| Mark --- My name is Mark and I am 36 years old. I live in Adelaide, South Australia. At the end of November 2002, I began to feel unwell. I was tired and had no energy. I had headaches and bad night sweats every night. Also I had chills especially when I drank cold drinks. My girl friend at the time convinced to see my local doctor. He took blood from me and I went back one week later to get the results. My bloods were all over the place. It suggested that I was anaemic and had renal failure. I had no problems breathing though. He told me to go to the hospital the very next day (12th December 2002). They admitted me after they did a blood test and took a few urine samples. They next day my doctor did a kidney biopsy. He diagnosed me with having Goodpastures disease. I had 14 days of the Plasma treatment and also started on the steroids and cyclophosphamide. My kidneys didn't improve much until the middle of February 2003. But the next day after my doctor told me that my kidneys had improved a lot, I got very sick. I had headaches and very high fever. I went to the hospital and they did many blood tests. But could not find out what was causing them. I was in hospital for 6 day and they sent me home. I still had a bit of a headache. One day later I got very very sick. With very high fevers and headaches. I had never felt so sick before like this. About 5 days later they did a CT scan of my lungs and found some cloudiness in them. I had a bronchoscopy. That day I was very very sick. I almost didn't have the bronchoscopy because I was too sick. Weeks later my doctor told me if they didn’t do the bronchoscopy she would of demanded that I did. She needed to find out what was wrong. I got the feeling she thought I wouldn’t be around much longer if they didn’t find out what was wrong. When I got back to my room after the bronchoscopy. I found that most of my family was there to visit me. My blood oxygen saturation level had fell to 75% so they put my on oxygen. I was also having episodes of shaking. My whole body just shook. Like I was having a fit. My Mum was in the hospital as well. She had breathing problems. I didn't know it at the time. But everyone knew my Mum had been diagnosed with lung cancer. Even my best friend knew and he was there too. They didn't want to tell me because I was too sick to cope with the bad news. My Mum and her doctor told me two days later. My doctors diagnosed me with Pneumocystis carinii pneumonia and put me on Bactrim. 30% of people with PCP die. After a few days I felt much better and was discharged. Ever since I was diagnosed with GPS I have experience pains in my legs, feet, back, hands and arms. Stiff knees also. The night sweats went away finally in March. In April I began to get headaches back. They gradually got worse. At the beginning of May the night sweats came back. Also my blood pressure was normally about 110 over 80 now it's 140 over 110. Last Tuesday and Wednesday my headaches got very much worse. But since Thursday they have just been quite mild. I also have problems with my eyes. They are sore and my vision is blurred. I have too much pressure in them. My eye doctor said it should go away when I get off the steroids that will be at the end of June this year. About a week after I started getting the headaches back I asked my Boss if I could come back to work the following week. He said “no, there isn’t enough work”. I now find out he has replaced me. So I have no job to go back to when I am well enough. Apart from a few days when I was in hospital in February my symptoms were fairly mild. It is quite concerning having life threatening diseases and only having mild symptoms. So I can’t really ignore any mild symptoms now because it may mean something very serious could be wrong. Also I have recently noticed when I lie down and breath out thru my mouth and stop. I still hear air exhaling from my lungs for about half a second. It doesn't do this when I sit up. I hope that some one could tell what this is. I have had breathing problems a couple of times, just lately. I also have a bit of a cough. I checked for blood but I didn't see any. I am always tired and in the last 3 weeks I have be getting very depressed. My joint pain is getting worse. I get it almost in every joint in my body. I don’t know why. |
| Dawn--- I am a female, I was 23 when diagnosed and I am 25 now. I had 14 plasmapheresis treatments and 10 months of prednisone and cytoxan. Along with all the meds that go with them...lasix, potassium pills, etc.... It effected both my kidneys and lungs. I have been off of all my meds for a couple months now. I don't consider myself to be in remission. My doctor has always told me that the disease is gone. She doesn't think I will ever hear from it again. Of course it's always possible! I was extremely lucky that I was diagnosed early enough that I have no permanent damage to my kidneys or lungs. |
| Cheryl Schafer--- I was diagnosed with Goodpastures at the age of 35 in 1992 and I am a woman. The disease affected my kidneys but did not hit my lungs. I felt sick with fever and flu-like symptoms from November of 1991 until I decided I was dying in April of 92. My husband took me to the hospital for test , There was blood in my urine and my creatine level was at 1.05 they almost sent me home. After the 3rd day at the hospital my creatine level was rising and they did a kidney biopsy. I was put on plasmapheresis for 5 hours a day 7 days a week for a month. I was also put on cytoxan and, prednisone. Then I was sent home and came back for treatments every other day for 3 weeks or so and then twice a week than once a week. My last treatment was July 3, 1992 and I was taken off medicine by April of 93. Reactions from the illness and the medicines has left me with the need to take blood pressure medicine and hormones. I have been in remission since. |
| Eunice Diniz Roach Menconi--- I am a Female. I was 30 years and 8 months old when diagnosed. I am now 32 on Jan 22, 1999. I am 10 treatments of Plasmapheresis, also was on Cytoxan and Prednisone--Primary drugs along with: Epogen injections, Niferex, Prilosec, Caltrate(over the counter), and multivitamins(over the counter). Also No salt/low salt diet--because of kidney function. Effected the Kidneys!!!!! also initially effected the liver, although the Doctors did not know exactly why?? Actually Liver seemed worse first! Then liver improved as kidney worsened. Now: In Remission (Off Cytoxan and Prednisone totally) since December 1st, 1998, so treatment from (Late Sept 97--December 1, 1998) Doing well now, (Creatinine Level at 2.0). It was almost 10.0 at it's worst!! As of today, must be on Epogen, multi-vitamins, caltrate, and niferex for the rest of my life. |
| Gerlinde Böttcher, Sweden--- I was born 1946, suddenly out of the blue, diagnosed Goodpastures in November 1997. I was then 52 years of age. I had put on weight and was very tired but thought it was psychosomatic. In my youth, between the age of 20-32 I was a heavy smoker. Smoked 20-50 cigarettes a day. Those years and also later I suffered from several depressions as well as anorexia nervosa. My last spell of anorexia was between 91-92 when my weight was down on 42 Kg (I´m 157 cm tall), my present weight is 64 Kg, my ideal is 58. Apart from those more psychosomatic afflictions and psoriasis, I always was physically very strong. Every second year I had a cold for a couple of days but never flu or bug or such like. When hospitalized I had only 4% kidney function, creatnine over 600... After 7 weeks, 16 dialyses, plasmapheresis, blood transfusions, cytostatic and cortisone plus blood pressure medicine I was released and had by then 19% kidney capacity (that was in January). In June same year I had 20% kidney capacity and at my last cytostatic infusion I had 27% kidney capacity... an improvement. Now I am off all kind of treatment, the last days I even have dropped blood pressure medicine since the blood pressure again is as low as it used to be... Only my pulse is quite high. In may I´m going to test my kidneys again and at the end of the summer I´ll try to start teaching 25% again... I hope it works. My lungs are not affected at all but I do feel that I need tablets about once a week against water in my body. My ankles get swollen. I´m also quite tired, not much physical strength compared to my anorectic spells when I could swim and run and jog for hours... Well. I regard myself privileged to be off dialysis and thank God for being able to celebrate a Christmas so different to the one in hospital one last year. Tami... I wish you well and God´s blessings in your efforts, fight and doings regarding this disease... Don´t give in. I´m praying for you, thanking god for your encouraging site when I found it last year. |
| Stan Hankins--- I am a white male. I was first stricken at 42 and am now 51. This disease hit me full blown, I went from healthy to bed ridden in three weeks. For a couple of weeks I was on dialysis and plasmapheresis, four hours of each every day. I can't remember all the drugs but cytoxan and prednisone were two of them. Organs effected were lung damage, kidney loss and enlargement of the heart muscle due to hypertension. This happened nine years ago and has been in remission for about eight and a half years. A few weeks ago I had my kidneys eight birthday. While I was sick the doctors told my family I probable wouldn't make it. I'm stubborn and anyone with this disease should not give up. I want to thank you for this site and if you have any questions please feel free to ask. |
| Andrea (Morton) Copp--- I am 28 Years old now, but was diagnosed at 16. My first attack was on November 16, 1986. I have lived 12 years now in remission. I was treated with Plasma transfer (Kidneys) along with Dialysis. For my lungs I was on a respirator for 4 months, due to my lungs collapsing. I also received both type's of steroids used, in large doses. I am living a very healthy life style, but have my days of weakness. I have had two children, one is 8 years old the other is one month today. I have been married 8 years, and take everyday with one strong step. |
| John Meehan--- I was diagnosed when I was 45 I am now 52 I received dialysis for 3 years then I was transplanted Both my lungs and kidneys were affected I have been in remission for 8 years. |
| Anne Siemer--- I was a 43 year-old female when I was stricken. It involved both lungs and kidneys - I have lost 21% capacity of my lungs and I had a kidney transplant 8 years ago. I have been in remission 13 years on 2/14/99. My treatment consisted of plasmapheresis, dialysis, and Cytoxan (60 mg. for 3 months). I had been employed at a RV pump manufacturer which glued plastic pumps together and my office was attached to the warehouse. The building was also surrounded on 3 sides by strawberry fields that had just been chemically fertilized. This all happened in So. Cal. in 1986. Just previous to my contracting the disease, I had been in Western Mass. visiting my mother who was in the hospital. |
| Kris Brewer--- I am a 47 year old, white female, who has never been seriously ill in my life. In October of 1997, the local doctor diagnosed me with "persistent" pneumonia, because the medication he put me on never cleared the pneumonia. In June of 98, I was having very severe abdominal pains, could not eat, and urine was the color of weak coffee. My family doctor put me on Pepcid and sent me home. The next day, I was in our local hospital's emergency room, with the same symptoms. They, too, sent me home and said if I was feeling worse to come back the next day. The next evening, after a horrible day of chills and pain, my husband took me back to the emergency room. I waited in a wheelchair for nearly six hours until they saw me. The doctor on call asked if I thought I should be admitted, and I told him yes. The family doctor did not know what was wrong - all they knew was that I was dying and my kidneys were shutting down. He sent for a nephrologist. Thank God for her because she knew almost immediately what was wrong. She did a kidney biopsy, started me on steroids, and, after all the blood they took from me, and were about to try and get it out of my feet - my husband told them to put a central line in. The nephrologist did. I stayed in the local hospital for about a week, but they do not have the capabilities for plasmapheresis, so I was transferred to Pitt Memorial Hospital, which is a teaching hospital in Greenville, NC. I was admitted into an intermediate care facility, one step below ICU, where I was monitored constantly. The Chief Nephrologist came in to explain what was going on and told me that if the nephrologist in the local hospital had not done what she did, I would not have been here. The Goodpastures affected my kidneys mainly, but the doctors also feel that the "persistent pneumonia" was not pneumonia at all, but the first manifestation of Goodpastures. My antibodies were 600, and my creatnine was 9 when I was admitted. They started me on plasmapheresis, after putting in a bigger central line, and I had 14 treatments in the hospital, and 3 out of the hospital. My creatnine stayed up at 9 and now I only have about 1/4 of my kidney function left. I am thankful for this much! As of this writing, my antibodies are -6, creatnine is 1.1, hematicrit is around 35.9. I am doing very well, thanks to doctors who knew of this disease and how to treat it. I was only the fifth Goodpastures patient the nephrologist in Greenville has ever treated, and he has been a doctor for a number of years!! I thank God and all the people who prayed for me and my family. I know if it had not been for the prayers, I probably would not have seen this new year! Thank you, Tami, for all your hard work and everything you are doing to educate the doctors and other people about this disease. |
| Mary Woolworth--- I am a female, I was diagnosed in Aug. of 1998 and I was 38 at the time. My treatment included plasmapheresis (6 treatments), 80mg. of prednisone daily for the first 3 months (which they have tapered down now to 15mg. daily. I am also getting Chemo once a month for the first six months, the sixth being January 15th. After this treatment, my doctor is considering cutting that back to once every other month. I will have to honestly say my treatment has been good, but extremely rough on my body. I haven't been able to return to work, extremely tired and have difficulty standing up for any length of time. The roughest of all is the prednisone, the swollen face and tongue, water retention, extreme weight gain is almost more than one can bare. I was misdiagnosed in the beginning, first they (ENT & GP) just thought I had asthma. When I started coughing up small amounts of blood, they just thought I broke small blood vessels. When I almost collapsed they though I was having congestive heart failure. Thank goodness my sister is a doctor and she jumped in and made them (my doctors) find out what was really wrong. Because of her I was diagnosed earlier than most and my kidneys weren't damaged, however my lungs took a pretty good beating and are healing but slowly. Please make sure that you print this last paragraph. Doctors are not aware of Goodpastures or have little information about it. My sister said the other day a man came into her office and he was coughing up small amounts of blood....she said she sent him immediately to the hospital for testing. I think the key to this disease is early detection. I have been in remission now for six months. I met a friend on the Internet who was diagnosed almost the same time I was...she finally went into remission in December. She was diagnosed almost to late, her GBM test measured 600 before they caught her. Mine never got above 35. As I said....early detection is the saving grace. Please get that across in your web page Tami. You have done a wonderful job so far for all of us with Goodpastures Syndrome, by what you have been doing. Thank you |
Here are some of the procedures and medications that are mentioned in the stories listed.Renal Dialysis--Dialysis of blood to remove liquid and chemicals that the kidneys would normally remove. Hemodialysis--A method for providing the function of the kidneys by circulating blood through tubes made of semi-permeable membranes. Hematocrit-- 1. A centrifuge for separating solids from plasma in the blood. 2. The volume of erythrocytes packed by centrifugation in a given volume of blood.The hematocrit is expressed as the percentage of total blood volume that consists of erythrocytes or as the volume in cubic centimeters of erythrocytes packed by centrifugation of blood. Normal values at sea level: men, average 47%, range 40% to 54%; women, average 42%, range 37% to 47%; children, varies with age from 35% to 49%; newborn, 49% to 54%. Cytostatic---An agent that suppresses cell growth and multiplication. Preventing the growth and proliferation of cells. Plasmapheresis--Centrifuging blood that has been removed from the body to separate the cellular elements from the plasma. The removal of plasma from withdrawn blood, with retransfusion of the formed elements into the donor; generally , type-specific fresh frozen plasma or albumin is used to replace the withdrawn plasma. The procedure maybe done for purposes of collecting plasma components or for therapeutic purposes. Cortisone-- Derived from cortisol and with similar physiological actions. A natural glucocorticoid that is metabolically convertible to cortisol. It is important for its regulatory action in metabolism of fats, carbohydrates, sodium, potassium, and proteins, and is also used as an anti-inflammatory agent. Cytoxan-- Trade name for cyclophosphamide An effective antineoplastic agent that has also been used as an immunosuppressive agent in organ transplantation. Lasix-- Loop diuretics. Prescribed for Congestive Heart failure, cirrhosis of the liver, fluid accumulation in the lungs, kidney disfunction, high blood pressure, and other conditions where it may be desirable to rid the body of excess fluid. Prednisone--cortcosteriods are prescribed for a wide variety of disorders, from skin rash to cancer. a synthetic glucocorticoid derived from cortisol, used as an inflammatory and immunosuppressant. Niferex--prescribed for the prevention and treatment of irop-deficiency anemia. Prilosec--prescribed for Gastroesphageal reflux disease and stomach and duodenal ulcers. Prilosec is also prescribed for conditions in which there is an excess of stomach acid. |
| My husband Richard Miller---was diagnosed with Goodpasture's in September, 1975, at the age of 23 years. The disease first showed itself in the lungs, with bleeding into the lungs. Then the kidneys were affected. He was treated at the Veteran's Administration Hospital in Minneapolis, Minnesota with plasmpheresis (check my spelling), several treatments. Upon release, after 52 days hospitalized, he treated with prednisone. He returned to the VA Hospital from home in Minot, North Dakota once a week for two years for checkups. He has been in remission since. His kidneys were severely damaged, to functioning at only one-third capacity. Thus, he takes medication for high blood pressure, has for years, will for the rest of his life. That has been the only reminder of the disease, except memories of course, until September, 1998. This fall, Rick lost the use of and controll of the muscles in his right foot and calf. After a battery of tests, including MRI and various electrode-type tests, the neurologist concluded he had nerve damage. We were baffled. Rick, always a believer in vitamin and mineral supplements, started reading. It turned out the nerve and muscle problem was the result of a vitamin B/folic acid deficiency which resulted from the damaged kidneys being unable to filter enough vitamin B and folic acid. So, 23 years later, the disease reared its ugly head again, though indirectly. We are amazed that after all these years, so littled is known about this disease and it is basically being treated the same way. Rick credits the vitamin supplements and positive thinking as big factors in his recovery and remission. Seeing is not always believing. Sometimes, believing is seeing. If you believe in your recovery, you will see it. |
| Lisa Barbour....Told by her mom, Diane------Hi! I wanted to tell you a story about a brave young woman who experienced a miracle. She is my 19 year old daughter, Lisa. Back on June 13, 1999, Lisa and I were beginning a 3 day stint at her East Carolina University freshman orientation. For the past month or so, she had had a nagging sinus infection, an awful cough (she was a smoker), she had become very pale(she worked a lot, no sun) and she was always tired. I thought it was the pressures of a high school senior and didn't worry about it too much. Anyway, we arrived full of hope and dreams. That night, from her dorm, she called me saying she was coughing up blood. I told her that I would get her first thing in the morning to a doctor. We were in a unfamiliar town. We went to an urgent care center. She could hardly breath, or move. This was about 9 am. They says her blood count was incredibly low, her lung x-ray showed severe distress. They put an IV in and we rushed to the hospital. By the grace of God, we went to Pitt Memorial Hospital in Greenville, NC. They thought it was pneumonia and began treating her. She got increasing worse very rapidly. Within 24 hours, she was admitted to ICU, put on a ventilator and put in a medically-induced sleep. From being a happy go lucky girl to critically ill in a short time was a mother's worst nightmare. Lisa's lungs were hemorraging. She had to have a lung biospy. From this, they tested for Goodpasture's disease because her kidneys had started to fail. By the next day, we knew that it was expected. Again, God had placed us with a team of doctors who had seen this before. NEver had they seen it in a young woman but her nephrologist had just attended a world conference on Goodpasture's. We kept saying, What is this disease? Where did she get it? It was such a mystery and so very hard to understand. Lisa's lungs were so critical. Each day we prayed that she would survive to make it to the next day. We signed countless procedures. She had so many lines and tubes going in and out of her. She began swelling due to her kidneys failing. She didn't look like a person. We prayed so hard and had so much support. We moved into a motel and lived there for 8 weeks.Lisa began cytoxan treatments and predisone treatments. It was very hard to make that decision because she could be sterile. But the choice was live or die. She began plasma-pheresis treatments. They first said maybe 5 treatments. It went to 25 because the antibodies would not go down. This procedure lasted 2 hours and it made Lisa so cold that her teeth chattered. She soon began dialysis as well because her creatine level was 9. After 4 weeks in ICU, shw was allowed to wake up. Can you imagine the terror of waking up to not being able to move and having lines everywhere and realize that you have lost 3 1/2 weeks of your life being in a hospital? She was moved to MICU and remained there for 4 weeks. -Her day began with waking up with anxiety attacks, 2 hours of pheresis, 4 hours of diaylsis, occupation therapy and physical therapy. Since she had been immoblized for a month, she was practically paralyzed. She had to relearn everything. She couldn't even lift her hand. These were very frustating days for Lisa. She learned that she would not be able to attend school. She wanted to get well. We had people praying all around the world. Her doctors talked about transplants and tried to be somewhat hopeful. They said Lisa's case was extreme and very hard to treat and she might not be able to live a normal life. Each day was a struggle to all of us to maintain our sanity. One day, Lisa said she had the urge to go to the bathroom. We were so shocked. Her kidneys slowly began to produce tiny bits of urine. She began getting stronger and learned how to take a few steps again. I forgot to mention that after 4 weeks of being on the ventilator, she received a tracheotomy. This was very traumatic and hard for Lisa to deal with. She couldn't speack for 2 weeks and had to learn to talk. She had constant trouble with excess fluid and the respiratory therapists were in her room constantly. Within a week, Lisa was ready to go home but not to our house. She had to be transferred to a hospital closer to home, University of North Carolina Hospital. We had 2 younger children that had spent the entire summer with other families and we needed to get home. Lisa was so depressed with this move. She was in a regular room and we didn't receive the pampering that we were used to! This was a teaching hospital so we had as many as 19 doctors a day come in and ask the same questions. Then the miracle occurred. She immediately got stronger, was walking everywhere. Her antibodies went down to 0 and her blood was great. By the way, I failed to mention that Lisa had had 30 transfusions and had almost died 4 times! Even though she was on diaylsis three times a week, she was released. We had a stretch limo pick her up and take her home!! She had a couple of short visits to receive Cytoxan (IV) and she had to endure dialysis for 1 month after being released. She hated to go to the center. She was still a little shaky at home but with time, she returned to her former self. Her creatitine level is now about 1.8 and her kidneys are functioning about 90%. Her lungs are healed. She still can run a marathon and never will be able to due to scarring. But she is truly a miracle! She is leading a normal life. She has a boyfriend and will be attending college in a few weeks. She had to go to counseling to deal with her emotions. It is very hard for us to dwell on what happened to Lisa. We are so grateful to God for giving our daughter another chance. I know that she has great future ahead. She had her year checkup and got great results back. Now it is just every three months to check in. She did lose all of her hair which grew back. She is so beautiful to me and the whole situation changed our family. We became closer. Even though this was so unbeleivably terrible, so many good things came out of it. We are so greatful to God. Thank you for having this site because when she was diagnosised, we depended on your site to understand goodpasture's because it was in layman's terms. I don't believe that Lisa will have a reoccurance. So far, so good. |
