Urgent Prayer and Help Request for MistyCA's Hospitalized Vietnam Veteran Brother

MistyCA

[Jim Robinson]

Here is the request from MistyCA:

I need help. My brother is in the hospital in Santa Barbara. He is dying. He has 10% heart capacity left after having (since Vietnam) three surgeries to replace infected valves and a resection to remove diseased tissue. The most recent surgery was done in Palo Alto by Dr. Burdin two years ago. He has chronic infections and needed a transplant but the VA denied the transplant.

Now he is sitting in the hospital in Santa Barbara waiting for the VA to get off their butt and get him in a VA facitility so he can get the care he needs. Here is his story in his own words.... dang...I can't remember how to make a link.. http://members.cox.net/jkk/vet.htm

This vet needs some freeper noise and help. Is there anything anyone can do here to get someone to move the VA to help him? Please. :( Can someone help me do a thread for my brother?

[MistyCA]

Oh, Tonk. I am so sorry to hear about the loss of your friend's dad. I have a friend who has suffered for years from the effects of agent orange and he has yet to be recognized by the VA for his condition. He is nearly deaf because of the damage to his ears in Vietnam, and that has never been compensated either. We have tried to help him over the years to get the assistance he should have, but he just can't follow through. One of his problems is that he has to work in order to sustain his meager lifestyle and can't drive the 100 mile trip to the VA or DAV office that can assist him in receiving his benefits. As a consequence, he receives nothing.

This is the big problem I see in the system. Many of the vets who need and should receive some benefit from their service are in no condition to fight for those benefits. As a result, many receive nothing. The VA might complain about all the vets they are forced to care for, but you never hear about all the vets that have never made a well-deserved claim because they just don't know how to do it. Or because they don't have the stamina to go through the mountain of redtape required to take a claim to completion.

Thanks for your continued prayers. My brother, according to my sister, was smiling from ear to ear today as he lay in his bed at Wadsworth VA hospital! She had to put her ear to his mouth to hear what he was saying, but he was smiling and happy. Thank you, God. :)

[MistyCA]

My brother was not told for years that he had Hep-C. It was in his file, but no one ever told him. This was during a time when he was not receiving disability pay and worked fulltime. He was always very tired and had become run down several times and infection attacked his valve and required yet another surgery to replace it again. He was shocked when they finally told him. Amazingly they told him something to the effect, "Well, it seems the hep-c is no longer showing up." WHAT HEP-C??? He should have been given disability when it was discovered, imo. Instead, they just didn't mention it.

[dsc]

"Amazingly they told him something to the effect, "Well, it seems the hep-c is no longer showing up." WHAT HEP-C???"

I don't think that Hep C just goes away. If he had it, then that was probably a false negative. Has he been retested?

[dsc]

"They gave me a rating, but we are fighting it. But it's a beginning. 68 percent of all Vietnam Vets are infected with the Hepatitis C Virus."

Have you done a course of the combo? What kind of treatment are you getting?

I was living in Japan when an article on FR alerted me to the risk factors. Military, SE Asia, exposure to blood...sure enough, that was the "mystery ailment" that the doctors couldn't find, that had caused my health to deteriorate for over a decade.

I decided I just didn't have the time and energy to wait for the VA to get off the dime, so I sought out a doctor in the States and got treatment at my own expense. God in His mercy granted that I was one of the minority who cleared the virus with interferon and ribavirin.

So far, I've gotten nothing from the VA. Since I went ahead with treatment at my own expense and cleared the virus, I doubt that I'm legally entitled to anything, although the disease had a significant impact on my life and I'm still dealing with the economic and physical consequences.

I'm not a doctor, but if there are any questions that anyone has, I'd be glad to try and answer them or give you my doctor's e-mail.

[MistyCA]

I think you are right...it does not just go away. I don't have the answer for that because my brother told me that it came up in discussion because he appeared he didn't have it. I have heard of people who go into remission after treatment, but he wasn't aware of having been treated for it. If you read my brother's account of what happened, at that point he believed he still had it. I honestly haven't questioned him about it because at the time it was mentioned to me it was best that I just listen. If he ever gets out of this situation and improves his health, I will ask him.

[dsc]

Don't mean to be meddling, but it might be best to know. There are medicines that people with impaired livers shouldn't use.

[MistyCA]

You are absolutely right. I will ask my sister to pursue that with the doctors today since she is there and I am not. Thanks. I have just learned over the years not to get too far into certain conversations with him because it is upsetting and he has been so weak. That was one of them.

[sheikdetailfeather]

Prayer sent up. My brother is a Vietnam Vet also and he has informed me of the outrageous ordeals he has had trying to get medical help.

[Mamzelle]

prayer bump

[Mamzelle]

I don't know whether this can comfort, or not... but a transplant requires the suppression of the immune system through medication. Hep C can remit, but is probably always present. Suppression of the immune system can cause, under some circumstances, an overwhelming flareup of Hep c. A sufferer of Hep C may not be a good candidate for a transplant--or it could be one consideration among many other considerations.

The reason I point this out--it might be that this is a concern of the staff who are doing the treatment. If so, they should have communicated it to you. It could be that they are doing what they can under the circumstances.

Many prayers from Mamzelle.

[Vets_Husband_and_Wife]

URGENT!!!!!

Misty.. I really need you to read this message!!! If your brother has HepC (liver disease) and has a heart transplant and they don't acknowledge his liver disease, he could be in real trouble. I hate to bring this up and scare you.. but it is imperative that his liver disease is considered. The reason I'm bringing this up, is it is NOT automatically checked for. Liver functions elevate the same tests results that heart disease does. So often times it is missed. Test results like "ALT's, and AST's, GGT's".

After a transplant of ANY type, a patient is put on HIGH doses of Immunosuppressant drugs AND STEROIDS. Steroids are counter-indicated in HepC. Now, when a patient has a Liver transplant they ARE given large doses of steroids, but they have a new liver. But they are given a different type of immunosuppressent meds and are followed closely. It is extremely complicated. But they really need to do a PCR from a reliable lab to make sure your brother was one of the lucky ones who did indeed clear the virus (If that is what you were saying in your post). Though if he had a valve replacement due to inflamation from the HepC, it sounds like he is someone like me who is suffering the many secondary diseases that HepC inflicts on its victims.

So in otherwords, if he has active HepC, and they don't realize it and do a heart transplant, put him on massive doses of steriods, he could be at risk of liver failure. I'm not a doctor, but even I know this from being a liver patient for so long.

Here is some info on PCR so you can request some testing. It is DNA testing. Trust me, this test has been around for a VERY long time and when done by experienced labs it is VERY reliable. It is so important that your brother be tested.

God Bless!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
PCR Amplification

PCR amplification can detect low levels of HCV RNA in serum. Testing for HCV RNA is a reliable way of demonstrating that hepatitis C infection is present and is the most specific test for infection.

Testing for HCV RNA by PCR is particularly useful when aminotransferases are normal or only slightly elevated, when anti-HCV is not present, or when several causes of liver disease are possible. This method also helps diagnose hepatitis C in people who are immunosuppressed, have recently had an organ transplant, or have chronic renal failure. When ordering HCV RNA testing by PCR, the physician should use a high-quality laboratory willing to document standardization of the test.

[Vets_Husband_and_Wife]

Congratulations!!! I'm so happy for you!! It is such good news when one of our warriors beats the dragon!! :o)

Unfortunately, I'm one of the lucky 1% that gets WORST on Interferon. We've even tried it a second time when the Peglated Interferons came out to see if that would make a difference, but NOOOOOOO. So both Mayo Clinic in Rochester and Dr. Gish and my Liver Doctor here have taboo'd me ever giving it another try.

I got it from working in the medical field in the service, or from a service injury that resulted in a blood transfusion. I'm a 1a genotype,.. my last viral load was 42 million.

I have polyneuropathies, severe migraines, Vertigo and have to use a cane to walk at times. I have fallen a lot and broken a few bones. I've lost the ability to drive most of the time. We think I was infected between 1973-76 sometime. The first time we found something going on in my bloodwork was around 1980. I started to have bowel disease in the mid 80's, and some inflammatory issues, then in 1990 extreme fatigue. Resulting in some near misses in the car.. and sleeping all day. I had to quit work. Things went down hill from there. Liver function sky high.. mulitiple bowel surgeries, and this last Dec. and January a diagnosis of Crohns disease. The brain inflammations and the Crohns are all attributed to the HepC. All my physicians said they are secondary to the inflammation process of the HepC.

I'm not saying this to scare anyone, but if people can be treated and are successful, it is so important to do so. But gosh, if they can't be, this disease is just devastating.

We need a cure. We need the same kind of attention that the HIV/AIDS community gets. A lot of our Vets have this illness. We weren't drug users. I'm not saying a person who did drugs in their youth, DESERVES to suffer, I'm just saying I got this serving my country, and I'm just asking that my country pay for the multiple meds I'm on. Help me defray my loss of income.

This illness is ABSOLUTE AGONY. I'm in PHYSICAL pain every day. I do deal with it, and I do have a wonderful life. I have an absolute wonderful marraige, and family. The best friends in the world. I also have the best doctors in the world.

Right now we are trying anti seisure meds, which at first made me a zombie, but seem to be stopping the daily migraines (THANK THE LORD!!!), and Parkinsons medicines for the leg thing that happens at night. I'm finally getting some sleep thanks to a sleep aide, and I'm one of the lucky ones that the first Crohns meds they put me on helped. It even looks like the Crohns meds is lowering some of the inflammation in my liver. YIPEEEEE :o)

I'm not the kind that throws a pity party daily.. though I do indulge about twice a year. I serve a lot CHEESE with my WHINE though :o)

I worked in an area of medicine were they used bio feedback, and figured that it was really nothing more than what Jesus was trying to teach us from the Bible, but He did it so much better. So I go to the Lord and give all this to Him. I don't feel guilty if I feel weak at times.

I'm praying a lot for the Protease inhibitors. Perhaps they will be my ticket.

But boy.. I sure hope something starts to happen for all the vets who are disabled and suffering from this illness. Because of the symptoms from those of us who are symptomatic, it makes it really hard to FIGHT for your benefits. Thankfully, I went right to a Vets advocacy group who are doing it for me. I must say... the VA has been moving really quickly in my case. I have a feeling my medical record showed some elevated blood work while on active duty.

Plus I had witnesses who saw my fingers that had become infected from the pokes I got in my field. That didn't hurt either.

Anyway.. I'm so thankful you cleared the virus. Lets pray for a cure for everyone someday!!!

God Bless!! Mary Ann

[dsc]

Mary Ann,

I just didn't know what to say. I bowed my head to pray, but the prayer that came to my lips seemed too perfunctory.

So I wrote this one. I'm sorry if it seems "over the top." It's for you and for everyone who battles the dragon.

Dear Lord Jesus Christ,

Satan was so strong in the 20th century. Faith in You, Your Father, and the Holy Ghost reached its lowest ebb since the days of the Romans. We, the exiled children of Eve, wounded your loving Heart with atrocities on a scale not previously recorded in history.

One of Satan’s greatest successes during the 20th century was the ascendancy of communism. This false doctrine, under its various guises, enslaved entire nations and murdered tens of millions, including the innocent children so beloved of You.

Perhaps through Your divine design, perhaps only through historical accident, the United States was the bulwark against the spread of this atheist poison to every corner of the Earth. While our soldiers fought and bled and died in the mud of foreign lands, the nation itself served as a “Shining City on a Hill” that gave hope to enslaved millions for a future in which they would be free of communism’s Satanic bondage.

When the Soviets and the Chinese were working to bring Indochina under communism, the United States opposed that great evil with the blood of its soldiers. Millions of Americans left their homes and families far behind, to face hardships and terrors most of us fortunate Americans will never know. Over 58,000 of them never returned. I pray that their souls are with You now. I know that not all of them were believers; and not all of them fully understood that the fight against communism was an extension of Heaven’s battles, but they all sacrificed to fight the Dark One and to keep Your light burning.

The sacrifices on the battlefield were perhaps the most visible and were certainly among the most noble. The sacrifices of those who remained at home in an agony of worry, and all too often grief, must surely wring Your heart. But it turns out that those sacrifices are not behind us. The effects of exposure to Agent Orange continue to cause much suffering. Now, even later, tens of thousands of those who selflessly sacrificed for God and country must battle the Dragon—Hepatitis C—which they contracted in Your service and the service of their country.

How Satan must have laughed to see that virus spreading from soldier to soldier and from corpsman to doctor to nurse as they struggled to save the lives of the wounded. How amusing he must have thought it to see a life-giving transfusion infecting a man with this virus, yet another consequence of Original Sin. How deliciously ironic he must have found it when a nurse, groggy with fatigue, infected herself with the very needle that just saved a wounded boy’s life.

Dear Lord, we throw ourselves at your feet and beg you not to give Satan this victory. Do not abandon these last casualties of the great battle of the last century. Move within the hearts of those in positions of authority that they may understand the tragedy before them, and act in accordance with Thy divine will. Guide medical researchers to a cure for this foul revenge of Satan on those who opposed him. Have mercy on the souls of those whom this stealthy killer—this insidias diaboli—has already taken from us, and comfort those who are still racked by it. Ease their pain and lift from them their fear.

In the name of Your five sacred wounds, and Your loving hands that washed the feet of the Apostles, we beg you for a cure. Look not upon our sins, but on the sacrifices these men and women made to oppose communism. We do not pray for justice, for in the course of justice none of us should see salvation. We pray rather for mercy, and that the witness of Your infinite mercy should lead us to perform deeds of mercy for Your sake.

Glory to the Father, and the Son, and the Holy Ghost, as it was in the beginning, and is now, and will be for all eternity.

Amen

[MistyCA]

Thank you so much. I really appreciate this information and will discuss the situation with my sister this evening. It has never been confirmed to us that hep-c was ever really present, and as pointed out before, it is suspicious that it would just disappear. It is very possible that the tests that initially showed it were false positive. This is definitely something that needs to be determined and I absolutely appreciate your pointing out the reasons why it is critical to know. Thank you. I will follow it up and let you know what I find out. Since it was mentioned in early reports but apparently not found now, it is most likely not an issue. I believe, with all the tests that have been done recently, that if it were an issue it would have been brought up again.

[MistyCA]

I am so sorry about your medical difficulties. It is so unfair that sometimes the burdens of life fall so heavily upon the shoulders of some. I will send lots of prayers your way. Lots of them.

[Vets_Husband_and_Wife]

I'm honestly moved to tears by your prayer. I can't even begin to tell you how deeply your words touched my heart. From your lips to His ears.

Thank you so much. I will never forget your kindness, never.

[Vets_Husband_and_Wife]

Thank you for your kind words friend. But really, don't worry about me, I'm fine. It is you I'm worried about, you and your brother. You have a very full plate right now.

I will just feel a lot better knowing they have RECENTLY tested or will test your brother with DNA/PCR for HepC.

Past testing was not as reliable as todays tests are. Since he is a fellow Vietnam vet, and since the infection rate is at 68 percent for Vietnam Vets, and since all Vietnam Vets who could be contacted were notified by the VA to be tested for HepC, I would HOPE he has been RECENTLY tested. Especially in light of his medical condition.

He is in my prayers constantly. I know you're going to be really busy, but when you find out about this issue, can you let me know? It really could be of critical importance. Believe it or not, HepC has been missed in other serious cases. It seems impossible in todays times, but it isn't something that is automatically looked for. Like I said, the same functions that are elevated in heart disease are elevated in liver disease. So, many many times heart disease is missed in liver patients, and vice versa. I just don't want to see that happen in your brothers situation. The fact that HepC was ever mentioned would raise alarm bells to me. It could have been a false postive in the beginning, but if they did a second PCR long ago it could have been a false negative, after having had a TRUE positive the first time. Considering he is a Vietnam Vet and considering his complicated medical problems, I'd insist they do a PCR if they haven't already done a recent one. Keep me posted friend. (((((Misty)))))

Lots of prayer coming your family's way.

God Bless, Mary Ann

[MistyCA]

Hugs to you too, MaryAnn. You and so many others here have provided so much information and support. I knew I could count on FR for the kind of help we needed in this battle. The prayers, the thoughts, the sharing...it all goes to show the best we have to offer each other. Thanks to JR for providing this forum. Over and over it has proven to be a the best.

My brother spent a few months in Palo Alto at the VA hospital about two years ago. He is currently at Wadsworth undergoing testing. They specialize in infectious disease at Wadsworth and I am confident this isn't going to get past them as they evaluate him for the transplant again. But I will definitely make sure the issue is confronted and appreciate the information you provided.

thanks, friend. :)

[Vets_Husband_and_Wife]

But I will definitely make sure the issue is confronted and appreciate the information you provided.

Having worked in medicine for over 25 years, "overlooked" might be a better word ;o)

Good luck friend. Keep me posted. Remember, people who work in medicine are only human, we make mistakes too.

TONS of PRAYERS will be said until good news is heard, K?

Goodnight

[deadhead]

I have been away on vacation and am just now catching up with news on Free Republic. My heartfelt prayers for your brother. All our veterans deserve the best medical care possible. Remembering the many times you have written about your brother, I know how much you care about him. Take Care

Colleen