IamA Navy Veteran that almost died waiting for VA. AMA!

How can normal civilians better support our vets? I always try to thank those who served (and thank you to you, too), but I feel like we as a society do less to support our vets than generations like those who went through WW2.

The VA can always make use of civilian volunteers. I would direct you to your local hospital, if you're interested in volunteering.

The VA, as a whole, is in need of pretty massive reform, as I see it. There is so much red tape and adherence to a broken system that it inhibits logical decision making. It's a complex problem and I've only seen a small part of it.

I personally think the VA ought to be mostly abolished with the exception of certain mental health services that need a specific sort of support group best found amongst veterans.

The US has a perfectly workable medicaid system that would get veterans the medical care they need a hell of a lot more efficiently than the VA mess.

That being said, glad you are doing ok.

Thanks, I appreciate it. That doesn't sound like a bad idea.

The Vietnam War demonstrated a uniquely successful program for treating veterans with PTSD. It created small centers staffed with veterans who conducted group therapy in which other veterans could speak of their experiences in Vietnam in the presence of their fellow vets.

From what I recall, it was considered fairly successful. However, due to Nixon being an absolute bastard, the funding was pulled. Apparently the VVAW, got Nixon's back up when they lined up outside the whitehouse and threw their war medals over the fence.

Politics has always driven how Veterans are treated, yet for the life of me, I can't understand why they'd opt to not utilize a fairly successful Medicaid insurance program or even Federal employee insurance.

Both gets a veteran quality medical benefits and none of the drama of a VA hospital.

That makes perfect sense to me. I had private doctors first, bc I was diagnosed before I enrolled in VA healthcare. If they would have just said, "Oh, you got sick within 5 years of discharge, so we're on the hook for that." And then paid my bills, my ordeal could have been much more quickly resolved with far less pain, risk and suffering on my part.

In your opinion, how should the American public react to the current situation and how should the government respond?

The American public needs to react to this problem by being informed. I can only speak for myself, when I say how the government should respond. The thing is, this is a huge issue, that isn't isolated to the VA. It has to do with how our government works and spends money, in general. I can only say that, in my experience, the VA was obviously inferior to private healthcare. For example, the VA insisted that I go through a "pre-transplant checklist". When my health started to deteriorate, I wasn't able to get the right dental appointments in time. I just kept getting more sick, needing more transfusions, as the medications slowly killed me, until I had a blast crisis, because I was waiting for dental appointments. It just doesn't make sense, but they hold these systems over logic.

For the record, all transplant centers have that checklist. I was a coordinator at the Children's Hospital in Philadelphia, currently ranked #1. We made our kids get the dental checks too, except we had the money to have coordinators like me who handled all of that stuff. I distinctly remember having a patient who was from over seas, and had no insurance.... I called every free clinic in a 50 mile radius and pulled the strings needed to get him his appointment. No money involved, just stressing how critical this was and using my healthcare knowledge to get him what he needed.

Thank you for helping all the people that you have and for doing what needs to be done. It's also really good to hear a provider's perspective. There are so many questions I can't answer.

I can expand by saying that I think the VA is in-equipped to handle the number of patients they see. They need more space, more infrastructure, more employees. But they are also poorly managed and there doesn't seem to be a lot of public oversight.

Most significantly, it's a non-competitive environment. There's no incentive for them to have a high survival rate. They're going to have the same number of veterans needing care, regardless of how many don't survive.

Edit: Letters

The average government employee is working way out of their competence level. Once yo're in the system that's it. You get promoted eventually and there is NO incentive to do s good joib or try to save money. In fact, if you save money. The only reward is a reduced budget the next year. The end ofthe fiscal year is a frenzy of government spending just to derplete budgets

Honestly, I can't blame my situation in incompetence. Don't get me wrong, there are a couple people in particular that definitely didn't do me any favors, but after beating their heads against BS bureaucracy for years, I can see how employees feel neutered by the system. Also, the VA competes to hire employees with the private sector. My VA oncologists worked at a private facility, and we're only contracted to the VA for an afternoon or two each week. The problem is that their hands are tied. It's bc my VA oncologist pulled strings for me that I was able to get my transplant done at a leading private facility. He saw that I would die unless I was freed from the VA transplant process.

George Bernard Shaw said, "Patriotism is, fundamentally, a conviction that a particular country is the best in the world because you were born in it". Has this mess rattled your sense of national pride? You've been through the ringer.

Absolutely, but my VA experience pales in comparison to the disillusionment I experienced when I saw how the rest of the world lives and perceives us.

I agree with that quote, whole heartedly. I'm convinced that we need to start viewing the world as a community and not rivals to be overcome.

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I think we need some serious government reform. Campaign finance reform, defense budget reduction, shine some light on the military industrial complex, judicial reform, increase in state autonomy, I coulda go on.

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It's too big for one person. We all, as citizens and voters, need to demand a more transparent government. We all need to heed Eisenhower's advice and be informed on the actions taken in our name. It seems like our Governement has been rendered pretty ineffective and that the people that actual control policy aren't public officials and act without oversight. We have to change the culture that has allowed this situation to develop.

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I actually appreciated the question. It's helps to establish paradigm and that effects this conversation. I can't help but see the world through my own eyes.

How was this determined to be service connected?

It wasn't. There is no proven link between my service and CML. I'm covered by the VA bc it happened within 5 years of my (honorable) discharge. I handled a lot of depleted uranium, but I can't prove anything. It also took them about 25 years to admit that Agent Orange caused the same kind of Cancer in Vietnam Vets.

Are yiu allowed to go to non va hospitals for the care? If so: why not; and, under what circumstances are you allowed to go to non va for treatment.

Ty and I hope you recover well.

I wish I knew more about the exact process for seeking private care. I was really sick when all that went down, but I do know that it was my family threatening the decision makers at my local VA hospital with litigation and the efforts on my oncologist, through channels outside the VA system, that got them to admit that my condition had deteriorated beyond their ability to treat me.

For you to have served our country... Then to watch as people - whose job it is to care for you - fuck you over. From the chicken hawk politicians on down to the career CYA bureaucrats. Doesn't it make your blood boil? How do so many veterans suffer in silence?

It's in the soldier mentality to suffer in silence, so I'd bet that has something to do with it. As far as political ideals, I'm not the best person to ask. I'm not happy about being lied to by Bush and Cheney about the whole Iraq thing, in general. So, I, by extension, don't really feel very great about my part in the whole thing.

Some news outlets are bringing up the idea that these are isolated incidents, saying that its a few bad directors, and not a nation wide problem. Do you agree? Do you think that your case is being handled this way because of where you live? or Do you think that the VA on the whole is flawed?

I strongly disagree. The issues are with the way the VA operates and with the culture of blind obedience to a broken system.

I am 100% disabled vet. Served 20 years in the Navy and receive all my care from the VA. I have had no problem with my local VA. They have responded to all my needs with prompt professional treatment. Just so you know not everyone agrees with you.

I'm very happy to hear that and thank you for bringing up an excellent point. I don't think my experience is typical. For the normal veteran, va inefficiency might only mean a longer wait in the pharmacy line, or perhaps no negative effects at all. There are also many excellent people that work there and genuinely want to do everything they can for our veterans. I think I was in a unique position, where some of the cracks in the system were exposed, and having my VA experience sandwiched between 2 different private cancer treatment facilities really drove the disparity home for me. I also needed immediate treatment, but illogical pre-reqs prevented that.

I think the point is, even if this only effects 1% of veterans, that's too much. I realistically could have died, and that never would have happened at a private facility. The cause of my poor care isn't a bad doctor or one overcrowded clinic, but VA policy and adherence to guidelines that supersede a doctors ability to treat a patient. This means that the system is broken, in my view.

I believe a civilian healthcare system with insurance and huge medical facilities would have a difficult time doing a better job with the same budget and personnel. Of course I do not wish anyone to have a difficult time. Only trying to be realistic about my expectations.

Fair enough, but in my experience, the VA spends as much money, if not more. In fact, it seems to me that their solution is always to throw money at the problem, but never deal with the real causes. The main cause is a lack of incentive bc they have no need to attract more "customers." For every vet that dies for no good reason, there are plenty more to take their place and no consequences.

what was the most scariest/beautiful thing you saw while in service?

The stars, when viewed from the pitch black of the open ocean, are too beautiful to describe.

I think the scariest is the disparity between American perspective and the realities of the majority of the planet.

Edit: a word

Are you okay now?

It takes 5 years post transplant to be "cured" but I'm on that road. I was recently told that I have a less then 1% chance of relapse. I've finally reached the point where I can move on with my life, after being disabled since early 2012. Feels good.

Did you serve along veteran friends with worse plights than yours? And whether you guys coordinate your health management matters together or are each on your own against the red tape.

It's hard to quantify this, from only one person's perspective. I'm very young to have had such medical issues, and my situation is pretty unique among Navy Vets, from what I can tell. I see other Vets frustrated at the VA all the time, but I can't think of any sailors I served with or know personally that have run up against what I have, but I suspect that's only a matter of time.

At just 30, do you still identify as a 'squid' or is that not used anymore? Thank you for your service.

Oh yeah, I think "Squid" is immortal. Mostly because the other branches always call us that. Similar to Chair Force, Leatherkneck or, what would you call the Army, Meat Shields?

And the Marines are a branch of the what? :) Used to love hearing my retired riding buddies give each other shit.

I was on an amphib, which is basically a big gray taxi for marines. I loved working with those guys, but yeah we always made sure they knew they were a department of the navy.

have you considered legal action?

Yes. I need to decide soon. I haven't actually talked to council, but I know who I'd call.

Knowing what you know now about treatment of our veterans would you choose not to go into service if you knew then what you do now? Would you have done anything differently?

I wouldn't join the service, but not because of my medical care. I joined the navy bc I thought what I was doing was honorable and beneficial to the world. My opinion has since changed.

What was it about your experience? Do you think it is negative or positive to society? Is it a fairy tale that once realized is swept under the rug and forgotten so the next volunteer has a huge smile on his face as he signs a pact for the same fate?

I only came to the conclusion that I would not join if I could do it over after years of reflecting on what I saw, and with hindsight on our involvement in Iraq. It wasn't just one thing, but as I met people in different places, from Europe to Africa and the Middle East, I realized that we have a false sense of superiority here, which justifies some foreign policies that would be hard to justify if we were being responsible global citizens. While I was in the military, and for a while after, I still had a very Ameri-centric mindset. (If you'll allow me to make up a word.) I think I am a better person for having had the experience and I learned how to be an effective leader and a disciplined worker, but there are other ways to gain life experience, so I can't say that it was worth it. I would just encourage people to make the decision to join, knowing full well what the consequences are and what is going to be asked of you. But there are always going to be people to fill the ranks, especially when the economy struggles and the middle class suffers. The real issue is policy making and the culture that forces policy makers to feed our addictions.

Do you seriously have a bottle of pills that instructs you to swallow them, but not touch or handle them?

Yeah, but after total body irradiation, I pretty much feel like I can roll with anything. (I assume they tell you not to handle them because they have a special coating, which stops them from dissolving before they reach the intestine. Otherwise, the meds don't get to the cancer.)

Looking back what should you have done differently? Did you live close to a big VA hospital or one of those outpatient places? When you "knew" something was wrong and they were not responding did they say "calm down" you have "issues"? Or did they take months to get you appointments and believe you? Could you tell your story in more detail around this time you knew something was wrong and what you could have done differently looking back

I'd be happy to go into more detail. I just didn't want to give a long drawn-out chronology, unless it was specifically asked for.

I just realized this coincidence, but I was diagnosed the Friday before Memorial Day, 4 years ago. I went to a private doctor at first, because I hadn't had any health issues up to this point and never needed to see a doctor. After my legs hurting so bad I couldn't sleep for 4 days, I asked my mom to make me an appointment at her doc. I didn't have insurance, so that's why I had put it off, but by this time I was reasonably sure that something was seriously wrong. Sure enough, doc says I need to go to hospital, ASAP. My white count was ~130k. I spend Mem. Day weekend in a private hospital, where I meet my first doc, who practices at the private clinic, attached. I get free samples of the meds, which are effective at first while I enroll in VA healthcare. This medication is ~$60k per year and I'm looking at taking this for the rest of my life.

Fast forward a year and a half to January 2012 I've been feeling pretty crappy for a month or 2. Tired and sore, mostly. I transition to a "better" medication with less side effects, even though I had been tolerating the original medication, Gleevec, reasonably well. It just didn't seem to be 100% effective. I should mention here that the doc and I made this decision together. He actually normally practiced at the same clinic, with my original oncologist. He was only contracted to the VA for 1 afternoon a week. (He had a massive VA case load.)

At this point, I start having bad side effects. Anemia, bone pain, nausea. When this started happening, both the doc and I decided that a transplant was the best option. I had never been 100% comfortable with being dependent on the VA for this drug for the rest of my life and I was young enough that the odds were more in my favor. So we start this transplant process. This is where things get bad. Over the next 8 months I would progressively get more weak and sick, while we tried the remaining medication, and went back to the gleevec, to no avail or improvement.

During this time, there were several tests that were "mandatory" as part of the checklist, designed to make sure I was healthy enough to survive a bone marrow transplant. Sounds good in theory, but the wait between appointments was unbelievably slow. I mentioned dental before, so I'll stick with that, but it wasn't just them. First I needed x-rays, which took ~1.5 months to schedule, then I need a cleaning, +1 month. Cleaning took longer than scheduled, +1 month. Meanwhile, the nurse responsible for coordinating these checks and tests with the facility in Seattle, is so overwhelmed be the sheer volume of patients, that she's rendered almost completely ineffective. In all these long 8 months, my sister never even received the swab kit to see if she was a match. I said to this nurse, point blank, "I could die waiting for these appointments." She knew I was serious and looked sheepish but nothing went any faster.

Finally, I have this blast crisis when the meds are no longer able to keep this cancerous tide at bay. My oncologist, a guy who knows and tells me that if I were at his clinic, we could start this transplant business today. This guy is distraught. He says I remind him off his son. He keeps repeating that this is "wrong." The next day we head for a VA with better facilities, although I was at a regional facility, they just didn't have a transplant unit.

At this point, I get a call saying to go to the private facility. I had no idea what was going on on the time. I found out later that my mom had been arguing with the doctor in charge of signing off on the care that I needed, and I know my oncologist had been doing everything he could. I have some familial legal connections, but I can only speculate as to how that influenced the VA's sudden generosity.

As a fellow veteran, I am appalled and wish you the absolute best!

Thank you. Just trying to get the word out there and put a face to this thing. I think informing people is the only way to effect a real solution.

I volunteer at a VA doing computer tutorials with the members. You all have some very interesting stories and I suspect that their want to go to the computers are actually based on the need for interaction. No questions, just a thank you for your service!

I thank you for yours.

As a fellow Navy Vet, I understand you. Never finished my 4 years due to an injury my third year in but I get one check up a year. VA doesnt do much tbh. They make you wait and wait. This story tops everything off though. I'm so sorry you had to go through this. What was your rating? I was a HM.

I was a Gunner's Mate. Thanks for your empathy, shipmate.

No problem. I've read articles of Veterans going to their Senators for help in these situations. God forbid anything like this reoccurs, maybe you can write letter to them Senator? Not sure how well that'll pan out but it's worth a shot.

From my experiences and other peoples, they save all the good doctors for the PH guys. Sure they def deserve the quality of care but I think all Veterans do.

I was in the process of contacting every rep I could think of when the blast crisis happened and the VA was still not acting. I abandoned the effort and focused on my treatment when the powers at the VA finally relented and agreed to pay for me to go to a private facility.

What do you plan on doing in life now that you have survived the crisis?

I plan on moving to Key West, and taking some courses involving boat mechanics. I'll save money until I can buy a sailboat and fix it up. Then I'm going to disappear into el Caribbe for a while.

Do you think veterans with service connected disabilities should get priority treatment from the VA? To ask another way, why should the VA treat anyone with a non service connected disability? Doing so seems to take away from their core mission of caring for those who were injured fighting for the country.

I'm not completely versed on the requirements for VA care, but it's not available to every Veteran. It's only for certain medical issues, which can be reasonably linked to a veteran's time in service. In my case, because I was sick within 5 years of discharge and bc I served in the OIF/OEF theater, even though I'm not specifically "service connected," the VA covers anything related to CML. I think this is fair, in my case, bc there is a high likelihood that environmental factors from my time in the Navy strongly influenced, if not outright caused my illness to develop.

I think it's necessary for the military to always allow a buffer period from discharge bc it can always take time for illnesses to show themselves. We still know very little about "Gulf War Syndrome," for example but I think it's important to continue to treat these Veterans, even if we can't explicitly determine the cause. You can also see examples with various cancers after the Vietnam War, including CML.

I think there should be priority treatment windows allotted for patients in critical health. Once you're in the system and the VA recognizes that they are treating you, whether or not you are service connected should go out the window. The problem is too many rules. We need to allow doctors to make logical decisions regarding patient priority in order to save lives.

Your leukemia is not service connected, correct? If so, why are you entitled to VA care? Is it because your civilian income is low enough to qualify you?

I'm not service connected. I'm entitled bc I got sick within 5 years of my separation from service. It's a standard benefit for every Veteran that served in the OIF/OEF theaters of the "Global War on Terror." This is bc of diseases like Gulf War Syndrome which can take years to show up.