my husband Dieter had to visit an Emergency Room one day because one leg was swelling up quite fast. Some tests were performed, including a blood test. The doctor did not like "a number in the blood test", but otherwise did not give us the impression that anything was urgent. Dieter received a prescription of water pills and his leg was coming back to almost normal size. So we took our time as usual when traveling with our motorhome, parking two weeks at a time in resorts, doing sightseeing and having traveling days in between.
We had bought a camping lot in Tierra del Sol Resort in Florence, AZ in spring 2004 and we arrived back there in October. We immediately made an appointment at a doctor's office nearby. This family doctor diagnosed Dieter with Nephrotic Syndrome after having seen the blood test papers from Colorado and after having ordered a 24-hour urine sampling. His diagnosis could mean so many ailments. He was thinking of Multiple Myeloma and he made an appointment for us with an oncologist in Mesa, AZ, where Dieter underwent every test there is, including biopsy of the kidneys, the spinal cord and the hip bone, MRI's and so on.
The diagnosis was Primary Amyloidosis, a rare blood disorder. The oncologist called it blood cancer.
The outlook was pretty bleak. We were told that both kidneys could shut down at any moment and that the sickness is potentially deadly....
The term Amyloidosis includes a group of disorders caused by abnormal folding, clumping ( aggregation ) and/or accumulation of particular proteins ( amyloids - fibrous proteins and their precursors ) outside of the cell, but within the tissues of various organs in the body. The accumulated amyloids causes the progressive malfunction of the affected organ. Normally, proteins are broken down at about the same rate as they are produced, however, these unusual stable proteins are deposited more rapidly than they can be broken down. The accumulation may be localized, general or systemic.
The oncologist in Mesa did not want to determine alone what to do and was seeking a second opinion by sending Dieter to the Cancer Center in Tucson, AZ. The doctor there was recommending Stem Cell Therapy. He said to Dieter that he would love to have him there on his floors because he loved Dieter's positivity and his humor. We asked him what could happen to Dieter while undergoing this Stem Cell thing...Nothing what he told us sounded good. Dieter rejected this therapy. The oncologist promised to contact our oncologist in Mesa with his advise.
The oncologist in Mesa prescribed Dieter Chemo Therapy which was a high dose of Corticosteroids, together with 2 other meds. His entire body was swelling up slowly, he grew more and more tired and weak, and he gained about 60 pounds on water weight. New Jeans and new underware were needed...
Our neighbor and friend Dick looked after Dieter every day and tried to cheer him up and convinced him that it might be best to keep on working, like building the shed. The building permit and the concrete floor were already there. Neighbors were helping as much as they could or as much as Dieter let them. I was the painter.
We were told that our shed looked the cutest in the park.... see for yourself:
You also see the back end of our Winnebago Suncruiser we had at that time, and our cat Susi enjoying the outdoors in her cage. She felt very content with that, she went in by herself and meowed, which meant: Close the door.
The swellings were slightly down and the oncologist did blood and urine tests again and decided that Dieter should have a second Chemo Therapy. We said No. We decided to sell our lot to be free again - our friend Dick bought it. We had the feeling we had to drive to the east coast, to be "nearer" to our kids and grandkids in Germany....we cannot really explain what our feelings were, we hoped that Dieter would survive, but we were not sure about that. Some force pushed us....
Another friend was offering to drive our motorhome all the way to Florida, so Dieter could rest. But Dieter had the confidence to do that himself. We left - and our friend Dick lost big tears by wishing us well.....
As soon as we had set up camp in Bushnell, FL, in one of our Escapees Membership Resorts, we made an appointment with an oncologist in the Moffitt Cancer Center in Tampa. He ordered a special new test, which confirmed the Diagnosis:
"Primary systemic AL amyloidosis involving the kidneys ( IgG kappa monoclonal gammopathy in his serum)".
Dieter agreed to take the second Chemo Therapy, which was just another random try because there is no known cure for this sickness. This time it was a chemo against breast cancer..
In August Dieter wanted to have a break in scenery, he wished to see the beach. We made reservations in St.Augustine, at Beachcomber Resort, the Gulf directly across the street.
When we arrived there, Dieter got very sick, I mean: sick-sick. He was able to drive our car from the dolly and made the full hook-up connections and had to hit the bed. We thought the chemo had finally catched up with him. After two days I called 911.
After the First Responders had learned what the symptoms were now - vomiting black stuff - they raced with Dieter through St.Augustine to reach Flagler Hospital fast, the sirens going. I was driving directly behind them in our car. The sirens made my mind go blank, I felt nothing.....
It turned out to be a bowel obstruction, which doctors thought was connected to the high dose of Corticosteroids. Dieter spent overall 3 weeks in the Intensive Care Unit. Besides cleaning him out totally to be able to do surgery, the doctors were confronted with lung embolie, liver infarct and heart disturbances. They had to give him high doses of Heparin in order to stop the blood clots and this made his guts bleeding even worse. They implanted a Greenfield Filter into his vena cava to prevent the blood clots from ascending. Then they could operate. Dieter lost 22 inches of his small intestines. A crew of several doctors saved Dieter's life. Would have doctors in Arizona or elsewhere done the same good job? We will never know.
At one point in between, one doctor told me that the situation is serious and I should tell my relatives. I emailed our 3 children and they all came fast, also our son-in-law. Our second son was in Australia at that time and had to fly to Germany first and meet up with his brother. Dieter told them that he is fighting with all his strength and that he will survive. When the children had to leave after one week, that was not quite clear to everyone....Dieter was living only on some small ice chips for 3 weeks but he had the strength and the will to get better. One day while I was at his bedside, nurses run in, pushed me aside, looked at the machines and into his eyes and hit the button "Code Blue". Standing outside the circle of nurses and doctors and not being able to help somehow is the worst feeling...
He was released after 3 weeks into my care into the motorhome. He had to wear oxygen equipment and had to take lots of medication. We had a big oxygen generator under our little dining table and the long hose was leading into the bedroom, to his bed. I walked next to him when he walked daily outside, every day a little more.
Then a hurricane came into our area. The resort had to evacuate. I took the following picture of the angry Gulf of Mexico. Dieter never walked the beach that time nor did he see the beach.......
The oxygen company came to retrieve the equipment - and I was ready to drive our motorhome the first time. Dieter wanted to drive the first stretch....but he made it all the way to Bushnell, 135 miles all by himself. When we arrived there, he was "done".. The manager came and did all our connections. Other campers came and asked whether they could be of any help.
We made appointments in Tampa again. The oncologist insisted that Dieter had to finish his second chemo. He did and when we had a follow-up appointment and tests done, he told Dieter that the second chemo did not do a thing for him, he wanted to try a third.
He sat very near in front of Dieter and said: "Look me in the eye,
if you do not take the third chemo, you will die!"
"Good, then I die" my hubby answered.
I was ready to support all his decisions about this. And I was ready to help him fight that thing all by himself.
That was the last time he took anything against this sickness, besides the supplements I prescribed for Dieter and besides the blood thinner he had to take because of his implant.
After being back in Bushnell, another hurricane came and we had to drive north to Silver Springs. That was the time we decided to go west again, we had it with the hurricanes. When we told Dick and Myrt that we wanted to come to Arizona again, Dick said that we can rent our former lot for a very good price.
We had found out in the meantime that the prices for flights to Germany are the same, Phoenix or New York - no difference.
The picture below shows Dieter before we left Bushnell.
In Nov/Dec. 2006 we flew from Phoenix to Germany. We wanted to show our kids that their father had changed from a sceleton to his old self. We had a good time, but it was very strenuous for both of us.
We hoped that Dieter's kidneys would hold on - and we still do. Even this topic is not important to Dieter. He was reading lately about mobile dialysis units and I just read that "in-center" dialysis has now overnight treatments, meaning, that the patient sleeps the night away and can go home in the morning with clean blood instead of living every third day in the hospital....
Many of my friends already know about this, but so many others do not. If any of my readers ever notice "foaming urine", that would be the first very noticeable symptom. Please, see a doctor then....
In the beginning of his sickness, Dieter lost every day 8 grams of protein through the kidneys.The first defense at that time in 2005 was a recommendation of a doctor in Bushnell to drink 2 big Whey Powder shakes per day to replenish the lost protein. This kind of protein can very easily be absorbed by the body. He still takes one in the morning. If anybody would be interested what supplement I found for him and what he still takes daily, please, contact me via a comment here.
According to the latest test, he loses only 1,8 gram per day these days. Big win - hurray!!
Even the latest blood tests did not show any significant deviation from normal.!
Whatever ails you, my friends, don't feel sorrow for yourself and don't be a couch potato.... and don't follow doctor's advises blindly. Research everything yourself and confer with your doctor over your findings. Stay as active as even manageable and live your life as "normal" as possible.
Happy New Year and my best wishes for Health and Happiness! Karin.