CURED AMYLOIDOSIS PATIENT HOME PAGE. BE CURED.
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 18+ 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.
High Noon
Its 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.
BE CAREFUL! CONSULT WITH YOUR PHYSICIAN(S) BEFORE ANY EXERCISE OR DIET PLANS OR SELF DESIGNED PLANS.
I TEND TO EXPERIMENT ON MYSELF AND I DO NOT NECESSARILY MAKE WISE INFORMED CHOICES.
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.
http://www.kidneyregistry.org/index.php
http://www.nytimes.com/2012/02/19/health/lives-forever-linked-through-kidney-transplant-chain-124.html?hp
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.
jrhelwig@gmail.com
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!
jrhelwig@gmail.com
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 2, 2010.
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 4, 2010.
Serum Creatinine 2.8
Potassium 4.7
Hemogloblin 11.3
Weight 165
Status September 23, 2010.
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 19, 2010.
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).
- 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).
- Physical Performance: Went windsurfing several times during the summer of 2008. That says it all.
- Other medical conditions not known to be related to amy: Thyroid cancer, sleep apnea, enlarged prostate.......
- Have a medical question about me and it is not addressed here - email me..... jrhelwig@gmail.com
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.
- AMYLOIDOSIS
- WHAT DO YOU DO WHEN YOU ARE DIAGNOSED WITH AMYLOIDOSIS?
- 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.
- Go to a major amy center. Get your diagnosis confirmed.
- 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.
- 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).
- 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.
- 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.
- 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.
- Research ongoing amyloidosis clinical trails. Click on this link http://www.clinicaltrials.gov/ 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.......
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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 August 10, 2011. |