Sarcoidosis in Gulf War Veterans 1990-91

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Gulf War Veterans of 1990-91 Making a Difference

By Denise Nichols STAFF WRITER, Health Editor

Gulf War Veterans another Diagnosed Illness that we at VT have seen previously is Sarcoidosis.  WE need to again step forward and make contact and tract our diagnosed illnesses, just like we have done in the pass with ALS, MS, Brain Cancer, Lung Cancer, Breast Cancer, Prostrate Cancer, Respiratory illnesses, Cardiac Illness, GI illnesses,Leischmanasis,  Thyroid Dysfunctions, ME/CFS, Fibromylagia, Lyme Disease, and Diabetes to name a few.  WE need to move forward and network again with national organizations to combine our strength and become more strong in numbers and find civilians that care!  We need to combine with them and research the connections to exposures.  WE need to access their researchers and they need us too, maybe what is found is common connecting etiological pathways or biomarkers that are different or alike!  If they are different how are they different.

What treatments work on us in these illnesses that are alike and what is different!  What diagnostic tools show the same as civilians with that illness and what is different!  Are do we have disease/diagnosis like with significant differences.  These are the clues that are needed for each and everyone of us.

We need to have the registries for diagnosed illnesses and the statistics of Gulf War Veterans 1990-91 or other exposed groups of veterans to compare and contrast.  We need age of onset, age at diagnosis, location in theater, and unit served with in combat.  WE need the death registry for Gulf War Veterans with the same information!  Researchers and medical professionals need this type of information flow.  The veterans need it as a rallying point to push for presumptive compensation diagnosis/diagnoses with VA ratings.

There are many pages already set up on Facebook.  But again we need to set up seperate websites on the internet and set up mailing lists to service the veterans of the Gulf War 1990-91 with these particular diagnosed illnesses so the expertise grows and that there are subgroups identified.

Despite being ill we can make a difference to our fellow veterans and lead the changes that need to be made!  Each of us have a lot of work to do!

It is up to each individual to stand and do their part in this chain of survivors and there is plenty to do for all.  Thanks to Cally and Darby Nundahl for stepping forward and again taking the pen or the keyboard in their hands to share and speak up!!!  I know of others with this diagnosis, in fact we had a veteran and his wife identified back in 1999 with this illness, the wife has since died.  It is indeed strange to see a husband veteran and wife end up with the same diagnosis.

So I complement the wife that wrote the article, Cally, and for taking that step.  Below is the article as written in their hometown paper.  Like I said write the article send it to your local papers, television stations, radio stations, write an editorial too, then send copies to your elected representatives at local, state, national levels, send to the President and Secretary of the VA, send to each and every veterans organization from local post to districts, to state and national and encourage that they print it in their post newspapers or online, and dont’ forget your other church and social organizations.  It is this way that we all network, not just on Facebook!





Facebook does have a multiple of sarcodosis pages but I saw none focused “Gulf War/Desert Storm/Sarcodosis Group” that is how to title it to make it easier to be found and to get the networking started!  Same thing as we encouraged in Operation Gulf War 1990-91 Unit Reunite Virtually.  For each unit, then you can do same with your city or state or region to network better.  What is important is to reconnect and support each other and become a force again so we can all stand up stronger together.

Remember to circulate the links to articles on your home pages on Facebook or in the notes page on your own Facebook it is call the Force multiplier effect just like we did in the military!

And remember to push information out and provide feedback!

Thursday, December 09, 2010

Cally’s Corner: The VA saved my husband’s life

by Cally Nundahl
Two weeks ago my husband Darby went for his regular checkup at the Veteran’s Administration (VA) Hospital in Fargo.

It turned from regular to urgent when the nurse realized something was wrong. His heart rate was 40 beats per minute, which is very low for an average adult male, unless you are a marathon runner.

He was admitted to urgent care to do tests and see the cardiologist. The doctor informed Darby the sarcoidosis he acquired during the first Gulf War when he was in the Marine Corps years ago, that has been affecting his lungs for the last 10 years, is now affecting his heart.

Sarcoidosis is an uncommon disease in which clumps of abnormal granulomas form in certain organs of the body that cause an array of unwanted symptoms. The disease can affect the lungs, lymph nodes, liver, eyes, skin, heart, brain or almost any organ of the body, but most commonly affects the lungs.

The cardiologist explained to Darby that he has cardiac-sarcoidosis and progressive second-degree heart block. He was told he would need a dual-chamber pacemaker within a week.

Darby called me to tell me the news and I don’t think it really sunk in. It was hard to understand. What 42-year-old man has to have a pacemaker I thought.

Lately he had been feeling a bit more tired than usual. The Sunday evening before he went for his checkup, he asked me to take his pulse after he came in from working outside. It was 39, then 41, then 40. I took it three times because I thought I was mistaken. We thought it was just from his new cholesterol medicine.

The cardiologist told him there were no available surgeons and to go home and do nothing but lie on the couch, relax and wait for an opening.

While driving home from Fargo just getting into Detroit Lakes, Darby blacked out for a second while talking to another vet about what was going on. When he came to, he was still driving straight down the highway.

The lack of oxygen caused by his low heart rate made him lightheaded and caused him to faint. He picked up his phone and his friend told him to call 911. He pulled over and soon the ambulance came and took him to the emergency room.

We spent a quiet Thanksgiving with Darby’s family at his brother Randy’s house. His dad Bud and our daughter CallaBelle read a Thanks­giving prayer at the table before we ate. Then Bud thanked God for the good food and said a special prayer for Darby.

Friday we got the call to come in Monday morning at 9:30.

We arrived at the VA at 9:15, checked in and waited. All Darby could talk about was food and water. He hadn’t eaten since the night before. But being hungry kept his mind off of the operation. The surgery was supposed to start at noon, but two hours later they finally came and took him away.

I went out to the waiting room with my laptop so I could work while waiting, but it was very hard to concentrate.

I felt compassion towards these men sitting there waiting for a doctor to help them with their ailments. I assumed most of them were injured from the different wars they had been in. Most of them were quite a bit older than my husband.

One man had only one leg and sat in his wheelchair staring in the direction of the TV, yet not really watching it. His face was unshaven, with wrinkled skin that looked like leather. I wanted to get up and go say hi, but wasn’t sure if he wanted company and I didn’t know what to say.

Another older man sat across the room from me with his head hung low. He was bald and looked very frail. I couldn’t see his face and didn’t know if he was sleeping or not. He didn’t move until they finally called his name.

I have been to the VA Hospital with Darby several times in the past 15 years and I always feel so sad when I see the problems some veterans are dealing with. Mostly it is elderly gentlemen with various troubles most likely caused by war. I always give a smile and a friendly hello.

While waiting for Darby, I thought back to previous visits. The place is very huge and it seems like a maze. I have been lost a few times after getting a bite to eat or finding a restroom and then trying to locate which floor or room I was just in with my husband.

Quite a few years ago on my way back from the Canteen (cafeteria) in the basement, I went up in the elevator with a nurse and accidentally got off on the fourth floor with her instead of returning to the third floor where they were doing pulmonary tests on Darby. I only passed a few rooms with the doors open and I knew I was on the wrong floor. I saw men lying in their beds, watching me as I walked by, they looked sad and alone. One man was crying out, but I couldn’t understand what he was saying. A nurse noticed I was lost and must have seen my disbelieving face as she rushed to me and asked if I needed help finding my way.

It really saddens me to think about the suffering and sacrifices that the men and women, who fought for our freedom, are going through. Seeing those men suffer has made me respect the men and women in the military even more. I feel I don’t have the right to complain about anything.

My daydreaming was interrupted when finally a doctor came out and told me Darby “came through and the surgery went well.”

A few minutes later a nurse came and took me to his room that they prepared for him. It seemed to take a long time for the surgery, but the half hour I waited for them to bring him into his room seemed like forever. The nurse told me his heart rate went all the way down to 25 before the surgery and she said we sure were lucky he got the pacemaker in time.

They finally rolled him down the hallway in his bed to the room and even though he was a little groggy, he said he felt so much better. His pacemaker is set at 60. I was relieved to see him, but still scared looking at him all wired up.

We called the kids to tell them that Dad was doing fine and is OK. My phone was going non-stop all day and into the next. Brothers and sisters, friends and family all checked in to see how he was doing.

Later the nurse made him get out of bed and she and I took Darby for a walk out in the hallway with his IV stand dragging behind. She kept telling him, that we were not in a race and to slow down. I told her this is slow for him; usually I have to do a fast walk or slight jog to keep up with him. He was a bit lightheaded, but felt pretty good.

We watched TV and visited until my brother Scott picked me up to stay at his house in Moorhead. The weather was a bit nasty out and I didn’t think I could find my way in the dark.

The following morning my sister-in-law Pam dropped me back off at the VA on her way to work. I was thankful for a warm soft bed and just being with family.

So many doctors came in the room the next morning to see Darby and talk with us about the procedure and what to do next. They were all so helpful and very kind. The nurses were so attentive. They took great care of him.

We were told that sarcoidosis is a rare disease and then to have cardiac-sarcoidosis, where it severely affects the heart, is even more uncommon.

Darby said he almost felt like an experiment, but was grateful for all the attention and concern.

Before we left the VA that day, we met with the cardiologist and the pulmonary specialist to discuss future visits and care of the pacemaker. Dr. Gallai and Dr. Seghers were very patient with my questions and they took their time explaining everything the best they could.

There is a list of things to avoid that may interfere with a pacemaker, such as electrical devices or devices with strong magnetic fields, spark plugs, welders, chain saws, etc. He will have to carry a card in his wallet to inform medical technicians and airport screeners. Every three months Darby will have to go in and check the pacemaker to make sure it’s working properly. Usually people with pacemakers need to have the battery changed or a whole new unit, every 8-10 years; but they told us Darby will need to have a new one probably in five years because his is running continuously.

Next week Darby will have to have a brain scan, eye screening and other tests to make sure the disease hasn’t affected other organs. The doctor put him on 40 mg of prednisone daily to try and keep the disease from progressing to other areas.

There are many Gulf War vets diagnosed with sarcoidosis who have the same medical issues as Darby. He belongs to a few forums on the Internet relating to Gulf War illnesses and sarcoidosis.

I hope one day a cure can be found and in the near future the government will recognize this disease and help the vets who suffer from it. With any medical issue, all vets deserve the best. The men and women who fought for our country shouldn’t have to come home and fight for their lives.
About Cally …

Cally and husband Darby Nundahl have six children.
Reader Comments

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Posted: Friday, December 10, 2010
Article comment by: Spirit Baker

Hello Cally, Sounds like quiet a scare with Darby. I am happy he has received a diagnosis but sorry he has this dreadful mystery disease. I am on Facebook with many friends who have started Sarc Orgs and I am starting a letter campaign next month.  I have apx 45 letters from Sarc sufferers now that I am going to be bombarding mailboxes with to a politician in each state. I have Sarc myself and not being treated since I can’t find a qualified dr in MA. Do you have any other ideas or suggestions for me? Thank you for sharing your story. Sincerely, Spirit
http://www.frazeeforum.com/main.asp?SectionID=2&SubSectionID=2&ArticleID=24132

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