Work�in on a mystery without any clues

                    My name is Dennis Krysmalski and my life is certainly different after discovering that I have Amyloidosis. In early 1998 I was asking: what�s wrong with me? Why can�t the docs figure it out? What is �Amyloid�? Why me? Will insurance pay for this? What do you mean there is no cure? Where is the best place to go for treatment? Am I going to die? Will I be able to attend my daughter�s wedding? Will the financial damage be worse that the physical damage? Will I loose my job? Will I ever be normal again?

All in all, my life, though hardly normal now, is good. Prior to my treatment, I went through what a lot of amyloid patients go through and what, no doubt, many more will go through. I knew something was wrong, but nobody was able to diagnose a problem. I went from doctor to doctor with my complaints being written off as simply the effects of getting older. Well, I�m not that old! I tried to stay in good physical health, was an avid runner for years and always tried to eat a balanced diet.

The first sign of a problem for me began in August 1996 when I began to experience extreme dizziness and passing out for no apparent reason. I was referred to a number of cardiologists who performed every possible test. The results showed that my heart was normal other than having a too sensitive faint response. The cause of that wasn�t known and since the possibilities were apparently endless, no attempt was going to made to find out the �why�. I was simply given medication to manage the problem.

By October 1997 the fainting was less a problem for me than the swelling in my ankles. I saw my Internist who quickly dismissed me by saying it was probably �positional�. He always wanted to talk about the fainting which he thought were seizures of some sort. When over-the-counter remedies were of no help, I scheduled another appointment with the Internist and insisted we discuss only the swelling, and nothing else. He ordered a 24-hour urine test and the result was 7grams of protein in my urine. He referred to me a Nephrologist.

The Nephrologist performed more tests. After 3 months of seeing him and a false diagnosis of Hepatitis C, he told me he thought it was probably multiple myeloma or amyloidosis, but was still unsure. He had never seen a patient with amyloidosis, and he wanted to schedule more tests.

I was frustrated with the slow process involved with scheduling an appointment for tests, waiting for the results, and then making another appointment for the test results. I�m not a very patient person, and for me this trial and error approach was driving me crazy. With some assistance and urging from a very good friend at St. Mary�s University in Winona MN, I decided go to the Mayo Clinic in Rochester, MN for an evaluation, and was scheduled to be there April 21 1998. In a matter of days, the Mayo Clinic diagnosed the problem as AL Amyloidosis by kidney biopsy. Mayo explained the treatment options, but didn�t offer much hope. I was told to �get my affairs in order�. In the mean time, the Mayo offered to begin the process of securing insurance pre-approval. My wife and I returned home on April 28. We were very confused and uncertain as what to do next.

I was interested in a second opinion, so after some research and help from a friend in the US Surgeon General�s Office, Dr. Ray Comenzo at Boston University Medical Center (BUMC) and I made contact. I was impressed that he would take the time to speak to me over the phone and how enthusiastic he was about the success they were having in treating amyloid patients. I made an appointment to go there for another evaluation in May 1998. My daughter�s wedding was scheduled for June 29 and the doctors all said that I should delay treatment until afterwards. I was actually considering not going to my only daughter�s wedding. It was at this point that I realized that I was obsessed with getting rid of this disease.

In the meantime, the insurance company was dragging their feet, or so it seemed. It took them 6 weeks to declare the stem cell transplant with high dose chemotherapy �medically necessary�. I thought the length of time they took was positively immoral, unethical and unconscionable. I know now I am one of the lucky ones in this regard.

The decision to go to Boston for my treatment was made for a number of reasons; not the least of which is that BUMC pioneered the stem cell transplant in the treatment of amyloidosis. They had the most experience. Boston could never be confused with Mayo�s efficient approach to diagnosis, but for me Boston offered something more important �compassion and hope. They told me of another patient in the Atlanta area that they had just treated and who would be willing to talk to me if I wanted to call him. After talking to John Bond of Athens, Georgia, I felt hope for the first time in months.

Ten days after our daughter was married (and I walked her down the aisle), my wife and I were in Boston. We arrived on July 8, 1998 and finally left on August 27, 1998. We rented an apartment in the Beacon Hill district. The first 2 weeks were great and we almost had the feeling we were on vacation. Boston is a very walkable city, so we were taking in the sights as well as the local library where I spent some time studying hematology. Getting to and from BUMC was not a problem as they provided a van service. However, everything changed on July 22, 1998. That is my �day zero� when the chemo was administered. I did not tolerate the procedure well and was admitted to the hospital twice; once for 4 days and the other time for 9 days. Also, my platelets didn�t seem to want to come back and it was dangerous for me to travel home which was extending my stay.

Towards the end of August, the doctors felt I needed to be home but needed to make sure my follow-up medical care was in place. John Bond indirectly provided the answer. Boston contacted the doctor he was seeing in Atlanta and arranged for me to see him. So, on the morning of August 27, 1998, I was given a large infusion of platelets that put me up to 30,000 and we were on a flight back to Atlanta that afternoon. I expected to have to get another infusion as soon as the Atlanta doctor saw me. But that was not the case. Being home was amazing. My appetite immediately improved and my platelet count started to rise. I began to exercise each day by walking with hand barbell weights. There was a lot of muscle and weight loss during the treatment that I needed to get back. I actually started back to work in October �98 from home. Also that month, I went back to BUMC for my 3-month follow-up exam and the docs reported that I was IN FULL REMMISION with a complete hematological response to the treatment. I was well on the road to recovery and doing pretty good except for a bout of the shingles in December (I had a bad case so I was in the hospital for 5 days).

In January �99, I was working full time and the amyloidosis was �out of sight and out of my mind�. I wanted to get back to normal. This meant getting on with my life and working on my recovery that is expected to take 2-3 years. I have managed to overcome a number of ailments such as gynecomastia, graft versus host disease, shingles (zoster virus), etc. I�m sure their will be others.

As you can see, mine is a simple story. The things that worked for me were �meeting the problems head on�, �being my own advocate� and letting people know that I had this disease. I knew this was a serious situation and was not going to leave anything to chance.

The thing that helped me the most was my support structure. First and foremost, my wife is the best caregiver anyone could ask for. The outpouring of love and support of my co-workers, friends and family (along with many people that I didn�t even know) touched me in a way that has changed me forever. I am here today in awe of the doctors and nurses at BUMC who are inspired to �do what they do�. Last, but certainly not least, I trusted that God gave me everything I needed to overcome this extraordinary challenge. Just so you know, I have not and will not pray to be healed but rather I pray for strength.

It is now June 2001. I�m still �recovering�. I continue to exercise (a brisk 3 mile walk on most days) and maintain a strict diet, both of which are designed to aid in getting my kidneys back working properly. I generally feel good despite having chronic anemia and high potassium levels. I suppose that I will never really be normal again, but I am shooting for the opportunity to live to the ripe old age of 102 like everyone else.

UPDATE: October 2007
From 1999 to 2003, I was enjoying a very good quality of life. I was beginning to believe I had this thing beat. In January 2003 (symptoms actually started in August 2002) I became very ill. My doctors at Emory Univ. here in Atlanta diagnosed me as having Waldenstrom's Macroglobulinemia (WM) with associated renal amyloidosis. WM is a low grade B cell lymphoma; in other words CANCER. The cancer was treated successfully with Rituxmab and the amyloid subsided. However, my kidneys could not withstand the trauma of additional amyloid and began to deteriorate. Kidney disease tends to be progressive in that the remaining function has more work to do. And so the function slowly declines. In addition, the WM caused peripheral neuropathy. I no longer can feel my feet. What else could go wrong with me?

I started dialysis in 2005. It actually made me feel a little better. I was put on the kidney transplant list once the kidney doctors got over the cancer and amyloidosis. I went from hemodialysis to peritoneal dialysis. I had 14 people (family and 2 neighbors) try to donate a kidney for me. None qualified for various reasons. What are the odds?

Anyway, to make a long story short, in August 2007, I received the phone call telling me that a kidney might be available and to come to the hospital. My new lease on life started on August 20th. The kidney I received is a perfect match, right down to having the same antibodies, which doesn�t happen very often with a non-related cadaver donor. The donor was also a substantially younger person than me. They flew it in from the west coast.
At this point I�m gaining strength and feeling pretty good. The new kidney doesn�t solve all my problems, but it sure goes a long way. It has been working perfectly since the moment it was hooked up. It�s a wonderful kidney and I�m very grateful.

And so it goes�.Dennis Krysmalski


A short story titled "God helps those who help themselves"

There was a priest and his church was in rural North Carolina. The weather was very bad and it began to flood. The priest began to pray to God with the belief that He would save him. The water was rising and was starting to come into the church and the priest was worried. Along came some people in a boat and told the priest to get in so they can take him to safety. The priest replied "God will take care of me" and the boat left.

The water continued to rise, so the priest moved up to the choir loft and he began praying harder than before. The people in the boat came by again and asked him to get in the boat so they could take him to safety. The priest replied "God will take care of me" and the boat left.

The water continued to rise and the priest moved into steeple. The people in the boat came by for the 3rd time and again asked him to get in the boat so they could take him to safety.

The priest refused, saying "God will take care of me" and the boat left. Eventually the priest perished in the flood and when he got to heaven he said to God, "I prayed and put all my faith and trust in You, why did you not save me?". God replied "I tried to...I sent you a lifeboat 3 times".
    
    
    
    

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