A couple of days ago reported in The Hill, a news organisation that has a “Congress Blog”. In the opening lines of the article by John Kerr, he writes:

Why would federal health officials want to make felons out of those trying to save the lives of thousands of Americans suffering from leukemia and other deadly blood diseases?

That’s a question many doctors, patients and their families are asking as the U.S. Department of Health and Human Services (HHS) seeks to re-criminalize compensation for bone marrow donors.

I would not be alive today without my Donor. Please, Please, Please… This is a must read for people following this blog and anyone who is going to have a Stem Cell (bone marrow) Transplant or is thinking about becoming a donor.

Please read this article.

Why do they make this so hard for us to receive treatments to live?! Thank you for all your support! I will research what we can do to stop this craziness by the HHS and post on this later.brazil_movie_posterEditSize

 

frustrationYou won’t believe this! The insurance company will not pay for the additional infusion of donor stem cells… YET…

Why? Because I am NOT transfusion dependent at this time. So they want me to almost die again instead of being proactive and/or preventative of my condition. WTF!!!!!! Yes, I am angry.

I got the rejection letter a week ago. So I started doing my research. I know what my Doc was going to do… what the outcomes are from the medical studies (and it’s all positive… like 2 to 3 times the long term survival rates. And the medical studies pretty much say to do it earlier than later). But in the rejection letter it actually states there is no evidence for positive results from the NIH or other reputable government agency. Does the procedure have the seal of approval yet from the NIH? Why? Because these medical studies are still in Clinical 1 and 2 trials and were published in 2011 – 2013. My insurance says, as “defined” by the University (through which we get our insurance and which has a huge Medical School), says that 1 and 2 clinical trials are “experimental”. Technically, they are. Experimental procedures are not covered by insurance.

Did the University just buy a plan (a package they could afford) from the insurance company and the insurance rep and director of making these decisions just bold face lied to me? (Automatic denial for “experimental” procedure) or… Did the University decision-makers actually decide purposefully to exclude 1 and 2 clinical trials? If so, how short sighted can a Research 1 university (supposedly equal to Harvard and MIT), which the University is classified as, and how hypocritical can they be? Yes, this university is a RESEARCH 1 university and very proud of it!

So the rug has been pulled from under my feet, once again. Good thing I can surf. I’m just trying to figure out where I should stand.

Luckily, I’m not transfusion dependent, except during surgeries. We have to schedule my vocal cord surgery (to remove the viral growths that are exasperated by my lowered immune system) in April, after spring break, so I can at least enjoy the kids and no complications arise. Lastly, I need to finish the IGG-IV treatments to see what impact they really are having. Those IGG treatments are fucking expensive… and we can keep doing those for a year or two. I would not think they would want to keep paying that.

But personally, I’m getting tired of the change in plans, the surprises, the stress, that I have to fight so fucking hard to get proper treatment. The irony is that my family and I have paid into the insurance system for over the past 49 years of my life. I was always covered by insurance. I have the right to proper treatment for my condition. And if need be, I’ll sue them for my rights and my life. Insurance companies and employers should not get a say in the treatment of a patient. They buy plans (basic, medium, or high), and I do see the hole in excluding procedures as part of a plan.

But that is NOT what the Affordable Health Care Act (“Obama care” and I hate that term.) says and I’m 99% certain about that. ** Sidenote: If the Republican party really cared about the middle class they should have done something about this issue years ago, instead look at what they did a few months ago… sorry soapbox. ** It has always been and should always be the doctor’s job to decide on treatment and timing, as well as the Hospital’s.They are the experts, not some insurance penny saver reading a clause in their contracts.

Damn it! I just want to get well and go back to work.

~ Mark

This is a personal post more than a health update, but its hard to separate the two, and the health update comes first.

Viruses keep coming, some scary, some painful, some been there before done that. I have weathered these viruses again and again. I will continue to fight them with all of my strength. To cap off the latest two, I have for the past 6 years had viral polyps on and around my vocal cords. Every two years I go in and have CO2 lazar surgery to remove them, because they are slow growing. Not anymore, because I have no immune system. On July 5th I had a tiny one on my vocal cord, but I could talk like a normal person again. Let me tell how wonderful that was. It had been 6 years since I could actually sing. I love singing along to my music and dancing around with my kids. It was joyous. Today, I can barely talk, but right now is not time to go in and surgically remove them. Its a watch and wait situation, which seems like the going plan these days in my medical treatment.

Almost two weeks ago I also developed Shingles. Its painful. For me it was at first like I pulled a muscle in my back and each day it grew down the rib to the front of my chest (yes, only one… I think I am lucky that way from what I have read). Because I have been on “prophylactic” anti-viral meds from the day of my transplant, I seem to have missed out on the pox part of the Shingles experience. Now I am taking heavy duty anti-viral drugs once again to knock down this virus.

I say knock down, that is an important distinction between viruses and bacteria. Viruses go dormant, you never really get rid of them, or it is rare. Bacteria you can kill with antibiotics. I have been fortunate so far. Even though I have had 5 viral infections in the past 3 months without a break, we have caught them early, treated them accordingly and I have fought them off. This is something to be thankful for. In the first year following a transplant the #1 killer of transplant patients is infections, followed closely by GVHD.

These viral infections do affect me. I am weak physically, and mentally they are taking a toll too, which does not help. Anyway, as I said before, after each one I have to start all over again, like I was after I got out of the hospital way back in May. While my donor cells are finding a balance with my body, all the extra work my body is doing is not helping me grow new blood cells (that is a hypothesis). One of my questions for next Monday when we go to St. Louis and see my Doc. My blood counts have slowly improved and I am now stable and out of the danger zone. Platelets are bouncing around the mid 50s, Hemoglobin is around 11, and white cell count is “normal”. But remember that the normal is counteracted by the immunosuppressing drugs I am on.

That is the Health news. On Monday since we will be in St. Louis, yesterday was my last day at work. I was terminated from my job for health reasons, because I had to go on Long Term Disability (which is misnomer, because whenever you get well enough to work they cut you off). Side note: What does that really mean? Well? As soon as I am just Well enough to work, I have to go back to work, with no transition, no job waiting for me. They just cut you financially off. Two things that piss me off, one is financial and one is health.

I just spent 6 months without a paycheck and we are broke. We depleted all of our savings and the wonderful donations that you all have given us. To be financially cut off again is more than a hardship on my family. Unless I get a job immediately we will be financially screwed. Oh well, family and health are really more important anyway.

But its the health issue that I am really concerned about. Just being well enough to go back to work is not the same as being WELL. No longer will I, or any cancer patient, be able to fully devote time to healing their body. For me healing my body is not a passive ordeal. People who approach healing and becoming well from a stem cell transplant passively, die. That path is not for me. I have been and will continue to actively enhance and do everything in my power to heal my body. But just at that point when I will be almost Well, they yank the rug from under my (our) feet, so we never FULLY heal, since most of us will be “forced” back to work, without fully healing.

This makes no sense to me. To spend all that money to get us almost there and then place you back in a stressful situation once again, which ultimately will cause your body to become unwell and you relapse. If you look at the statistics and look at what happens to transplant patients, then the number one killer after two years is relapse. Which means the cancer comes back and kills you. Many transplant patients go through a second one, but the odds of survival are really, really low. And I’m not doing this again.

I will have to balance what is best for my survival against what is best for my family’s well being. Losing everything financially, is not beneficial to my family. At the same time, losing me for the family is just as detrimental. Its a true Catch 22. Damned if you do, damned if you don’t. The hospitals and doctors don’t think beyond their areas. This is a societal issue and policy issue that the medical field is mostly blind to. They don’t look at the big picture, they refuse to look holistically at healthcare. They only think about their specialties and saving money (which by the way they don’t).

Do you realize once you are released from any cancer related treatment plan, you are left alone, with the only support coming from small groups of people who share their stories and what they do to help themselves. The medical establishment does nothing to help you to heal (aside from giving you pills) to fully heal and recover. That is my experience, I am very sure it is 99% accurate for 99% of cancer patients. One reason is that insurance companies won’t pay for anything. The other is once again, doctor’s don’t think holistically, at least not for cancer patients. Oddly, if you tear your ACL you go into physical therapy until you are good as new (now that is an assumption based on football, but those guys earn millions of dollars each year and college kids if they show promise in the future).

Cancer rates keep rising. The medical establishment publish all of these cures that they have done to save people in the last 20 years. Yes, we have great medical specialists who can save us temporarily, and that is it. Americans pay more than any other country in the world with all of these specialist, but our cancer rates still climb. Part of that problem is only addressing the symptoms and temporary cures, instead of preventative measures. “A penny saved is a penny earned” is a fallacy. If you pay a little to correct small problems early on, then you don’t have to pay for expensive problems in a year or two, or even if it is five to ten years down the road. What does it matter?! You are still paying for it… yes YOU.

But thinking holistically means the medical specialists, insurance and pharmaceutical companies would not reap the profits they get. Because the patient is either actually cured before something expensive and drastic has to occur, or they learn to manage it so it becomes stable. Yes, sometimes we do need medical specialists and medicines to make us well.

But we need balance.

Thinking holistically also means we do not just forget about cancer patients once they leave the office. The medical establishment needs to help people come up with plans of action, rehabilitation centers, or whatever is called for so that cancer patients actually heal, recover and are truly cured.

As a stem cell transplant patient, they only look at my five year survival rate, which for me is about 25 – 35%. I would predict that those percentages would be a lot higher if they looked at medical treatment holistically. I have the knowledge and tools to heal myself, most cancer patients don’t. I know I will survive, because I will actively do what it takes to make sure that happens, most cancer patients don’t. Give us time to really heal, without the fear of losing everything you have worked for your whole life to become a middle class citizen and be able to retire.

I want to go back to work! I loved what I did. I can still be a productive citizen for another 20 years. But I have to heal first. Otherwise, in two or three years it will be all for nothing. The cancer will come back, or GVHD will make me ill again so that I cannot work. What we are doing as a society medically makes no sense.

We the people have the power to choose a course of action. We can tell the medical and insurance companies how we want to be medically treated. Don’t say it should be their choice, we as a society and government do it all the time to plenty of jobs. We should not go blindly into this, but examine the countries with the best health care systems. Ours isn’t (read any report and we are at the bottom, yet we pay the most – almost twice as much). Use the best models to create a medical system that will work for our culture. Ours doesn’t work.

Lastly, this is a political note: look into payoffs from the big medical companies to politicians and throw them in jail. What they are doing, taking money for votes is against the law. And a special note to the Republican party (i.e., politicians), stop using scare tactics to make people afraid of change. Be part of the solution, not a roadblock to positive lasting change. If you don’t like what has been proposed come up with a real solution, not just business as usual. Because it doesn’t work. There are plenty of time periods and Presidents that embraced change. Why don’t you give it a try?! And remember, payoffs are illegal, and those that take them should go to jail.

End of soapbox.

~ Mark

 

 

Urinary_SystemI’m starting at the end of this story and will flashback for clarity, you know like they do in the movies. ;P

Bottom line: I’m not passing blood and the pain is under control. I have a moderate case of the BK virus, which is causing the Bladder/UTi issue. The only way to treat it is to wait it out and dole out pain meds as needed. It never goes away. Today, it is a hell of a lot better. Sometimes you have to wait and observe something in order to keep it under control (pain is like that). It’s hell while you sit and wait, but once you figure it out, pain management becomes just part of the routine. Your doctors and nurses cannot do this for you, you have to do it for yourself; after all, you feel the pain, they do not. It is almost comical that a Bladder/UTI infection can kick your ass like it did to me, but passing blood and clots really hurts. Well enough of the gross stuff.

We have an appointment to have the Bone Marrow Biopsy on Friday. From those results my Doc and med team will be able come with a plan of action. It appears it is one of two things that I just don’t want to talk about, until we get the results. We all will just have to wait, so don’t bother asking. Lastly, the IV-IG treatment is on hold until we get the BM biopsy results, and that is just how it is. Sometimes you just have to go with the flow, and make the best of the situation.

On the flip side at least all the complaining I did yesterday finally got to the right people and I was visited by every doctor with their various diagnosis as to what is wrong. My Doc showed up last, around 7pm, just to explain the why of what was happening. Before this, no-one bothered to inform me of anything except to tell me what was not happening and the treatment was to give me pain meds until they figured it out.

But just like every doctor I have seen over the past 10+ years they don’t come to the same conclusions using the same evidence. For example, one set of doctors says I had and passed a kidney stone, which caused most of the bleeding. Another set of doctors said that was ridiculous and said it is probably the BK virus. Yea… that’s from Wikipedia, but a good short summary for those of you who want to read about it. Being kept in the dark about everything is very frustrating and scary. Treating someone with pain killers as the Treatment Plan signals to me, Palliative Care. I’m not going down that road, and nothing so far says I should be. Period!

Soapbox Time

The real problem was not what was wrong with me, but that no-one seemed to think they had the time for me (or I was not involved in the decision making process – like we time-warped back to the 1950’s). And for some people that is OK by them… it is not OK by me. I have been misdiagnosed too many times to trust the medical profession and their practice; because it certainly is practice and is not science. Not that science has all the answers. But most don’t pretend to have them when they don’t. General Practitioners are almost always guessing, specialists are often wrong when they don’t have enough evidence or too much, and you rarely get lucky enough to actually see an Expert in the medical field. Rant over!

~Mark

The last several days have been a blur. Other than watching Mark writhe in pain, the most frustrating part is not knowing what is going on and what to do about it. The floor doc was sure he just passed a kidney stone (not to belittle that problem, because I realize passing kidney stones is hell). But that didn’t explain the UTI symptoms he had a week and a half prior. And then after we get to the hospital, there is a lot of shrugging shoulders. His regular med team cancels all his preplanned procedures but no explanations why. So we have no idea what is happening or why, other than they are just going to give him pain killers. Mark complained to everyone that had ears that he wanted to talk to HIS doctor and wanted an explanation for what was going on and what we were going to do about it. He finally got an advocate (an inpatient nurse coordinator) that nagged until his primary team called and talked to him yesterday late afternoon. His doctor did come by and sit down with us and talk over everything. (He walked in and said, “I hear you have been looking for me.” Basically they did not want the biopsy done inpatient because they do not do as good a job as his doctor’s team does outpatient. And they want to hold off on the IV-IG until they get the biopsy results and make sure it is necessary. If they had said that on Monday, it would have alleveated a lot of stress and anger.

The floor doc that had originally said this was all a kidney stone, just came in and confirmed, in his opinion, that this all is related to or caused by the BK virus. It causes or has symptoms of a UTI. It caused inflammation and bleeding in his kidney. The ureter and bladder got irritated. He started passing clots which blocked in the ureter (Hello severe pain!).

So the thing is, there really isn’t anything you can do about the BK virus. No meds to take. The body just has to deal with it. The key to keeping it under control and helping to alleviate the bleeding, clotting and pain is a lot of fluids. Mark is going to be drinking about 2 gallons of fluid a day. They are sending him out with 2 types of pain meds. Two different levels, saving the higher one for just in case. The end result of this episode, drink lots of fluids and manage the pain until the body gets the virus under control.

We come back on Friday for biopsy to get a good look at what is going on and what future plans should be.

I am sorry if I have repeated stuff that Mark has said, but I am typing as quickly as I can so we can update you all right away, 🙂

Thanks for listening and being there for us. Your support with comments and good vibes helps us a lot.

Huli pau!

~terri

water bottle

Red_Tape1This will be a short rage against the machine and then an update.

I really hate my insurance company! I was not given a choice of insurance companies when I signed up. I got what the University of Missouri decided it was going to contract with. Some of you may recall back to 2008 when they refused to pay for their part when I was first scheduled to have this bone marrow transplant. They were the secondary insurance company at the time, because I had student insurance, and Terri worked full-time and had them.

Anyway… now, in their pocket friendly wisdom they decided to deny a treatment I NEED, Yes, it is expensive, but it would solve the problem. Instead, I get the alternative treatment with longterm and harmful side effects.

Ben Franklin, who I do admire, said “a penny saved is a penny earned.” This is just not true. Instead of paying for an expensive treatment now, I am far more likely to have health issues longer which the insurance company (and ultimately all of us) will have to pay for. AND if the alternative treatment does not work I have to go back into the hospital! And we know how much that costs per day. I’ve always believed in preventative care, because you end up with healthier people and who don’t need to visit the doctor as much (or have a better education, etc.). And that saves money for everybody. Our society has not fully accepted the reasoning behind this concept. We still think as Ben does… “a penny in my pocket is mine, even if it costs me a dollar later.” Investing now saves money longterm.

So YES… I hate insurance companies with their short sided, profit only motive mentality.

Now the Update: So yesterday was a tad disappointing. We set up for Mike (Giblin) to take care of the kids, so they would not have to spend 12 hours going out to St. Louis. Thank you Mike!

When we got to St. Louis we did not see my Doc, instead we saw a doctor who is part of my medical team and NP Stephanie came in a bit later too.

Bumping up the Prednizone to 30mg worked for only a week. My platelet count dropped again and is now at 32,000; when it drops between 20 – 25,000 I start getting transfusions. The other blood types are rock solid and that is important. WBC was 6.1, and RBC was 3.5. All stable and the white cells (my neutrophils are in the normal range; whereas the red cells are just below the low of the normal range. That is really great and just where we want (or expected) them to be.

Now we have more evidence, all the lab tests have come back negative. There is only one solution left. The GVHD which is affecting my gut and liver is also killing off my platelets. Not good.

There is a solution, hence the rage opening this post. I get the IVIG treatment. What IVIG does is that it coats (or binds with) the receptors on the outside of the cell, so that my donor immune system does not attack it. It does this to the platelets and other receptor cells throughout my body, which are my cells. It is an immunosuppressant that targets the cells and does it very well with minimal side effects. What I don’t understand is why the donor T – cells are killing off their own platelets; they are after all part of the donor’s immune system. But that is what the med team has concluded. They have seen this before and know how to treat it. Like we always said they would be playing with my meds for up to a year (or longer). We really hoped for the best case scenario and I would be off the meds and living a normal life, whatever that is.

So while we were talking to the doctor NP Stephanie comes in and tells us the insurance company denied my treatment, but that they were appealing it and would know in a few days. IVIG is expensive, but it works and with few side effects. AND it lasts up to 3 months. So the only alternative is to up my Prednizone. Now I am up to 60mg per day. Prednizone has some serious side effects that are longterm and harmful to my body. They always try to give you low doses of it, because of this. It acts as an immunosuppressant and is part of normal treatment following a stem cell transplant. But it is the level of the drug and duration that causes the longterm and harmful side effects. But I have to have it. They have to get the GVHD under control. GVHD kills cells. Not to be dramatic, but GVHD can kill me. There are no other options. The donor immune system is waging war on my body. I feel like crap, and it is rather uncomfortable. No-one said this was going to be easy. But my insurance company is making it a hell of a lot harder. I NEED the IVIG treatment. If the Prednizone does not work in the next two weeks or I don’t get the IVIG treatment, I will be back in the hospital in two weeks. Bottom line. We are praying that something positive happens in the next two weeks.

i know this all sounds like a downer… it just is. Intellectually, I know this is just a large hole in the road to navigate around and is only temporary. Physically and emotionally, right now I can no longer see the forest. But I have Caitie and Kai with me everyday, Terri, and all of you. And that is very comforting. So thank you once again, love you all!

~ Mark

P.S. Hi. This is where I am supposed to come in and lighten things up a little and insert a funny. But, I am sorry, I got nothing. I just want to hear the doctors say, “Okay, this is what is wrong. And this is what we need to do about it.” And then the insurance company says, “Yup, those doctors know what they are talking about, let’s go for it.” Check and check. But that’s not very funny is it.

On the upside, baring any unforseen circumstances, we do not have to go to St. Louis next week. They are going to do the weekly blood tests locally, and send the results to St. Louis. And today is Day 90. So, Yay!! Can you believe Day 100 is just around the corner? Even when time is crawling, time flies.

Good days and bad days. Bumps in the road. Sometimes a detour. I try to remind myself and everyone, that even though Every day may not be good, there is something good in every day. But with all of you behind us, we are just going to have to push through. Pardon me now while I go kiss my husband and hug my children.

~terri

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