Stories 2008

2008 starts here

Cécile’s story

I am 55; I live in Mayenne, a small town in western France; I am married with Didier and we have two girls and two grandsons. I work in a bank, full time.

As far I can remember, I did anaemia because of a lack of iron in my youth, but my haemoglobin was round 14 in my twenties.

Since a bronchitis end of 1999 the months leading to my first crisis were difficult –I was so tired! During the cold night of the 6th of March 2000, an acute pain in the chest and in the back awoke me suddenly, and I entered in local hospital. Only morphine could alleviate me. My haemoglobin was round 9, with less than 3 millions of red cells. I was pale, with jaundice, and weak. Some weeks later my illness was diagnosed Primary Chronic Cold Agglutinin Disease in Angers University Hospital where I had been transferred. No treatment was given, only folic acid daily and advice of protection against cold. I have never been transfused.

Other episodes of such pains in the chest, in the back, including the arms led me till 2005 to hospital, with all the tests and check-ups, but doctors could not certify any direct  relation with CAD, or  with any other illness!  I stopped working several periods of some months, because of my weakness. They were related with a decrease of my figures.

In 2000 I tried Danatrol, without response, but side effects. In 2001 I tried Rituximab, efficient for 18 months; I was back at 13,5 and 4 millions! In 2004 one doctor wanted to put me again on Danatrol  (inefficient for us) because of  a lower price than Rituximab! In 2005 another doctor in Rennes University Hospital accepted to put me again on Rituximab; I had only a short response. Facing  failure I accepted to take Interféron; my numbers fell to 8,2, and 2,6 millions! Another failure!

At the moment, my numbers are between 10 and 11, with 2,9 red cells; I still work waiting for a retirement scheme to come. I am still haemolysing, but apparently compensating with my folic acid daily. I have also herpes outbreaks. I only fear driving 60 kilometres  in winter for my job. I live under an oceanic climate, with frost and snow in winter however, and rains, fogs and humid winds more than I would like; so far I have only a slight livedo on my legs. I appreciate a lot a personal spa at home with hot water, as I don’t live in a warm country, to cope with my chronic tiredness, and lack of energy.

Fortunately, one of my three doctors is very supporting and understanding, and ready to every initiative to help. From 2000 search on internet, contacts with doctors and patients (2 women in France, through a national association) could help me a lot.

Congratulations to you all for your work, and thanks for the support you give us in the website to keep hope and to struggle. I give my address for any contact to help.

Cécile POIRRIER-GUILMIN

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Gloria’s story

I am a 66 year old female, born in Indiana, but lived most of my adult life in Southern California.  Moved back to Indiana in 1994.  During an annual physical in 2000, a hemoglobin of 10.8 was noted.  My family doctor referred me to a hemotologist who started tests in May with a Coombs test positive for hemolytic anemia and an elevated titer of 1.256.  By June hemo had risen to 11.8.  Problems didn’t surface until December, when hemo dropped to 8.8.  Went up somewhat after taking prednisone, then dropped again.  Started on cytoxin, and soon after hemo went to 3.  Went directly from the doctor’s office to the hospital for the first of two transfusions.  After this, two shots of procrit,  more blood tests at the Indiana Blood Center and Indiana University Hospital and agreement between the now three doctors of a CAD diagnosis.

Since that time I have managed the CAD by staying warm.  Two years after diagnosis we decided to spend January and February in  Florida.  My hemoglobin has consistently been in the 10’s during the winter and 11 or 12 in the summer.  In October of 2007 tried rituxan, four injections, but there was no improvement.  We aren’t going to Florida this year, but will spend a month in California.  It isn’t quite as warm there in February, but a lot warmer than Indiana.

Gloria Storey

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Inge’s story

Here are a few words about my last years.

I am an 81 year old Danish woman, My husband died in 1998 after a long period of illness. In January 1999 I went for a small walk near my house north of Copenhagen, I returned after 15 minutes and got a chock. My face was totally black. My doctor had never heard such a story. She did send me to a specialist in interne medicine. He took at lot of blood tests and late May he had the result , CAD. He wanted a bone marrow test, but the hospital refused to take one, so he couldn’t find the cause.

As I couldn’t  enjoy the environment any more I moved to an apartment in Copenhagen. I then changed Hospital and doctor. Here they started  a bone marrow test showing a Non Hodgkins lymfom.  I was treated with Leukeran several times and one time with something I don’t remember the name of. None of them helped. In October 2002 they started a test of Mabthera in Denmark. It wasn’t accepted then in Denmark, but a doctor in Herlev wanted to try it on CAD. I agreed to join. The result was e better blood percent. All the other problems were still there.

If it is a little cold ore windy my face, toes and fingers gets black and it is pain full in several hours. Normally  I go home immediately, but if I stay out a little longer I get blood in the urine. It is really depressing. I have given up skiing with the family, walking in the forest, travelling North and worst of all playing golf. Sometimes I can play some holes in summertime, but I have also problems if it is too hot.

In September 2007 my doctor heard about the research in Norway. So I started with Mabthera  and Fludarabine. But I got a terrible infection and I couldn’t see myself all the summer near the Hospital , so we stopped the experiment. Last week we started with Mabthera again, 4 treatments are planned. This time my blood pressure fall and my temperature raised, but I will go on.

It has been very interesting reading your website with all the stories. It has given me the idea to try a new treatment with Mabthera . It looks like it has helped some of your people.

If you want more  informations, please write me.

Inge Andersen

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Barbara’s story

barb johnsonHi everyone! My name is Barbara Plavecsky.

I am 42 years old. I am a Realtor in New Middletown, Ohio. I study Goshin Jutsu karate at the Crystal Dragon Family Martial Arts Center in Columbiana, Ohio. I believe that this is one of the reasons that I feel great. Karate keeps you (and your blood) moving and keeps your mind on full alert. Everyone there is fantastic too. If anyone is interested in taking karate, you may want to try Tai Chi. Tai Chi involves circular body movements and a lot of breathing. It is very relaxing.

I first found out that there was something different about my blood when I was 16 years old and had been admitted to the hospital for Staph infection in my throat. Every time that my blood was drawn the nurse would come back in and tell me that they needed to redraw blood because the platelets clumped in the tube.  I have had many surgeries; the blood work always needs redone. No actual problems with the surgery itself though. I have had 2 children and two miscarriages (probably because of the blood problems). Last year, Feb.14, 2007, I had a spinal fusion. After the spinal fusion I got really sick, I was anemic and was tired all the time. My pulse rate at rest was at 129 beats per minute. I also got an infection in my gallbladder and went to the E.R. on Feb. 23, 2007. I felt terrible.

Over the next few months I was at the doctor’s office or hospital very often. My primary care physician sent me to a hematologist near us, Dr. Garg, to see if he could tell us why all of my blood work was off. What was supposed to be high was low, what was supposed to be low was high and my platelets were clumped. Dr. Garg was sure that he could get an accurate reading on my blood. But, even in a citrate tube, the platelets clumped. We could get counts on RBC and Hemoglobin; they were low, but not really bad. No counts usually show for platelets or white blood cells (Unless I am really sick, then white cells will be high. Platelet count must be done manually). Neither the titer test nor the thermal amplitude tests were done. There were a few other tests that Dr. Garg did and then he told me that I have CAD. He ruled out the other causes for the platelet clumping. I have had CAT scans of all of my organs; all are good except for a kidney stone.

I recently went to another hematologist at UPMC Hillman Cancer Center in Pittsburgh, Dr. Bontempo. I told him what had happened and brought all of my blood work results with me for him to look at. He took 13 vials of blood and ran his own series of tests. I do have CAD, I also have lupus anticoagulant and the platelet clumping is due to the CAD. I have the following antibodies: Beta 2 Glycoprotein I, IgM and IgA. Also, Anticardiolipin IgG Ab and IgM Ab. Hexagonal Lipid Neutralization: positive.Cold agglutinin titer 1:160. ANA titer 1:160. There are a lot of other things in my blood that should not be there. Dr. Bontempo was telling me “You have all of these things and you don’t have any symptoms. You are an anomaly.” He said that we could get rid of the antibodies with chemotherapy, but that might trigger an autoimmune response and we would have to deal with the clumping issue and lupus anticoagulant. I believe that the right thing to do at this time is to leave it alone. I feel great! It is hard to believe that I have ninja antibodies inside my body.

Barbara Plavecsky

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Rod’s story

I have CAD. I am 72 years old as of yesterday and was told I had a problem with my blood during a routine physical about 20Yrs ago. Approx 10yrs ago, after an overnight kayak trip to an outer island with my youngest son which resulted in a 6hr return paddle in a minor storm,  I became very tired, shivered uncontrollably and had very discolored extremities. The next day I was scheduled for another routine physical with the VA and realized then that something was amiss. The lab techs, after drawing blood for the third time with poor results, started to peek out the doorway at me. Consequently, I was give multiple tests to determine my problem and eliminate other possibilities.

I continue to be monitored by the VA, a specialist in Portland, Me., and a specialist at Dana-Farber.

I also continue to lead a fairly active lifestyle although I have had to give up skiing which has been my passion and major winter activity since age five. I still want to ski and am still able but the amount of clothes and gear needed and the possibility of getting stuck on a lift in the wind deters me. At least the kids enjoy the condo.

Currently my numbers are typical, low RBC, Hemo, Crit and high Bili. My only intervention now is Folic Acid and my only recommendation from my Drs. is to move to a warmer climate. They say I am quite fortunate to be as healthy and active as I am. I certainly agree.

Thanks again for your site.  If my situation deteriorates, I and my Drs. will have a source of valuable information to depend on.

Rod Coomer.

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Mary Lou’s story

My name is Mary Lou Lydecker.  I live in North Royalton, Ohio. The photo shows my family, and I am in the center.

Mary Lou Lydecker -webI was 48 when I was first diagnosed with Cold Agglutinin Disease, and I am now 56. When I was first diagnosed in September 2000, I searched the web for a support group, but there was none.  So when I recently stumbled upon this CAD support group site, I was thrilled.  Finally, there would be a group of people who truly understood this bizarre disease and the complications that went along with it.   Here is my story.  (Sorry, it’s long.)

I was an elementary school music teacher in Strongsville, Ohio.  It was late February 2000, and blistery cold in the Cleveland area.  I had a cold and sore throat.   The 5th/6th grade choir had just finished rehearsing.  The choir met before school began, 7:30 am to 8:30 am, due to time limitations and conflicts during the regular school day.   Since my next break wouldn’t be until 12:30 or lunch time, I ran to the lady’s room to “powder my nose,” so to speak.  When I turned around to flush the toilet, the bowl of water was a deep, dark red.

Since I had undergone a full hysterectomy in 1993 and a cancerous but encapsulated lumpectomy in 1996, I panicked, thinking the worst.  I told my principal and school secretary to please call a sub for my classes and I raced to my internist.

Unfortunately, my doctor refused to see me even though I stressed to her nurse and assistant my need to see and talk to her.  Instead, the nurse ran back and forth between me and the doctor acting like a middleman relaying my symptoms and questions to the doctor and then returning answers and a diagnosis to me!!  The nurse told me that the doctor said that I had a bladder infection, that I shouldn’t worry, and prescribed an antibiotic — all of this without taking a urine specimen, blood test or seeing me!!  I questioned this diagnosis and after another couple of “back and forths”, a urine specimen was indeed ordered with a promise that the doctor would call me later that night with results and to see how I was.

When the doctor didn’t call me back by 10 pm that night, I called her emergency number.  She called my fears “unfounded” and laughed at me for being so worried.   I told her that I had never had a bladder infection, had no pain, and was indeed concerned about having something other than what she diagnosed and begged to see her.  Instead, she told me that by the end of the next day, the blood should disappear and pain ease up.  (HELLO!!  DID YOU HEAR ME?  I HAVE NO PAIN!)

When I still had discolored urine two days later, she upped the milligrams of the antibiotic and told me to rest.  I was out of school for two weeks and slept most of that time.

Since I was an elementary music teacher, there were too many music programs to prepare with the children and I needed to return to work.  So after two weeks, I went back to school and promised myself to change doctors over the summer.

As luck would have it, a satellite campus of the Cleveland Clinic opened up in Strongsville that summer.  I had no medical history papers with me when I walked into my first appointment in late August.  As soon as the doctor saw me, and before I had a chance to say anything, he exclaimed that I was very jaundice and that he would order some blood tests.  He mused that there were so many different blood tests, and that if these didn’t show up something, he would order more.   He knew nothing of my experience in February, but  just by looking at me realized that something was causing my jaundice complexion.

Within the same week, I ran out of my allergy medicine and needed a renewal prescription.  Since I was a new patient, it was the Cleveland Clinic’s policy that a doctor had to see a patient before writing any script.

Another doctor in the practice saw me with my new Cleveland Clinic medical papers in hand.  He immediately said that he concurred with his partner that I was indeed very jaundice and that he was ordering more blood tests.

The next evening, a Friday, I received a call from this doctor stating that my hemoglobin number was a 6.8.   He wanted me to come in the next day for another blood test to make sure that the number was correct.   I asked if I could please come in on Monday before school since we had both a wedding in Columbus and an Ohio State football game in which our son was marching for the first time on Saturday.  “OK,” he said, “but, you must not dance or consume alcohol at the wedding.  And please don’t over do it.”

I noticed how cold I was all during the wedding.  I just couldn’t get warm.  But the biggest hint that something might be wrong, came when I started climbing the stairs at the Ohio State stadium.  I would climb about 5 stairs and have to stop to catch my breath.  My husband was a nervous wreck trying to help me but also worrying that we’d miss our son’s first “down the ramp” entrance in the Ohio State Band.

Monday, I had my blood drawn at 7 am before going to school.  At 9:30 pm that night, the phone rang.  I was already in bed, exhausted from the weekend and the day of teaching.   After taking the phone call, my husband gently woke me up saying that the phone call was from the Cleveland Clinic.  My hemoglobin was dangerously low and we were to drive directly to the downtown Cleveland Clinic emergency room.  The staff would be ready for me.

The staff were amazed when I walked into the emergency room on my own and was talking lucidly.  Since my hemoglobin was so low, attempts to draw blood were difficult.  One set of nurses tried 9 times and were unsuccessful before the doctor on call was able to finally draw a vial full.  I was told that my hemoglobin was a 4.8.  I was admitted to the hospital.

The long and the short — I was diagnosed within 24 hours with cold agglutinin, thanks to Dr. Alan Lichtin, a hematology specialist at the Cleveland Clinic.   He told me that cold agglutinin disease often either accompanies a cancer or a tumor, or is the result of a secondary viral infection that occurs due to an undiagnosed mono or pneumonia (hmm – February’s real diagnosis??).

After talking to me and watching my every movement closely, he decided to:

  1. Not perform a transfusion since I appeared to be non-symptomatic and not in any apparent duress,
  2. Send me home to recuperate as long as I promised not to do ANYTHING but rest,
  3. Have me come in for tests every other day (bone marrow, MRI, HIV, X-rays, etc.) to rule out cancers and tumors, and
  4. Continue to take blood tests to monitor my hemoglobin and other vitals.  A transfusion and hospitalization could still take place if warranted.

Thankfully, the tests showed no cancers or tumors.  I was put on a high dose of prednizone, told to keep myself warm, to wear a hat and cover exposed skin if the temperature was below 65, to climb stairs once a day, and most of all, to rest. I was not allowed to go back to my teaching position until my hemoglobin was at least a 9.2.

During this time, I craved ice drinks and ice cream.  When my hemoglobin numbers weren’t improving, and I assured my doctor that I was keeping myself warm on the outside, Dr. Lichtin quizzed me about my eating habits.  After a lecture on the importance of warming the core as well as the outside of my body, I was told to stay away from all cold drinks and cold foods.  Not surprisingly, the numbers began to rise.

A secondary trigger to my disease is the common cold.  My body cannot fight two fronts.  As an elementary music teacher exposure to colds and other viruses are a daily occurrence, and so I found myself in and out of school with many cold agglutinin flare-ups.  Dr. Lichtin and my family members all recommended applying for a disability retirement.  In February 2002, I was granted a disability retirement from my teaching position.

Since retiring, I have mostly been stable with my hemoglobin being around 10.6 – 11.4.   I still catch the occasion cold and then my hemoglobin plummets.  I can feel when this is happening, know what to look for, and call Dr. Lichtin immediately.   Dr. Lichtin has told me that cold agglutinin disease can also precede a cancer or tumor and so he monitors me closely.  I am to call him if I notice any changes in my body.

So far, taking prednizone when I have an “episode”, keeping warm, and rest has worked the best for my condition. I also take 5 mg of folic acid each morning. I have not had any chemo treatments.  The prednizone treatment tapers as my hemoglobin numbers rise.  I’m usually off the medicine within 5 – 6 weeks.

We have a sauna in our basement for those times when I feel chilled and the Cleveland winds and snow blow.  I have several long wool or down coats, loads of hats, scarves, gloves and boots.  I favor “cuddle duds” long underwear, and the layered look.  (I often feel like a bag lady!)   I’ve also rented condos in Florida for the past 7 years during January, February and March.  My husband has two years until retiring from his teaching position.  We just bought a condo in Ft. Myers, Fl. and are hoping to be snowbirds when he retires.

Mary Lou Lydecker

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Barbara’s story

My name is Barbara Southall, and we live in Burlington, Ontario, Canada. I am married to Paul, have 4 children, 6 grandchildren, another is expected in November and have 3 granddogs.

I am 69 about to be 70 in November.

December 2007 I felt pain around my mid section. I took medication with ibuprofen. Felt some relief.  It was at Christmas so I pushed myself.  By the Jan. 4 2008 I had severe chills, the starting of diarrhea and from there went down hill.

On Jan 7, 2008 my family took me to the doctor.  There was not a bed in the local Hospital.

Went home, passed out, family called 911 and went to the hospital.

Had various tests.  The final diagnosis was anemia.  The Cold Agglutinin Antibodies were present.  With a hgb of 83 I went home.

Had blood tests weekly, saw the hematologist on a regular basis.

In May I decided to look up Cold Agglutinin on the Internet and was amazed to find your website.  I immediately started the B5, tried to limit/eliminate ice cream, cold foods.

My blood count went up, after the introducing of B5 until I indulged in the cold foods on vacation.

For me I try to keep it simple and avoid any cold situations, cold foods like the plague, try to eat foods high in iron.

Keep my body inner core warm.  I always carry a jacket.

I can tell when my hgb is low by the soreness in my knees and hips.

I would be pleased to be contacted by anyone.

Barbara Southall

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Roberta’s story

My name is Roberta Franklin and I live in south Florida. I was 67 when I was diagnosed with cold agglutinins in December 2005. I was having acute bowel problems which I have had before and went to the ER in pain.  I waited 6 hours before they brought me back to see a doctor.  The ER doctor ordered blood tests among other things and my blood count was found to be dangerously low.  They decided I should be admitted and the next day a hematologist was called and his partner Dr. Gersten was consulted.  Before releasing me they gave me 2 units of blood.

Dr. Gersten had encountered the disease before and was familiar with the standard treatments.  I immediately made an appointment with Dr. Gersten who said I should have a bone marrow test to determine if I had Non Hodgkins Lymphoma. He did it in his office and  luckily I do not have that.  On December 8 and 29 I had Rituxan and VIncristine, a cancer drug and on Dec. 15 and 22 only Rituxan.  Each treatment takes 4-5 hours  But after 2 treatments my blood was so low 6.1 and I was feeling so bad that Dr. Gersten sent me from his office to the hospital for another transfusion.  I had two units of blood which brought my blood up to 13  immediately.  The doctor was amazed.  I was told to take folic acid once a day, which I have continued taking.

The Vincristine not only made me loose my hair but my singing voice.  I went to a throat specialist who told me my vocal chords wouldn’t close, therefore I could not sing any high notes.  I went to a speech therapist who deals with singers and was told to do voice exercises for months.  It took about 6 months for my vocal chords to become normal again.  Very scary for a singer.

At first I saw the doctor once a month, then 3, then 6 months, then a whole year.   I was feeling well for approximately 2 years.  I should never have waited a year and never will again.  My symptoms returned and I had 4 treatments of Rituxan again in 2007, no Vincristine this time.  My hemaglobin took months this time to reach 13 where it has stayed.

Roberta Franklin

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Steve’s story

steve hearneI am 45 years old and live near Burlington, North Carolina. I grew up in Central Pennsylvania on a cattle farm. I spent my winters feeding cattle, breaking ice in the water toughs and used all my free time for hunting and trapping. I graduated from Penn State with a degree in Agricultural Sciences and Economics. I moved to the eastern shore of Maryland to work in the commercial poultry industry. I mostly worked in the grow-out departments. Starting out day old chicks require the houses to be heated to 90 degrees F, so the chicks will start growing as they hit the floor. Gradually we bring the house temps down to 70 degrees over a 6 to 7 week market age. You can see that someone in the poultry industry that works grow-out get accustomed to warm temperatures. The processing plants are just the opposite, the plants are very cold. I worked in a processing plant for three years before I was having problems with CAD.

I noticed about 13 years ago when I was returning to Pennsylvania to go deer hunting, my hands and feet were cold all the time. I thought that I had got adjusted to the warmer weather in eastern Maryland, and wasn’t tough enough to take the mountain’s chill anymore. That same year I joined the blood bank at work. The first time I gave blood, the blood coagulated in the bag. The phlebotomist’s told me the anti-coagulate in the bag must have been defective. About sixty days later I went back again to give blood. The same thing happened. I went back about three or four months later and the same thing happened. A few weeks later I received a call from a blood bank doctor advising me to go see my doctor. The only time I ever saw a doctor was for stitches or x-rays to see if broke anything on a few occasions and for tetanus shots for puncture wounds and cuts if it’s been more than seven years between shots. Other than that I didn’t need a doctor.

I set up an appointment to see a doctor and she referred me to a hematologist. That’s when I spent the next year getting test after test to determine what I had. After Reynaud’s Syndrome was ruled out, I was diagnosed with CAD. The hematolgists advised me to stay warm, take an aspirin a day and stay warm. The next winter I couldn’t stay outside 2-3 hours at a time until I had to get in my truck, to the heat on, and warm up for 20 to 30 minutes. When I went to the gym to exercise I would have sweat pouring off me while I played racket ball, and at the same time my nose would be blue and my hands and arms would be getting numb. Went I lifted weights the cold steel would pull the heat out of my hands. I had to start wearing gloves. In spin and kick boxing classes my nose and cheeks would get blue.  I did this for several years, but it got more painful, when it was real cold my hands, feet and face went completely numb, and on occasion I couldn’t talk because I could move my face muscles. If I got caught in a rainstorm in the winter while riding one of mules I would nearly freeze. When I would start thawing out, it felt like sand running through my hands and feet until they warmed up and the blood was flowing again. After I got warmed up I was back out in the cold to do it all over again. I went back to my hematologist and told her something had to be done because I couldn’t stay warm outside. I asked her for blood thinner and she told me blood thinner would not help. She advised me to wear warm clothes, stay out of the cold or move south. I asked her for a referral to John Hopkins. I figured someone up there could cure it.

steve hearne 3When I went to Johns Hopkins, I was educated on CAD. The doctor did recommend Rituxin as a treatment. Well I agreed to take the Rituxin treatments and get back to my normal life. After driving to Baltimore for two and a half hours, I received my first treatment. The next day I wanted to see if I was “cured”. I got a bowl out of the cupboard, put some water and ice in it, and added salt to lower the water temperature. Well after about 15 minutes my fingers still got blue and started hurting. I tried this same test after the next three treatments. My dang fingers still got blue and started hurting. That’s when I got some more education about CAD that there is no cure and only a chance the treatments will have any effect on reducing the effects from CAD. Well the next winter I still got cold. I asked the doctor from Johns Hopkins what is the next treatment.  Again I got educated on CAD and prednisone might be an option but it had many side-effects when it was taken for extended periods of time. We agreed to start it early fall and he would wean me off of it late in the spring. I did do my research on prednisone, and didn’t want to stay on it continuous. We tried it for two winters, and I kept asking him to increase the dosage because I still couldn’t stay out in the cold as I use to before I had CAD. He wouldn’t allow me to increase the dose above 80 mg per day. Also about three months after starting the prednisone I asked him “ when am I going to start bulking up, I’ve spending a lot of time doing extra weight training, and I should be as big as Huck Hogan by now, are you sure I getting steroids?”

Well I got another education, this time on steroids and prednisone. Anabolic steroids are used to build muscles not prednisone.

Well after two winters of prednisone, that wasn’t going to help the CAD without the chance of screwing something else up in my body. This ole country boy is about as hard headed as the mules I ride and about as stubborn as one my hounds dogs when it’s time to quite hunting and head home but they want to keep these nose on the trail until they tree something.   I was offered an opportunity to transfer to North Carolina and even get a promotion. Well nothing back in Maryland was holding me back, I was divorced twice, and had a huge falling with my girlfriend six months prior. So I sold my mules, my horse, most of my dogs, and headed south

steve hearne 2I’ve been in North Carolina just over two years. The weather is warmer here. But I still get cold in the late fall and winter. If it’s below 60 degrees I can’t stay outside more than about 30 minutes. I don’t remember getting cold this easy. I’ve decided to give Rituxin another try. I had my first treatment yesterday. I think I’ve finally given up on being able to take the cold again. But I hope I can stand to be outside if it stays above 50 degrees. If not maybe south Texas might be an option in a few years.

I discovered the CAD back in the spring. I read some of the stories. When I saw the picture of Miss Nina with the snow on the mountain and the ice in the water, I did email her and asked her a few questions. I figured if she can live in Alaska, I hope I can stay in North Carolina.

I would love to talk to any of ya’ll about your experiences and or advice.

Steve Hearne

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Pamela’s Story

Hi Graeme. Thank goodness I have found your website.  My name is Pamela Bedford and I currently live in Perth, Australia.

pamela bedford aI have been diagnosed with cold agglutinin disease a couple of years ago, and have had all sorts of battles.

Your website is great, gives me encouragement, and I even print it out and take along with me to the doctors so that they also can understand CAD more.

I have been in contact with Thio Gim here in Perth and he has been a tremendous help already.

I am 56 years, and have just had to give up my job with the Agriculture Department as a Personal Assistant to the Director of Animal Biosecurity, a job I loved very much.  I have my house on the market in suburban Perth and I am hopefully moving to Carnarvon up the north of Western Australia for warmer weather and where my sister lives.

I have just had a cat scan, and now I have to have a Bone Marrow Biopsy so I am on that bumpy road that no doubt many of the CADdys have worn before me.

My CAD was undiagnosed for many years and I thought I had chronic fatigue.  The doctors told me it was all in my head, that I had had a bad divorce, that I was a single mum, depressed and so on.

One day I went to the Doctor for some more tests, and the titre test came back a little out of range.  The Doctor said not to worry and sent me back to work.  Luckily for me, my boss was a very smart ex RAF lieutenant and demanded that I go back to another Doctor as she thought something was wrong and if the test says its out then it needs to be looked into.  Thank God she did as the next Doctor I went to sent me off to a blood specialist and there it was…….. CAD!!  After all those years. I sat down and cried.

I have now spoken with many people regarding CAD to try and get more awareness.  People are amazed as to what has happened and just yesterday I was sharing information with the radiographer who was doing my cat scan.  She had never heard of CAD, so she got a rather short lesson.  She is from England and said you would have to dress in one of those inflatable suits to survive the cold.  I laughed and said funny there is a picture that looks like that on the website.  I am sure she will follow up herself also.

I have lived in Auckland, so how on earth do you survive the cold in Christchurch Graeme?!!!

Anyhow, after all that,  I hope I can be part of the CAD group and keep in contact.  Thio has been such an encouragement already and its so nice to share our good and bad stories and learn from each other.

Pamela Bedford

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For stories from 2015 (with updates) Stories 2015

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