Transplant Alternatives to Kidney Dialysis - www.thekidneyblog.com

iCompassion.org makes progress

2009-03-08T14:12:00.002-04:00

The Johnsons, and Craig and LeeAnne have been working tirelessly on iCompassion. It is our combined mission to have a one-stop web site for those with kidney problems so they can get correct information about how to get help. The site wil go live this week - amazing, really, since I met Jeff only in April 08. We also have several fund-raisers planned in the DC/VA area which will generate funds so that we can start helping individuals who need monetary help - and also funds to the Transplantation Unit at Johns Hopkins so research can continue. Please visit the iCompassion site and send anyone there who has or knows of anyone with a kidney problem. Kind regards, Sandy

August 2008 - USS Nashville - Jerry's at Rest Now

2008-09-14T14:16:00.004-04:00

I have received a dvd of Jerry's burial at sea - April 19, 2008 - Aegean Sea
Latitude 36.04.7N, Longitude 025-29.6 E. The Captain of the USS Nashville LPD 13, a deployed destroyer, sent me a beautiful letter as follows:

The remains of your husband, LTJG Gerald M. Loevner, U.S. Navy, were committed to the sea following yoru request.

"The burial at sea ceremoney took place on the flight deck of USS NASHVILLE (LPD 13) on April 19, 2008, AT 5:00 p.m. in the Eastern Mediterrean Sea. Conforming to naval tradition, the ship was stopped, colors displayed at half-mast, and the participating officers and crew paraded in their Service Dress Blue uniforms. The afternoon was clear wtih a 79-degree temperature, moderate winds and light seas.

Under these favorable conditions, both the religious and military ceremonies were conducted with dignity and solemnity. NASHVILLE'S Executive Officer, Lieutenant Commander Brian M. Peterson was the military commander of the ceremony. A seven- person rifle squad with Chief Petty Officer Timothy F. Ashton in charge, a flag bearer, the cremains bearer, and the 20-member honor platoon were formed from the crew of the USS NASHVILLE (LPD 13).

Photographs of the ceremoney were taken and are enclosed, along with the flag presented to the military commander of the ceremoney, a cartridge from each of the three volleys of the rifle salute, and a video of the service. In addition, a navigational chart showing the locaton of the ship at the time of committal will be mailed to you the near future.

The officers and crew of USS NASHVILLE(LPD 13) are proud and honored to have had the privilege of performing this burial at sea ceremoney. Please accept my personal warm regards and sincerest sympathy for your loss.

Sincerely,
Tushar R. Tembe,
Captain, U.S. Navy"

Events Being Planned for Kidney Awareness

2008-08-19T16:15:00.002-04:00

August 18, 2008

iCompassion.org - we have a team ironing out the last details - working with a logo, planning events that will generate moneys so that we can start a national campaign about donating a kidney. Nancy, Brady, Eric & Liz are in Atlanta are working on the design part for the campaign.

As a donor myself, I want to be able to explain how simple the surgery is - that I have had no after affects - my health is perfect - and so important - Sheila in PA who received my kidney is leading a normal & healthy life. We correspond and she told me she has a photo of Jerry and me she printed from the internet in her living room. This is really what gets me through the days.

I am hopeful we can launch this campaign soon - as every day - someone else dies without getting the right information or help! It's not right!

Forever Hopeful, Sandy

iCompassion.org

2008-08-19T16:05:00.002-04:00

June 4, 2008 - Maryland

Double J did call me right after FL Winefest - he, his wife, Christine, and his friend, Craig, established a not-for-profit corporation in 2007. They have generously offered their help and the corporation to help establish a kidney awareness campaign - yeah! At last, we might be able to get this off the ground.

I haven't seen anything yet - public service announcemnts - articles, even a folder in any dialysis unit on the law that was passed December 21, 2007 - HR 770 - removing any shadow of a doubt that donating a kidney is legal.

How many more people have died on dialysis because of this lack of information?

Now we have a team in place that will help with an awareness campaign.

At last, maybe we can make a difference.

Hopefully, Sandy

April 26, 2008

2008-08-19T15:56:00.002-04:00

Charity Event - 18th annual

I met a gentleman today who lives in Maryland and was attending an event I helped coordinate as a volunteer - the Florida Winefest & Auction in Sarasota. Jerry always volunteered with me - handling all of the financials. It is still mighty hard to not see him at the back of the room as the auction unfolds - keeping everything on track. Over $60,000 today was collected for the organization in donations in Jerry's memory.

The gentleman I met, I will call him Double J, and I exchanged cards as he said he would like to do a charity event in the Maryland area similar to FWA.

We said we would talk next week after we buttoned up this event.

His card mentions iCompassion.org.

Perhaps he has an idea that will help with kidney awareness.

Yours in hope,
Sandy

2008 Awareness Campaign - Donating a Kidney is legal

2008-08-19T15:47:00.002-04:00

February 2008 - Frustration:

I don't seem to be able to make any progress with any private or government agencies to help with an Awareness Campaign. I have been working on establishing my own foundation so that I can solicit sponsors and donations and it can be a tax deductible donation.

The agencies who are supposed to be working with kidney patients and providing information have not started any awareness campaigns. We have a cure for kidney patients - and no one kdnows about it. What about a simple pamplet or sheet of paper in all of the dialysis units in the US giving information about finding a donor and giving the address of the local transplant hospital.

I never saw information like this available - and continue to be amazed at the lack of information kidney patiens receive.

I will continue to work on this awareness campaign. There is now hope & help out there for dialysis patients - and even patients who are not on dialysis yet - there is time to find a kidney before you have to go on dialysis!

I'm going to keep looking for a way to help!

Sandy

HR Bill 770

2008-08-19T15:33:00.002-04:00

December 21, 2007

There was a law on the books from 1984 that made it difficult to donate a kidney as there was wording attached to the law that suggested a donor received compensation of some sort. Through a friend in Washington and his connections talking to members of the House and Senate, the Charlie Norwood Act - HR 770 was signed by President Bush into law today removing any obstacles for donors. This is my Holiday present. This is a historic moment for kidney patients and those on dialysis. There is more HOPE! Hope is precious as very ill people don't get this often.

And, kidney disease is not like many diseases, we have the cure!

Now - how to get the word out?

I will bet there are enough altruistic people in the US who will be willing to donate a kidney. Now the awareness that it is legal to do so is my next goal.

Wishing you all HOPE in 2008.

Sincerely, Sandy

Jerry's Back in the Navy's Care

2007-11-12T09:27:00.000-05:00

On October 18, I took Jerry's cremains to the Naval Base in Portsmouth, Va. along with his discharge papers and an American Flag. I turned everything over to the Medical Examiner's Office (information I "happened" to find on the internet several days after Jerry passed away - I still don't know what led me to this site - it was nothing we had ever discussed and probably one of the furtherest things away from my mind).

I requested that his cremains be put on a destroyer - he served on the US Black 666 in the Korean War. The Navy will send me a letter giving longitude and latitude of where the Burial at Sea took place, his flag that flew, and photos of the ceremony.

Leaving there was one of the most peaceful moments I have had in almost three years after experiencing and witnessing so much dispair, hopelessness, and pure agony.

I am now working with Johns Hopkins and trying to figure out a way I can be of more help in letting others who are on dialysis know there is a way out of this torture.

Please pass any information I might have along to those you know who are on dialysis.

Sincerely yours, Sandy

Another Gallant Warrior Falls

2007-10-11T19:03:00.000-04:00

Lonnie Brooks, one of the 5 recipients, passed away - 53 years old. I attended a memorial service for him last Saturday. His wife, Shar, did a wonderful job of sharing his life. Even tho we were all part of the 10-person kidney swap, we didn't have much time to really get to know each other.

I guess the really sad thing about Lonnie's passing is....a little over a year ago, his friend wanted to donate a kidney - it was a match - it was all set up. Then, a couple of days before the surgery, the hospital found out the surgery was not covered by insurance and the operation was cancelled. How can we eliminate this problem - if an organ can save a life, shouldn't there be a way to fund this? Look at all of the moneys that would be saved by Medicare paying for dialysis. And, the heartbreak involved.

Shar and Lonnie started another search for a way to get a kidney for Lonnie. They found Johns Hopkins via the internet and eventually got themselves an appointment and the rest of the story you know.

Lonnie's surgery was a success - he had a few months of quality life before his condition deteriorated and he became very ill late in August and suffered so prior to his passing.

Again, if only Lonnie and Jerry had been able to get to Johns Hopkins when they were in a more stable health condition, they might have had a better chance of survival.

I'm still asking that "WHY" question.

Jody's New Kidney

2007-06-29T07:43:00.000-04:00

Jody is a new friend whom I met a couple of months ago. He was waiting on a new kidney after having being on dialysis for 3 years. I saw him again yesterday - 6 weeks after receiving a new kidney. At 35, he now has a chance at a long & normal life. We talked about transplants and how we must get the awareness out to the public as so many patients receive incorrect information about eligibilitiy of receiving one - or even where to go to get correct information. Pass this blog site along to a friend - they might have a friend who needs this information. Best, Sandy

Gone Fishing

2007-06-03T09:10:00.000-04:00

Dear Fellow Blog Readers:

Jerry and I had planned to take Jackie, our 9-year old grand daughter on a vacation this summer as we were sure about a positive outcome and recovery with his new kidney.

So, in living up to our word, Jackie and I are packing and going away for a couple of weeks.

If you have found this blog and can pass it along to your friends who might benefit from Johns Hopkins and their transplant programs, I would greatly appreciate it.

Respectfully,
Sandy

Not your Normal Day

2007-05-30T09:16:00.000-04:00

Yesterday was unusual and something I never thought I would have to do. I felt like I was part of a bad movie. Jerry was creamated in Baltimore as I couldn't pack up after 3 months and "move" our office and belongings back and do a proper funeral and burial. His "cremains" were sent via mail and have been sitting at home facing outside since February 7.

I had come across a US Navy "Burial at Sea" program on the internet (where I had searched for 2 years looking for a way to help my husband and others). I investigated and found that a Naval officer could be eilgible for this program. Being a proud veteran and American and a lover of the sea, I knew Jerry would have loved this.

However, in order to follow the procedures, his cremains have to be properly "stored" so that when they are delivered to the facility, he can "ship" out. So, yesterday, I went to Toale Brothers Funeral Home - who have been friends of ours for years - and David there took the "cremains" and handled everything for me. Standing in a sterile room in a funeral parlor waiting on Jerry's remains to be properly "stored" was not what I had ever envisioned I would ever have to do. I kept coming back to my thoughts of "what if I had gotten help sooner".

Jerry and I had hoped to get him better and be able to drive home from Baltimore down I-95 and stop at antique stores along the way - a passion of his, looking for naval antiques. Our plans didn't turn out that way, so I plan to drive his cremains to Norfolk where he was based during the Korean War and request that he be buried at sea from a destroyer deployed from there.

If anyone reading this blog knows of anyone who has kidney problems, please take a minute to forward the blog to them - maybe someone you know can get help "sooner" than later.

Yours in awareness for kidney alternatives, Sandy

The "A" Team

2007-05-21T20:36:00.001-04:00

Dr. Robert Montgomery and his team are incredible. I refer to them as the "A Team" - "A" to me stands for Angel -as they are Angels. This team and facility gave my husband a chance at a better quality of life when other institutions wouldn't.

As a result of this experience, I now have the honor of knowing the other 9 people who were involved in this exchange. Sheila, who received my kidney is now a friend and I understand she is off most meds, feeling well, and able to plant flowers she hasn't been able to for years - even being able to cook her husband dinners again. Our little "exchange club" is a tight little group as we all prayed and pulled for one another through this journey.

It is exciting to receive emails from them and hear how they are progressing. I can't tell I ever had an operation - but then, I was healthy going into this. All of the other donors and doing well I hear, too. The other 4 recipients are all doing well also - don't forget none of us were "teenagers".

That reminds me of a young man I met in Baltimore at an out-patient dialysis center (Jerry came home to the condo I had rented in Baltimore for about a week in January to try to recoup and gain strength he had to go to out-patient dialysis). Someone asked the young how he was doing, he remarked in the waiting room "I would be doing a lot better if someone would give me a kidney". I went over to him and said I would give him one-half of the one I had left as I just donated - but to believe in miracles as they do happen. He smiled. Hope is a precious thing.

If you are still reading, check out some of the articles in the press section - you'll have a better idea of the fabulous people who all worked together to try to help so many!

Sandy

2007-05-17T19:04:00.000-04:00

By Way of Introduction:

My dear friends and readers:

My late husband, Jerry, and I were not unlike so many other devoted couples - we were a team in just about everything we did. Together among so many things, we were happy, active, hard-working and resourceful. So you can imagine our frustration when we were suddenly faced with the medical challenge of a lifetime and found little in the way of organized and focused information related to our immediate needs and practically no where to turn for it. Believe me, its not that we didn't try.

Jerry became very ill in January 2005 while were visiting Sydney, Australia.We flew home to Sarasota, Florida as quickly as we could and checked him into a very fine local hospital. He was there for three weeks, during which time his kidney function all but shut down completely.

By February, his renal output had deteriorated to such a point that he needed dialysis just to survive. A "port" was inserted into his neck as a temporary measure so that the dialysis machine could begin work at once. Meanwhile, the standard "shunt" was implanted in his arm for future treatments, but would take some time to heal before it was safe to use.

In March, dialysis began. After each session (there were two per week) I could see that Jerry was growing weaker and weaker. It quickly became painfully obvious that dialysis was not the ultimate solution if there was to be any measure of quality, dignity and length to his life. The complications of treatment, combined with the strict demands of a renal diet, robbed Jerry of even the simplest pleasures most of us take for granted, like taking a grandchild for ice cream.

Dialysis exacts a heavy toll on the body, especially one weakened to begin with. First, cramping set in. Jerry's legs would cramp; then his hands, which would contort themselves into claw-like formations. He could barely move and resting with any degree of comfort was impossible. We knew we needed a more radical solution. With time running out, we began searching for a new kidney. His dialysis regime was now three times a week.

Here is where the real frustration set in. Being longtime Floridians, with many top-rated hospitals, we naturally started searching close to home. At a hospital in Tampa, some 50 miles north of here, we were advised that Jerry's age and the number of candidates ahead of him would drop us so far down the list of hopeful recipients that he would most likely die before his turn came. In Jacksonville, after nearly a week of tests, the venerable Mayo Clinic ruled that Jerry was too much of a risk.

We had better luck in Pennsylvania. Jerry made the wait list for a cadaver kidney at Starzl Transplant Institute at the University of Pittsburgh, his Alma Mater in his hometown. That gave us a measure of hope, but then the excruciating wait began.

What happened next was deeply troubling and is ultimately why I launched this blog. As I said at the top, Jerry and I were nothing if not resourceful, especially when we were frantically exploring treatment options for his desperate medical condition. We talked with local specialists and friends in the know. We consulted magazines and journals and, of course, scoured the Internet. We searched high and low but never came across any information about the Incompatible Kidney Transplant Program at The Johns Hopkins Hospital, in Baltimore. When we did finally find out about this miracle solution that would guarantee a live compatible kidney for Jerry, it was not from a member of the medical establishment. It was strictly by chance. A friend in Sarasota, who happens to know Mayor Michael Bloomberg of New York City(whose charitable foundation happens to give generously to Johns Hopkins) tipped us off. Without this lucky timing and chance connection we might have never have been the wiser.

You may have read about what unfolded next. To make a long story short, last November 14th it took 12 surgeons, six operating rooms and five donors to pull it off but five desperate strangers(Jerry included) received new organs in what has been described as the first-ever quintuple kidney transplant involving paired donations. I was one of the donors, offering one of my healthy kidneys to a 63-year-old woman from Maryland in exchangefor a healthy kidney from a California woman to be implanted in Jerry. All five donors and all five recipients of new kidneys came through the surgery just fine.

The Hopkins program was absolutely the right solution for Jerry. Ultimately, however, the outcome proved to be a classic good news/bad news scenario.The good news is it worked! The bad news, regrettably, is that it was about two years overdue. In the time it took us to find the Hopkins solution, Jerry's renal and cardiac status had deteriorated to such an extent that his weakened heart and compromised circulatory system proved unable to support the proper functioning of the new kidney.

We spent Thanksgiving, his birthday, our anniversary, Christmas, Hanukkah and New Year's in the transplant & intensive care unit of the hospital, where Jerry had already spent 10 weeks post-op. He fought a brave and gallant battle, but the kidney refused to work and Jerry passed away on February 4, 2007.

I still can't get over the lack of awareness about the watershed transplant programs at Johns Hopkins Hospital that possibly could have saved Jerry's life if we had gotten there sooner. It's hard to fathom, living as we do in an age of split-second communication, that there wasn't a central repository of useful information waiting for us the moment crisis arose. Where was that one source where we could learn about all the latest treatment options, compare their efficacy and find out how to take the necessary next steps? When precious organs are failing, time is of the essence! We were flabbergasted that finding something so right took so long and only happened by chance.

Why, we asked ourselves, couldn't we have found this out on our own, long before we did; long before it was too late? Why, we want to know, was the medical establishment seemingly oblivious to this option? Why wasn't this life-saving option laid on the table from the very beginning? Why, we ask, isn't there a single source - a "clearinghouse" if you will, for ordinary people like you and me to obtain this sort of information?

That's why The Kidney Blog. It's my single-minded goal to have information about the full spectrum of options available in one place, so that patients like Jerry have a fighting chance the moment they're diagnosed. More than anything, I want the world to know about the Hopkins ComprehensiveTransplant Center, which, perhaps, could have saved his life if we had made it there sooner. In my opinion, no medical facility in the country is more on the cutting edge with treatments to save renal-compromised patients. At the same time, I want to help others locate their own miracle solutions, no matter where they're located. I want this to be the clearinghouse for information that Jerry and I desperately hoped to find, but couldn't.

I want your help. If you've read this far, chances are you're seeking information or have useful experiences to share. Either way, you're a valuable resource. Please don't be shy. Let me know what you know or what you need. With more people sharing, organizing and cataloging what we know, we can prevent what happened to Jerry from happening to you or your loved ones. As far as I'm concerned, my wonderful husband died from organ failure secondary to information breakdown. Organ failure is eminently treatable. I saw it first hand.

Now we need to prevent information failure. Blog with me for a cure.

Yours in good health,
Sandy Loevner