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Dorothy E.'s Story

    When I was just a small child, I used to take a type of seizure.  At that time, living far back in the country with no doctors readily available, and it being the depression, my condition was never diagnosed.  As I grew into my teens, I used to faint very often- at least twice monthly.  Once I was in church and started to feel ill and went outside and the next thing I knew I was down in the grass.  I managed to get to my feet and walk to a neighbor's house.

     I always experienced bleeding problems and when I had my first tooth removed I hemorrhaged a few hours later.  I also hemorrhaged during surgery when I was 33 years old and almost bled to death and I also bled after the birth of my two children.

     After having been exposed to the sun, I would always have a rash across any area which had been exposed.  At the time, I just thought it was a bad sunburn- but I was always so very tired.  At one time I went to my doctor and he admitted me for a week to the hospital.  I just lay in bed and rested- didn't feel like getting up at all- however, nothing was determined at that time.

     In 1972, after the birth of my son, I had a severe 'butterfly' rash on my face, it would not go away.  My joints pained so bad that I couldn't walk.  My ankles were burning very badly.  My family doctor at the time sent me to a rheumatologist who determined that I had SLE-Systematic Lupus Erythematosis.  He prescribed Plaquinel and Entrophen. This did help my symptoms at the time.  I saw an eye specialist during this time every six months.  I have been treated with other anti-inflammatories since then, sporadically, but there were many years when I would go unmedicated perhaps because the doctor felt it best at the time.

     In 1993, my lymph node on the left side of my neck was swollen and I was referred to an ENT.  This doctor performed a needle biopsy on the node and determined that I had Sjogren's Syndrome.  He told me to get eye drops for my eyes- 'natural tears' and drink lots of water.  I did this and continued to suffer with great discomfort to my eye ie:crystals forming and it feeling as if there was glass in my eye.  I picked them out and discovered that they were little hard glass crystals.  I was and continue to have great difficulty swallowing.  I started to become very breathless, especially on stairs or upon any exertion, and I felt that it was all due to my being so dry.  

    The years have passed, and I have visited my share of doctor's during that time, but I was always told that my symptoms were 'vague' except for one or two occasions when I was hospitalized for pneumonia and was treated with antibiotics.  In February 1999, I was again hospitalized for pneumonia, and was very ill with a dark, blotchy rash covering both legs front and back and spreading up to my buttocks.  Both legs were extremely swollen especially about the ankles.  My doctor said that I had a streptococcal pneumonia.  At that time, an x-ray was taken and the doctor informed me that my lungs were not in very good shape.  He said there were bumps and things which should not be there and referred me to a lung specialist and also a rheumatologist.  I saw both doctors at the hospital before I was released and I had a CT scan of the lung at the time as well.  I still had pneumonia when I left the hospital for which I continued to take antibiotics.  The rheumatologist at that time said it was his opinion that the bumps and abnormalities in my lungs were not due to my lupus.  He offered no other opinion or suggestions.  I did receive follow-up with the lung specialist as my pneumonia lasted all through the summer.  I was medicated with antibiotics from January until late in the summer.

     In late fall of 1999, I was referred to another rheumatologist, who appears to be very knowledgeable about autoimmune disease. She admitted me to the hospital and ran a series of extensive tests.  I have had many blood tests, X-Rays, CT scans, and the Gallium.  As of yet, all results have not been gathered.  However, the doctors I am consulting with now would like me to have a biopsy of the nodes in the lung (they had found changes since my last CT scan).  I feel that with the illness that I have, the least trauma to the body the better.  I have spoken with my children, and I feel that the prudent thing to do is, of course, to see what the Gallium test reveals and if necessary I would have a Fine Needle Aspiration of a node.  I would like to be placed on a medication recommended by the doctor, that would hopefully improve my Sjogren's and general condition, including my lungs.  

    I have done a great deal of research on this condition, a lot following my recent release from the hospital.  I do know that doctors prefer to perform open lung surgery to remove an entire node for testing to determine as to whether or not there is a lymphoma.  However, I also know that Fine Needle Aspiration has been and is done to test nodes on the lung.  (I am aware that FNA may not give an accurate diagnosis.)  According to a Doctor Lee Nadler, who is a foremost lymphoma specialist in the U.S., a needle biopsy can be done and that along with the Gallium results should give a fairly accurate assessment.  Actually, the gallium can reveal 'hot spots' of lymphoma in the body, sometimes revealing an area of concern before it is even apparent on CT scan.  Should any lymphoma be present, I of course, would take the proper treatment, probably Chemotherapy.  

    I have in my research, obtained case studies performed by Canadian doctors on many different patients suffering from the complications of Sjogren's and in most cases treatment with steroids was found to be successful, even helping the lung problems.  It appears that any nodes do not disappear, but do not worsen either.  I will do everything in my power to co-operate with my knowledgeable doctors in trying to improve my health, however, it is my wish to do that in the least invasive way possible.

     I am 67 years old and worked steady all of my life.  I did not retire until I was past 66.  I have two children and five grandchildren.  I also firmly believe in the wonderful power of prayer!  I now am trying to pace myself, doing the important things first and resting in between.  I had physiotherapy while in the hospital and I will continue to do so on an out-patient basis.  This is to address all of the joint pain and neck pain etc.

 

UPDATE:  10/18/06

Good Morning

      When I originally submitted my story, I was 67 years old-I am now 74!  Since that time, my illness has progressed and there have been some changes that I would like to add to my story.  Oh, and by the way, I am now a grandmother to six, not five!

     My lung specialist and my rheumatologist have both diagnosed me with progressive Sjogren's of the lungs.  I am now on continuous oxygen therapy.  I have been on oxygen for the last three years.  This was a big adjustment, but I feel I have coped quite well.  Some days are certainly better than others.  I continue to go out and about with my daughter and sometimes on my own, however, the cost associated with this is high as I must pay for every cylinder of oxygen I use and this is very expensive.  Trying to survive on a small income with this additional expense has been difficult.

     I am currently recovering from pneumonia (once again) and have to be very careful as even coughing can cause a fracture.  Over the years I have suffered from compressed fractures of the spine due to my Lupus and as those of you who have experienced this know, it is very painful and recovery time is lengthy.  Also, due to my Lupus I suffer with lesions inside my mouth.

     One sister suffering with Lupus, Scleroderma and Sjogren's Syndrome has passed away and the son of another sister (only in his late 30's) has recently been diagnosed with acute Lupus and spent many weeks in the hospital.  My daughter suffers with autoimmune problems as well.  She was hospitalized two years ago.  She suffers with a great deal of joint pain.  The rheumatologist is following her closely.  She has been receiving periodic injections of cortisone in both hips and treatment of her elbow as well.  She frequently has ankle and knee discomfort, sometimes being so stiff she has difficulty moving around.

     I believe that all of us have a reserve of strength within that helps us cope with difficult situations.  I will continue to hold you all in my thoughts and prayers.  

Dorothy

Story Copyright © 1999-2007 Dorothy E.

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