Transplant Anniversary

That was a fast year.

It doesn’t seem possible to think that it has already been a year since I received my new kidney. It truly feels like it just happened. From the days leading up to the surgery, to being in the hospital, and to the recovery at home, it’s all so vivid in my mind.

Fortunately I’ve had a good first year. In my many appointments, which went from twice a week to now once a month, the doctors have been pleased with my recovery and my kidney function is solid. The numbers in all of the blood work have been where they want them for the most part. I was lucky to not get any viruses (such as CMV or BK) that new recipients can acquire. The only thing I did get, which is common due to a suppressed immune system, is thrush in my mouth. Yes, I know this sounds gross. It just took some medicine that I had to swish and swallow four times a day to take care of that.

It was an adjustment to taking all the pills morning and night, but as the doctors always remind me, my med list is small compared to many recipients. One of the anti-rejection drug levels took some adjusting for the first few months. It was either too high or too low and wouldn’t hit the correct range. It has gotten better and fewer adjustments are needed now. As long as the dose is correct, I don’t notice many side effects from that pill anymore except for hand tremors. Another of the anti-rejection drugs is a steroid, so I still have a puffier face and a little extra weight that wasn’t there pre-transplant. But let’s face it, being over 40 and on a daily steroid makes shedding pounds a bit tricky. However, if shaky hands and a little extra weight are what I have to deal with for a working kidney, I think I’ll be alright.

I will be taking anti-rejection, or immunosuppressant drugs, for life, or as long as this kidney lasts (hopefully a long, long time). With that comes the issue that I am more susceptible to simple things like colds, as well as more serious illnesses such as cancers and diabetes. The drugs suppress my immune system so that my body doesn’t try to fight off the foreign object, the kidney, but that opens me up to other problems. I have become a bit of a germaphobe. I use a lot of hand sanitizer and Clorox wipes in my classroom. Every time someone coughs or sneezes near me I feel contaminated and want to wash immediately.  

The one certainty about a transplant is the uncertainty. While things seem good now, there’s always the fear that things can go wrong. My body could reject the kidney at any time. I have a higher level of donor specific antibodies which puts me at a higher risk for rejection. Last month my antibodies were elevated, so they increased one of my other anti-rejection drugs to see if that will bring them back down. Also, a transplanted organ doesn’t last forever. Some people are lucky to get many years and sometimes that’s not the case. I try not to dwell on what can go wrong and continue hoping that it all stays fine. I feel good, so I hope that’s a sign that all is going well.

And, of course, how can I forget my friend, Jill, who opted to be part of a paired exchange when we weren’t a match. Without her willingness to donate to a stranger for me, which she did December 6, 2016, I likely wouldn’t have a new kidney right now. And my donor Denise. I’m very fortunate to have been given a kidney by such a kind and thoughtful person who is now a friend. These are two people for whom I will be forever grateful. And I would be remiss if I didn’t thank all of you who took steps to be a possible donor and those who supported me before, during, and after the transplant. The doctors and nurses at Maine Transplant and R5 at MMC are all fantastic as well. There are too many people to name by name, but I know who you are and I thank you.

December 1,  2016
Jill and Denise...the first day I met my donor! 

While I am fortunate to be able to celebrate this one year of my transplant, I’d also like to remind people that there are many others waiting for kidney transplants. While I may be greedy and have three kidneys, most people are able to live with only one. Even if you don’t know someone specific who needs one, you can be an altruistic donor for someone. The information for the Maine Transplant Program is here if you would like to know more. Or you can ask me! I’d love to see someone else be able to celebrate their one year anniversary as well!

Here’s to another year of good health!

The chain (that we've met so far, minus our altruistic donor Bruce)
doing the Maine Nephrology 5K in April 2016.
Our team was "The Chain Gang." Get it?  :-)

The first part of our kidney swap chain...a summer get together!

Saving Lives One Kidney at a Time

Eight weeks ago I was arriving bright and early at Maine Med for my transplant. Today I arrived bright and early to see my kidney chain partner, Jill, as she prepared to donate her kidney. It was with mixed emotions as I sat in the surgery pre-op area with her and her husband. I was very grateful for what she was doing. It’s an amazing, generous gift that she not only gave me, but for her recipient in the hospital today. On the other hand, I felt this guilt as I knew she was going through this procedure because of me. I know she wouldn’t want me to feel guilty, but it’s hard not to a little. Going through major surgery, giving up an organ, and then recovering is a lot for someone to do because of my need.

Today is sort of a culmination of eight months of kidney transplant “stuff.” In April, when I was referred for a transplant, Jill immediately wanted to know what she had to do to see if she was a match. She got the ball rolling early on. As I’ve shared in previous posts, while we weren’t compatible, her willingness to move forward in the kidney swap chain is what allowed me to get a living donor so quickly.

Last week I had the honor of meeting all the people in my kidney chain so far, including my donor, Denise. I’ve wondered what my donor was like and being able to meet her was great. When the living donor coordinator was doing introductions, she added, “And Denise is your donor.” We both looked at each other, smiled kind of surprised, hugged, and had a few tears. I swore going into it I wasn’t going to cry. I was going to be tough. It didn’t happen. And I’m very happy to know that the new kidney I have in me belongs to Denise. I couldn’t ask for a more kind and friendly person in which to share DNA.

Jill on my right and Denise on my left

Being part of a kidney chain is exciting because we have our own little kidney family. We’re all connected by being donors or recipients. And fortunately, it sounds like the chain is going to keep growing. Jill’s recipient has someone that will donate and there is another recipient lined up. We are part of Maine Med’s first ever open ended chain.

We're pointing to Bruce. He was an altruistic donor who just decided to donate a kidney to someone who needed it. He started the chain. He donated to Jenner, Jenner's husband donated to Dave, Dave's wife Denise donated to me, and Jill donated to a stranger today. 

Coincidentally, Jill’s surgery coincided with the 31st anniversary of my grandfather’s death. This is the grandfather who is the first known person in our family to have the polycystic kidney disease gene. And strangely, my transplant was on the 7th anniversary of Jill’s father’s passing. There were some weird connections during this process that we took as signs that it was meant to be. She may not be feeling that way tonight, but as she starts to feel better, hopefully she’ll know what an amazing gift she has given. I will be forever grateful to Jill and Denise who selflessly gave of themselves to better the lives of others.

(I did share this on Facebook, but in case you missed it, HERE is the story about our donor meeting that was done by channel 6 news.)

Back to Reality

Forty-seven days ago I received my new kidney, and sadly, my medical leave is over. At my appointment on Wednesday, the doctor officially signed off that I have permission to go back to work. Tomorrow is my first day back. The time from my surgery through the recovery period went very quickly. Too quickly.

The official back to the grind document

I’m not going to lie. I’d be quite happy to stay home and not have to work. While I have a good job and work with good people, there’s something about not having the stress of work to deal with everyday. The first two to three weeks were hard because I was uncomfortable, couldn’t sleep well, didn’t have an appetite, was adjusting to the medications, didn’t think I’d ever be able to wear regular pants again, and had little energy. After the first few weeks, however, when I started to feel better and could drive again, I was able to enjoy being home. Some days my biggest dilemma was whether I should read, color, or watch TV. I read the books that were piled on my nightstand that had been waiting for me to find some spare reading time. I took an online graduate class and finished in record time. I had odd sleeping hours and didn’t mind if I was awake at 3:00 a.m. because I knew I had the day to rest if I needed. I got myself outside walking and was able to take advantage of this nice fall weather we’ve had. I was also home if Abby needed a ride to or from school or practice. We canceled Griffin’s before and after care since I was going to be home. I was able to wait with him in the morning and see him on the bus. I was home to see him get off the bus in the afternoon. I’ve never been able to do that since I’ve worked all through my kids’ years. I could get housework done when I felt like it. The dishes were put in the dishwasher, washed, and emptied on a daily basis. I could vacuum and get laundry done during the day rather than trying to cram everything in on a Saturday after working all week. Everything was just easier.

Much of my days were of Josie just staring at me. No idea why. She'd just stare.

Fortunately, I am feeling good, so I should be ready to get back in the groove. Most everything since the transplant has been positive. The two issues I continue to deal with are a medication level and elevated antibodies. One of my anti-rejection drugs is supposed to be in a certain range to do its job. Mine has been either too high or too low, neither of which is safe or effective for protecting the kidney. My medication doses have changed frequently, yet it just keeps skipping the correct range. When I was at my appointment on Wednesday, the doctor was reviewing my levels over the past six weeks and when he read the one that was the highest, he said to me, “Wow! That was high. You could’ve had a seizure.” Awesome. This drug also gives me tremors. My hands shake a lot and I’ve lost some fine motor skills. Writing, holding eating utensils, and anything that requires my hands to use some skill is more work and I really have to concentrate. The positive though, was that on Wednesday, the previous blood test showed that the med level was finally in the correct range! And then, yesterday, I got a call from the doctor saying it had gone too low again. It was fun while it lasted.

The second issue is that my antibodies have elevated from class I to class II. Elevated antibodies are a risk factor of organ rejection. They increased another one of my anti-rejection meds and are hoping once the other one gets into the correct range, there will be some improvement with the elevated levels. If it goes higher, there is a chance I’ll need IV therapy to try and see if that can help. That’s definitely not my preference, so hopefully things improve without adding that fun. But, I will have to do what I have to if it means keeping this kidney.

The final thing I need to think about is germs. As I return to the petri dish that is school, I have to wash frequently, stay away from the hacking students as much as possible, remember not to touch my face, and wash the tables and doorknobs daily. I will be a germaphobe. The anti-rejection drugs suppress my immune system, so I can’t fight off illness as well anymore. Maybe I’ll just sit in a bubble at my desk to be proactive. Then George Costanza and I can play Trivial Pursuit and he’ll ask me who invaded Spain in the 8th century. I’ll know the correct answer is the Moops.

Life after transplant has its ups and downs and there’s always uncertainty. One thing I’m certain about, however, is that I am going back to work tomorrow. Since I am not wealthy and don’t appear to be coming into money any time soon, I need to earn that paycheck. The rushed days, the added stress, and the lack of freedom are creeping back in. I realize this is like every other working parent/adult, so I just need to suck it up and set that 5:00 a.m. alarm Monday morning and deal with it. Well, maybe I should set it for 4:45 because I now need time to take 13 pills before work. Back to reality I go….

Life After Transplant

Well, it’s been one week of waking up with a new kidney. I still can’t believe it has already happened. I imagined that waiting for a kidney would take years, not months. Now I am adjusting to life as a transplant recipient. Here are a few things I’ve learned.

1. I’m not sure when I’ll ever be able to wear real pants again.
2. After having 2 C-sections and now this even larger surgery, there is no hope of ever having abs again. I need to accept the bulge.
3. Taking 12 pills with breakfast and 6 pills after dinner is a lot and my body is adjusting to some side effects (heartburn, shaking hands, hot hands, nausea, etc).
4. Trying to find comfortable sleeping positions is hard.
5. My body looks battered and bruised where all the needles, IVs, and shots went in me everyday.
6. Lifting legs to put on pants, socks, shoes, or shave is hard.
7. I still don’t like needles.
8. Taking a shower or emptying the dishwasher makes me tired.
9. I walk like an elderly woman.
10. I have a lot of medical appointments. I am going to the post-transplant clinic twice a week for the first month and then it will go to once a week.
11. I’ll be glad when my stomach feels normal again. The discomfort and bloated feeling as well as the irritation around the incision just won’t go away.
12. Sitting up or rolling over is hard.
13. My back hurts. I don’t know if it’s always trying to find a comfortable position, my weakened abs pulling at my back, or my compensating for my stomach discomfort. Lying with a heated rice bag under my lower back is my new favorite hobby.
14. I haven’t gotten my appetite back and almost anything I eat gives me heartburn.
15. I’m afraid my donor didn’t like coffee because I haven’t had coffee or even a taste for it since my transplant. I really want to want my Dunkin’ Donuts again, but her DNA may be taking over!
16. I don’t really know what to do with myself. I don’t have much energy or comfort to do much, but I feel like a slug lying around.

But most of all, I have found what amazing people I am surrounded by! In a time when our world feels ugly, I have been shown the most kindness and generosity. First, it goes without saying that none of this could have happened without my friend who went through the process to be my donor and now is giving to a stranger so that I was put in the kidney swap chain. This transplant would not have happened without her. She not only got me this kidney, but will be giving one of her kidneys to a man in kidney failure in a couple months. How do I ever really thank her?? And, of course, the woman who actually donated to me. These are two very giving women!

Even as I went through the referral process and the days leading up to the transplant, people have been so caring and shown such concern. Friends, family, co-workers....everyone. The day of the transplant I had two friends wait with Jason during the surgery. I was completely overwhelmed by the number of texts, Facebook posts, and messages I had waiting for me after the surgery. I couldn’t respond to them all, but I did read them all! Thank you! I have had a number of people send me regular check-ins to see how I’m doing. I get texts from friends saying they’re heading to Hannaford or Target and wonder if I need anything. I’ve gotten cards from people from Maine to Washington! I’ve received so many way too generous gift cards from friends and co-workers that we can probably eat out every night for the next 6 months! Teachers at my high school signed up to make us meals, so yummy, healthy dinners have been arriving almost nightly. Teachers at the elementary school in Cape gave us housecleaning services. Numerous flower deliveries were made to the hospital. Even the nurses on R5 at MMC got me a stuffed kidney that they signed. Not to mention the great care they gave me. Jason has some pretty awesome co-workers. Those nurses and CNAs have a hard job and they did it with ease and were always there to help with anything. My family has also been great. My parents stayed here to help with the kids, cooking, and housework while I was in the hospital. They would come back at any minute if I needed anything. And my honey...he has had to do it all! He’s been a husband and a nurse. The poor guy even had to make his own birthday dinner!!

So, as I adjust to life with a third kidney, I am very grateful to all of you for the kindness and support that you’ve shown me. Thank you for proving that there is still good in this world.

Transplant Eve

Christmas Eve, New Year’s Eve….fun, celebratory eves. But transplant eve...how does one celebrate that?

Well, by packing a small bag and taking a shower with a special antimicrobial soap, of course.

It’s hard to believe that tomorrow is the day. When I started this blog back in April, I had no idea that I’d be getting a kidney just six months later. It seemed like something that probably wouldn’t happen for years. Yet through the generosity of my friend and donor, I am getting a kidney tomorrow. I still don’t quite feel like it’s real yet. Even though in a few short hours I’ll be heading to the hospital, I’m still in disbelief.

The biggest question I’ve gotten in the last couple weeks is, “Are you excited?” As lucky as I am, I’m not sure excited is the word I would use. When I got the call that I had a kidney, that was exciting. That’s the call that everyone on a transplant list wants to get.

A couple weeks ago I had my pre-op appointment. I started the day at the Maine Med Brighton Campus for bloodwork, an EKG, a meeting with someone from anesthesiology, and a nurse. Then I went to Maine Med for a meeting with someone in the transplant department and for a tour of the floor I’ll be on as well as finding the surgery center. Then I finished the day at Maine Transplant where I met with my nurse coordinator, a nephrologist, and a surgeon. It was a full, overwhelming day. I heard about what would happen before, during, and after the surgery. After that day it hit me a bit more and the excitement went more to nervousness. Then I had two weeks to focus on this whole crazy day. Getting a living donor is ideal for many reasons, but there is something to be said for getting a cadaver kidney. You get the call and you have a short amount of time to decide to take it or not. You don’t have time to focus on all the what-ifs and the procedure. It just happens in a whirlwind.

So tonight there will be no tree lights lit, noisemakers blown, or champagne at midnight (because I can’t eat or drink after then), but I will be celebrating this eve quietly as I prepare for my transplant journey. I am nervous, but thankful and lucky.

It's Getting Real!

What do you do when you have a ton of school work to do? Write a blog, of course! Sometimes good news just has to take priority over work.

So today, while I was teaching period 5, I could hear my phone vibrating. I wouldn’t normally answer my phone during class time, but my Fitbit also vibrates and shows the number calling when my phone rings. I recognized the number and had to answer it. There was another teacher in the room as well, so I took the call in the hall and no students were left unattended. I am responsible after all.

The call was from my nurse coordinator at Maine Transplant. She was calling to let me know that they have a willing donor who is a match for me. I think I was in a state of disbelief, especially when she said it’s possible for the transplant to happen in 5 to 6 weeks. Then I went back to class and carried on, but with limited concentration as my mind raced with this news.

On my drive home this afternoon, my phone rang again. It was the nurse calling with more information. She asked me how I felt about having the transplant on October 11th. Apparently my donor is able and willing to do this! That’s only like four and a half weeks away!!! So crazy!

This whole process has gone much quicker than I ever expected. People wait years for a kidney and often have to go on dialysis while waiting. And I’m so lucky to be getting a living donor! This wouldn’t even be happening if it wasn’t for my friend. As soon as she knew I was referred for a transplant in April, she contacted Maine Transplant to see what she could do. She went through the testing only to learn that we weren’t compatible due to my elevated antibodies that rejected her. Although she could’ve stopped there, she opted to proceed with the Kidney Paired Donation program. I discussed this process in the last blog. Her willingness to donate a kidney to a stranger in order to help my odds of getting a compatible donor is amazing. I only got that call today because of her generosity. In addition, the woman donating to me was also part of a swap. I don’t know much about her for privacy reasons, but I do know she’s from Maine and her husband has had a transplant as well. He received a kidney and now she’s ready to give that same gift to a stranger. These two ladies are incredible and beyond generous.

So, October 11th is penciled in on my calendar. It’s all so unbelievable, but exciting at the same time. This is the call that people on a transplant list wait for and mine came thanks to my friend (who I hope someday will want to be revealed)!

Whenever people learn that I'm in need of a transplant, they always seem shocked and comment that they'd never know I was sick. I found this quote on a site for people with kidney disease. I thought it was funny!

Kidney Swap

As I prepare to begin the 2016-2017 school year in just three short days (yikes...I’m not ready to have summer end), I thought I’d write my last summertime post to update where I stand right now.

So, as most of you know, I did not get a new kidney during the summer. It would have been an ideal time since I’m on vacation and my surgery and recovery time wouldn’t require time away from work, but that didn’t happen. Waiting for a kidney, or any transplant, can be a long wait. And in all honesty, I’ve only been on the donor list since the end of June, so two months isn’t long in this situation. It can take years.

In my last post I shared that my antibodies caused me to reject the two people who had come forth as potential donors. Well, one of those people opted to continue on in the process of helping me to find a kidney. And I only say one because I don’t know if the other person has or not. I know about one candidate because she has shared this with me. Maine Transplant Program can’t give me information about the other people for privacy reasons. The person who is going forward has agreed to be part of the Kidney Paired Donation (KPD) program. This program is an additional way to find a living donor who is a match for me.

As amazing as it is that I’ve had people come forward to be a living donor, I feel like my friend who is going this route for me is even more amazing. Not only was she willing to donate a kidney to me, but since we weren’t compatible, she’s still willing to give a kidney to a stranger to not only save their life, but to increase my chances for receiving a kidney. She started this process in April when I learned I was being referred to the transplant team. Four months later she’s still going through it. Most recently she had to have further testing such as more blood work, an ultrasound, be injected with dye for a CT scan, have an EKG, and meet with various staff members at Maine Transplant. It’s not official yet because the committee has to review her case and determine if she is a candidate to be part of this process. However, if she is, they will start finding compatible pairs for us. I will then become part of the National Kidney Registry and the Kidney Paired Donation Program which is run by the United Network for Organ Sharing (UNOS). Yesterday I signed consent that I agreed to be part of this option.

The goal is to find another person in need of a kidney who has a willing donor, but they are an incompatible pair, so my donor could give to that person needing a kidney and then their donor could give to me. Databases help to match people. Sometimes it requires more than a pair and it becomes a kidney chain. My match could be in California and they would fly a kidney to me so that I’d be able to have surgery right at Maine Med.

A paired kidney swap

A kidney chain

I am still on the deceased donor waiting list and as I’ve mentioned in numerous posts, my preference is to get a living donor for a number of reasons. If my donor makes the criteria for being part of the kidney swap, this will hopefully increase my chances of this happening. My test results from this week showed that my kidney function has decreased further in just the past month. So while I am eager to make something happen, I just have to keep waiting patiently. Someone once said, "all good things come to those who wait," right?

When I learned that my friend and I weren’t compatible, I told her she didn’t have to keep going on to this next step. It’s a time consuming, sometimes uncomfortable process. However, she is a runner and she said, “I’m thinking about this like it’s a marathon.” Well, if it happens and it all works out, this will be a marathon where there will be multiple winners crossing that finish line.