The Iron Angel

Subject: Eight years ago this Month
Time: 7:46:17 PM EDT
Author:  starlady11

Eight years ago this month, May 2007, I lost my mother to hereditary hemochromatosis (HH).  It has been a long journey, an emotional ride, taking me from the depths of grieve to the numbness that follows, to emerging again on the other side and ready to live and give to others.  I continue to work with the American Hemochromatosis Society and to counsel patients and their families with hemochromatosis.  I've decided to work on my book, The Iron Angel, this year and to hopefully complete it and publish it in 2008.  With this decision, I have also decided to retrace some of my journeys by keeping a diary and actually "reliving" the experience by visiting those places where it took place.  I know this will be a very emotional and difficult experience for me, but also a cathartic one.  I think that I will need to do it this way in order to finally get the "Iron Angel" written.  It should have been written years ago, but I couldn't quite bring myself that close to the experience again.  It was, simply, just too painful.  Now, I feel that I can withstand the close look at my mother's experience, so many years later, and re-evaluate it and myself, and be able to produce something worthwhile in the process. 

And, so, as we observe the national American Hemochromatosis Society's "Genetic Screening and Awareness Month" during the month of May, I again urge everyone to be tested for hemochromatosis through this self testing lab: www.healthcheckusa.com  It's simple and easy and for those who wish to only test themselves genetically it is totally painless, using a mouth swab to test for the mutations for hemochromatosis.

 

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Subject: Seven years ago today...
Time: 2:31:58 PM EDT
Author:  starlady11

May 13th holds special meaning for the American Hemochromatosis Society, my family and me. It is the day in 1999 that my mother, Josephine Bogie Thomas, died from primary liver cancer due to liver cirrhosis due to hereditary hemochromatosis/HH. She was diagnosed in 1983 with elevated liver enzymes, a percent of saturation of 100% and a serum ferritin of 4,300.  At that time, she had already developed cirrhosis of the liver, yet aggressive treatment (106 total bloodlettings during her lifetime), allowed her to live another 16 quality years.  Although we were grateful to God for the additional 16 years, we knew that she could have lived longer, had hemochromatosis not been a part of her life, especially since longevity ran in her family.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

 

My mother’s first symptom was pain in her hip.  She went to the doctor who couldn’t understand why it hurt, but suggested that it was “age related” since she was 61 years old at the time.  Two years later, during a workup for ovarian cancer, her liver was shown to be filled with iron during a CT scan and a radiologist first suggested that she had “hemochromatosis” in his written report.  Despite the comments by the radiologist in his radiology report, not one of my mother’s doctors ever mentioned the disease to her or anyone in our family.  Had I not obtained and read my mother’s medical records and read them carefully, I wouldn’t have even seen the word, “hemochromatosis”.  However, when I did see it, I wrongly assumed that it was just one of those big, scary sounding medical terms that are actually fairly harmless.  Why else would none of the doctors have mentioned it?  The answer to that question is probably because the doctors felt that my mother wasn’t going to survive the ovarian cancer, so why bother worrying about the hemochromatosis?  The answer to that question is that hemochromatosis is a hereditary disease, and even if my mother was not going to survive the ovarian cancer, her relatives could have benefited from knowing that she had hemochromatosis and gotten tested for it.  Instead, we learned about hemochromatosis many months later after my father recognized the word while reading an article in the newspaper.  It was at this point, that our family began a more than 20 year journey for knowledge about hereditary hemochromatosis.

 

After two surgeries and eight months of chemotherapy in 1983-84 for the ovarian cancer, and contrary to what the doctors had predicted, my mother survived the ovarian cancer.  The doctors also told us that her faith in God, the support of her family, and our search for the latest information on ovarian cancer, and the more than dozen “second opinions” were all key to her survival.

 

Once her battle with ovarian cancer was completed, she began her aggressive treatment phase for hemochromatosis.  It would take over a year to complete.  After that, my mother was treated regularly on her maintenance program and was faithful about regular testing and follow up.  She overcame two huge medical hurdles, the ovarian cancer and then advanced stage hereditary hemochromatosis.  Her strength and courage during those traumatic times will always be remembered by those who experienced it with her. 

 

After 16 quality years, we thought that hemochromatosis was something that had been conquered.  It was in her past, and was under control.  However, in early 1998, we noticed her liver enzymes starting to creep up.  I brought this to the doctor’s attention immediately, but was told it was nothing to worry about.  Naturally, though, I did worry.  Unfortunately, after again seeking many opinions and having many screening tests done, the hemochromatosis nightmare unfolded.  She apparently had primary liver cancer due to cirrhosis due to hemochromatosis and it was in an advanced stage.  We obtained opinions from top liver experts all over the country, and even <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />Japan, but the verdict was basically the same.  We were stunned, but remembering the courageous fight against ovarian cancer, and given hope by a couple of leading experts that we might be able to extend her life significantly, we decided to “fight” once again and “go for the brass ring” as my mother had put it so long ago in her battle with ovarian cancer.

 

In July 1998, we closed up our home in Delray Beach, Florida, and my mother, father, Joe Thomas, boyfriend, David Snyder, and I drove to Pittsburgh, Pennsylvania.  There she would see some specialists and to get some special treatments to try to save her life, or at least significantly extend her life.  But, further evaluation showed that the primary liver cancer caused by the hereditary hemochromatosis was indeed advanced and inoperable.

 

Despite nearly a year of treatments (embolizations), medications, and other procedures, the liver cancer progressed mercilessly.  She was put in this condition by a treatable and preventable disease.  She was in and out of the hospital in early 1999, and spent the entire month of March 1999 in the hospital.  I stayed on a cot by her bedside that entire month, giving her the loyalty that she had always shown me during her lifetime.  The anger and anguish that I felt was truly profound.  I was helpless to do anything as my father and I cared for her during those final months.

 

After several more months of on and off hospitalizations, she finally went home to die at the apartment we had rented in the North Hills of Pittsburgh.  My father, David, and I held our vigil around the clock during those days before her death.  I took a tape recorder to her bedside and asked her to record a message.  She knew exactly what I meant.  Although she had trouble speaking, she clearly left an important message.  She said she hoped that everyone would get tested for hemochromatosis so that they would not have to go through what she was going through at that moment.  It was a typical unselfish statement by my mother.

 

On May 13th, a beautiful spring afternoon, with the leaves budding on the trees and a light misty rain falling, I watched my mother slip away into the next world.  The window to my parents’ room opened out onto a wondrous view of the mountains, and a fog rose from the ground and floated like a ghost down the mountainside.  It was an amazing sight I’ll never forget as I held my mother’s limp hand in mine.  I held it so tightly, that it felt as if there were a pulse, but it was only my own pulse that I felt, not hers.  All of her suffering was over, but the renewed fight to increase awareness about hemochromatosis was just beginning for me.

 

Now, seven years later, we still hear from patients almost on a daily basis who are seriously ill or dying from this disease or family members informing us of a death in their family from hemochromatosis.  It is inexcusable.  Often it seems that very little has changed in the way of public awareness or physician education in the last seven years, but I know that has improved during this time; it's just that there are still so many people needlessly dying, as my mother did, of this disease. 

 

On Saturday, May 13th, 2006, several newspapers around the country will carry memorial notices about my mother, Josephine Bogie Thomas. These notices of remembrance urge the public to contact AHS for more information. If you subscribe to or read any of these newspapers (or visit them online), I would appreciate your cutting out the notice, and showing it to your family members, friends, and/or mailing a copy to me.  The newspapers are:

 

Mt. Sterling Advocate (Mt. Sterling, Kentucky) (This is the town she was born).  The ad appeared will appear on May 11th, 2006 (this is a weekly newspaper).

 

Louisville Courier Journal (Louisville, Kentucky) (this is where she lived during her teens and where she met and married my dad).

 

Boca Raton News (Boca Raton, Florida) (To appear in May 12th edition)  She lived in Delray Beach for more than three decades and these newspapers, Palm Beach Post, Boca

Raton News, and Palm Beach Daily News cover this area.

 

Palm Beach Post (West Palm Beach, Florida)

 

Palm Beach Daily News (Palm Beach, Florida)

 

Orlando Sentinel (Orlando, Florida) (this is where the American Hemochromatosis Society headquarters are located now)

 

Pittsburgh Tribune Review (Pittsburgh, Pennsylvania) (She went to Pittsburgh to get treatment for her primary liver cancer and this is where she died).

 

Pittsburgh Post Gazette (Pittsburgh, Pennsylvania)

 

To see our memorial notice on our web site, please go to:  www.americanhs.org

 

I always tell everyone, don't thank me for the work I do with the American Hemochromatosis Society, thank my mother, because she was the one who was sogiving, caring, and helpful to everyone.  She was the one who set an example for me. She was the one who always tried to find a way to help people with their problems, whatever those problems might have been.  She was a person of hope, of vision, and of courage.  And, she was the kind of person who inspired those qualities in others.

 

Yes, she was my inspiration for founding the American Hemochromatosis Society (AHS) in 1998.  And, she has been the guiding light for my work every day since then. 

 

 

 

Sandra Thomas, President/Founder, American Hemochromatosis Society

Email: mail@americanhs.org

Web site: www.americanhs.org

Office: 407-829-4488

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Subject: Nearly a year later....
Time: 9:18:28 PM EST
Author:  starlady11

It's been nearly a year since posting this journal about hemochromatosis and my mother's battle with it.  During the past year I have continued to work to help people through the American Hemochromatosis Society.  I am now working on another "journal" web site that will describe "Neonatal Hemochromatosis/NH", a condition that affects newborns and gives them massive iron overload.  It is thrilling to be able to get the word out about hemochromatosis and related conditions, and help people cope with these situations.  For NH, there have been new and exciting advancements recently, and hope for those who are affected by it.

Once again, I urge everyone to be tested for hemochromatosis.  You should be afraid NOT to be tested.  The simple blood tests for hemochromatosis are: serum iron, TIBC (total iron binding capacity), percent of saturation, and serum ferritin.  These results, combined with the genetic DNA test results, will confirm, or rule out, hereditary hemochromatosis/HH.  It's so simple, I just can't understand why more people aren't doing this on their own. 

 

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Subject: Carrying on family traditions
Time: 10:39:19 PM EST
Author:  starlady11


It is hard to carry on family traditions when someone significant to that family group has passed on.  It is a bitter sweet situation, causing both pleasure, and pain.  But, we have tried to carry on family traditions in our family, and celebrate holidays as we have in the past.  We particularly had a good time this year with Halloween.  We had many children come by the house to get their candy, and this year we dressed my dad up like I was, as the character from that movie, "Scream".  It was really funny, we had a lot of laughs.  Even though my father spends a lot of time in a wheelchair, (he's 89 and doesn't walk too well anymore) that didn't stop him from enjoying himself or having a bit of fun "scaring" the neighborhood kids.  We turned down the lights to the entrance hall in our house and had a table behind us with spooky  candles on it.  My father held the jack o'lantern pot of candy and I opened the door and invited the children inside to get their candy, if they dared...then I would ask my father to "scream" for them, and he would let out a loud scream. It was a big hit with everyone.  Two young boys were terrified and went screaming and running out the open front door, leaping down the steps outside and down the sidewalk.  In a way, I felt bad that they had been scared, but after all, that was what Halloween was all about, right?  No doubt, next year, we'll have a reputation for being one of the "scarier" houses on the block.  I always try to take photos of our special occasions, it's a nice way to remember the good times that we have had.  I'm lucky that my mother's hobby was photography and we have many photos of our family and special holidays and just ordinary days.  That, too, is a hobby that will become a tradition for me. 

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Subject: When ties are broken...only visions remain
Time: 8:26:35 PM EST
Author:  starlady11
Mood:  Sad

It has now been four years since my father, Joe, lost my mother, who was his wife of 59 years.  He is my last tie to my family as I know it.  My mother, father, and I were always the "Three Musketeers", and now, it's just my dad and me left of our "family".  Although there are other family members, my father and I are very close and are the only ones who live in Florida.  He is the last family thread that attaches me to my mother and the many years of "history" that we all had together.  He was so good to her during her final illness and visited her in the hospital every day, even if it were cold and snowing.  My boyfriend and my dad would drive to the downtown Pittsburgh hospital and stay most of the afternoon.  My dad would hold my mother's hand and sit by her bedside and watch her sleep or quietly talk with her.  I'll always remember that vision. 

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Subject: The last tie...
Time: 8:24:02 PM EST
Author:  starlady11
Mood:  Happy

We thanked the woman and rushed him out the door.  I went back inside to thank the dark haired lady again for her kindness, but she had evidently stepped out for the moment and a long line of people glared at me as I edged toward her desk trying to find her.  So, I simply left, hoping that she realized how much her sensitivity to our situation had meant to us and how heartfelt my quick thank you's really were earlier on.

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Subject: Turning in his driver's license...
Time: 8:22:06 PM EST
Author:  starlady11

When we arrived, the parking lot was nearly filled and the waiting area was jammed packed.  There were only a few empty chairs.  I waited in line for my turn with the woman behind the desk and the sign that said, "stop here first".  I explained our situation to this dark haired lady, and she simply said, "where is he?"  I told her he was still in the car and was in a wheelchair.  She told me to "bring him in".  I asked her about how long we might have to wait.  She looked at me and said, "bring him in".  I hoped against hope that her repeat command meant that she might give us an opportunity to get him in and out quickly, since waiting in the car or in this waiting area would be difficult for him.  I ran back out to the van and told Warren and Daniel to get him inside as fast as possible.  As I had hoped, the lady told me to go directly to the area for the photos.  Warren, who is tall, was asked to bring the backdrop that is hung behind the person as they stand for their photo, to a lower level.  He removed it from the chains that were holding it up and held it up behind my father's head.  "OK, smile!", another woman commanded.  My father looked up as far as he could, but that's not very far since he has spinal stenosis and can't tilt his back backwards at all.  In fact, he head is somewhat tilted downwards at all times.  Combined with the fact that the camera was positioned in a high position on a counter for most of the people who are standing for their photos, the photo turned out with my father's head appearing to look down. Because the camera was pointed down at him, and he was looking down anyway, but that was ok, as far as they were concerned, it was good enough and showed enough of his face to serve as an official "photo ID".   How very long ago it had been that my father got his official driver's license, and now...he had officially turned it in.  Another milestone in someone's life.

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Subject: My father...the last tie...
Time: 8:19:20 PM EST
Author:  starlady11

I took my father to the driver's license office today to turn in his driver's license and to get a photo ID.  His license was supposed to be renewed over a year ago, but since he hasn't driven since my mother's illness and we were in Pittsburgh, four years ago, we never bothered getting it renewed.  But, today, I decided to get him a photo ID, he should have one, he is still a person, an adult, and deserves to have some form of valid ID that is current and so we all headed off in our van that is especially equipped to handle him and his wheelchair.  At 89 years old, each trip is an "adventure" in the van.  We have two people who help out, Warren every day and sometimes others.  Today is was Daniel.  Although several people told me that the office would be filled and I'd never get him processed without an appointment, I pressed on.  Yes, I called first and made an appointment--for next week, but I really had my heart set on today, so I went there anyway with a positive attitude and a prayer to God that we wouldn't have to wait too long. 

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Subject: more patients...
Time: 8:09:23 PM EST
Author:  starlady11


I heard from more people with hemochromatosis today, or at least who thought they had hemochromatosis...some were family members who were worried about their loved ones, they were confused, angry, scared, a combination of many emotions.  One woman was from California, another woman was from Arizona. I tried to explain what might be going on, which is sometimes difficult when the callers do not have the exact numerical results for their tests...still, I try to offer some kind of solace and education to these people so that they can end the conversation with some feeling of empowerment.  Most people seem to want to know about genetic testing, others want to find a local doctor, but I tell them that that is not necessary, they can confirm, or rule out, hemochromatosis by testing themselves through a lab called, HealthCheckUSA.  (www.healthcheckusa.com)   most people don't have any idea what to do when faced with a "free floating" opportunity to order their own medical tests.  often their comment is, "but i don't know what the medical terms mean".  These are intelligent people who are able to do many things in life, but they are intimidated by the medical jargon.  But I reassure them and tell them that they can easily learn the jargon, the words that seem so strange now, and they can remove that "mystified" aura attached to medical terms and medical knowledge.  The Internet has seen to that. 

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Subject: Getting the word out...
Time: 3:40:32 PM EST
Author:  starlady11
Mood:  Happy

 Little did I know the path that this disease would take my family and me.  It now is as much a part of me as breathing, every day I have something to do that concerns hemochromatosis, whether it is answering email from patients, taking calls from family members, or talking to people I meet during my daily activities and letting them know about the disease.  For a while, I was so consumed with this type of activity that I did little else.  I had to make a concentrated effort to do other things, to allow myself some "personal time" to think about something else.  Because my mother died from hemochromatosis, I felt that working more intensively to save others, might relieve some of the guilt that I felt for being unable to save her.  Although reassured many times by many people, including many doctors, I still have held myself responsible for not being somehow able to save her, through medical breakthroughs, through prayer, through shear will power.  But, I failed.  And, so I continue on, trying to successfully help others, to save them, if they will let me.

It all started back in 1983, when my mother started her own medical journey, by herself, without telling my father or me about her "discovery".  It wasn't long though, until she confessed to us what was going on with her....that was the beginning of our "crash course" in medicine, hospitals, and lab tests.  What we would learn during this period in our lives would serve us many times over in the future, not only for our immediate family members, but also for others we would help in the future, people we never dreamed we would encounter or help.  Looking back, it is indeed surreal how all of this has taken place and evolved into what we do today.

 

 

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