We have a date!!

Hello to all,

I haven't blogged recently since there hasn't been any news - but now we have news.  I am scheduled to receive a kidney on November 29! I truly believe that your prayers have been aswered in this stunning development - this is only 8 weeks away - I am truly blessed.

Many people wait years through dialysis before a kidney becomes available or never get one - it looks like I will be able to skiip the dialysis step completely.

A word about my donor. His name is Keith Burns, a dear friend who lives in Phoenix with his wife Karen and two teenage daughters, Hannah and Talia. I met Keith some 30 years ago when he was a Pepperdine student, and I took him and his roommates sailing - Neil Nash and Mike Johnson. We have been close friends ever since.

Some of you may remember that Keith directed the Pageant of Our Lord for several years, played the lead in RHCC'S  production of Godspell, and even dazzeled us in Antshillvania. For you old timers, he was my young son in our production of God's Favorite. His talented wife Karen (who learned her trade as a Radio City Rockette) was our choreographer for several years of the Christmas production.

So, for all of that, they are like family to me - and he was chosen out of TEN of you who volunteered to donate your kidneys. Thanks you, dear family, for your wonderful support and prayers - keep them coming please.

Keith is a teacher in the Phoenix area and the timing is perfect. He will be on winter break and be able to go back to school on schedule at the beginning of the year.

So, that's the news for today. I will keep you posted as things develop, but right now we are celebrating and giving thanks.

Susie is doing well even though there are the pressures of her full time job, caring for her dad, taking care of me in my diminished capacity, and trying to be a grandma when she can.  I had a major challenge of too much potassium in my system, but thanks to her research and providing meals and food with low potassium, I am now in the normal range. This could have been a deal breaker, but with her persistance and my giving up chocolate, we have met the goal.

Of course things can change, and until the transplant happens I will be holding my breath a little, but we certainly are happy and joyful at this stage of the game.

Love to all
chip

The fax line is open!

According to the transplant coordinator at UCLA, prospective donors can fax their applications at any time now. So, for those wonderfully kind souls who are considering donating, you may submit the two-sided form to the fax number at the bottom of the page. The surgeons will review the forms and begin testing those who look like the best potential match. There are 6 match points possible; they are happy with four or five.

If you would like to receive a form, I can email it to you and then you could print it out. (hip50@aol.com)

I am aware of the incredible gift you are considering. I know that this is a very personal sobering decision, and there are many things to consider. Disruption of schedule and life are not to be taken lightly.

Some peace of mind can be found in that ALL medical costs, including procedures, testing and any medications are paid for fully by my insurance. There will be no money out of pocket for the donor. Even parking at UCLA will be covered. If a donor's remaining kidney ever fails, he/she will go immediately to the top of the receiver list, and the donor would get the first available kidney - usually within a week I'm told.

So, here we go - I want to state  that whatever happens in this process is to God's glory. He is in charge of healing, providing a donor, and guiding all of us through this. Through His power of creation, he give us the incredibly complex bodies that we live in, and the wisdom and talent of researchers, surgeons, and the medical profession to lengthen and ease our lives while here. I am grateful to Him as the author of life, and to all those who dedicate themselves to the healing professions.

Thanks for keeping the prayers and thoughts coming......
chip

Movin' Right Along

Well, it's fourth of July weekend - our porch flag is flying on a warm and sunny day, the ocean looks calm and peaceful, and summer is finally here. It has been an interesting week, more learning about my impending future, so thought I'd post this update.

Susie and I went to an orientation meeting for Peritoneal Dialysis. This is the type I will choose if I am unable to find a kidney before losing all function. Right now I am at 15% function, and it is up to my nephrologist when and if dialysis should start.  There are other factors such as creatine level that are considered, but it is a possibility at any time. I could go on as I am for months, or I could lose more function tomorrow.  So I have to be ready.

Briefly, Hemodialysis has to do with the blood, a patient is stuck with a needle 3 times a week at a dialysis center, hooked to a machine, and the blood is scrubbed over a 3-4 hour period. These appointment times are non-negotiable and must happen three times every week. No time off for good behavior.

Peritoneal Dialysis involves having a tube inserted in the peritoneal cavity (where your internal organs live), filling the cavity with a solution which cleanses the blood, then draining it out, and putting in another batch. This must be done four times a day and takes an hour or so to do each time. At least you can do this at home or while traveling. Eventually you can work up to a machine that scrubs your blood at night while you sleep. You can then travel with these machines on airlines and such, but the 2 litre bags of solution must also be taken with you, or they are shipped ahead to your intended destination. You will go through four bags a day.

So we are preparing for this possibility. A social worker will be coming to our house to make an assessment of the cleanliness of our home - infection is a critical factor - then sometime in the future I will have the catheter tube surgiclaly inserted. I hope never to use it of course, but if I do crash, I will be ready. If I am able to have a transplant soon, they will just remove the catheter at that time.

For you considering being a donor - I haven't received the official letter from UCLA confirming my addition to the national transplant list yet, but as soon as I do, they will accept the faxed application forms. I can send these to you by email if you want me to.  Being a donor is a very personal decision. I am humbled that anybody in their right mind would want to give up a part of their body to me - it is truly a life giving gift.

Well, enough for this time - I hope you all enjoy the holiday weekend - we're just taking it easy. The unkindest cut of all, I had to stop after only nine holes of regulation golf yesterday - I was about to fall over. I will have to put that on hold until after my new kidney I think. Well, one day at a time.

Love to all,
chip

Well, Howdy Folks!

I've decided to join the blogesphere in order to post various observations of life, liberty and the pursuit of happiness. I will try to keep things succinct and relevant, but who knows where the road will lead. My main reason for starting this is to address the fact that I am now approved for the national kidney transplant list, and will be anticipating a transplant in the near future. Many of you have asked about the possibility of donating, so I will post some of the answers to your questions here. Other than that, I hope to keep this as a fun creative outlet, a humorous read from time to time, and maybe inspirational in one way or another. Love to all who enter this portal....

7:47:00 PM

A few more items....

Good morning to all - June Gloom here on the coast is a drag - where's the sunshine?? Oh well, July is coming up.

Aside from being tired a lot, life is good - summer is here, flowers blooming, birds singing and all that. UCLA says I will be on the national list within a couple of weeks, so we're making progress.

In answer to a couple of questions:

I am blood type O - in order to do a direct transplant - donor to patient, the donor would have to be type O as well - positive or negative doesn't matter.

A cross-match transplant involves 4 people - two donors and two recipients - the donors give to the patient that matches their blood group, and the recipients get the kidney they need. A new very connected family is created. This is a specialty of UCLA, and they are proud that it works so well. So that is another option.

Susie of course would love to be the donor (even though her blood type is different) but she really needs to be my caregiver. I will not be able to drive for 3-4 weeks, have to get to UCLA clinic at 6 AM three mornings a week for a while to monitor the anti-rejection drugs, and of course will need bed rest and home care while recuperating. If she was out of commission at the same time it would be impossible.

That's about it for this time - it is difficult for me to accept all this. I am amazed when the doctors accept immediately the situation as critical and needing intervention. Ridiculous I say! But the numbers are there and I feel punky a lot. So, there it is.

thanks for prayers and encouragement - I appreciate it very much
ch

What's going on??????

I know this news is surprising to a majority of you - I have just not found it necessary to bring up in conversation. Life is too short to dwell on lemons.  I have stayed active as much as possible, not in denial, but not wanting to give in to this thing. "This Thing" is the fact that my family has Polycystic Kidney Disease. It is inherited, and many in my family have had to deal with it. There is no cure and no cause - just one of those things. It came through my mom's side of  the family -my grandmother, my mom, her siblings, my sisters and consequently their children have to deal with kidney failure on some level. While my kidneys have been deteriorating over the years, I've managed to keep up the boating, golf, directing, performing, etc. but since November 2010, I have lost a point or two of function each month. My kidneys are double size, look like a head of cauliflower instead of a defined kidney, and the cysts are also in my liver. The largest cyst I have is 11 centimeters, several at 5 and 6 centimeters and many, many others. I am fatigued daily. So it is my time.

Currently I have entered stage 5 kidney failure (there is no stage 6) and need to begin the process. I am not on dialysis, and with God's help, perhaps I can skip that chapter and go right to transplant. That's my goal at this point.

We are blessed that this happened at this time in my life - I am retired so don't have to worry about a paycheck coming in, have the time to go to UCLA often, and in general am healthy enough for the procedure. Susie will be able to be my caregiver, taking advantage of the state's family care plan to miss some days of work, and yet continue her job at California United Bank. Our love is strong, and I am blessed with her servant's heart and wonderful support.

So, we thank God for His timing, for the incredible medical advances that make this a possibility, and for the chance of a wonderful healthy life in the future.

Thanks to all for your kind thoughts, support and prayers. It will be an interesting journey!
ch

A kidney is a terrible thing to waste.

Susie and I spent the day at UCLA Kidney transplant center, going through seminars and meetings with surgeon, nephrologist, transplant coordinator, social worker and other support staff. The good news is that Kaiser has approved the procedure, so will pay for all costs for me and my potential donor. UCLA has also approved me for the National List, so I guess I really do need a kidney, although I am still in a bit of denial.

For those of you who would like to know more about the procedure, the Kaiser website will answer many of your questions. I cannot tell you what it means that you even want to be tested. This is truly a gift that defies rational thought, and reaches the depth of compassion and sacrifice. It is truly humbling.

https://members.kaiserpermanente.org/kpweb/healthency.do?hwid=tv7207

Many of you know that my sister Ginger had a transplant a year and a half ago, and is doing great. My sister Cindy was the donor, and she is doing well also. Since they take the donor kidney laparoscopically now, just a few holes and small incision, recovery time for the donor is remarkable. Literally on the third day after donating her kidney, my sister walked out of the hospital, down the street to a supermarket, bought some groceries, and walked back to her hotel. Within the week she flew back to Seattle.

It is not a piece of cake, there are many tests to go through, blood work and such, disruption of daily routine, and there is pain for a couple of days controlled by drugs, but after a very short time, she was back at work, knowing she was a life giving hero.

I do have the forms that any potential donor can fill out and FAX to UCLA. They will screen the applicants, pick the best match, and go from there. My blood type is O, and that would be the easiest donor to match, but in this modern age, any blood type is a potential candidate with a Cross Match donation possible. More on that later.