Recently I saw a movie with Robert Redford, "All is Lost". Takes me back. Before We were married my future wife and I charted a bare boat Morgan 29' sloop in the Bahama Out Islands at Hope Town. Right under the candy cane striped lighthouse. As a teenager I crewed and sailed Comets - 16' sloop. I hadn't been sailing in 10 years. It was an adventure. Redford's sloop wasn't much bigger than the Morgan 29' we had rented. To be 1300 miles out to sea like Redford, . in a boat that size is crazy. We were always in sight of land and I had made up my mind if we were in real trouble, I'd just beach it. The hell with liability. The sailing was great. Out islands form a oval shaped loop and by staying inside the loop you were never out of sight of land. The last day, on the way back to Hope Town, the wind really kicked up. I lowered the mainsail and used only the jib. We must have been planning at 20 knots. We were flying. The waves started washing over the bow and I called my fiance to me and told her to go get a life preserver, put it on and bring me one. She was white as a ghost. Scared speechless. The hatch at the bow was opened and I told her to close and lock it. She tried, came back and told me she couldn't get it closed. I yelled "you better get it closed or we're going under".  Instant obedience without a word of objection. I remember that moment fondly. Never, in 40 years, to be repeated.

Later on our honeymoon I charted a 31' Endeavor at Water Island, in the Charlotte Amalie Bay in St Thomas, Virgin Islands. All through the American - St John (still a hippie home in '79) and British Virgins. Road town, Virgin Gorda, Peter Island. Some years later I saw an ad for Peter Island. It just read, " Exclusive and Expensive". It was, but as visiting yachtsmen, we were granted full resort privileges. The top 5%, "DO LIVE AND ARE TREATED DIFFERENTLY." That was the life.

Top item on my bucket list is to voyage up or down the inland water way on the US Atlantic coast. So if you have a boat, motor, sail, anything but a rowboat, and need a crew member, keep me in mind. No cost to you. The adventure is all I need.

On the fluid overload front, the hot / cold pool dip treatments continue. They seem to help. Showers are a good alternative if no pools are available. Fluid restriction works to some extent. I find most eating and drinking patterns are habits. Hard to break, but using substitutes works.


"So this is Christmas and a Happy New Year, lets hope its a good one, without any tears." - John Lennon. Yes, lets hope. Could use a year with no more tears. Looking outside, it's snowing. Temperature is the 20s.  Save me from this cold.

Fluid war continues. I am trying a new approach.  40 years ago a nurse told me, if you need to urinate, run warm water over your hands. It has to do with change in body temperature at sensitive locations. It works. Like Chinese acupuncture, which I believe to be related.  Anyway, my 72 length swimming daily mile has been extended. Jump into a 81 degree pool for 1 length. Body cools down. Immediately enter a 86 degree pool and body heats up. Swim 72 lengths. Get out and straight to restroom. Into shower for 20 minutes. Get out and straight to restroom. Straight to 100 degree hot tub / whirlpool for 10 minutes. Straight to restroom. Jump into 81 degree pool for 1 length. Straight to hot tub / whirlpool. Straight to restroom. Then shower. Then restroom. Keep that up for as long as I can. I shrink into a prune. Boy, I am thirsty. But, it works. My pool sujournes are stretching out to 4 hours. 

Yikes is it cold here. I sure miss the warm weather of summer. Looked into a place in the Keys. The hurricanes nearly wiped the Keys off the map. Several of the resorts / rental units I looked into were closed because of storm damage or wiped off the map. Looking into Florida east and west coasts. Any place warm with a heated pool would do. Anybody out there with a warm weather condo to rent for a couple weeks or a month, please email me,

The battle with fluid gain continues. Now down to an interval of between 2 and 3 weeks per paracentesis. I've tried everything to get rid off the fluid and not have the fluid continue to accumulate. Bad as it is, paracentesis is nothing compared to dialysis. Dialysis has to be the most emotionally grinding down process known. Truly hell.

Last paracentesis procedure, I had to cut it short,  leaving a liter or two of fluid, because I mistakenly took a diuretic earlier. Big mistake. Consequently the incision leaked oozing fluid. What a mess. I called the head paracentesis nurse and asked for an ostomy bag. This did the trick. The fluid oozed into the bag and I was able to drain it when it got half full. Must have been 2 liters over two days. When oozing fluid, get an ostomy bag. 

7-13-17  Coming up on my 23 year anniversary. 23 years post stem cell transplant. Looking back, I often ask why - why me? 
There is no correct answer. Today, as best I know, I am the longest surviving primary amy patient known - who has not had a relapse. I've been asked that question over the years. Truth is, I do not know why. I do know that all through my life I had narrow escapes. Like when I was 10 and water skiing, fell and my head went between 2 rocks with maybe an inch to spare around. I when I was 22 and in a head on motorcycle crash.  I rode for hours without a helmet. 5 minutes before the crash, I put a helmet on. Cause I had a feeling. 

People like to attribute things that happen for unknown reasons to luck.  Luck has nothing to do with this disease and surviving it. people say you are one of the lucky ones. To attribute survival to luck, is to excuse oneself from the obligation to do anything about it. No, I am not lucky. What I am, is obsessive / compulsive when it comes to staying alive. So I work at it. Diet, exercise, emotions are the 3 things I can to some extent control.  Swimming a mile 7 days a week. That is no accident. It takes fanatic dedication. 

5-20-17   The battle with fluid continues. Every 4 weeks (soon to be 3) I get a paracentesis procedure to remove fluid. Anywhere from 10 to 25 pounds of fluid comes off in 2 hours. Sort of like being pregnant and giving birth every 4 weeks - weight wise. 

Still swimming - except 4 days after a paracentesis. One mile / day - 7 days a week. After 20 days straight, I get tired. But then it keeps me active mentally and physically. 

This is a long shot - but then again what in my life is not. Looking to rent a condo for a few months over the 2017-18 winter. Likely Florida, but someplace warm. The winters are brutal for me with restrictive cardiomyopathy (talk about poor circulation). So any readers of this blog, kindly contact me if you are sitting on an empty warm location condo.

3-9-17    View from Outer Space

Since I am rapidly approaching my 23 year post diagnosis and SCT dates, I thought I would send along an update.

I am writing this from Layton, FL about 13 miles north of Marathon in the FL Keys. Each day includes:
1. A one hour walk along the beach
2. A one mile non stop swim in the pool (88 degrees this AM)

Medically I'm doing pretty good. In February 2016 I received a kidney transplant. Long term (20 years) progressive kidney failure, led to kidney cancer, removal of one kidney and dialysis for 20 months.

Interestingly, the dialysis, by removing fluid 5 days / week, masked the restrictive cardiomyopathy I had developed. The cardiac amy fibrils had catabolized, and left scarring , which resulted in my heart not being able to fully expand. This led to fluid buildup and the need for monthly paracentesis to drain the fluid. The restrictive cardiomyopathy was the suggested diagnosis from Dr. Falk to my Penn cardiologist Dr. Drachman.

Tiring of the need for continual paracentesis, it occurred to me that my enlarged prostate may be creating back pressure and hindering my ability to completely void resulting in fluid backup in my abdomen. I prevailed upon a local urologist to perform a Urolift procedure and open up the prostrate. It did not cure, but has definitely lessened the abdominal fluid accumulation.

Feel free to pass this along to any amy patients who might benefit. 

The view from outer space is fantastic. 

1-22-2017  Once a month, in order to take off excess fluid collected in my abdomen, I have been receiving parcentesis. Paracentesis is cutting an incision in the abdomen, inserting a catheter, and via a vacuum pump, gentling draining the excess fluid. Over 10 months the amount of fluid removed has gradually increased to 8 liters. 8 liters is 8 kilograms and 17.6 pounds of weight. It takes about an hour an a half. That's quick weight loss. Faster than Jenny Craig.

I complained to my cardiologist who was at a loss to suggest a therapy. So I got to thinking that the fluid retention is due to pressure imbalances. My heart, because of the restrictive cardiomyopathy, does not fully open and expand as it should. So it does not produce enough pressure to mobilize all the fluid. 10 years ago I was told by a urologist I had an enlarged prostrate. That blocks my bladder from fully emptying and must create back pressure. 

I went to see another urologist and described my problem. He advised trying Flowmax, I drug to shrink the prostate. I tried Flowmax for a couple of months and noticed no improvement. I complained to the urologist and he suggested an in office procedure called Urolift. Urolift opens up the prostate via mechanical clips. 1-17-17 I had a Urolift procedure. PAINFUL. During and after.

However, I did start losing fluid weight over the next few days. My cardiologist had raised the dosage of the diuretic I had been taking on 1-12-17. So two variables changed. So I'm not sure if the dosage change or the Urolift procedure, or a combination of the two, is giving me positive results with fluid loss. I'm hoping it is the Urolift because high dosages of diuretics has negative effects on kidney function. We will see.

12-5-2016. Yep, I'm still here. Ran into a problem post transplant. Restrictive cardiomyopathy likely caused by amy fibrils in heart dissolving, leaving scarring.  This has probably been happening for years, but dialysis, which cleans the blood and takes off fluid, hid the condition. So my heart does not expand and open fully on pumping, thus the heart does not fully fill with blood. A new heart might work, but short of that there is no known therapy or treatment. So, as usual, I must invent my own. I found a new Y with 5 swimming pools not far away. Day after day, I swim laps. A mile a day, and at my peak during July, 1.5 miles / day in two sessions. If I can stretch the heart I can, minimize the restriction, and perhaps increase the amount my heart opens. This Y has 2 outdoor and 3 indoor pools. Lanes are always available for lap swimming. It was made for me.

3-6-2016   Thought for everyday.

Christ returned to the joy of many and the consternation of a few. Two very sick people approached the Christ seeking a blessing. The first keeled and placed his forehead on the floor. The second stood and looked the Christ in the eye. 

The Christ said, " How have you lived your life?" The kneeling person said, " Christ o Lord, I have been a believer my entire life. I have attended Mass 10,000 times.

The Christ looked at the standing person. The standing one replied, "Teacher, I have been a non believer my entire life. I have never been to a house of worship. I did donate a kidney to a dying man I did not know to try and save his life." 

The Christ immediately placed his hands out and blessed one of them. "The Christ said, "Your faith has healed you."

To whom did the Christ bless? 

2-19-2016    On Feb 18 at 4 AM, I received a kidney transplant at Lehigh Valley Hospital. Allentown, PA. All is well so far. New kidney making urine and blood out of urine. Blood pressure low on meds to raise. Deceased donor was from Nashville, Tenn. - home of a thoughtful, enlighten and caring person.

Dr. Michael Moritz, MD, was the surgeon. THANK YOU DR. MORITZ! 

If you have registered as an organ donor - THANK YOU!   In PA and other states you can register as an organ donor thru the  Dept of Motor Vehicles when you renew your driver's license. PLEASE consider doing so. 

2-2-15. I hoisted the flags of the three major nations that have suffered recent attacks.  What we have in common - this threat - is much greater then the differences that divide us..

Unfortunately terror attacks are becoming the new normal. 

10-27-15  Life is good. 60 + swimming laps EVERY DAY at Cedar Crest College Rodale Aquatic Center. 20 days in a row EVERY day. Then they closed for 10-25-15 and I missed a day. 3 miles walking EVERY DAY. I'm training for a kidney transplant with an unknown date. But I will be in shape. Like no shape the transplant surgeon has ever seen. Interestingly as I grow older my physical workout fanaticism gets stronger. Kidney dialysis 5 days / week for 3 hours each day is a pain - but I do it. Home hemodialysis with me doing it and in complete charge and responsible is a lot more tolerable then going to a dialysis clinic.
I'm listed as an ACTIVE transplant candidate at Lehigh Valley Hospital in Allentown PA and Miami U (its all about the U) in Miami FL. Want to spend the winter in Miami ALL expenses paid? Donate a kidney to me and start packing your summer clothes. You don't even have to be a match. With paired matching, your kidney is matched to a patient anywhere in the USA and their kidney donor's kidney is matched to me. Days on the beach, the best restaurants, Miami Heat basketball games, charter fishing, scuba diving, para sailing, anything and everything. You provide what $ cannot buy and I'll provide EVERYTHING that $ can buy.

8-21-2015 Macungie, PA   pool

8-18-15 That's me at the pool parking lot after a swim workout. You're right I'm tired. 60 swimming laps after a 2.5 mile walk. I'm 67 going on 17. More pics to follow.

7-25-15  Life is good. 7 days a week I'm up at 6 or earlier and by 6:30 starting my 2.5 mile walk. 4 times around the street loop in my housing development. Few cars, an occasional other walking. It's cool. Temperature about 65- 70 degrees. Best time of day for walking. At 11 AM I'm at the pool. 48 laps of non stop swimming in 55 minutes. 6 laps of breaststroke, 4 freestyle, 2 kicking. Repeat 4 sets. It's bliss. 5 days a week - Sun, Mon, Tue, Thu, Fri dialysis from 1:30 - 4:30. I have an engineering practice so it keeps me busy being productive. Most business communication is via email and Internet. The key emotionally to dialysis is keeping busy doing something. You can only watch so much TV. It's easy to get depressed on dialysis and that's why most patients give up. When I worked for someone else I'd pray for weekends. Now I pray for Sat and Wed.

Castillo del Sol. Key Colony Beach, FL, next to Marathon in the Florida Keys. If you own a unit (or know someone who does) and would rent to me, I'd sure like to hear from you. The best place with the best beach in the Keys. 

7-5-15  Life on dialysis is no picnic. 3 days on dialysis, 1 day off, than 2 on and 1 off.  Week after week. On the transplant front, since a small tumor was found May 7 in left kidney, Tufts said come back in 2 years. Penn had no problem with tumor but said blood pressure was too low. I was born with low blood pressure. Dialysis just lowers it more. No transplant at Penn for me. Still waiting to hear from Miami U.  Listed as active candidate at Lehigh Valley. That may be my best option.

On the exercise front, swimming daily in outdoor pool at Macungie Pa park. 50 minutes of bliss. Walking 2.5 miles daily trying to get into shape for a transplant. 

5-17-15   Had a radical left nephrectomy May 7 at Memorial Sloan Kettering Cancer Center - NYC. It did not go well. During surgery my blood pressure plummeted, forcing the surgeon to give me a blood transfusion. Transfusions are not good if you are hoping for a transplant. Antibodies are produced because the body detects a foreign substance. To compound the problem, 2 days after surgery I received a second transfusion because my blood pressure remained dangerously low. This second transfusion did no good - my blood pressure remained low.

The surgeon came to see me the day after surgery. He told me visual inspection showed no cancer. But to be sure he cut out lymph nodes along with the kidney. Pathology report would take 7-10 days. There's no sleeping at MSKCC, must be against the rules. I was desperate to get out. They tried ti dialyse me, but could not take off fluid because of low blood pressure. Finally got released after much complaining.

5 days later received a call from surgeon's nurse.  Bad news. A small tumor was found in the removed kidney. I can forget about a transplant - at least for a while.

4-21-15     May 7 I'm scheduled to have my left kidney removed at Sloan Kettering (radical nephrectomy) - NYC. 3 out or 4 transplant centers require I get the left kidney removed to eliminate all chances of cancer in this organ.  Miami put it best. You are on dialysis - so this kidney is doing you no good - by removing it we will net.know the8 l cancer status and can go forward. The downside of this operation - besides the pain - is if there is cancer I can forget about a kidney transplant for another 2 or 3 years. Although Miami - bless their heart - mentioned "some months".

4-20-15. Called Indiana U and spoke with Dr. Merrill Benson. He did not know me but knew about me - my case. I explained the need for a kidney transplant and my upcoming surgery May 7. If cancer free - I will contact Dr Benson and go to Indiana U for a transplant evaluation. Thanks for the Indiana U suggestion - Marcia in Miami.

3-9-15.  Plans changed. At Miami U April 2. Settled in at Key Colony Beach. Now this is the life. Bright sun, 84 F, pool 85, ocean 74. Endless summer. 

2-7-15 . I will be at Miami U / Jackson Hospital Transplant Center Feb 26 and 27.  I will be staying at Key Colony, Marathon, FL in the FL Keys the month of March. 
I'm swimming laps 3, 5, 6 times / week. Up to 1 hour 25 minutes / session of non stop 90 degree water. That is as close to the Keys as I can get. Outside here, it is snow and 20 degrees.

1-21-15. Russian visitor is gone. No visits the last few days. Hope we make contact some day. Have a good, healthy, life

1-3-15   Attention!!! The web site visitor from Moscow, Russia, who visits all my web sites every day faithfully (including Design Professionals Database - currently under construction and in Beta testing) - kindly email me. I am most curious as to the source and reasons for your interest. If you email me and send me details, I will email you back a complementary copy of my book and short stories. That goes for the Russian successor to the KBG too, if that is who you are. Regardless, have a safe and healthy New Year!

12-13-14. Visited Tufts U medical center for a kidney transplant evaluation. While there I asked Dr. Raymond Comenzo's MD fellow if Dr Comenzo wanted serum and urine samples to check for light chain levels. He replied, "Not necessary. I asked Dr Comenzo this and he replied, No, he is cured."  It took 20 years to hear this HOW SWEET IT IS!!!!!!!

11-30-2014    I spent the last month in a dialysis clinic home dialysis training seminar. 5 hours / day. I passed and today is my second day "home alone". Its better then a dialysis clinic. Many clinic patients are in very poor shape. They arrive and leave via ambulance. Many are missing limbs. It's sad and depressing. Dialysis clinics are set up to make lots of money. Some run 3 shifts / day, 6 days / week. I sat next to a street guy that stunk. The US government guarantees patient payment by law. Most patients are obese, diabetic, resulting in kidney failure. Home dialysis does give me a degree of control. I set my own schedule. Any mistakes are mine. It is time consuming. 0.5 hours to set up. 3 hours of dialysis. 0.5 hours to break down. Needle sticking is the most difficult part. If you always wondered what it is like to be a nurse, try home dialysis. Every day I have a growing appreciation of why dialysis patients are desperate for a kidney transplant. A transplant gives back your life. 

11-15-14   I'm seeking a living donor for a kidney transplant. If the shoe was on the other foot and you approached me, I'd probably say no.  It takes one extraordinary person to be a living kidney donor. No need for a perfect blood type / genetic match. Paired match would connect us to another kidney failure patient and living donor and his/ her donor kidney would go to me and your donor kidney would go to him/ her. All donor medical and living and transportation expenses are paid and the location for a transplant and recovery time would be your choice. 

In December 2014 I go to Tufts Medical Center - Boston, Mass - for a transplant evaluation. This transplant would be a deceased donor. 
I have been in contact with Miami University - Miami, Florida - Transplant Institute and that is the next stop for a deceased donor transplant evaluation.

I've read that Iran is the only country without a donor kidney shortage. Iran is the only country where kidney donors may be compensated by the kidney recipient. Unfortunately Iran does not allow "medical tourists" or I'd be enjoying the Tehran sights (perhaps from a hospital bed) right now.   

Questions? Email me at

Paired match kidney transplants: A kidney donor does NOT have to be a perfect / good match for kidney recipient. A living donor is matched to another kidney patient who has a living donor that is a good match to me. For example, lets assume I have a living donor lined up (nice assumption) but we do not match. A search is conducted nationwide for another kidney patient in the same predicament. Assume a kidney recipient in CA has a living donor that is a good match to me. My living donor is a good match to the kidney patient in CA. A paired match can occur. My donor's kidney goes to CA, the CA donor kidney comes to me. This procedure has been done numerous times. Chains have developed using dozens of kidneys / living donors / kidney recipients. The more kidneys involved, the better chance for a match. So if you are saying to yourself, I'd like to donate, but I would probably not be a match - that does NOT matter! Rather then having kidneys flying around the county, I much prefer to go with my kidney donor to where a match pair is located. Could be U of Miami Medical Center. The R&R at South Beach sounds rather nice. 

From May 2014 to July 31, 2014 I have lost 40 pounds of fluid weight. 180 to 140 pounds. I do NOT recommend this kind of diet, but if you have to lose fluid weight, I know how.

Apparently there are real differences between transplant centers. I found a center (Lehigh Valley Hospital - Allentown, Pa.
 610-402-8506  . I have been informed by University of Penn docs that I would not be eligible for a kidney transplant until I am 5 years cancer free. I had a clear cell carcinoma tumor removed in Sept 2012. I've got 3 years + to go if I want a transplant at Penn. I'll be pushing 70 years old in 3 years - if I make it. Fluid buildup likely due to heart / kidney failure. Heart failure puts me in even more doubt.

I have learned that organ transplant programs like to boast of high success rates. That way they look good compared to other transplant programs and national statistics. How to look good? Eliminate any candidates with side problems like cancer or heart failure. Like me. 

20 years ago there was brief discussion of a heart transplant. I was advised that no one is going to waste a heart on an end stage kidney failure patient like me. Not much has changed in 20 years.

After 20 years of fighting amy, my kidneys have given up. I am on the Lehigh Valley PA Hospital kidney transplant active list. 

Lehigh Valley Hospital Transplant Center web site link follows. You may contact them anonymously - Just state that you are calling on behalf of John Helwig

A kidney will not be offered because I am carry 10 to 15 pounds of abdominal fluid weight on my 5' 10" frame. I weigh 159 pounds. I'm trying to lose the fluid weight. That would make to eligible to receive a transplant. 

I've had fistula surgery on my left arm in preparation for dialysis. I would be better off receiving a transplant before they start dialysis as that produces the best patient outcomes.

So I am looking for a kidney. Cadaver, living donor, makes no difference to me. I'm not in a position to choose.

There is no $ cost to a kidney donor. You do not have to match my blood type. There are kidney chains where one donor goes to a transplant patient and that patient's donor goes to another kidney transplant patient. That way good matches can be made.

Keep me in mind going forward. You may be in a position or know of someone in a position to donate a kidney.

That's right! You can do it. Look at the date at the bottom of this page. I was diagnosed in May 1994 and treated in August 1994. That's 20+ years! Who said this disease was absolutely terminal?   REGRESSION IS NO LONGER UNKNOWN!

What this web site is about is HOPE!  Hope that you can can be treated and beat this miserable curse of a disease. If you are going to beat it, you are going to have to take off the gloves, get mad, and start fighting for your life. For truly you are in the fight of your life. You can do what I and other patients have done.  IT IS NOT IMPOSSIBLE!

"Most people see things the way they are and ask, Why? 
I see things that never were and ask, Why the HELL not! 
I see me."

"A person should live their dreams and know them for what they are." - James A. Michener ... "THE DRIFTERS"

 In ancient Greek, the letter  Z  means, "He Lives!"
There is a difference between most people and myself. I do not assume there is going to be a tomorrow.

As for me, I'd rather die on my feet fighting back, then live on my knees, begging for one more day.

Links to additional pages on this web site are at the bottom of this page - a long scroll down.

My book "HEART LIKE CEMENT" is for sale via a download. The file format chice is Word or pdf. Click on the PayPal button, pay $2.50 to Pay Pal - no need for a PayPal account, you can use a credit card - complete the transaction and you will directed to a web site where you can download the book. Print it, read it. It is my amy medical autobiography.

My book "HEART LIKE CEMENT" is for sale on Amazon Kindle. The purchase cost is $2.99.  Its also available thru the Amazon Kindle lending library. 

Click on the following link to go to the Amazon Kindle web site to buy / borrow my book:


HEART LIKE CEMENT is also available on the Barnes & Noble web site for the Nook. The purchase cost is $2.99

Click on the following link to go to the Barnes & Noble web site to purchase my book.


Heart Like Cement is available on Google Books. Click on the following link to go to Google Books web site. Price $2.50 USD


I've written some short stories - nothing to do with amy- that are also for sale as direct downloads and for Kindle and Nook. They are all non fiction. Tells a lot about me - my mental makeup, how I look at the world. This is about as close to getting into my mind as you can. All 9 short stories are available for one price of $5.50. Click on the PayPal link below. No need for a PayPal account. You can pay by credit card. Complete the transaction and you will directed to a web site where you can download them. Print them, read them. Hope you enjoy them!

Amazon Kindle    Short Stories by Jay Helwig

Barnes & Noble Nook    Short Stories by Jay Helwig

If after you've read my web site / blog and my book and short stories and are convinced I'm onto something, Email me.

There's no polite way to put this. But I have figured out how to stay alive when there is no hope. Through much trial and even more error, I've developed a sixth sense as to what works and what does not. From negotiating thru the medical system, to deciding on a therapy, to choosing a doctor, I know how to do it. Thru amy, thyroid cancer, kidney failure, kidney cancer, and who knows what's next, I "just do it". If your tired of dying, try living. It is not entirely a matter of fate, luck, or chance. 

High Noon 

It's high noon and I hear the whistle blowing.
I'm out here on the tracks alone and its time to get a going.
Tomorrow is today, later is now,
Its time to do or die.

No ones' ever stopped the train, 
Sent it back from whence it came.
But I've got to try and try 
And get it out of range. 

As for me, there is no choice.
I've gotta stop the train.
I can't get off the tracks
I got to stop that whistle blowing. 

High noon will come and go
My time is running short.
I still want to be standing here
When the whistle is no more. 


I'll try and regularly post some recent activities and medical test results here so visitors to this site have an up to date idea of my current status.



Some things to think about when you seeking / receiving medical care:

1.  All medical care providers are not the same. You want someone who is recognised as an expert in their field. If its a surgeon, someone that does a large number of the specific surgery type you need. Board certified goes without saying. One thing I noticed in the building directories at Memorial Sloan Kettering Cancer Center. Dozens of physicians were listed - all were MDs. Not one DO was listed. 

2. The squeaky wheel gets the grease. I write down questions before I go to see a doc. And I keep hammering until I get answers.

3. "Mistakes happen", but not on my case. I followup and check and recheck everything. Recently I was to have a catheter removed. I called the docs office and a nurse told me one (1) day off coumadin was OK. That didn't make sense, as to get the catheter placed I had to be bridged off coumadin to another blood thinner over several days. I kept asking. When I was on the bed, in a gown, all prepped, I asked the surgeon. He advised one day off coumadin was not enough. The procedure was delayed.

4. I am the patient, the client, the customer, the guy that pays the freight. The medical process revolves around me and my needs. I do not revolve and accommodate the medical process needs. I am the center of attention. If there is no benefit to me, I'm not interested. That goes for medical research, blood draws and bone sticks. 

Dealing with kidney failure, heart block and restrictive cardiomyopathy.

 First, a disclaimer. I am not a physician and I have had no medical training whatsoever.  I do not have a license to practice medicine and never will. So my practice of medicine is limited to one patient - me.

 My history has been to identify the problem, do the research (Google searches) and try and figure out what I can do to control / improve my situation / problem.

 What I can control to some extent is diet, exercise, and emotions. Diet and exercise I have had some degree of success. Emotions have proven more difficult. Not impossible, just more difficult.  The meds I have tried for emotions - Prozac, Xanax have probably done more harm then good. I'm addicted to Ambien. I've taken Ambien for years. I was diagnosed with sleep apnea 7 years ago and I wear a full face CPAP mask. At the time Ambien seemed like a good idea. So much for good ideas. Recently I've cut the nightly dosage from 20 mg to 10 mg. My goal is to get off Ambien.  It's going to take months. Beyond the physical dependency, there is a real mental dependency. It's tough to break the Ambien addiction.

 My kidneys have been failing for over 18 years. It's been a slow but steady failure progression. I've tried to slow kidney failure progression with a very low protein and potassium diet. What I succeed in doing was dropping weight. This weight loss had some positive impact on slowing kidney failure progression, but resulted in my weight going to 146 pounds from 166. I'm 5' 10". 146 is very light and I was getting weak with no energy. I added some weight and noticed my energy increased. My kidney failure stayed about the same.

 Potassium level was controllable through diet. A K level of 5.1 is the upper range of normal and I was able to maintain that K level long term.

The decision I made was to take an active role in my own care and try things within my control to improve my prognosis. Dialysis meant no more swimming and an end to my physically active lifestyle. I meant to delay dialysis indefinitely. That made the decision to opt out of surgery to remove a tumor on my left kidney a lot easier. Difficult to let go on this decision, but still doable.


My kidney failure never got to the point of physical distress, some ankle swelling, but that was it. As my weight increased, so did the ankle swelling. A weight of about 160 was a good trade off between weight and kidney failure. At 160 I had good energy and could swim 32 laps (800 yards). I had good energy at 160. At 146 I was tired and had no energy. 160 was a good threshold point for me. A key to survival is identifying individual threshold points that work in practice. I established my threshold point for weight by trial and error. Much trial and even more error.

Exercise wise a threshold point was trying to hit a moving wave. The point at which I started to fail during exercise was a point I wanted to stop before reaching. But it was constantly changing depending on my fitness level and training regimen. For over 50 years, I've been able to swim underwater for 25 yards (1 pool length) by pushing off from the wall while standing in the pool. This gives me reassurance my air / lung exchange has not declined and I have some degree of endurance left. July 2012 was no different. I gave it a go and made it. Positive reinforcement. Emotionally that's what I needed. 

Heart Block

Unlike progressive kidney failure, amy fibrils breaking down post SCT can lead to arrhythmia which is a “lights out” sudden situation. In my case, post SCT led to progressive heart block. This is when the heart electrical system function declines. I was being monitored regularly and a series of EKGs had shown my heart block was progressing. At some point in time I was told I’d need a pacemaker. Some point in time came rather quickly. I had regular EKGs that showed my heart block was slowly progressing. Then it progressed quickly. I was jogging a Memorial Day weekend when I came to on the road. My heart had suffered an arrhythmia and I passed out head first. My head had struck the road and my heart restarted. Lucky for me. Jogging on the grass that day may have been fatal.

 The best way I can describe suffering an arrhythmia is to think of a light switch being turned off. That’s what it seemed like. Someone turned out the lights and my heart stopped. Later I was to describe this incident as, if you got to go, an arrhythmia is the way. No warning, no pain, no worry, just lights out.

 That’s something to keep in mind. Experimenting with heart function / heart block is no place for the faint of heart. No pun intended. But very true. I was willing or stupid enough to take big risks with my heart. Smart or lucky I’m still vertical. 

Restrictive Cardiomyopathy.

Restrictive cardiomyopathy means the heart does not expand properly to fill up with blood. The amy fibril deposits make the heart less elastic. I reasoned, if I had  tight heart muscle, then stretch it. That was always a goal of my exercise. Stretch the heart. When I was scheduled for a stress echo in January 2012, I trained for it. The treadmill I would run on would be inclined slowly to make it harder. I ran hills. Day after day I ran hills. When it came time for the treadmill I was ready. I lasted 10 minutes instead of the expected 8 minutes. People with normal healthy hearts made around 8 minutes. But then they did not train for the stress echo.

 My swimming was the same way. I swam laps and trained. I had a damaged heart. Whatever heart function I had left would be better with training. So I worked at it. Each small improvement was rewarded with a boost to my mental outlook. I was in need of boosts. Beyond the physical benefits, exercise gave me mental boosts. Much better then a Prozac or Zanix boost. It felt good getting off these meds. It’s harder to exercise then take meds. That may be why the docs prescribe meds and not exercise. Too bad. Meds can be addictive and do not give you the physical , let alone mental benefits of exercise. When is the last time a doc gave you an Rx for exercise? That's not to say I don't take meds. I take a lot of meds for heart and kidney function.  

Sept. 9, 2014 

3 PM I received an unexpected phone call. Lehigh Valley Health Network transplant center had moved me from inactive status to active. I am now eligible for a kidney transplant. Hooray!!!!

I have 2.6 years of time accumulated. A call they have a kidney for me could come at any time. The wait could be minutes or years.

Aug 31, 2014 

Weight 140. Sometimes dips to 137. Middle school weight. I should have gone on dialysis sooner. Sept 29 I'm scheduled for hernia surgery at Penn. 40 pounds of fluid tore out my left groin. I need to get this fixed as transplant surgeons look at my hernia and lose interest right away. Dialysis is a pain. I bought a tablet PC with detachable keyboard to pass the time sitting in a dialysis chair for 4 hours , 3 days / week. It is a very worthwhile investment. If you are going on dialysis - I highly recommend it. 

July 31, 2014 

Weight 140 pounds. Down from 180 in May 2014. Now that's losing fluid weight.

I'm told my acites is mostly resolved. Mostly? Looks like I go down to 135 or 130 pounds. Not since Jr High have I weighed that.

July 19, 2014 

Today I was diagnosed with gout - right foot. Swollen and hurts like hell. Makes sense. I've lost 35 pounds of fluid in the last 7 weeks. Uric crystals formed with the fluid loss and lodged in my right foot. Weight 145 pounds.

July 9, 2014 

My weight this AM was 160 pounds. I'v lost about 20 pounds a fluid in the past 6 weeks.All from dialysis. June 10 I go to Penn where they will drain my abdomen and hopefully get rid of 8 to 10 pounds of fluid. Next I should be eligible for hernia repair surgery due to the asceytes. Then I need clearance from my Penn nephrologist, cardiologist, and Sloan Kettering surgeon that I am suitable for a kidney transplant. Then hopefully Lehigh Valley Hospital will change my transplant status for inactive to active. Finally I have a game plan and am making some progress. 

June 4, 2014 

I went on dialysis today. 20 years of fighting it off, but my kidneys collapsed in May and I felt lousy. Could not swim or walk around the block. The docs put two catheters in my chest for access to my blood. It was the kidney cancer operation in Sept 2012 that did me in until then I was holding my own. After my left kidney was sliced, my kidney function started to decline. I put on 20? pounds of fluid weight. My first dialysis session lasted 2 hours and my back hurt. My second session lasted 3 hours and my back was killing me. The dialysis clinic chairs have no lumber support. They are cheap and uncomfortable. My Volvo seat is much more comfortable. I got a kids water raft and laid flat on it at the 3rd session. That helped. I want to get into a home dialysis training session but I have to get rid of the catheters first and start using my fistula. My slowly maturing fistula.

Feb. 19, 2014 

After 20 years of fighting amy, my kidneys have given up. I am on the Lehigh Valley PA Hospital kidney transplant inactive list. That means I collect time, but a kidney will not be offered to me at this time.

Lehigh Valley Hospital Transplant Center web site link follows. You may contact them anonymously - Just state that you are calling on behalf of John Helwig

A kidney will not be offered because I am carry 10 to 15 pounds of abdominal fluid weight on my 5' 10" frame. I weigh 159 pounds. I'm trying to lose the fluid weight. That would make to eligible to receive a transplant. 

I've had fistula surgery on my left arm in preparation for dialysis. I would be better off receiving a transplant before they start dialysis as that produces the best patient outcomes.

So I am looking for a kidney. Cadaver, living donor, makes no difference to me. I'm not in a position to choose.

There is no $ cost to a kidney donor. You do not have to match my blood type. There are kidney chains where one donor goes to a transplant patient and that patient's donor goes to another kidney transplant patient.

Keep me in mind going forward. You may be in a position or know of someone in a position to donate.

Dec 12, 2013 

Swimming indoors most every day. Warm water in a therapy pool 40' long. My workout is 16 laps breaststroke, 12 laps freestyle and 4 laps kicking. Repeat 5 times. 80 laps of 25 yards in length or about 1.25 miles. Most days I have hot showers that can last an hour. Love that hot, steamy water. My own steam bath. 

Still dealing with heart failure, kidney failure, ascites (fluid retention) and popping lasix like it was candy. Weight about 165 and I'm still carrying 10 / 15 pounds of fluid.

I'm just about to book a place for a week at Cocoplum in the Florida Keys. (Marathon). Anybody out there in amy cyber land that has a place you'd like to rent in Florida or the Keys, I would be interested. I've not been to Cocoplum but the pictures look nice and the visitor reviews look good. Let me know via email.

Oct 1, 2013 

Flew to Boston to see Dr Falk @ Brigham & Womens. The ascites I can't shed and the heart & kidney failure have got to get resolved. Dr Falk - cardiologist - has probably listened to / treated more amy heart patients then any doc. I get an echo, EKG, and a consult. Dr Falk advises his best guess is amy fibrils scarring/ fibrosis. He seen a few cases but it is rare. After a honeymoon of several years in post SCT cardiac patients, the amy fibrils break down leading to scarring and heart failure. That's what seems to have happened with me. The heart electrical conduction problems I've had all can be the result of scarring / fibrosis. My heart is just giving out / heart failure.

On the other hand, I'm swimming 1.25 MILES everyday, it takes 1.75 hours. Non stop. Not bad for a shot heart, end stage kidney failure and kidney and thyroid cancer. 

I'm taking diuretics to shed the ascites. 160 pounds here I come. Only 25 pounds of fluid to go.

Aug 13, 2013 

64 swimming laps the last few days. It is good. I've taken to not stopping for a sip of water. I just do the 64 laps non stop. It takes me about 70 minutes. 8 laps breaststroke, 6 freestyle, 2 kicking. Then repeat that set a total of 4 times. 

I'm still carrying about 10 pounds of extra fluid in my abdomen. The only way to reduce the fluid is to reduce water / fluid consumption. It is difficult in August. I've taken to sucking on ice cubes rather then drinking water. I need to get rid of 10 pounds of fluid and get my weight down to 158 from 168. Next I need to get a left groin hernia repair. The general Penn surgeon won't cut until I lose the fluid. Once the hernia is repaired I need to get a Penn kidney transplant evaluation. I have a molar crown that broke off months ago. the dentist told me I needed to get the tooth extracted. I delayed as I didn't want to lose any more summer swimming time. Teeth out in winter. I had a growth on my nose removed. Benign. We having fun yet?

Aug 2, 2013 

Aug 1 was my 19 year anniversary. 19 years ago @ Boston U, Dr Comenzo started the stem cell transplant on me. At the time I was praying for 19 months. Here it is 19 years. Dr. Comenzo - thank you!

I cried out to the Lord.

"What is it you want?" 

Lord I want to live.

"Rise up, your faith has healed you." 

And so it had. Few were as blind as I, fewer still asked for so much. 

70 laps swimming yesterday. Not bad for a 65 year old with heart & kidney failure and who knows what else?

July 30 I saw an amy patient at Penn. 70 days post stem cell transplant. She kept her eyes fixed on me. There is an element of shock and awe. "19 years", she kept repeating as if she could not quite believe it. Sometimes I have to repeat it to believe it myself.

July 19, 2013 

70 swimming laps today and yesterday. Almost non stop. 1 hour 10 minutes.

Creatine 3.93

BUN 83

K 4.8

Getting off lasix should drop all 3.

July 17, 2013 

The 10th annual Chip Miller Charitable Foundation surfest is July 27, 2013 at 7th St. Beach in Ocean City, NJ. USA

Ocean City, NJ— The Chip Miller Charitable Foundation (CMCF) will host the 10th Annual Surf Fest on Saturday, July 27th at the 7th Street Surfing Beach in Ocean City, New Jersey. Surf Fest is a community-wide surf contest to benefit the Chip Miller Charitable Foundation, an organization committed to raising awareness of amyloidosis, helping people…

Lance Miller knows how to stage an event. If you go to no other amy fund raising event, go to this one. Surfing is not required, but a good time by all for a worthy event is guaranteed. 

July 6, 2013 

I've been in a balancing act between heart and kidney failure. I take Lasix to keep off the water weight. Too much Lasix and my kidney creatinine rises. So I've got to balance the two. I have to get off Lasix and the easiest way would seem to be exercise. 

I've been swimming daily. Increased my lap / time spent swimming laps to 60 laps in about 1 hour & 10 minutes. I'm also walking 2.5 miles / day. Its hot so I walk at 7 AM. Swim at 11. Care to join me?

July 4, 2013  Independence Day

Over the last 2 months I moved my medical care providers from a local hospital to the University of Pennsylvania, Philadelphia, PA., USA. (Penn). Penn has a relatively new amy treatment program and have appointed experienced amy physicians to their staff. If you contact Penn / get an appointment / see an amy team member physician list below - tell them John Helwig sent you.

June 23, 2013 

May 15 I had an appointment with a Penn herpetologist  He examined my abdomen and said he wanted to do an abdominal tap to take off some fluid and test it for cancer. May 20 I had 3.5 liters of fluid - 8 pounds- taken out. 1 week later I was told no cancer cells. In 10 days I had put the fluid weight back on. 

June 10-15 I spent at the Penn Presbyterian Hospital. On June 6 I had an appointment with a Penn cardiologist. One look at me and this doc told me I was carrying 35 pounds of water weight. If I continued like this I would kill my liver. He said he would admit me to the hospital June 10 and see what my kidneys could take as he put Lasix into me via IV. 6 days later, I was 30 pounds lighter. Got home and was still losing weight for another day for a total of 35 pounds in 8 days. Quick weight loss that beats Jenny Craig.

Now my orders are to eliniate salt / sodium from my diet and restrict fluids to 34 ounces / day. The salt is easy. The fluid restriction almost impossible.

Creatinine 4.1 - 3.8]

Potassium 4.5. Steady dose of lasix does the trick.

April 17, 2013 

Swimming has become a major focus of my day. That's 7 days a week, 1.25 to 1.50 hours per day. I rarely miss a day. 0.75 miles per day. The ankles and legs feel better. There definitely is some equalization of the internal fluid pressure from the water buoyancy effect. Happiness is 90 degree F water. Key West ocean temperature has gotten down to 73 F. If I can't get down to the Caribbean  perhaps a bit of the Caribbean can come to me. 

Next week is X rays and ultrasounds looking for tumors. Here's hoping MSKCC has some good news for me for a change. 

Blood / urine tests looking for light chains found nothing. Did I tell you I was cured? 19 years and counting!

Feb. 10, 2013 

I started swimming the first week of December. Spent the next 5 weeks at a health club with 3 pools. But the water was cold and I ended up cutting short my lap swimming to 30 laps. I found another pool complex at a nearby college. 90 degree water in the therapy little pool - now that's a little piece of heaven. (It's 76 degrees ocean water temperature in Key West).  I swim nearly every day and I spent 2 hours at a time doing it. The amount of time I spend swimming is directly related to the number of people in the pool. When its empty I stay and swim. And its empty a lot.

There is something therapeutic about swimming and kidney failure / edema and all the symptoms. The exercise in a prone position redistributes the body fluid and I feel a lot better after swimming. I'm in the pool 6 or 7 days / week. 

Jan. 3, 2013 

Creatinine   4.04

BUN  57

GFR  15

weight 175

I've got to get down to 165, get back on a very low protein idiet, and keep on swimming. I stopped counting laps at 30+. I now keep track of the minutes. 75 on Jan 14. In 87 degree water. Now that is a treat.

Dec. 13, 2012 

I'm in my third week of swimming laps at an indoor pool. I noticed my ankle swelling declines the more laps I kick. Just using kicking (no arm stroking) to propel me through the water. Yesterday I swam 10 laps just by kicking. I'm up to 30 laps total. It feels really good. I sleep better at night too!

Nov. 12, 2012 

cratinine 3.43

K 4.8

BUN  46

GFR  18

Hemagloblin  8.4

weight  165.0. I'm on 40 mg of lasix restarted 11-10-12. 

Oct 13, 2012 

creatinine 3.67

K 4.9

BUN  51

GFR  16

weight  170.0. I'm on 40 mg of lasix very AM to lose about 10 pounds of water weight post op.

Hoping to get to Florida this winter. All you fans with houses, condos, boats, etc. just sitting empty over the winter, keep me in mind. I was reading about a 58' Hatteras yacht for rent. It is moored near Key West and just sits empty most of the time. Ah yes, I just want to lay on the teak deck and soak in the sun. I don't want to move it, just soak in the moment. 

Oct. 9, 2012 

creatinine 3.99

GFR  10

Oct. 4, 2012 

Creatinine 5.65

Potassium 3.9 (fine)

Hb 9.0

Hematocrit 26.2

Wbc 6.5

GFR  10

weight 172


weight - need to drop 10 pounds should be good for 1.0 of creatinine scale

protein - cut to < 20 grams / day. should be good for 1.0 on creatinine scale

Sept. 27, 2012 

Had partial left nephtromy. No clamp. 90% of the left kidney was saved. Tumor removed was clear cell carcinoma. Fuhrman Grade II out of IV

Tumor: AJCC  2010 staging system:  pT1

When it comes to nephrectomies (especially partial), there's only one guy. "He's the man!!!!" Dr. Paul Russo, MD - MSKCC. Dr. Russo was described to me as THE BEST. That description doesn't go far enough.  Even other docs at MSKCC are in awe of Dr. Russo, you can see it in their body language when his name is mentioned.

Sept. 26, 2012 

Admitted to Memorial Sloan Kettering Cancer Center, NYC. Had dialysis catheter inserted in right shoulder. Just in case I needed it. 

Sept. 19, 2012 

Creatinine  3.12

K  5.5

BUN  43

GFR  20

weight 167

Sept. 4,   2012 

creatinine 3.29. Too high. Drop weight & cut protein.

K 5.3  polystrene. 

GFR 19

Weight 165

Aug. 31,   2012 

Test Date Order Name
Lab Name(s)
Lab Comments
08/31/2012 Complete Blood Count View History
3.4 K/mcL
[1.5-8.8 K/mcL]
10.0 g/dl
[13-17 g/dl]
95 K/mcL
[160-400 K/mcL]
2.98 M/mcL
[4.2-5.6 M/mcL]
4.9 K/mcL
[4-11 K/mcL]
08/31/2012 Comprehensive Metabolic Panel View History
3.7 g/dl
[4.0-5.2 g/dl]
  Alkaline Phosphatase
79 Units/L
[45-129 Units/L]
54 Units/L
[5-37 Units/L]
49 Units/L
[10-37 Units/L]
  Bilirubin, Total
0.3 mg/dl
[0-1.0 mg/dl]
39 mg/dl
[6-20 mg/dl]
8.3 mg/dl
[8.5-10.5 mg/dl]
109 mEq/L
[98-109 mEq/L]
  CO2 (Carbon Dioxide)
29 mEq/L
[24-30 mEq/L]
3.0 mg/dl
[0.6-1.3 mg/dl]
76 mg/dl
[70-99 mg/dl]
Glucose FASTING reference: PreDiabetes: 100-125, Diabetes: >125 , NON-FASTING: Normal: <140, Diabetes: >/=200 mg/dl.
5.9 mEq/L
[3.5-5.1 mEq/L]
DUPL.,CRITICAL VALUE,called to and read back by DR.Alanee, Shaheen
  Protein, Total
5.5 g/dl
[6.3-8.1 g/dl]
140 mEq/L
[136-144 mEq/L]
08/31/2012 PT&APTT View History
35.2 SEC
[9.4-12.8 SEC]
  PT (INR)
3.43 INR
[0.83-1.15 INR]
Therapeutic range most indications: 2.00 to 3.00 Therapeutic range mechanical heart valves: 2.50 to 3.50 RUN REPEATED
40.3 SEC
[24.4-33.2 SEC]
Therapeutic range UFH: 55.0 to 80.0 sec RUN REPEATED
08/20/2012 Phosphorus View History
3.5 mg/dl
[2.5-4.2 mg/dl]
08/20/2012 TP, Urine View History
  Spot T.P., Urine
<6.0 mg/dl
© 2012 Memorial Sloan-Kettering Cancer Center: MYMSKCC

Aug. 20,   2012 

View History
3.9 g/dl
[4.0-5.2 g/dl]
  Alkaline Phosphatase
78 Units/L
[45-129 Units/L]
56 Units/L
[5-37 Units/L]
51 Units/L
[10-37 Units/L]
  Bilirubin, Total
0.3 mg/dl
[0-1.0 mg/dl]
37 mg/dl
[6-20 mg/dl]
8.9 mg/dl
[8.5-10.5 mg/dl]
108 mEq/L
[98-109 mEq/L]
  CO2 (Carbon Dioxide)
27 mEq/L
[24-30 mEq/L]
2.8 mg/dl
[0.6-1.3 mg/dl]
86 mg/dl
[70-99 mg/dl]
Glucose FASTING reference: PreDiabetes: 100-125, Diabetes: >125 , NON-FASTING: Normal: <140, Diabetes: >/=200 mg/dl.
5.6 mEq/L
[3.5-5.1 mEq/L]
  Protein, Total
6.0 g/dl
[6.3-8.1 g/dl]
140 mEq/L
[136-144 mEq/L]
08/20/2012 Phosphorus View History
3.5 mg/dl
[2.5-4.2 mg/dl]
08/20/2012 TP, Urine View History
  Spot T.P., Urine
<6.0 mg/dl
© 2012 Memorial Sloan-Kettering Cancer Center: MYMSKCC

July 31,  2012 

Creatinine  2.96

K  6.0. 

BUN    41

When blood counts are very abnormal you get sent for additional tests the next day to confirm no mistakes have been made. No mistakes.

July 30,  2012 

Creatinine  2.96

K  6.2. Wow this spiked. I've got to get this down.

BUN    42    Uh, Uh

Hemagloblin   9.2

Weight 163

July 29,  2012 

40 laps.

3 miles

Cut the lawn. Perhaps too much activity on a hot day.

 July 27,  2012

32 swimming laps. 

Weight  160

July 25,  2012

30 laps today. My bad shoulder hurt the next day. 3 miles in the early AM. Not bad, not bad

1 lap underwater. .

July 16,  2012

20 swimming laps today. A new 2012 summer record.

May 17, 2012

Creatinine 2.77

BUN 33

Potassium 5.1

GFR 23

Hemaglobin 10.3

Weight 146

My weight is too low. Unlike the rest of America, I'm trying to put on weight. I do not know if progressive kidney failure has the little ups and downs of blood counts like my case. Perhaps the blood counts are so close over time there is real little difference. 

Its ironic that when I started this web site 12? years ago (on AOL) I titled it Cured Amy Patient Home Page. I was cured of active amy disease - at least till this date. But, with progressive kidney failure and a pacemaker that paces continuously, amy is likely to get me in the end from the organ damage it did back in the early 1990s. A good lesson for others. The earlier your diagnosed and faster your treated the less the organ damage and the better your prognosis.

April 3, 2012

Creatinine 2.93

Potassium 5.3

GFR 22

March 29, 2012

I'm reminded today about how truly fortunate I am. Sometimes I forget that and dwell on my current problems. Perhaps overly dwell. Each day is precious. I have always had a difficult time coping with the mental aspects of the disease and the resulting physical problems. Other post treatment amy patients have adjusted quite well. I have to keep that in mind.

March 21, 2012

Jogging, hill jogging and swimming. The swimming takes me all the way back to my earliest childhood memories. Swimming was always something I was good at. If I go on dialysis my swimming days are over. I never really considered that swimming could or would ever end. 

March 6, 2012

Today a jogging session of 50 minutes. A hill jogging session of 6 repeats. Ending the day with a swimming session of 20 laps or 500 yards. The swimming felt like I was really out of shape. But my bad shoulder held up and the breaststroke felt good. 

I'm getting feedback that the stress echo with 10 minutes on the treadmill was pretty good. I might have gotten to 11 minutes, but I was afraid of cramping up or falling. That's all that anyone reading the consult report would remember if I had gone down. "Know when to fold em." 

March 4, 2012

After much thought here is my game plan. The mass / tumor in my left kidney is my primary problem. The only thing I can think of is to ensure the number and dose of Procrit is cut back. Because of my kidney failure my hemagloblin had declined. I was given Procrit shots to boost my red cell count. Unfortunately Procrit also boosts tumor growth so in order to starve the tumor, cutting back on Procrit makes sense.

As to my kidney failure, I'm an engineer by education and trade. The kidneys are filters. If water is being filtered, the faster the water flows through the filter, the greater the filtering process. I can speed up my blood movement through exercise. The more often I jog, the faster and longer my blood flows through my kidneys. Hopefully, the filtering of my kidneys also increases. Today I moved to two jogging sessions and 1 hill jogging session. We will see. Diet and exercise multiple daily sessions may work.

February 28, 2012

U of Penn Lab blood and urine test results:

Creatinine 3.03, Albium 4.1, K  5.4, Hemagloblin 9.7, no protein in urine, no blood in urine, free light chain normal

February 28, 2012

I had an appointment with Dr. Laura Dember, MD at U of Pennsylvania hospital medical center (Perlman Center), Philadelphia, Pa. Dr. Dember is a nephrologist that recently accepted a position at Penn. She had been a member of the Boston U amyloidosis program for several years. Appointments with Dr. Dember can be made by calling Penn at  215-662-2638. If your seeking a physician experienced with amyloidosis disease, and has extensive amyloidosis patient experience, then Dr. Dember is a wise choice. Penn is expanding their amyloidosis program which is very, very good news. 

February 27, 2012

blood test results:

Creatinine 2.81

K 5.1

BUN 22

GFR 23

Hemogloblin 9.9

The diet works. I just have to concentrate on the protein. As the limit approaches 0.

February 19, 2012

So much to explain. The results of my kidney transplant evaluation showed a mass on my left kidney and lesions on my kidneys. Ultrasound and CT scan (oral contrast) tests showed the mass and lesions. February 10,  I had an appointment with an oncology / nephrology surgeon at Memorial Sloan Kettering Cancer Center in New York City. This surgeon confirmed what I had been told by local urologist and nephrologist. Given my stage 4 kidney failure function, surgery to remove the mass or IV contrast CT scan were NOT recommended. The damage to my kidney function would likely put me into dialysis. A followup ultrasound in 3 and 6 months was recommended to monitor the mass. Its 20 % chance the mass is benign, 25 % chance indolent tumor with limited metastatic potential , 54% clear cell carcinoma (cancer).

Kidney transplant decision has yet to be decided. Cancer would eliminate me as a transplant candidate. My cancer status cannot be definitely made via surgery or tests because of my poor kidney function. It's Catch 22.

Did you ever think about becoming a living kidney donor? You do not even have to be compatible with the recipient. There are paired exchanges so you can donate a kidney and another donor donates to your intended recipient. There are also chains of donors and recipients. The largest chain involved 30 kidney donors and 30 kidney recipients.

See links below.

I'm running hills now. It feels good.

February 3, 2012

Serum Creatinine  2.98

BUN  25

K  4.7

Hemogloblin  11.0

GFR 21

Weight  153

Strictly adhering to low protein & potassium diet. I was hoping for a larger decrease in creatinine. However, the BUN, K, other test results are within the normal range. Hooray! My guess / hope is the creatinine responds more slowly to dietary restrictions then K, BUN, etc. I have to stay with the diet.

January 24, 2012 . I had a kidney transplant evaluation. Lasted 6 hours with tests. Blood, EKG, chest X-Ray. Cardiac stress and echo to come. Dental clearance. I'm running now. No more fast walk. I've started hill running till failure. Got 3 hills till failure the first time. Not too bad for a 63 year old. If the start of the transplant evaluation process does not motivate the low protein, low potassium diet, nothing will. All it took was another nephrologist appointment and a second opinion and the transplant process is begun. My creatinine and GFR have remained relatively stable over the last 3 years. Do yourself a favor and get 2nd and 3rd medical opinions on everything. That's what I should have done over the last 3 years.  I can't wait to see how the diet is working.  

December 29, 2011 

Serum Creatinine 3.08

K  5.8

Hemogloblin  11.2

GFR 20

Weight  158

My creatinine and potassium spiked. Thanksgiving and Christmas are bad for the diet. New target is 21 grams of protein and near zero grams of K per the  Dr. Walser MD Johns Hopkins book on kidney failure diet. I have got to watch it closer. Saw a new nephrologist 1-4-12. He wants me to start the transplant registration paperwork process. I'm on the tracks. I can see the train headlight clearly now. It's bearing down on me. I'm picking up speed. I've got to keep the distance between me and the train constant. NO closer!

December 15, 2011 

Serum Creatinine 2.92

K  5.1

Hemogloblin  10.5

BUN  32

GFR 22

Weight  160

I've started swimming laps again - indoors. First time out, after a few laps, I was exhausted. How quickly I get out of shape after stopping the swimming the first week of September. After 3 swimming sessions over a week I felt much better. My distances improved and in 2 weeks I was up to 30 laps or 750 yards. Feels pretty good. Not as nice as outdoors, but better then just jogging. I've also continued to speed walk / jog, so I'm back into my summer exercise regime.

I put on 7 pounds of weight. I did not weigh myself for 2 or 3 weeks. Big mistake. I can feel the extra fluid. 153 here I come.

November 17, 2011 

Serum Creatinine 2.8

K  5.1

Hemogloblin  11.3

BUN  37

GFR 23

Weight 153

It's cold, wet, & rainy in SE Pa. When I was a kid there were ads on TV with a guy in a swim suit in the ocean yelling, "Come on down (Florida), come on down!" Now I realize he was shouting at me.

A couple times a week I go to Florida. Key West. On line web cams show the sunset (my favorite) cam and Fort Zachory cam with a great shot of the beach and ocean. It's almost like being there. I can almost taste the ocean breeze and feel the warm ocean with my feet.

October 6, 2011 

Serum Creatinine 2.7

K  5.1

Hemogloblin  9.6

Weight 156

I've been sticking to the diet. Its been 20 degrees cooler in the last few weeks and the lack of heat does help my creatinine. I'll need a Procrit shot Oct. 10, but I'm not surprised. By early evening I'm so tired I just lay in bed. Its a sign that my blood counts are too low.

I had been eating hard candy - no protein and no potassium - and my dentist found cavaties and asked "what are you doing"? Sigh, no more candy. I've given up on beer and red wine, now its strictly Chablis and that may have helped the potassium. Too many phosphates in the beer anyway. 

I had serum and urine electrophersis tests looking for light chains. Nothing unexpected which means no active amy disease. Boston was "very happy".

September 7, 2011 
Serum creatinine  3.2
K   5.1
Hemogloblin 10.1

The 3.2 creatinine is discouraging. I've dried out in the heat, and that negatively affects creatinine, but....

August 10, 2011 

Staying Alive

If the proof is in the pudding, then I’m a pretty good pudding cook. It’s been a lot of trial and error. A lot of error. Still, the lesson here is to take control of your situation, as best you can. Turning it ALL over to others, including physicians, is something I can’t do. That’s not to say, I don’t go to the doctor. Far from it. At last count, I had sixteen (16) docs. That does not include European docs that follow me. Wish I had been as popular decades ago. But not with docs. 

If anyone is interested in following me on twitter, Email me and let me know. I'll set it up. 

It occurred to me, I never relate anything of a personal nature. Right now  6:42 PM EST USA, I'm sipping Chablis with a touch of Cabernet Sauvignon (low potassium) listening to Sinatra - Capitol Years double set album. How sweet it is!

 3 miles speed walk this AM and 600 yards swimming this PM.

August 7, 2011 

Weight 155. At 155 all traces of left ankle edema are gone. Less body weight / mass, less fluid for the heart to mobilze and less heart work. CHF patients take note. At 155, I look in the mirror, take off the face and I look like 11 th grade. Not as tight and muscles not as defined, but its not that much removed. Ponce de Leon seached for the fountain of youth. This may be how you get there.
2.7 miles in a speed walk and 600 yards swimming today. The shoulder is better. Just got to nurse it along. It was hot.

August 2, 2011 .

I have been doing something that may have helped with the Atrial Fibrillation (A Fib).  Granted, no double blind clinical trials, but I for one cannot wait. So I'm out here in outer space trying things. 40 years ago, I took a Hatha Yogi class. I remember breathing exercises. One stuck with me. It was to inhale and then exhale 3 times as long as it takes to inhale. I know this works because I've used it for years to get ready to swim underwater. It clears the lungs of CO2 and allows you to get full O2 lung capacity. Yogi masters can slow the heart beat rate down. A Fib is a quivering / rapid heartbeat. In theory, if you can slow your heart down, you may have a positive impact on the A Fib. So for the last few months, I've been doing Yogi poses and breathing exercises. I've tried the Hatha Yogi breathing while walking. Has it positively impacted the A Fib? Who knows. I have a gut feeling that someday there will be a controlled medical study that shows a link. Current medical practice is too passive. Here's a script, now take this medicine. I don't agree with this approach. A Fib for me disappeared about May 1. That's about the time I started Hatha Yogi poses and breathing. 

On kidney failure, about 8% of your body weight is blood and blood by products. If I weigh 200 pounds that 16 pounds of blood for my kidneys to clean. If I weigh 150 pounds that is 12 pounds of blood. 25% less work for the kidneys. I think of kidneys as a filter. Less work, the longer the filter lasts.

July 29, 2011 .

Serum Creatinine  3.1

K  5.3

Hemogloblin  10.9

Weight  160

Holding my own.

July 19, 2011 .

Good news on the A fib front today. (Yes, this is a war.) A pacemaker interrogation today showed no A fib since May 1. That's 2.5+ months since any A fib activity. 

Swimming wise I got up to 40 laps = 1000 yards and my right shoulder gave out. I'll need an orthopedic doc soon. I cut back on the swimming and started only kicking, using only one arm. The shoulder is an old injury, nothing to do with amy. 

The shoulder problem reminded me that if a cat has nine lives, I've gone through about twelve. When I was 10 or so, I fell water skiing and my hair grazed a sharp rock. My skull could have been crushed. At 18 I was SCUBA diving and became disorientated. I could not find the surface. I struggled and saw the light and got to the surface. At 22 I was motorcycling through Europe one day and after several hours put on a helmet and 5 minutes later had a head on crash with a car. The helmet was cracked. Broke my right collar bone and ended up in a Yugoslavian hospital for 2 weeks. ( NOT recommended). In 2001, Memorial Day weekend, I was jogging down a road suffered a cardiac arrhythmia, hit the pavement head first, and was taken to a hospital emergency room. The cardiologist on call, ran EKG / tests, determined a severe degree of heart block, and told me he thought I had suffered a fatal cardiac arrhythmia. Somehow striking my head on the pavement had restarted my heart. He was bewildered as to how it all happened, but made it clear he had never seen anything like me before. I've had other brushes. Looking back, amy diagnosis was not exactly somewhere I had never been before. It's as if someone was always looking out for me. Being called the "Chosen One", I thought referred to amy. Perhaps it referred to my life. Looking back, having a pre determined fate I always thought as nonsense.  Not anymore.  

I've received Emails and understand the theater is not empty. Keep those E Mails coming. As my mental and physical status travels to parts unknown, I'll try and keep you informed and up to date.

July 18, 2011 .

I've been toying with the idea of requesting my local cardiologist to switch me from Coumadin to Pradaxa. Pradaxa is a new med that would eliminate the need for monthly finger prick blood tests and restricting leafy green vegetables (which I ignore). As luck would have it, my local cardiologist is on vacation. As one who always solicits 2nd, 3rd, etc. medical opinions I inquire. One doc has no experience with Pradaxa. One doc advises he does not switch his patients from Coumadin to Pradaxa if they are stable on Coumadin. Another doc advises me to stay on Coumadin as Pradaxa is excreted through the kidneys and and 3.0 serum creatine level is no time to experiment with kidney function. Know when to hold em, know when to fold em, know when to walk away, know when to run. I remember several years ago being advised by the BU amy medical doc and professor of medicine program director that if wanted to practice medicine, I should apply to the BU School of Medicine. I told her I wasn't smart enough to get in. "Doesn't that tell you something", she replied. Granted I will never practice medicine on others (very fortunate for others), but then again, having me for a patient is a once in a lifetime opportunity. In a way, I have a one patient medical practice. I'll hold em and stick with the Coumadin.

July 11, 2011 .

For all you kidney patients out there, allow me to recommend a book. It's titled "Coping with Kidney Disease - a 12 Step Program to Help You Avoid Dialysis",  by Mackenzie Walser, MD. Published by John Wiley & Sons. Dr. Walser is a Johns Hopkins physician. I must have read it 5 times. This book is not just for amy patients, but any kidney failure patient. Basically, it comes down to a vegetarian low protein diet. That eliminates / reduces diary / meat /  junk food / salt / etc. Its a great way to lose weight. Trust me.

About 800 yards swimming and 3 miles walking today. It was hot!

July 4, 2011 . Independence Day.

Patients call me the Chosen One. Physicians call me the Patient from Hell. I am, the most interesting man in the hematology world of monoclonal plasma cell gammopathies. Stay thirsty for life my friends!

June 30, 2011 . Blood test results. Not good.

Serum Creatinine  3.1

K  5.6

Hemogloblin  11.4

Weight 163.5

I'm convinced each pound of weight is worth 0.10 on the K scale. Plus, or negative, my blood test results get worse in the summer months. I dry out. 155 here I come. I'm going to miss the beer / wine. Going on the wagon is going to be tough. And I'm not even an alcoholic - not yet.

June 26, 2011   Today I swam underwater for 25 yards. That's pushing off from the wall while in the water, not diving in. I was surprised how easy it was. Much easier then last year. I've been doing this underwater test for 55 years. Sorts of tells me where I'm at shape wise. Granted, you have to be crazy to be doing this with A Fib, kidney failure, a pacemaker, etc., etc.. But the thought that none of the many docs treating me could do this brings a nice laugh.

I've posted some short stories on the Amazon Kindle and Barnes & Noble Nook sites. They are short, very short, but for 99 cents you won't go broke either. The shorts have nothing to do with amy, but hopefully you'll enjoy them.

June 16, 2011

Yesterday I walked 4 miles and swam 400 yards. I invite anyone half my age (63) to tag along. We'll see who quits first.

May 26, 2011

hemogloblin 10.8

serum creatinine   3.0

k  5.3

Weight 161

It's gotten warm and I dry out in the spring / summer. Rising creatinine is to be expected. I have to watch the potassium closely. I have to get it under 5.0

April 28, 2011

hemogloblin 11.1

serum creatinine   2.9

k  5.4

Weight 162

The potassium has jumped. I must have ate something/s high in K. I've got to watch any K I eat closely.

April 18, 2011

The AF is proving more difficult to get rid of then I imagined. The symptoms - primarily edema in left ankle - comes and goes. The AF is resulting in Congestive Heart Failure - CHF- resulting in the edema. It comes and goes along with the edema. I'm trying some new ideas. They do seem to help a bit. But I'd like to be totally free of AF, CHF and the edema. No salt and no sodium. I've got to slow my heart beat speed down and try and get it back into rhythm. 

Off to the nephrologist today.

March  31, 2011.

Serum Creatinine  2.7

Potassium 4.8

Hemoglobin 11.5

Weight 159

March  23, 2011.

I may have figured out why I developed AF, and how to get rid of it. At least I think I got rid of it. But my symptoms have lessened and I have taken a specific action to get rid of AF. I'll need an EKG / pacemaker interrogation to confirm my suspicion, but it looks good as to AF being  gone. We'll see. 

March  19, 2011.

Weight:  163

Atrial Fibrillation showed up on March 3, 2011. Actually, AF has put in several appearances over the last 10 years. My electrophysiologist does not want to ablate as the "short" is in the left atrium and that would necessitate piercing the right atria to get to the left. I agree. 

"Know when to hold em, know when to fold em, know when to walk away, know when to run." 

I'm going to walk away from another ablation (I've had 2 in the right atria already.)

February 23, 2011.

Weight:  159

Thought for today.

"All that's gold does not glitter, not all who wander are lost." - The Lord of the Rings  - The Fellowship of the Ring - J. R. R. Tolkien

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.
From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.

February 5, 2011.

Weight:  156

I participated in an Amy Foundation 2 hour teleconference with Dr. Rodney Falk, MD as the speaker. Dr. Falk spoke extensively on cardiac amy, diagnosis, tests, how patients present, treatments, etc. It was a very informative presentation with answers to phone in questions. If you did not hear it, Google Amy Foundation, go to their web site, and play this teleconference. It will be well worth your time. If there is a more knowledgeable cardiac amy doctor out there, I would have found him / her.


In thinking about this teleconference and the call in questions / answers, it occurred to me the psychological aspects of dealing with amy never are discussed. If there is a link between the patient psychological status and medical physical status it never seems to come up. Looking back, I'm convinced there is a very real link - a closed loop - between a patient psychology and their physical medical status / results. In my own case, I knew I was cured. Not thought, hoped, prayed, I knew it. The docs were "cautiously optimistic". I did not rely on bone marrow plasma cell lab reports to measure my response to the SCT. I didn't need it after my November 1994 follow up Boston evaluation. Why my SCT response was so good and durable is attributed to "unknown" reasons. I disagree.


My own experience is, since I knew it, I was. Controlled diet, exercise till meeting - and often exceeding- tolerance gave me a mental high. The psychological positive reinforcement than feeds on itself. The mental helps the physical / medical which helps the mental. And so on.


No one really knows when anyone is capable of doing. When they tell you something, they are guessing. In my case I was willing to push the limits well beyond what a "reasonable" patient would do. All "reasonable" cardiac amy patients - at least the ones in the 1996 circa medical study I saw - are deceased. I'm the ONLY survivor.


When a physician does a consult on me, they always write some psychiatric "mumbo jumbo".  It is their observations of my mental status. They have no idea. 


Over the years, my approach to my own amy patient management program was discounted. Not now. Not 17 years later.


January 2011.

There's a misconception that I am "lucky" to be where I am - going on 17 years post SCT. There is, on some level, an element of "luck" involved. But there is also a level of hard work and dedication. I starved myself to get my weight down. I walk / jog for miles on a daily basis. I swam laps. I limit my diet to low protein / low potassium foods. I never "let it go" - even when I fall off the wagon. I wear a CPAP every night for sleep apnea (with a damaged heart it is not a matter of choice). You don't run a marathon by just showing up and running. You prepare and work at it endlessly. I work at it. And this is a marathon.

There is an upside to a diagnosis of obsessive / compulsive personality disorder. You have to be obsessive / compulsive to keep endlessly doing all this stuff - diet, meds, procrit injections, coumadin blood checks, doctor appointments, etc. 

Now if they would only tell me my new diagnosis was "Hypochondriasis".

Anybody out there in Cyberland that regularly reads this, kindly Email me and let me know. I wonder if the theater is empty and I just don't know it. Thanks!

Status January 7, 2011. 

Serum Creatinine  2.6

Potassium 4.8

Hemoglobin 11.6

Weight 165

It was a vegetarian Christmas. I could use some prescription meds to exasperate my obsessive / compulsive tendencies. Now that is a request a psychiatrist would love.

Status December 2, December 22010. 

Serum Creatinine  3.0

Potassium 5.0

Hemoglobin 10.7

Weight 165

Thanksgiving I fell off the wagon for a few days. Turkey, mashed potatoes, stuffing. It was good. It also showed up in my blood work a week later. I gotta plan on a vegetarian Christmas.

Status November 42010. 
Serum Creatinine 2.8
Potassium 4.7
Hemogloblin  11.3
Weight 165

Status September 232010. 

Serum Creatinine  3.2
Potassium 5.2
Hemogloblin  10.0

Had surgery on Sept. 20 for right groin hernia repair. Anesthesia, dehydration, Percocet May had some negative effect on my serum creatinine. 

Quote for today September 16, 2010:   

"On paper you are a mess. In person you look pretty good." - An Anesthesiologist to me during a pre op prep consultation. (Minor hernia repair)

I'll always take my personal appearance over my report card.

Weight  166.

Status August 192010. 

Serum Creatinine 2.8
Potassium 5.2
Hemoglobin 11.5

Weight 169.
I'm walking 3.5 miles in the AM and swimming 500 yards in the PM. The weight is tougher then I thought it would be.

Status July 23, 2010. 
Had a TIA (mini stroke) July 3, 2010. Origin likely cardiac / atrial fibrillation / pacemaker related. Resolved fully in 24 hours. Cardiologist / CAT scan, EKG, Pacemaker check, etc. on July 12. Now I know for sure what a TIA is. It's not caused by being overheated in 95 degree heat. I'm now on Coumadin to thin out my blood. 

8-5-10. Neurologist reviewing CT scan not convinced episode was TIA. Possible "migraine without the pain." Whatever, something happened.

Status July 21, 2010. 
BUN 36
Serum Creatinine 3.0
Potassium 5.4
Hemoglobin  12.7
Hematocrit  38.5
Total Protein 5.8

Weight 176
Shift to vegetarian diet. All food checked for potassium. Weight on 8-10-10 is 169.
Some "prune" effect due to temperature in 90s and dry heat. But weight comes off. I'm going to miss the hamburgers.

Status April 12, 2010

Blood work. Serum creatinine 2.7. Potassium 5.1. GFR 24. Slight decline. Perhaps warm weather related? In warmer weather you dry out like a prune. I'm not spilling much protein, but then I don't consume much. I'm anemic. Low red blood cells typical for renal failure. Low protein / low potassium diet is a real necessity. I'm put on iron supplement and Procrit injections. Weight 173. I've got to cut weight. Better blood work results when my weight is about 160.
The following is my current list of meds:
Aspirin: 1: 325 mg daily
Toprol XI : 1  : 25 mg daily
Phoslo:  667 mg with largest daily meal
Folic acid 1: .4mg daily
Enalapril Maleate: 1: 2.5 mg daily
Syntroid 1: 125 mcg daily (thyroidectomy 5 years ago for thyroid cancer
Hectoral : 1: .5 mcg once per week
Ambien : 1 : 10mg nightly (sleep apnea - use CPAP
Multivitamin : 1 daily
Ferrous Sulfate  325 MG:  1 daily



Status December 14, 2009


Blood work. Serum Creatinine 2.6. Potassium 5.0. GFR  25. Low protein & low potassium diet works. No doubt. Kidney problems? Plan on becoming a vegetarian. No dairy products, no bananas, no tomatoes, no oranges (I really miss oranges), no .......


I can handle the kidney issues with diet. Now if I could only handle the heart blockage / atrial fibration electrical issues. A total ablation would likely stop the atrial fibration. But my electrophysiologist is worried about my kidney function - and thus not inclined to ablate.  (What's that they teach you in med school? Above all else - do no harm.)


 Status November 3, 2009.


Blood work. Serum creatinine 2.8, Potassium 5.2. GFR 23. A little better. Diet does make a difference. Sticking to this type - protein / potassium restricted diet - will be difficult. I meet with a registered dietician on Nov. 5. I'm told to concentrate on limiting animal protein. Basically it’s a vegetarian diet, no dairy products, less than 2000 mg of potassium a day.


Status October 23, 2009.


Blood work. Rx from cardiologist looking for reasons for the atrial fibrillation. Serum creatinine 3.1. Potassium 5.2. GFR 21. I've got bigger kidney function problems. The cardiologist sends these blood work results to the nephrologist whose office calls me. Drink a lot of fluids, do not take any ibuprofen, Tylenol, etc. I start another all out protein restricted and potassium limited diet. The nephrologist sends me another Rx for more blood work to be drawn November 3.


Status October 16, 2009.


Doctor appointment with local cardiologist. Echo, pacemaker check and exam. Problem: Atrial fibrillation. My pacemaker recorded 17 episodes since March 2009. Length of episodes varied from a few minutes to several hours. I've had this problem twice before a few years ago. Rx for blood work to determine if thyroid or kidney failure problems are causes. I get an appointment with an electrophysiologist in 2 weeks. Likely I will need an ablation to fix the problem. I've had two ablations before.


If you have had cardiac amy involvement, make sure to get an EKG at least every 6 months, if not more frequent. Heart block / atrial fibrillation from scarring or other causes related to amy seems to be par for my course.


Status August 17, 2009.
Doctor appointment with local nephrologist. Serum creatinine was 2.8. Potassium was 4.7. Doc cut my Hectoral dosage by more then half to 1.0. Cut my Phoslo by half to 667 only once per day - one meal. Doc told me my next appointment would be in 4 months - not the usual 3. 
 Status July 29, 2009.
Attended the Chip Miller Amyloidosis Research and Awareness Surf Fest and Dinner Fundraiser at Ocean City, NJ. Wow, what an event! I was tempted to enter the Surf Contest. But the surf was really up and I thought discretion was the better part of valor. I did say a few words to the crowd. I met Michele, Lance, and Judy Miller, Miller family members and friends. What a day!  There were hundreds of people at the beach and at the post beach dinner. This is an annual event held during July or August. If you ever have the opportunity to attend - please do! You won't be sorry.
The Chip Miller Amyloidosis Charitable Foundation also has other fundraisers during the year. Please visit their web site. "LIFE IS GOOD!"
Status May 22, 2009.
    1. Serum creatinine 2.7. Holding steady. Potassium level 4.7, down from a spike to 5.8.
    2. Weight about 160 pounds. High school weight!
Status Update: as of April 2, 2009 .    
     1. March 19, 2009. Had lunch with Stephen Wright, Aislinn, and Steve's Dad in Belvidere, NJ. Chris' Journey. Stephen's 1500 mile bike ride from Florida to Mass. for Amyloidosis Research Foundation fund raising. Stephen and Aislinn and Steve's Dad: "It was an honor".
     2. March, 2009. Colonoscopy. No polyps for a change. Next lifetime I'm going to choose another gene pool.
     3. Feb. 26, 2009. "A year or two" came in a month or two. Had Pacemaker generator replacement 2-26-09. 
    4.  Jan. 19, 2009. Nephrology appointment. Serum creatinine was 2.7. I have to keep on a low potassium, low salt, low protein diet. No tomatoes, oranges, bananas, etc., etc.
    November 2008
    1. Cardiac: Diagnosis: Electrical heart blockage is almost complete. My pacemaker continuously paces. Reason: Best guess: Amy fibrils have catobolized causing scarring resulting in the heart blockage. Two prior incidents of atrial fibriation resulting in two prior ablations via cardiac catherization to correct the  "short circuits". Prognosis: Replacement of my pacemaker (inserted 2001) in a year or two.

    2.  Kidney: Serum creatinine in October 2008 was 2.6. Serum creatinine holding steady between 2.4 and 2.8 for the last seven years. (Moderate kidney failure). 

  1. Cardiac: October 2008 echocardiogram showed my cardiac ejection fraction to be within the low range of normal.  This October 2008 echocardiogram showed stable heart wall thickness ( constant for last 10 years or so). 
  2. Physical Performance: Went windsurfing several times during the summer of 2008. That says it all.
  3. Other medical conditions not known to be related to amy: Thyroid cancer, sleep apnea, enlarged prostate.......
  4. Have a medical question about me and it is not addressed here - email me.....


If you have been diagnosed with amyloidosis you need to know the type.
WHAT IS AMYLOIDOSIS? It is a name for a disease with three main types (although other rare types are known). It is estimated that 2000-4000 diagnoses are made per year in the USA.
  • AL Primary systemic. A plasma cell proliferative disorder. The bone marrow is the source of the problem. Usually manifests by deposition of amyloid protein deposits in the body including major organs. Diagnosis by tissue biopsy.
  • AA Secondary. A byproduct from a chronic disease such as rheumatoid arthritis. The primary disease causes the production of amyloid proteins.
  • AF Hereditary (familial). Caused by a genetic defect in the liver. The liver is the source of the amyloid protein production.
    1. Get a second opinion. Amyloidosis is a difficult diagnosis for most doctors / medical centers. Get in contact with a MAJOR amy medical treatment center. Links below on my "Major Amyloidosis Treatment Centers". CONTACT them yourself. Do NOT wait for some doctor to contact them for you or give you a referral. YOU DO NOT HAVE THE TIME. This is beat the clock in its most brutal form.
    2. Go to a major amy center. Get your diagnosis confirmed.
    3. Find out what the major amy center proposes as a treatment for your condition. You need the most aggressive treatment you can tolerate and you need it now! Don't take no / later for an answer.
    4. If you do not like the proposed treatment, go to another major amy center for a second / third / fourth opinions. I had appointments all over the country to get a place in line. There is a line to get into these amy centers. Reserve your place in all of them NOW! (Sorry medical friends – but it is a strategy).
    5. Start the treatment and stay with it. Demand progress reports form your doctors. If the treatment does not seem to be working find out about other treatment options at other major amy centers.
    6. Google the Internet for Amyloidosis Clinical Trials. Find out who is doing what where. Contact them and see if you might qualify for entrance into a clinical trial.
    7. Google the Internet for published articles on amy. Read them. Educate yourself so you can ask questions of your doctors. Ask. Ask. They called me the patient from hell. Now they call me "a miracle". Nice guys don't just finish last.
    8. Research ongoing amyloidosis clinical trails. Click on this link   and search on amyloidosis. There are a lot of clinical trials underway. See if any fit your situation. If so, contact the lead clinical trial investigator, see if the trial may benefit you.

    FIND OUT ABOUT ME! GO TO My Page. Click on.......   

          My Page

    Dealing with the Diagnosis

    The most difficult problem for me when diagnosed was the emotional difficulties of dealing with the diagnosis. Although I had physical problems, it was the emotional mental anguish associated with accepting  the diagnosis,  gathering information about the disease, diagnosis, possible treatments, & clinical trials. Then to define my options and make decisions as to medical centers and doctors. That was tough.  Ultimately I did all these almost all on my own.

    • Donation To make a donation to my favorite charity, the Boston Medical Center Amyloidosis Research Program.

        WHERE TO GET HELP, FURTHER INFORMATION. Amyloidosis is a rare disease. Patients should be seen at a major medical center specializing in amyloidosis diagnosis, treatments, and research. When you contact any of the following, kindly mention that you were referred to them by the Internet CURED AMYLOIDOSIS PATIENT PAGE and Jay Helwig.

        Click on the following to go to the Major Amyloidosis Treatment and Research Centers page.

        Major Amyloidosis Medical Treatment and Research Centers

        AMYLOIDOSIS PHYSICIAN DIRECTORY by COUNTRY, STATE / PROVINCE and LOCALITY. To go to a list of physicians and medical practices that have treated amyloidosis patients on a continuing basis, please click on the following: Amyloidosis Physicians Directory

        AMYLOIDOSIS AND INSURANCE. The single most asked topic concerns questions related to health insurance paying for treatment. Many AL patients have been denied insurance coverage for autologous bone marrow transplants with stem cell rescues. For a discussion on this subject, and advice on what to do, click on: $ Money $

        AMYLOIDOSIS PATIENT SUPPORT GROUPS AND LINKS TO OTHER AMYLOIDOSIS WEBSITES. To go to a page with a list of patient support groups and links to other amyloidosis websites, click on: Patient Support


                    Last site update on July 19, 2013.