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.

One Step Forward, Two Steps Back

I’ve been on the national and regional deceased donor waiting list for exactly one month. I didn’t expect to actually hear anything at this point because the average waiting time for a kidney from a deceased donor is 3-5 years. As I discussed in an earlier post, receiving a kidney from a living donor is better, so I’ve been hoping this would happen for me. I was disappointed when Jason was ruled out because of a kidney stone he had about five years ago. However, I had a friend who also had the same blood type and had begun the process of being evaluated to see if she was able to be a donor. Another person also contacted me about beginning the process. I was so grateful that two people were willing to do this. Both had progressed through the stages up to the point of where the cross matching was done. This essentially means that my blood is mixed with theirs to see how they react to each other. If there is no reaction (a negative cross match), then the recipient should be able to accept the donor’s kidney. If there is a reaction (a positive cross match), then the recipient’s immune system has killed off the donor’s blood cells, which would mean the body would do the same thing to a transplanted kidney. It would want to fight the “foreign object” put into the body.

Part of being on the transplant list is having monthly antibody tests. Today I learned that I have a higher level of antibodies which means that I will have a more difficult time finding a match because I’m more likely to reject a donor. My last test showed my Panel Reactive Antibodies (PRA) to be at 42%. That means that 42% of the population will not be able to donate a kidney to me. The antibodies present in my blood will attack the transplanted kidney and cause rejection. This was discouraging to learn. Then the discouragement got even greater when I learned from my friend that we aren’t a match because my antibodies were reacting positively to her. Positive is usually good, but in this case positive is bad. She had also heard from the transplant center that the other person in the process was also having the same issue. My antibodies were fighting against them! Why must they be so difficult?

I had hoped that one of these two would be my match. I’ve been hoping to get that call that gave me good news that I’d be getting a healthy kidney. Sadly, this will not be happening. At least any time soon. My nurse coordinator said that I need a donor with DNA that is more diverse than my own to have the best luck for a match. She said they are exploring some options for me and that I shouldn’t give up hope.

It’s hard not to feel discouraged at this setback, but hopefully there will be something else that comes along that will work for me. The waiting game continues.

It's Official!

Today has been on my radar for a while now. I knew that today was the day that the Transplant Candidate Review Committee was meeting about my case. Based on all my medical testing and current kidney functioning, they had to determine if I was suitable for the kidney transplant list. This afternoon I got the call that I was accepted. As of tomorrow, I will officially be on the kidney transplant waiting list.

When I was at my appointment a couple weeks ago, I was told that if I was accepted on the list, I might have to be put on inactive status. Insurance won’t cover a transplant until kidney function is 20% or below. As of April I was at 22%. Part of me was glad that maybe I’d have to wait. On the other hand, after going through this process, I wasn’t sure I wanted to wait for what was inevitable. Was it better to have my kidney function maintain its current level or drop so I could get on that list and get the ball rolling? Well, I didn’t have to think too hard about it. At my last appointment they took more blood. My nurse coordinator called me last week to say that my functioning had dropped to 20%, so I just made the cut-off.

My hope is to have a living donor, but being on the list is the next best thing. It can take years to get the call, but one never knows when that match will be found. I just hope I can avoid dialysis before I’m able to get a new kidney. For someone who likes to have control and be able to plan, this is all out of my hands. All I can do is wait...

The Road Leads to R5

Sometimes the world works in weird ways. As I shared in my last entry, my mother had a kidney transplant in 2006. After the transplant she had many complications requiring hospital stays. For both the transplant and the extended stays, she was on R5 at Maine Medical Center as they focus on nephrology patients. I made a lot of visits to that floor. It got to the point where it would be a regular afternoon coffee break for me. I’d go in after work or on the weekend, grab a cup of coffee from the little kitchen, and visit with my mom. Sometimes Abby, who was a toddler, would have a cup of ice cream during the visit. We spent a lot of time there.

Fast forward to 2009. Griffin was just born and Jason found out his company was being purchased and ultimately he was laid off as his office was shut down. He wasn’t too sad about it. While the job paid fine, had good benefits, and he liked the people he worked with, he didn’t love the job. This wasn’t the best time to be out of work as the economy was rough and jobs weren’t as plentiful, so he didn’t have any luck finding a job that was comparable to what he had. He decided to stay home and be Mr. Mom for a year. Griffin was a baby and Abby was starting kindergarten. Having Jason home was nice because the kids were taken care of, the house was clean, errands and groceries were taken care of, and dinner was made most nights.The only thing missing...a paycheck. After a year off, Jason knew he had to do something.

When he talked about going back to school, especially to be a nurse, I was surprised. This was not a profession I ever expected from him. Having been a submariner in the Navy, working for an insurance company, and then a financial company, nursing seemed quite different. I wasn’t sure if it matched his “sensitive” personality. After all, in his corporate jobs, he’d occasionally have someone break down crying when he met with them and he never knew how to respond to their tears. I’m sure he just wanted to tell them to suck it up. He also gets enjoyment from watching people get hurt. I’ll see him in his chair laughing hysterically and I find out he’s watching videos of people falling. Those sound like perfect traits for tending to sick and injured patients and dealing with their family members.

Despite his “empathetic” ways, Jason applied to the accelerated nursing program at USM, which is for people who already have a Bachelor’s Degree. It is difficult to get into as it has a minimal number of openings and certain requirements must be met. Fortunately, he was accepted. It was a very intensive program and he was required to do well, so he studied a lot. It was a bit challenging at home because I went from having Jason home helping with the kids and doing so much there, to being gone to class, doing clinicals at Maine Med, or studying all the time. It was from one extreme to the other. Although at times I think he may have said he needed to study at the library just to have some peace and quiet from us. Just a theory…

Eventually Jason graduated with his BSN and passed his NCLEX on the first try. He was officially an RN. His first job was at St. Mary’s in Lewiston, but after four months there, he got a job closer to home at Maine Med. Coincidentally, he was hired to work on R5, the same floor my mom spent so much time on. When my mom had her transplant in 2006, we had no idea that Jason would ever become a nurse, let alone one on that floor.

If I am lucky enough to get a kidney and go through the transplant process, I will be a patient on this floor. Jason speaks highly of his co-workers, so I know I’ll be in good hands. Jason did start the process of being a living donor for me since we have the same blood type, but because he has had one kidney stone in his whole life, he has been ruled out. While that’s a bummer for me, it’s probably a good thing for him and his co-workers. If he was a patient on that floor, his co-workers, who are mostly female, would probably see way more of him than they care to. At work he’s wearing scrubs. As a patient, he’d be in a little johnny and they’d have to do what nurses do and that might be awkward for them all.

While I did make mention of Jason’s lack of empathy, it was mostly a joke. Mostly. He really is caring and thoughtful. After all, it was more than just his good looks that made me fall in love with him way back in 1998. I think his character attributes in addition to his previous work experiences make him a good nurse. I know he truly likes what he’s doing and that wasn’t the case when he worked in the corporate world. He finds helping others much more rewarding. I think those patients on R5 are lucky to have him. I know I am.

Ten Years and Counting

This blog entry is dedicated to my mom as today is the 10 year anniversary of her kidney transplant!

My mom has always been very health conscious. She eats right, exercises, takes her vitamins, and follows doctors orders. Despite her efforts to maintain a healthy lifestyle, she couldn’t stop the progression of her polycystic kidney disease. She learned that she had PKD when she was in her 30s. She continued her healthy living and remained symptom free until her mid-50s when her kidney function declined. In November 2005, she began dialysis. Hearing stories of the pain from the needles going in and out and issues with bleeding made this sound very unappealing. Not to mention she had to go to the dialysis center three days a week.

Fast forward six months to May 2006. I got a call from Maine Transplant looking for my mother. They had a kidney match available for her. This was unexpected as they had told my mom that it would likely take years for a match due to her blood type. After me calling everywhere I could think of to find her, she was finally located. When there is a kidney available, there is only a certain amount of time that can pass in order to have the opportunity or they move on to someone else. At first she was hesitant to go ahead with the transplant because she worried about some of the side effects. Of course, we (her family) and her doctor thought she should because the benefits of a transplant outweigh the possible chance of some side effects. She decided to go for it, so she and my dad arrived at Maine Medical Center that night. Her surgery began around 1:30 a.m. and finished about three hours later. The surgery was a success and soon the kidney was working.

Probably a month after the transplant my mom started having some headaches and at some point she had bleeding ulcers in her stomach and lesions in her esophagus. She lost a lot of weight so she looked very frail. She just didn’t feel well. I’ll never be able to remember all of the issues, tests, and procedures my mother had, so I won’t even try. She ended up having the Epstein-Barre virus and cytomegalovirus (CMV), which she got from her donor. This wreaked havoc on her body because of her suppressed immune system. She also got lymphoma, so she had to have chemotherapy. She lost her hair. She had a PICC line in for a long time, she had multiple extended hospital stays, and when she wasn’t in the hospital she had to do procedures at home through a port they put in her. She had one problem after another and pretty much every side effect that could come from a transplant. I think these problems went on for at least two years.

The doctors eventually got things under control for the most part. Despite all she dealt with, I’d say losing her eyesight was probably the worst because that has had a lasting impact on her. The virus went into her eyes. She had regular appointments at Mass General with an eye specialist who treated her by injecting medication into her eyeballs. You read that correctly...they put needles into her eyeballs!! It just could not stop the virus, however, and she is now visually impaired. That took away her independence as she can no longer drive and do things the way she had as a seeing person. She has some visibility, but it’s very limited.

So the good news is that she got off dialysis and has had the cadaver kidney for ten years. Despite all of the challenges she has had, the kidney is working. Other than the visibility problem, she feels pretty healthy.

Mom and Dad

And, I do need to give a shout out to my dad because while he wasn’t the one going through the transplant, he has had a big part in the “in sickness and in health” vow he made almost 48 years ago. He has been driving my mother to more appointments in Portland and Boston than one can imagine since her surgery ten years ago. After the surgery she had all the post-op appointments and then when she was sick he drove her to more appointments. When she was hospitalized he drove down to visit her in the hospital everyday. He brought her to all her chemo treatments. He even learned to do some medical procedures for her at home and he is very squeamish with needles and blood. And since she lost her ability to drive, he not only has to take her to all her appointments, but to do errands and any other place she wants or needs to go.

The last ten years have not been easy, but those two crazy kids have figured a way to handle it all. Happy ten years, Mom!

Donating Life

Have you ever thought to yourself, “Man, this extra kidney is weighing me down?” Well, I am here to provide you with some information that could alleviate that problem.

According to the National Kidney Foundation website, there are 123,000 Americans on a waitlist for an organ transplant. Of those waiting, over 101,000 of those people are in need of a kidney, but only about 17,000 people per year get the lifesaving transplant they need. Everyday there are 12 people who die waiting for a kidney.

There are two types of transplants--from a deceased donor and from a living donor. While both types are lifesaving, the living donor has some benefits. A few of the benefits are:

• A kidney from a living donor typically functions sooner and lasts longer
• The recipient usually has to take less anti-rejection medication after transplantation
• The surgery can be scheduled at a mutually agreed upon time for the donor and recipient. When the kidney comes from a deceased donor, it comes unexpectedly and the surgery has to be done quickly as an emergency procedure.
• The transplant can happen more quickly rather than spending years on the transplant waitlist

However, given the option of no kidney or a deceased kidney donor, a cadaver kidney is the way to go. It is still lifesaving for someone who needs a kidney. And when receiving a kidney from a deceased donor, it is a gift from a family who has made this generous decision while going through the pain of losing a loved one.

I am just beginning the process to see if I’m a transplant candidate. I don’t know of any reason I wouldn’t be a candidate, so I’m hoping once all the appointments and tests are done, I will find out that I am suitable for being a kidney recipient and will go on the transplant list. My goal, however, is to have a living donor, so I’m hoping I will have someone who is able and willing to donate to me.

The first area to determining a match is to be the correct blood type. The donor and recipient need to be the same blood type. My blood type is A+, so I need a donor with blood type A. I can also accept from type O, which is the universal donor. If the potential donor passes the initial screening and medical review, medical staff will then cross match the blood to see if the recipient’s immune system will accept the donor’s DNA. If there is no reaction (a negative cross match), then the recipient should be able to accept the donor’s kidney. If there is a reaction (a positive cross match), then the recipient’s immune system has killed off the donor’s blood cells, which would mean the body would do the same thing to a transplanted kidney; therefore, no transplant could be done.

Deciding to be a living donor is a major decision. You have to be willing to go through lots of pre-testing, meetings with various members of the transplant team, and if you are deemed an appropriate candidate, you must decide if you want to go through with the actual surgery. You are choosing to give up an organ. It’s not like letting someone borrow a dollar to buy a Pepsi. It is taking out a body part and giving it to another person. Along with surgery comes the recovery period, which likely means discomfort, as well as missing time at work. Then there are the follow-up appointments. It’s a big decision and it must be the right decision for the you as the donor and your family.

In my other blog, I wrote about my friend Patty who did donate a kidney to someone. If anyone is interested in the donor process, she is always willing to share her story so people understand the process better. The Living Kidney Donor Handbook on the Maine Transplant Program website has lots of information about the process as well. In addition, on that same website is a Living Donor Online Questionnaire that starts the process for someone who is considering becoming a donor. The medical staff at Maine Transplant will review that information and determine if the person has the potential to be an eligible donor. From there that person will either be ruled out or asked to provide further medical information.

I am fortunate that some people have reached out and asked about donating to me. One person contacted me after my first blog post to say she’d be willing to look into it because she only needed one kidney. While we weren’t a compatible blood type, I was very appreciative of her offer. One other person said that she’d be willing to offer, but due to a genetic condition within her family, she isn’t able to donate. I’ve had three people complete the online questionnaire. One person was declined, but again, very thankful that he even considered. The other two people have been asked to submit more medical information to be reviewed further. Just last night I was chatting with someone and I learned that he has the same blood type as me. He said if needed, he would be willing to see if he was able to donate. I am very grateful for these people and I hope I am able to find someone who is a match.

So, if you would like to consider donating a kidney, there are thousands of people waiting for one. You can request to donate to a particular person, but if you’re not a match for them, you can still choose to be a donor to a person who is compatible with you. Maine Transplant is also part of the kidney exchange program, which is also explained in the handbook. Donate a kidney and save a life!