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!

Spreading Awareness

Polycystic kidney disease is one of the leading causes of kidney failure, and about 600,000 people in the United States have it, yet not many people have actually heard of the disease. Unless it impacts your family or a friend, most people will go through life without any knowledge of it. Unlike another cause of kidney failure, diabetes, almost everyone has heard of that disease. With this blog, I am trying to do my part to spread awareness of this life-threatening disease to the two or three people who might actually read this.

Polycystic kidney disease is essentially what is says; fluid-filled cysts that grow in the kidneys. These cysts become large and eventually damage the kidney, resulting in kidney failure.

A normal kidney is about the size of a fist. Some kidneys with PKD grow to be as large as a football and can weigh about 30 pounds each. I'm sure my scale would look much better if these things weren't weighing me down. 

I think when people learn I have an incurable disease or that I’m in stage 4 kidney failure, they are surprised. I don’t look sickly per se (insert your own jokes here). For most of the time, I have been able to say “I wouldn’t know I had it if I didn’t know I had it.” I’ve been fairly symptom-free. My blood pressure has been maintained as I’ve been on blood pressure medications for years. I haven’t had any pain, kidney infections, or any of the other symptoms. At this point, the biggest problem I have is fatigue and low energy. This has happened gradually over the years and with having a full-time job, two kids, and a busy schedule, I just assumed that's why I was tired. However, my running is where I’ve noticed the biggest change. Last year I found running to be more difficult and I couldn’t figure out why. It was like I had lost my groove. I had no stamina, it never really felt comfortable, and it was harder to maintain a comfortable breathing rate. I thought maybe because I had run less during the winter months that it would just take some time to get back in the swing of it. That was not the case though. It finally hit me that my slower speed, my inability to run the same distances, and my overall low endurance was from my PKD. Despite this, I am still running almost everyday on my treadmill or outside. I have definitely cut back on races though and that kind of stinks.

When I think about my next steps, it seems odd to me because 1) it’s hard to realize the severity of where I really am healthwise, and 2) it’s hard to believe that my health is at this stage and I still feel pretty good. I wonder how I can be sick, but not seem sick. And I’m not complaining...I’m glad to be able to go about my daily life without too much trouble and sickness. Hopefully this lasts now and after the transplant!