Medical Condition
December 5, 2009
About 4 weeks ago I discovered some small bumps on my head like real bad dandruff and I decided to see a doctor as it looked bad to me. I called Lisa, head nurse a Henan Provincial People’s Hospital, and asked her to help. She did. She brought me to the head of Dermatology, Dr. Li. He diagnosed Seborrhea Dermatitis ( cradle cap). That is a common condition for babies but rare for adults. I took medications he prescribed for a week. It got worse. It completely covered my scalp and was now showing on my hair line and neck. I went back to him again. He brought in 3 additional subordinates and they concurred with his diagnosis, maybe because he was their boss. I continued the meds another week, at Dr. Li’s recommendation, and I got worse. A friend from Christmas Coffee named Rose told me of a small, older hospital in Kaifeng that specialized in skin disorders. We went there. This doctor was much more concerned, gave different meds and strongly advised I go to Zhengzhou University Hospital #1 near my home in Zhengzhou. I did. It seems I have a rare skin disease called Pemphigus Foliaceus. I never heard of this before and neither has anyone I know. As I dig deeper into the Internet for information, I find it has no cure. I never much thought of those two words before with any ailments I have had in the past. It makes you stop and think. The lesions spread rapidly completely covering my scalp, continued to my hair line all around my face, my neck, chest, shoulders and back. There is near constant burning and extreme itching. About five years ago there were no medications available for this disease. Treatment and prognosis was easy….get this disease and you die. A few hospitals world-wide have done very small unreliable studies and developed a treatment. Since few people get this problem, the drug companies do not spend money looking for a cure. Now the doctors use a series and medicines including Pedrezone and other similar products, all of which carry severe side effects. Some of them include high blood pressure, Diabetes, liver damage, kidney damage, Glaucoma and cancer. Remember…these are the “side effects”, not the original disease.
I have seen several doctors here and about 6 student doctors. Oh yes, this is a teaching hospital attached to a university. The doctors seem very nice and concerned. I guess if a foreigner dies while under their care, it’s not a high point on their Resume (CV). There are 3-4 different types of Pemphigus with a couple of sub-types to boot. Type one has a strong relationship to prolonged use of any of five different meds. Of course I never used those meds so that is not mine. By the way, type one is the only one that cures itself by not using those meds any more. Type two is the one I thought I had, Foliaceus, while my doctor said no, her thought was type three. Only further tests would decide. Type three is over 80% associated with undiagnosed cancer. They administered several tests looking for cancer in the following days. Two days ago I was told I was cancer free. I could breathe a little more now. The tests continue. They agreed it was type two, Foliaceus, but still need to determine which of two sub-types.
Friends have come to see me. Many friends and students have come. Word has spread across China to my students that graduated last year too. I’m getting calls and text messages from Beijing to Shenzhen wishing me to get well soon. Many friends bring gifts. Fruit, so much fruit…apples, bananas, many bananas, a case of bottled water, cooked beef, milk, yogurt, fruit juice, big flowers, bigger flowers, small flowers…and my favorite of all…the small gifts bought or personally hand made by my students, all these things designed to bring cheer and happiness to me in my hospital room. The student union, led by my students, have organized the students to come here in small groups of 2 or 3 to talk with me and act as translators or do anything I need done. It’s different here in many ways. Here if you are in the hospital you must have another person stay with you. In USA nurses or assistant nurses do everything you need. Not here. Your friend or family member is responsible for your bed, food, bathing, etc. My best friend here, Will, has arranged for his father to cook and deliver a great Chinese lunch and dinner every day. They bought a special container to transport the food still hot. They live about 30 minutes away and bring the food by bus daily. Sheralee has stayed here with me every night, all night, after work. She wanted to stay home from work and stay here full time but I told her no. She must work. She is a mixture of a little bit girl friend, wife, personal assistant and guardian from all things evil. During the day, many people, between 1-15 shows up to cheer me up. The room is small for the 2 beds that are here. There is a very small seat here for guests to sit on. I had the room to myself for a few days, but that was about to end. They told me I was about to get a roommate. I was not pleased. Like I said it was a small room, but even worse was the fact that if the other bed was taken then where would Sheralee sleep all night? She would have to sit on that tiny hard seat and lay her head on my bed. I could not have that so I told nurses that I wanted to pay for both beds in my room. Reluctantly, they agreed. If Sheralee was kind enough to stay here all night, every night, than I had to be sure she was well rested for work the next day.
Every day here is filled with emotions. It’s bad enough that I’m not sure exactly what’s coming around the corner at me in the next moment, keeping me a bit nervous to say the least, but add to that these unbelievable drugs I must take. One of the side effects is they cause major mood swings. You mean I’m not worried enough, now these add more to the fire. The students and my friends have been great. Someone is almost always here to cheer me up. I try my best to be happy, at least on the outside. Sometimes it gets pretty hard to keep wearing a brave face. This disease I have just gave me another shocking moment. One of my doctors came in this morning and told me the sub type I have of this disease may transform into Lupus. What more can they possible lay on me? I try to keep positive. I try to pray to God to see me through this. I TRY to keep a happy face as the students visit me. Just a few minutes after I was told about this Lupus bomb, five happy students came to see me. I did not tell them what I was just told. I did my best to conceal the fear inside. Sometimes it swells up so powerful, so consuming, I just lay here and I can feel my heart beating in my chest, so hard it actually shakes my body small amounts. Sometimes my brave face shows signs of wear, maybe a small crack, and a friend sees it. They seldom say so, but I know. They will come closer and hold my hand.
Its December 22nd today and I’m still here in the hospital. The days pass quite slowly. Friends and students come to help, but after a while, fewer come. It’s natural. They all have school, lives, jobs and families of their own. Two and a half weeks here and I’m healing so slowly. The problem seems to be the fever they cannot stop. I’m getting IVs every day, the last few days, 10 per day. They switched antibiotics a few times. The days are not well, the afternoons pretty good, then at night the fever returns. About 1-2 hours after I go to sleep it begins. I feel a little cooler at first even though the heater is on in my room. I get a slight tremor in my chest. I try to relax and make it stop. It works a little, but soon worsens and I cannot stop them any longer. My chest, then my whole body shakes more and more. I call to Sheralee. She brings me hot water bottles to put under the blanket, and then tucks in the blanket well. She adds a second thick blanket, then a third. She then checks my temperature and sees it going up from normal 37 to 38*. She tells the nurse who now brings the doctor. The staff here is quite concerned about my fever. It’s uncommon to not respond to antibiotics. I’m worried too. I should have gone home by now and I will if this fever breaks. Last night there was no fever. I’m quite happy with that. I hope we can do two days in a row with no fever.
My friends in USA, Vince and Jimmie, are the best. Both are trying to find ways to help. Vince with his niece/Doctor and Jimmie with the VA hospital in Philippines. The days grew to weeks, four to be exact. Each day I wondered what was in store for me. I read many things on the Internet about this disease….all not good. There was a medicine that was very promising, with no side effects, except for the price. Oh the price. For a regular size person here, the price was 3000 rmb per day. As the medicine is based on your weight, I needed higher doses, double to be exact. That would be 6000 rmb per day. At exchange rate of 6.84-1 that’s $877 per day, with a five day cycle needed minimum. That comes to $4386 per cycle. There may be several or more cycles needed. Highly unaffordable.
Being on the IV’s for almost 4 weeks was difficult. I had to sit or lay down 6-11 hours during the day for them to flow properly. These drugs made me need the rest room more, much more. Each time I did, it increased the risk of the IV becoming stopped up with blood reversal. Almost every day it did and they would have to re-do the IV. I had so many holes in my arms and hands that finding a good vein was increasingly difficult daily. They finally decided to install a long term IV tap that stayed in me for 5-7 days at a time. This made it much easier and less painful to start the IV’s but I could not get it wet, so showers were out, sponge baths only, Monday, Wednesday and Fridays the days hot water was available in my room. Three days before my fourth week there, they decided to try to wean me off IV’s completely and use oral meds instead to get me ready to be released. My body had to be able to handle these new meds and not cause new lesions on my body. They wound up giving me eleven (11) different pills to take between 1-3 times daily. That is in addition to the four insulin shots I need daily also. The pills seem to be working. The doctor warned me that they were sometimes very hard on the stomach as well as other organs and gave me a warning list of things that if any occurred, I was to return to the hospital immediately. It’s now January 3rd, 2010 and I have been home 4 days now. The pills seem to be ok, though quite expensive. The insulin will run 759 rmb monthly. I quote rmb (Chinese money) because I earn rmb here and spend rmb here. Imagine if you will, you spending that amount in dollars. I haven’t priced all of them as yet but the blood pressure medicine costs 48.6 rmb for a one week supply. That’s 195 rmb monthly. Blood sugar testing is also expensive. The tabs that read the blood are one time use. They come 25 to a container, two containers to a box at 270 rmb per box. That equals 162 rmb monthly for those little tabs. I still have many other meds to price. The hospital stay was about 25,000 rmb plus food. Oh yea, no food furnished. There is a cafeteria of sorts on another floor where you can order food as you wish but you pay extra. Not good tasting as in most hospitals world-wide I guess. Friends and students were great. Many students from other foreign teachers came to see me as well. I had bags and bags of bananas, apples and tiny oranges (my favorite), but due to the new found diabetes, fruit was off limits. If I skipped rice for one meal, then I could have one banana.
I have been home a few days now trying to adjust to my new condition and establish some sort of routine. I have been to drug store several times to stock up on needed items and meds. I can never run out of meds or supplies under any circumstances. I keep examining myself for any new lesions as the doctor asked. None so far but I get ill every time I look in the mirror. I’ll admit I was never Prince Charming, but neither was I the latter half of Beauty and the Beast as I appear now.
Two days ago I spoke with a Chinese lawyer about my illness. I told him how I was misdiagnosed twice from another hospital, delaying my recovery and causing higher doses of meds needed because of that delay, as well as expenses incurred last month as well as future expenses related to pemphigus. He is reviewing some papers during this New Year holiday, but he thinks we may have a case against the other hospital and doctor.
December 5, 2009
About 4 weeks ago I discovered some small bumps on my head like real bad dandruff and I decided to see a doctor as it looked bad to me. I called Lisa, head nurse a Henan Provincial People’s Hospital, and asked her to help. She did. She brought me to the head of Dermatology, Dr. Li. He diagnosed Seborrhea Dermatitis ( cradle cap). That is a common condition for babies but rare for adults. I took medications he prescribed for a week. It got worse. It completely covered my scalp and was now showing on my hair line and neck. I went back to him again. He brought in 3 additional subordinates and they concurred with his diagnosis, maybe because he was their boss. I continued the meds another week, at Dr. Li’s recommendation, and I got worse. A friend from Christmas Coffee named Rose told me of a small, older hospital in Kaifeng that specialized in skin disorders. We went there. This doctor was much more concerned, gave different meds and strongly advised I go to Zhengzhou University Hospital #1 near my home in Zhengzhou. I did. It seems I have a rare skin disease called Pemphigus Foliaceus. I never heard of this before and neither has anyone I know. As I dig deeper into the Internet for information, I find it has no cure. I never much thought of those two words before with any ailments I have had in the past. It makes you stop and think. The lesions spread rapidly completely covering my scalp, continued to my hair line all around my face, my neck, chest, shoulders and back. There is near constant burning and extreme itching. About five years ago there were no medications available for this disease. Treatment and prognosis was easy….get this disease and you die. A few hospitals world-wide have done very small unreliable studies and developed a treatment. Since few people get this problem, the drug companies do not spend money looking for a cure. Now the doctors use a series and medicines including Pedrezone and other similar products, all of which carry severe side effects. Some of them include high blood pressure, Diabetes, liver damage, kidney damage, Glaucoma and cancer. Remember…these are the “side effects”, not the original disease.
I have seen several doctors here and about 6 student doctors. Oh yes, this is a teaching hospital attached to a university. The doctors seem very nice and concerned. I guess if a foreigner dies while under their care, it’s not a high point on their Resume (CV). There are 3-4 different types of Pemphigus with a couple of sub-types to boot. Type one has a strong relationship to prolonged use of any of five different meds. Of course I never used those meds so that is not mine. By the way, type one is the only one that cures itself by not using those meds any more. Type two is the one I thought I had, Foliaceus, while my doctor said no, her thought was type three. Only further tests would decide. Type three is over 80% associated with undiagnosed cancer. They administered several tests looking for cancer in the following days. Two days ago I was told I was cancer free. I could breathe a little more now. The tests continue. They agreed it was type two, Foliaceus, but still need to determine which of two sub-types.
Friends have come to see me. Many friends and students have come. Word has spread across China to my students that graduated last year too. I’m getting calls and text messages from Beijing to Shenzhen wishing me to get well soon. Many friends bring gifts. Fruit, so much fruit…apples, bananas, many bananas, a case of bottled water, cooked beef, milk, yogurt, fruit juice, big flowers, bigger flowers, small flowers…and my favorite of all…the small gifts bought or personally hand made by my students, all these things designed to bring cheer and happiness to me in my hospital room. The student union, led by my students, have organized the students to come here in small groups of 2 or 3 to talk with me and act as translators or do anything I need done. It’s different here in many ways. Here if you are in the hospital you must have another person stay with you. In USA nurses or assistant nurses do everything you need. Not here. Your friend or family member is responsible for your bed, food, bathing, etc. My best friend here, Will, has arranged for his father to cook and deliver a great Chinese lunch and dinner every day. They bought a special container to transport the food still hot. They live about 30 minutes away and bring the food by bus daily. Sheralee has stayed here with me every night, all night, after work. She wanted to stay home from work and stay here full time but I told her no. She must work. She is a mixture of a little bit girl friend, wife, personal assistant and guardian from all things evil. During the day, many people, between 1-15 shows up to cheer me up. The room is small for the 2 beds that are here. There is a very small seat here for guests to sit on. I had the room to myself for a few days, but that was about to end. They told me I was about to get a roommate. I was not pleased. Like I said it was a small room, but even worse was the fact that if the other bed was taken then where would Sheralee sleep all night? She would have to sit on that tiny hard seat and lay her head on my bed. I could not have that so I told nurses that I wanted to pay for both beds in my room. Reluctantly, they agreed. If Sheralee was kind enough to stay here all night, every night, than I had to be sure she was well rested for work the next day.
Every day here is filled with emotions. It’s bad enough that I’m not sure exactly what’s coming around the corner at me in the next moment, keeping me a bit nervous to say the least, but add to that these unbelievable drugs I must take. One of the side effects is they cause major mood swings. You mean I’m not worried enough, now these add more to the fire. The students and my friends have been great. Someone is almost always here to cheer me up. I try my best to be happy, at least on the outside. Sometimes it gets pretty hard to keep wearing a brave face. This disease I have just gave me another shocking moment. One of my doctors came in this morning and told me the sub type I have of this disease may transform into Lupus. What more can they possible lay on me? I try to keep positive. I try to pray to God to see me through this. I TRY to keep a happy face as the students visit me. Just a few minutes after I was told about this Lupus bomb, five happy students came to see me. I did not tell them what I was just told. I did my best to conceal the fear inside. Sometimes it swells up so powerful, so consuming, I just lay here and I can feel my heart beating in my chest, so hard it actually shakes my body small amounts. Sometimes my brave face shows signs of wear, maybe a small crack, and a friend sees it. They seldom say so, but I know. They will come closer and hold my hand.
Its December 22nd today and I’m still here in the hospital. The days pass quite slowly. Friends and students come to help, but after a while, fewer come. It’s natural. They all have school, lives, jobs and families of their own. Two and a half weeks here and I’m healing so slowly. The problem seems to be the fever they cannot stop. I’m getting IVs every day, the last few days, 10 per day. They switched antibiotics a few times. The days are not well, the afternoons pretty good, then at night the fever returns. About 1-2 hours after I go to sleep it begins. I feel a little cooler at first even though the heater is on in my room. I get a slight tremor in my chest. I try to relax and make it stop. It works a little, but soon worsens and I cannot stop them any longer. My chest, then my whole body shakes more and more. I call to Sheralee. She brings me hot water bottles to put under the blanket, and then tucks in the blanket well. She adds a second thick blanket, then a third. She then checks my temperature and sees it going up from normal 37 to 38*. She tells the nurse who now brings the doctor. The staff here is quite concerned about my fever. It’s uncommon to not respond to antibiotics. I’m worried too. I should have gone home by now and I will if this fever breaks. Last night there was no fever. I’m quite happy with that. I hope we can do two days in a row with no fever.
My friends in USA, Vince and Jimmie, are the best. Both are trying to find ways to help. Vince with his niece/Doctor and Jimmie with the VA hospital in Philippines. The days grew to weeks, four to be exact. Each day I wondered what was in store for me. I read many things on the Internet about this disease….all not good. There was a medicine that was very promising, with no side effects, except for the price. Oh the price. For a regular size person here, the price was 3000 rmb per day. As the medicine is based on your weight, I needed higher doses, double to be exact. That would be 6000 rmb per day. At exchange rate of 6.84-1 that’s $877 per day, with a five day cycle needed minimum. That comes to $4386 per cycle. There may be several or more cycles needed. Highly unaffordable.
Being on the IV’s for almost 4 weeks was difficult. I had to sit or lay down 6-11 hours during the day for them to flow properly. These drugs made me need the rest room more, much more. Each time I did, it increased the risk of the IV becoming stopped up with blood reversal. Almost every day it did and they would have to re-do the IV. I had so many holes in my arms and hands that finding a good vein was increasingly difficult daily. They finally decided to install a long term IV tap that stayed in me for 5-7 days at a time. This made it much easier and less painful to start the IV’s but I could not get it wet, so showers were out, sponge baths only, Monday, Wednesday and Fridays the days hot water was available in my room. Three days before my fourth week there, they decided to try to wean me off IV’s completely and use oral meds instead to get me ready to be released. My body had to be able to handle these new meds and not cause new lesions on my body. They wound up giving me eleven (11) different pills to take between 1-3 times daily. That is in addition to the four insulin shots I need daily also. The pills seem to be working. The doctor warned me that they were sometimes very hard on the stomach as well as other organs and gave me a warning list of things that if any occurred, I was to return to the hospital immediately. It’s now January 3rd, 2010 and I have been home 4 days now. The pills seem to be ok, though quite expensive. The insulin will run 759 rmb monthly. I quote rmb (Chinese money) because I earn rmb here and spend rmb here. Imagine if you will, you spending that amount in dollars. I haven’t priced all of them as yet but the blood pressure medicine costs 48.6 rmb for a one week supply. That’s 195 rmb monthly. Blood sugar testing is also expensive. The tabs that read the blood are one time use. They come 25 to a container, two containers to a box at 270 rmb per box. That equals 162 rmb monthly for those little tabs. I still have many other meds to price. The hospital stay was about 25,000 rmb plus food. Oh yea, no food furnished. There is a cafeteria of sorts on another floor where you can order food as you wish but you pay extra. Not good tasting as in most hospitals world-wide I guess. Friends and students were great. Many students from other foreign teachers came to see me as well. I had bags and bags of bananas, apples and tiny oranges (my favorite), but due to the new found diabetes, fruit was off limits. If I skipped rice for one meal, then I could have one banana.
I have been home a few days now trying to adjust to my new condition and establish some sort of routine. I have been to drug store several times to stock up on needed items and meds. I can never run out of meds or supplies under any circumstances. I keep examining myself for any new lesions as the doctor asked. None so far but I get ill every time I look in the mirror. I’ll admit I was never Prince Charming, but neither was I the latter half of Beauty and the Beast as I appear now.
Two days ago I spoke with a Chinese lawyer about my illness. I told him how I was misdiagnosed twice from another hospital, delaying my recovery and causing higher doses of meds needed because of that delay, as well as expenses incurred last month as well as future expenses related to pemphigus. He is reviewing some papers during this New Year holiday, but he thinks we may have a case against the other hospital and doctor.
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