). So I showed up just before 7 a.m. and finally got to leave at about 1 p.m. But the bonus that day was that they gave me permission to get my labs drawn at my local hospital, which meant that future visits didn’t require showing up at 7 a.m.

In addition, they scheduled my second visit for Monday, June 16. So just over one week post-transplant, and I’m a month ahead of schedule.

When I showed up on Monday, June 16 (just for the vitals / visit with nurse to go over the medications / see the doctor), they told me not to come back until June 30. Now I’m another month ahead of schedule!

And today, they told me that I’m transitioning to the nephrologist now :-) (Woo-hoo!) Even better, the nephrologist that I’ll meet with is *my* nephrologist, Dr. Nina Tolkoff-Rubin. The only difference is that I meet with her on the Transplant side of the office and not the CKD side.

My stitches have almost fully dissolved, the drain hole is almost completely healed, and the kidney is doing extremely well. However, I have discovered that I have limits (good old spoon theory)…it looks like three hours of anything is about my max, and then I need to recover. This time will eventually stretch out as I continue to heal.

The Post-transplant Process

Paperwork by luxomedia on FlickrAfter waking up Monday morning (and saying “good-bye” to Sassy Outwater, who spent the night with me), I started acquiring paperwork.

Lots and lots of paperwork.

“Transplantation: What Do I Need to Know?”

From the Transplant Center. Because I wasn’t expecting to get a kidney for another several years, I hadn’t seen it before. The first six pages were all about “preparing for transplant” (which I mostly ignored). The rest of the book covers everything I should need to know following the transplant, although the one major question I had (“when can I take a shower?”) wasn’t addressed.

My biggest issue with the book was that it was written by medical professionals…for medical professionals. Yes, it has information patients need, but it’s not organized in a way that makes it easy for patients to understand. There’s a lot of repetition, and the three important checklists (how to know if you have an infection, how to tell if your body is rejecting the kidney, and when to call the transplant clinic) are in different areas.

“Medication Card”

From the nurses. (It’s not really a card, it’s two pieces of letter-sized paper with fill-in-the-cells tables.) Again, it’s a form created by medical professionals for medical professionals. This card lists all my drugs, organized by why I take them. The lifelong drugs have been typed in, but the dosages columns were left blank. (And they use pencil when filling them in because they will change frequently for awhile.)While I was in the hospital, every nurse was really good at opening my drugs and explaining why I was taking it and what the dosage was. And in the hospital, that was fine. But when I got home, what I really wanted was a chart organized by when I was supposed to take the different drugs. It took me a day to get my cupboard organized (by time, of course) so that I could stop skipping around.

Yet when I pointed this out to different people, they all had the same comment: It’s more important to know why you’re taking the drugs in case you decide to skip them. First, I’m not allowed to skip them (and if I’m thinking about skipping a dose, I have many more problems than understanding why I’m taking a specific drug). But secondly, why wouldn’t they want to make the process as easy as possible for patients when they get home? It’s much easier to go “here are my morning pills” than “where are my morning pills”. They’d already covered the “do not ever skip a dose” mantra three times a day (when I got my pills) and during education sessions. (And yes, I know that some people need more help than others, especially those who haven’t been sick for a long time. But those are the folks who could most benefit from a better-organized system.)They could also suggest how to organize the bottles to make the drugs easier to find. From right to left, my pills are night-only, night and day, and day only. (Bedtime drugs are on a separate shelf). I can just work my way through the bottles depending on what time it is.

“A Guide to Taking Warfarin”

From the Anti-coagulation Management Service. This book was very nicely done, both in publishing and in content. They also provided me with a form I need when I go to their education session and a cover letter about their services.

New England Organ Bank Information

A nicely-formatted packet about communicating with the donor family and volunteering.

Social Security Information

As an end-stage renal disease patient (ESRD), I am eligible for Medicare. They gave me a form with information on my local Social Security office, my copy of my registration form, and a fact sheet on applying for Social Security. (I applied while I was still in the hospital at the Social Security website.)

“Healthy Eating for Organ Transplant Recipients”

From my nutritionist. Given my former eating habits, this should be a breeze.

“Post Hospital Patient Care Plan”

Basically, my instructions for what to do when I get home. This form mostly repeated everything they already told me, but I had to sign a copy for their records.

Medication List

This is different from my Medication Card. This printout listed every drug listed in my patient record, including those I’d stopped taking and those I had just started taking.
Information on self-injecting a drug to thin my blood. I had to give myself those injections until the Coumadin kicked in.

In addition, my awesome new health insurance plan has assigned me a case manager for a year, so I got all the paperwork associated with that.

Meanwhile, awesome new health insurance company has started sending me statements associated with the surgery. At this time, no cost is listed because they’re waiting for Medicare to kick in.

So…if you go in the hospital for a transplant, expect lots of paperwork :-) (And because you won’t be allowed to lift more than 10 pounds for two months, give it all to someone else to carry.)

The New Drug Regimen

prescription bottle with pills falling out. 'The person who takes medicine must recover twice, once from the disease and once from the medicine.' William Osler, M.D.I’ve been on various prescription drugs for what seems like forever. I’ve traveled with prescription bottles, syringes, injectable doses…it was fun (<cough>) getting through airport security at times.

But on June 2, I started a completely new regimen because of the new kidney. What was really strange was coming home and completely emptying the cupboard where I’ve always stored my drugs because I no longer take any of them. And then refilling the cupboard with all of the new drugs.



So here’s how my day goes now:

At 8 a.m., I take:

  • Tacrolimus (the generic form of Prograf) to prevent rejection
  • Mycophenolate Mofetil (the generic form of CellCept) to prevent rejection
  • Pills I take at 8 am (currently: 16)Prednisone (also to prevent rejection, but it does much more than that)
  • Bactrim (an anti-bacterial), but only for six months
  • Valcyte (an anti-viral), but only for six months
  • Prilosec (to prevent ulcers from all the drugs; a bonus is that it lets me eat almost anything I want…when I actually start eating again)
  • A multi-vitamin

Pills I take at 8 pm (currently: 10)At 8 p.m., I take:

  • Tacrolimus
  • Mycophenolate Mofetil
  • Pravacol (a new-to-me cholesterol drug).

Before bed, I take Coumadin (but only for three months) and, for right now, painkillers (so that I can get into bed without pain, and then sleep). I’m on the Coumadin for now to prevent any clots from forming in the new kidney.

Pills I take before bed (currently: 10)They’ve already adjusted the dosages of several drugs a couple of times, using my lab results to determine how much I need. When I first came home from the hospital, I was taking 13 pills in the morning, 6 at night, and 7 before bed. Now I take 16 in the morning, 10 at night, and 10 before bed.

At least most of the pills are small :-)

UPDATE: With the exception of the Coumadin, pain killers, Valcyte, and Bactrim, I’ll be on these drugs for the rest of my life.

Playing with My Food

milk chocolate bar by RosieTulips, on FlickrWhen I was first diagnosed in 1978, I was told to avoid salt. Back then, that was a challenge…the various health foods weren’t really around yet, and salt-free items were both really expensive and really disgusting.

As I got sicker, I gained more restrictions. No grapefruits or grapefruit juice (contraindicated with different drugs). Low protein. Limited dairy. No processed foods. OJ and tomato juice were OK, if I didn’t overdo it. Every new drug added something else to the mix.

But the one thing I realized many years ago was that my body knew what it needed. If I was craving steak, I needed protein. Spinach and chicken livers? Iron. Cheese and broccoli (not necessarily together)? Calcium. Orange or tomato juice? Potassium. I stopped eating chocolate, most dairy products, and other items because my body knew those items weren’t good for me. (Chocolate and dairy are high in phosphorus. End-stage renal disease results in elevated levels of phosphorus, so my body knew I had to avoid certain foods.)

And I gained more skills in the kitchen. I had been raised in upstate New York on a mostly steak-and-potatoes diet, but as I traveled for work, I tried more foods. And as I stopped buying canned foods, I learned how to make things that most people buy. (My son was 8 before he discovered that grocery stores sell pre-made spaghetti sauce.)

Now that I have a new kidney, I pretty much lose most of the restrictions I’ve lived with for the past 15 or so years. And I gain some new ones.

  • While I still need to watch my sodium, I am allowed to eat more salt than before. (My body, however, still reacts negatively to too much salt.)
  • I can no longer eat raw foods. This rules out fresh clams and oysters on the half shell, carpaccio, aioli (unless the eggs are pasteurized), most sushi, etc.
  • I can’t eat at buffets or salad bars because of the risk of contamination. This rules out most of the foods available at any grocery store with salad or food bars, sub shops, etc.
  • I can eat fresh fruits and vegetables, as long as I wash them first. And even those that I peel first must be washed. (I now own a brand new salad spinner, complete with built-in mandolin.)
  • I have to be careful how much sugar I eat. One of my drugs is Prednisone, which can increase the sugar in my blood, leading to diabetes. (This one doesn’t bother me too much because I typically don’t eat a lot of sweets.)
  • I’m supposed to cook meats to medium (I like my burgers medium, but I like my steaks medium-rare.) And I have to fully cook eggs yolks, so no more over-easy eggs (unless I use pasteurized eggs).
  • For now, I can’t eat soft cheeses like mozzarella and brie. But because I need more calcium, I am allowed just about any other cheese. (And I’ve been eating cheese all along, so once they tell me I can eat soft cheeses again, not much changes.)
  • No sprouts. I almost never eat them anyway, so this one isn’t a big deal.

In addition, I’m on blood thinners for three months. (I had a blood clot in my leg several years ago, and my form of nephrotic syndrome can trigger clots. Because they don’t want the new kidney to end up with one, I get to enjoy blood thinners. But at least it’s for a fairly short period of time.) As a result, I have to be careful about eating foods with Vitamin K, which regulates blood clotting. The trick is to eat the same amount of Vitamin K every day.

As I recover from the surgery, I find myself back in the kitchen. (As long as I don’t stand for a long period of time, I’m OK.) As I get stronger, I will cook more, but for now, I try different foods to see what my body does and doesn’t approve of.

And, as it turns out, I can eat chocolate again :-) I only have one piece a day (if that), but thanks to the generosity of friends who sent me different gift baskets, I have a wonderful selection to choose from.

“A Perfect Match” by Joe McHugh

My dear friend Joe McHugh is a poet. (He’s won contests with his poetry.) It’s his go-to for special occasions, like weddings and graduations…and kidney transplants. It’s an honor to get a dedicated poem.

(Joe has also had a variety of medical issues, which I’m not going to share. But much like I was one of the first to get a fine needle biopsy back in 1978, Joe has been one of the first for several of his treatments.)

A Perfect Match

In ways it’s like a duplicate.
A mirror of before.
But this one’s more dependable.
A success, a perfect score.

They says this one is new.
Yet I’m a bit amused.
It once was run by someone else.
This organ is used.

The “new” one should add some time.
Here’s to Char 2.0.
A cleaner version of the first.
To see her young son grow.

Let’s cheer for her new organ.
That lady is quite the catch.
And as for her kidney,
It’s such a perfect match.

From one miracle of science to another…

What a Monday…

So I had my first appointment at the Transplant Clinic on Monday, June 9. I had to be in Boston by 7 a.m., and Jim drove me in after getting home from work.

They did my lab work at about 7:20. (You can tell which of us were brand new. Not only were we wearing masks, which are required for the first several weeks when we’re out in public, but we were there before 7 a.m.) Then they check vitals (weight and blood pressure, two really important readings that indicate just how the new kidney is functioning…if I gain more than 5 pounds in 3 days or if my blood pressure is and remains high, the kidney could be having problems).

Next up was a visit with a nurse to go over my med card (it lists all my drugs, dosage, and time when I’m supposed to take them). And we covered several other topics…like how raw food doesn’t just include sushi / fresh clams / fresh oysters, but also anything made with raw egg or egg yolk (bye, aioli) and carpaccio. Oh, well.

Finally, I got into see the doctor. The new kidney is doing well (although really close to the surface). My incision is healing well, the bruising is started to go away (very slowly), and the swelling will eventually go down. I’m not looking forward to wearing real pants any time soon.

I spent the afternoon with my friends Sina and Lenora, which was really nice. He visits Boston on a regular basis, yet we never seem to be able to get together. And then my friend Paula showed up with dinner (beef shanks, mashed potatoes, and lemon cake). Yum :-)

Jesse is the backup goalie for the Elite Gulls (out of Endicott College), so he headed off to lacrosse practice. Given that I can’t drive for at least another three weeks, my friend Mary Ellen picked him up. This is going to be an interesting month.

One good thing happened: I’ve gotten permission to have my labs done at Salem Hospital before heading into the clinic. I still have to be at a lab at 7 a.m., but at least it’s the one five minutes from my house! And then I only have to go into Boston for the doctor’s appointment. No more six-hour visits! And (I don’t know why), but after stressing last week that I would have to be in the clinic two days a week, they changed it to once. Works for me :-)

Oh, and this time, my reaction to Prednisone is hyper. (I flip between hyper and hypo each time I take it. Hyper is somewhat better, just because I actually get stuff done. Unless I really want or need to sleep. Then it’s not so nice. But I’m sure my body will figure it out eventually.)

They’re still working on getting my blood levels balanced out, so some dosages have already been tweaked. And they added in a magnesium supplement because my magnesium levels are too low.

Apart from being up for 18 hours, it was a really good day.

*How* Many Kidneys Do You Have?

To answer the question: I now have three kidneys. (Yes, three.) Two are working their way toward being retired, and one is now taking over.

Kidneys are the only organ where we get a pair when we really only need one. And it’s the only organ where a transplant means “add”, not “replace”. (They will remove kidneys that are cancerous or that have Polycystic Kidney Disease.)

Scar by Alan Turkus, on FlickrYears ago (actually, back when I first got sick), the only way to transplant a kidney was to make a really large incision from front to back. The kidneys are really well protected in the body, and they’re not easy to get to.

Also, this method was the only way to retrieve a kidney from a live donor. The photo in this post is of a live kidney donor in 2006, and techniques had already improved at that point. (The scar is relatively short.)

Over the year, techniques have improved. Now they use laparoscopic surgery to retrieve a kidney from a live donor, and the kidney is deposited into the recipient’s abdomen. (In my case, it’s on my right side. With the swelling, I look very weirdly pregnant because the right side is more swollen than the left. It’s also very close to the skin for some reason, so it’s actually visible. Or it will be when the swelling goes down.) The surgeon creates a new blood supply with an artery and two veins, and then creates a new connection to the bladder.

It can take time for the new kidney to get to work, although mine started working immediately. (If it hadn’t worked right away, they would have used temporary dialysis until it did.) And it takes time for the old kidneys to understand that they’re no longer being used. Doctors track the progress by using blood work, specifically Glomular Filtration Rate (GFR) and Creatinine, which both track kidney function:

  • My GFR was 17 when I checked into the hospital on Sunday. It was 18 on Monday; 19 on Tuesday; 23 on Wednesday; 28 on Thursday; 29 on Friday. It is 30 right now. (Normal for someone my age should be somewhere around 60.)
  • My creatinine level was 2.91 on Sunday. It was 2.67 on Monday; 2.55 on Tuesday; 2.21 on Wednesday; 1.87 on Thursday; 1.8 on Friday. It is 1.7 now. Normal is .6 to 1.5.

So as GFR goes up and creatinine goes down, it shows that the new kidney is taking over. It will be awhile until my numbers stabilize. Meanwhile, I’ll be getting labs done twice a week for at least the next month. (Good thing my phlebotomists like me, because they’re certainly going to be seeing a lot of me!)

My original kidneys will eventually shrink because they’re not being used. And my body will ignore them.

“Thank You” to My Donor

Recycle Life braceletI don’t know who you are. I don’t know anything about you, except for one thing:

Someone made the decision that you would become an organ donor when you died. Maybe you ticked the box on your permit or driver’s license (assuming you were old enough), selecting organ donation. Maybe you talked to your family. Maybe your parents made the decision.

You could have been young or old, male or female. You could have been any religion (just about all religions support organ donation) or no religion. You may or may not have been sick yourself (the only thing I know for sure is that you did not have kidney disease).

I don’t know what convinced you and your family to make what has to be one of the hardest decisions there is. Perhaps, like my family, you are related to someone who needs an organ. Perhaps you know someone who is sick. Perhaps you have the “Good Samaritan” gene. Perhaps you saw all the videos and signs at the Massachusetts RMV. Or perhaps you believe in “recycle life”.

You saved a lot of people by making that choice. Two people (one of them me) got a new kidney. One person got a new liver. Other people might have gotten a new heart or lungs (or both). The doctors might have also been able to use your pancreas, intestines, corneas, middle ear, skin, bone, veins, cartilage, tendons, and ligaments.

Because of you, I am no longer sick. My skin now has normal tone. While I’m achy from my surgery, I feel better than I have in years. I have more energy. I’m sleeping less. I’m no longer anemic.

And I no longer have chronic kidney disease.

Because of you, I am no longer one of the 123,000 waiting list candidates (78,000 active) on the Organ Procurement and Transplantation Network. I’m now a statistic to them…another tick in the box under “kidneys transplanted”.

I am so sorry that your family grieves while I live. But I thank you for your generosity. And so do my family and friends.

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.

[EDITED TO ADD PHOTOS]

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