In memory of my brother, Jack, who died of kidney disease at the age of 57 years in October 1998.

Since most of you seem interested in my pursuit of a kidney donor and my general well being, we decided to have an “update” to keep everyone who is interested current and happy. I will try to give updates weekly or as I move along through the process. I’ve done all my library and research work and I’m very optimistic about my outcome.

Once again, let me say that I feel normal (whatever “normal” is these days), but I have begun to show some symptoms of my kidney disease. I find that I am not very hungry and have dropped some weight, but am doing all I can to not drop anymore. Believe me, Rog is looking over my shoulder about my food intake and I think I am making him happy by eating correct portions of my restricted diet (watching my protein, low potassium, low salt). I promised him no more weight loss. I’m between 110 and 113.

As I’ve said, I am willing to answer any and all questions and am very open about my disease. Please let me know.

12/21/05: The Transplant Team wanted to make sure my heart was healthy, so I had my first test. It is called a DSE Echocardiogram and replaces the stress test. It is an extremely easy test, lying on my side while they injected meds in my arm to make my heart get to its target zone. The technician then took pictures of my heart as it was working hard. The results were “absolutely normal”, so I’ve passed the first test. Yippee!

1/13/06: This was the first meeting that we had at Massachusetts General Hospital (MGH) to discuss the transplant process. Rog and I met with Jayne Reilly (the Transplant Coordinator) and Susan Streeter (the Social Worker), for a couple of hours. Then they sent me to the Blood Lab for extensive blood workup and a chest x-ray. Later in the day we met with one of the surgeons who discussed the actual the surgery. MGH did their teaching and testing, and we received our education and were home by 5:00p. It was very tedious but very enlightening. I learned that the surgery was a “piece of cake” compared to my heart surgery in 2001 and that there would be a fast recovery period. I learned that they don’t want me to go on dialysis but rather by-pass that and go right to transplant, which I liked!! The next meeting I have is a Family Meeting on February 14. My son, Kel, will be flying in as well, and we’ll be meeting with the entire team, where they will go over all of my results, and tell me their prognosis. Needless to say, I am looking forward to that meeting.

1/24/06: I just had a week of high potassium counts and went into Boston for 4 blood tests to get it back under control. High potassium goes with kidney disease and can cause serious damage to your heart if the levels get too high and out of control. They like to treat it immediately with prescribed drugs. I now have it back in the normal range. I will go again in 10 days to see if my potassium can stay low. Let’s hope it stays “normal”.

1/26/06 : I have very exciting news! My friend and colleague, Pete Phildius, along with our Marketing Department (Peter Cholakis), asked Shift Communications (a local PR), if they would help in finding me a kidney. Shift found my story “compelling” and they have agreed to help me. There are 7 Shift employees who will be spending their time talking to newpapers, television, radio, and other media in a two-pronged approach. First they will be looking in the New England area for a compatible donor while at the same time creating an awareness campaign in the area. They will be working with the National Kidney Foundation about the extreme need for kidney donors. March is National Kidney Month and April is National Donor Month. Pete and I have met with them this morning and I am so encouraged.

2/6/06: There is evidence that my health is declining and I have been told that my transplant will probably happen between the end of March to May. I have five potential donors, most in the New England area. I’ll know within the next few weeks if there is a match. And Shift is still working hard for me. I am still feeling good but am fighting some anemia. I have been put on extra injections of Epogen twice weekly. The meds should perk me up by Friday.

2/16/06: I have just had two days of intensive meetings and it was an emotional roller coaster. Kel flew in from San Francisco and DeeAnn (sister-in-law) came from Philadelphia. We headed down to Mass General Hospital for the BIG family meeting with possible donors where a transplant surgeon explained both donor and recipient surgeries. My nephrologist led the meeting. They explained the risks, pain, and recovery and we were all still very encouraged. The donors got blood typed and the meeting adjourned. It is very difficult to hear that my health is deteriorating quickly and it is a race to the finish line. They are now projecting surgery in 8 weeks and it is terrifying to think that I may not have a donor.

The next day we met with Shift Communications who are dedicated to helping me. I felt tremendous emotion (as did my family) to see what these people are doing for me. It is a wonderfully heartwarming experience to see such kindness around me. I am forever grateful.

I’m still optimistic.

2/24/06: Wow!  This is a very dominant gene in my family. Within the past 30 days, I have had 3 family members tell me they have Hereditary Nephritis. They are the grandchildren of my dad. Two males are in their mid-30’s and a female in her early 50’s, all showing above normal creatinine levels. All have no symptoms and are feeling perfectly fine. I also just found out that a friend who is in his 50’s has polycystic kidneys that has been treated by his internist, was told he needed a transplant in the next two years. He has now been referred over to a nephrologist.

I urge you on your next visit to a physician have your doctor check your kidney values through your blood. If there is any slight increase above normal, please seek the opinion of a nephrologist because there is medication that can be given early in the process to slow the progression of the disease. It is important that people become aware of kidney failure. The National Kidney Foundation quotes that 1 in 9 people do NOT know they have kidney disease. 

2/27/06: Last week was a roller coaster ride for me. At the beginning of the week I had no donors that matched; by the end of the week I found out that I may have a potential donor. Up and down, up and down. For now, I’m holding onto the good news. I’m feeling tired but otherwise great, have improved my diet, and still have energy.  I weigh 106.

3/7/06:  I just found out my blood results from yesterday, and except for my potassium, my numbers have improved. I have increased my protein levels and I’m sure that is why I am feeling very good.  I have begun to exercise again and have a much better appetite. I have gained some weight and don’t feel sick at all. As I understand from the visit at MGH yesterday, as soon as I find a donor, we will immediately do the surgery. I have another potential donor (a close friend) flying in from California to be tested on Monday. I’m not thinking about my health issues lately and actually can get on with other things in my life. We are expecting our grandson’s debut this week and we’re focusing on his birth right now. It is a very busy time for us. And we are enjoying ourselves. Stay tuned ... things change daily!

3/15/06:  Today, it is bright and sunny and 45 degrees. The wind is blowing and I feel that Spring is in the air. I’ve seen my very first robin this week in our backyard. Things are good. Here’s my news for this week. My friend from California didn’t match and another friend and potential donor was tested on Tuesday. We are awaiting her results and I should hear something next week. I am also on the “cadaver” list with the New England Organ Bank, and the Transplant Team is also looking for a “swap” with Roger and me. (This means that Roger would donate his A type kidney for an O type kidney that would match me.) Of course, a living donor is the best and hopefully some altruistic (kind) soul will come forward in the near future. I’m staying optimistic.  

I am also excited about the NKF Walk-a-Thon that my friends at Shift Communications are organizing for me. It is being held on May 21 on a beautiful (we hope) Sunday through the zoo. I hope that many of you can join us. It is a 3-mile stroll and should be lots of fun. To join, e-mail help@kidneydonor4diane.com. Obviously, it is sponsored by the National Kidney Foundation and is an event that I am really looking forward to. We need to raise awareness in the New England area for the need of kidney donors. In 2005, there were just over 60,000 people in the U.S. that needed kidneys; there were only 16,000 kidney transplants. There are just not enough donors to fill that need. March is Kidney Month. Become aware and check out this Web site to see how you can reduce your risk for chronic kidney disease.

4/5/06:  Here we are in April, it is springtime, and it is SNOWING outside. It is actually sticking to the ground, even with the flowers poking through. Oh well, it will melt shortly.

I’ve been “off the air” for the last three weeks because little Beckett was born. My little grandson will be three weeks old tomorrow. He is a wonderful diversion from all my kidney issues, and watching Sophie interact with him through pictures and videos keeps me focused on the important things in life. It is not clear when I will get to hold him or travel out to the West Coast but that is in my plans. I also need hug my 88 year old parents in Alabama. Hopefully, I’ll feel well enough to get these two trips in before my surgery. And no, I don’t have a donor yet.

My potential donor that was blood and tissue typed has somewhat matched and she is taking the second step in the screening process. I will know more after Tuesday. Meanwhile, here is what is happening. I apparently have antibodies in my blood that make a match more difficult, a 40% chance that I will find a donor. This is, of course, not impossible to do, but it will just take a little longer and I would need more people tested for a “perfect” match. One way to solve my antibody issue is to wash my blood, and get rid of them, a process called plasmapheresis. This would allow a better match and more opportunities for a donor. Also, I’m on several lists with the Organ Bank and Rog is still in the picture for a swap, all these options with a cadaver kidney. However, the very best way is to find a living donor that matches, hopefully before I need dialysis.

The momentum for a living donor is building. My friends at work in conjunction with my friends at Shift Communications are developing an “outreach plan” that we are gradually implementing involving blogging, the Boston Marathon in April, the NKF Walk-A-Thon in May, awareness in the local and regional papers, and hopefully some TV coverage as well. It is all very exciting and hopefully my enthusiasm will sustain my energy levels. I’ll keep you posted.

4/14/06: You are probably wondering what is happening with me.  I have been very busy and feeling good enough to sustain the energy levels needed to keep everything going and moving along.  In trying to do the right thing with my kidney disease, I somehow got some bad information and therefore was literally starving myself.  My nutritionist improved my diet and as a result I’ve gained 2 pounds so far.  The plan is to gain 8-10 more.  She has helped me quite a bit and I’m feeling much better.

Last month, President Bush declared April as National Donor Month. It is significant that the need for donors is so great, that he declared it a “national month”.  The website www.organdonor.gov/ has some interesting statistics and starts off with headline that “91,500 people are waiting for the ‘gift of life’.”  My need for a kidney has created my pledge to help folks become aware of this desperate need. Here are some of the things we have been doing to help.

This Monday (April 17), 10 of us … and 2 dogs … are headed to Hopkinton for the pre-Boston Marathon.  We had specially designed shirts, and some cards we will hand out. to promote awareness on the continuing need for donors.  Yes, even the dogs will be wearing these specially designed, brightly colored, neon shirts. There will be others along the route wearing the shirts as well.  We are expecting to have fun “people watching” and are hoping that “those we are watching” will be “watching us” too.  Perhaps we will catch a TV camera or journalist, but we definitely will be talking to folks who seem interested.  And, of course we are still out there raising money for the National Kidney Foundation in conjunction with our Walk-A-Thon in May.  So far, Team Diane is the leading fund-raiser for this event.  And yesterday, I was contacted by a reporter from the Metro West Newspaper who was writing a story about the ethics and difficulties of finding kidney donors and the different policies of the various Boston hospitals.  It will be included in Sunday’s paper and probably in the Boston Herald.  I hope I said the right things!

I just want to thank all of you.  I am so appreciative of all the kindnesses you’ve shown me in so many ways.  Sometimes it is truly overwhelming.  Stay tuned …

 5/16/06:  So much has been happening within the last 30 days.  Sorry I’ve been away.  Here’s the update.  First of all, on the donor side, things are moving forward.  I have two potential donors, one is my friend of over 20 years who has proceeded through the testing thus far at MGH.  There is still more screening for her but I’m keeping my fingers crossed. 
Also, as I mentioned, Rog and I are enrolled in the “swap” program, and I’m also on the national non-living kidney list.

However, all this requires a special protocol because of my blood sensitivity and therefore, I am still in search for a “perfect match” with my antibodies.  That is my best chance for long-term survival. 

We have about 20 people so far signed up for the zoo walk this Sunday.  I am predicting a beautiful 70-degree day coming up just because we’ve had our share of rain and flooding in New England the past two weeks.  We all have our “yellow” T-shirts, a placard we are carrying, and tons of enthusiasm.  It’s all for such a good cause (or at least I think so!!!)  So far my friends have raised just about $1,500.00.  My goal was originally $1,000.

Unfortunately, my friends at Shift are no longer able to work on Team Diane during business hours because of time constraints, but I’m hoping I don’t lose the friendship of Rebecca, Rebecca, Emily and Tina.  They been extremely supportive of me and my family and I’m glad I’ve gotten to know them.  Pete has picked up the momentum and formed Team Diane II and we are thinking of different ways of awareness.  I think we have some good ideas and I’ll let you know as we move through the process.

I’m still feeling good, but I do have some days that I’m more fatigued than others.  It’s a battle trying to gain weight mainly because I don’t have an appetite, but I’m doing the best I can, and Rog is always there encouraging me.  I still have enough energy to have “a pep to my step” and am not “dragging” around looking poorly.  Dialysis is still down the road and nobody is mentioning it to me, and I’m not either.  I’m still hoping I can get the surgery in before dialysis.

If you can think of any help you can give me, please call me at (781) 575-9790.