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Category: Factor V Leiden

Prescription Drug Coverage Tips

July 11, 2017 / / 4 Comments

I’d like to share a little story with you. It serves two purposes. The first being I get to sound off about this issue because well, isn’t that why people blog? OK, just kidding. The real reason I am taking the time to write this is because I have some important information to share that I think some of you may find useful.

After being diagnosed with a blood clot in my leg in 2004, I was tested for several different clotting disorders and found out I had a genetic blood clotting disorder called Factor V Leiden. Then in 2012,, I was also found to have two small blood clots in my lungs. Technically someone like me is supposed to be on blood thinners forever. Why I don’t take blood thinners regularly is a long story for another day. Actually, I think I may have told the story already. I’ve been blogging for a while and I lose track of my topics.

My medical plan is that under certain circumstances, I have to take a blood thinner injection called Lovenox. For example, I flew to Ireland last summer and had to take an injection before each of my six hour flights. No biggie.

About two weeks ago, I had surgery on my ankle. It was a big deal kind of surgery in that I cannot bear any weight on my left leg for 6-8 weeks. That is a blog story to be told all in itself which I will get to soon, I promise.

Because of the non-weight bearing status, I was prescribed Lovenox injections every day for the entire 6-8 week period. My risk of developing a blood clot after surgery was (is) substantial. The injections for me are no big deal. I’m a nurse, I’ve done them before, and it is just a part of the plan for me anytime I need orthopedic surgery.

The day of my surgery was long and tiring. Not to mention stressful. The hospital is two hours away. We had to be there at 6am and I think we got home around 1:30pm. My husband dropped off my prescriptions at the pharmacy. About two hours after I got home, the pharmacy (CVS) called to talk to me about the Lovenox. They wanted to check with me about filling it because the insurance doesn’t cover it and it was going to cost me $550 for a six week supply.

$550.
Let that sink in for a minute.

That can’t be I told them. It must be covered. I have to have this medication. There was nothing they could do I was told.

So I’m still messed up from the general anesthesia and I call my prescription plan, Aetna. I have the Aetna through Medicare Part D. They tell me that the issue isn’t about it being covered. Aetna does cover Lovenox. The problem was that it was a Tier 5 drug AND I was in the donut hole for Medicare.

For those of you who don’t know what that means, the donut hole is the point in your Medicare prescription plan where you have to start paying a much larger portion of your own medications until the total cost of your medications reaches a certain amount. It’s much more complicated than that, but that’s the gist of it. I’m very careful about avoiding the donut hole and this is the first time I’ve gotten there, likely because of a VERY expensive, new eye drop for Sjögren’s that I tried this year. The eye drops were a bust and now it was a bust for my prescription benefits as well.

I told the Aetna representative that this was ridiculous. If I didn’t have this medication, I could die.

I COULD (LIKELY WOULD) DIE.

I asked her if there was anything I could do.
Pay attention here.
This is important.

She said I could have my doctor’s office call Aetna and request a tier exemption. If it was approved, I would be refunded the difference by the pharmacy,

I’ve been a chronically ill patient for quite a few years and I had heard of this. I know that if you need a medication not on the plan’s formulary, your provider can apply for an exemption and get it approved, but I did not know about this tier exemption business. Very good to know.

I got off the phone and called my doctor’s office requesting that my provider call Aetna and request the tier exemption.

Meanwhile, the pharmacist from CVS called me and told me that if the doctor changed the prescription, I could save $200. What?!? This is my second important point in this blog…

Apparently the doctor ordered a 0.6ml syringe but I needed to only give myself 0.4 ml. This means that I would just adjust the syringe before I gave the injection and waste 0.2ml. The pharmacist told me that they medication comes as a 0.4ml syringe and that is why I would save so much money. He told me he had already called my doctor’s office and requested the prescription change and would hopefully have it for me that evening. So my husband and I decided that we would pay the $350 and just pick up the syringes so I could start the medication.

It is SO important to have a relationship with your pharmacist. Mine has known me for years and I truly think he has my best interests at heart. I never would have known about the syringe dosing. It’s obvious from this experience the importance of advocating for yourself in regards to medication prices. Ask your pharmacist if there is an alternative available. In my case here I got the same medication and the same dosage just by somebody paying attention and knowing the medications.

I got my medication. My doctor called Aetna as requested and the tier exemption was approved. I was psyched! I got a letter from Aetna confirming the tier exemption. It didn’t say what the new tier was but I dropped it off at the pharmacy. i called the next day and asked them to run it through for the refund.

It wouldn’t go through.

The pharmacist called Aetna again and he was told that I wouldn’t get a refund because I was still in the donut hole. He then explained to me that right now, it doesn’t matter what the tier or my resulting co-pay is because I am paying the donut hole price for my medication now anyways.

Duh, of course.

Between the lingering effects of the anesthesia and the heavy doses of pain medications, it slipped by me that this was the case: there was no way I could get money back right now. Ten days of going back and forth with Aetna, my pharmacy, and my doctor’s office for nothing. And I only went through all that for the tier exemption because somebody at Aetna told me that was what I needed to do to pay a lot less for the Lovenox.

I did call Aetna and spoke with a supervisor and explained what had happened and that I was upset that while I was recovering from surgery, I had to deal with all this (for ten days and with at least seven phone calls) because their reps are not well informed or knowledgeable about how prescription benefits work. I was told the issue would be addressed. And then, I let it go.

I am going to spend some of my recuperation time this summer comparing Medicare Part D prescription plans so when open enrollment comes in October, I can make a switch if I can find a better plan to suit my needs. In 2017, some of my prescription co-pays have skyrocketed, several of them have a copay price 3x higher than 2016. Maybe this is across the board and I will find there is no better alternative for me, but I have to at least investigate the possibilities.

This whole situation scared me though. I am on disability. I work very sporadically and when I do, it’s not a lot of hours. I am fortunate in that I have a husband who works full-time and makes a good living. I also have a family that I know would never have let me go without this medication. But there was a time that I was single, on disability and not able to work at all. I could not have afforded this medication without help from my family.

So what happens to all the Americans out there who need life saving medications like this and don’t have a husband with a job or a family to go to in crisis? I know people in this situation. And I will tell you, they don’t need that burden on top of already having a severe, chronic illness. Just some food for thought.

I hope this was helpful.
Remember, be informed and ask questions!

Birth Control, Mirena, and Me

July 2, 2014 / / 1 Comment

Sometimes a topic comes up that I am somewhat uncomfortable throwing out into the world wide web community, and this is one of them. However, I had to go in for a minor office procedure two days ago and I was extremely nervous about what to expect. A Google search of some other blogs gave me information that helped me quite a bit, and reminded me of the importance of blogging and why I write what I write.

On Monday, the very same day that the Supreme Court of the United States of America granted a for-profit company permission to withhold financial coverage for certain types of birth control from its female employees (including IUDs), I had my IUD removed.

That was a total coincidence.

Here’s the thing though. This blog is not about that decision because honestly, I want this blog entry to be more helpful than that. We all have our opinions about the case and trust me, mine is strong. But this blog is about women and the choices they make. The choices that impact their lives, their partner’s lives, and the children they may or may not have. So here is my story…

During my college years, I was put on birth control pills after I suffered through a ruptured ovarian cyst. It was not my first cyst and because of the rupture, I lost critical days of clinical experience during nursing school. Once I went on the pill, the cyst situation improved dramatically. I was not sexually active at the time I went on the pill, and never had been at that point. However once I was, I found the birth control pill to be a great piece of mind, as condoms are not exactly known to be foolproof.

I tried different types of birth control pills over the years as I had suffered from the side effects that many women deal with in the name of acting responsible. I stayed on it for years and years until I came off of it during my first marriage for a brief, and I mean VERY brief, attempt at becoming pregnant. I was back on it two months later. That’s a story for another day.

In 2004, while in this marriage, I experienced a blood clot in my leg. I underwent testing and was found to have a genetic clotting disorder called Factor V Leiden. At the time I developed the blood clot, I was dealing with a medical issue and was spending a lot of time in bed. The hormones in the pill were thought to be an aggravating factor in the development of the blood clot. The trifecta of the Factor V Leiden, being immobile, and the hormones in the pill almost caused me a death sentence. I was banned from birth control pills for the rest of my life, as well as all hormonal forms of birth control such as DepoProvera, etc.

So condoms it was.
That was fun.

Years went on and in 2008, I left and subsequently divorced my husband. At this time I was also dealing with a raging autoimmune disorder that left me disabled and I felt strongly that I needed to further push the birth control issue as being single, relying on condoms if I were to have a new partner, and having this many health issues was a very bad combination. And frankly, irresponsible as well. The issue was made more complex by the fact that my fertility was in question anyways due to Polycystic Ovarian Syndrome, so who even knows if I needed birth control. But since I hadn’t undergone testing fertility testing, I was playing it safe.

I spoke with my hematologist and gynecologist at length and I was presented with the option to have an IUD. I had two choices: a copper Paraguard IUD or a hormonal Mirena IUD. The suggestion was made that the Mirena might be better for me as the ParaGuard was known for causing heavier periods and I already battled that most of my life, but the Mirena can also cause ovarian cysts. I questioned the use of hormone (progestin) in the Mirena due to my clotting disorder. It was explained to me that because of the type of hormone and the location of the hormone in the uterus, rather than in my entire system, that it would not be an issue. The Mirena IUD had become the birth control method recommended to women with Factor V Leiden, as studies had shown that it did not cause an increased incidence of blood clots.

So in August 2009, I had the IUD placed. I was not thrilled about the idea of having something foreign put into my body, by my options were so limited. I was forewarned that insertion can be more difficult for women who have never been pregnant/given birth, but this was something I read online. I figured maybe some women exaggerated how bad the pain was. My (male) gynecologist at the time said it would just be like period cramps.

I no longer see that doctor.

It was bad.
Very bad.

I have never given birth, but I would have to say that the pain was probably comparable, just much shorter in duration. I have been through a lot of medical procedures, many of them unpleasant, and this ranks in the top three of most painful procedures. Then there was a lot of dizziness, I threw up while on the table, and my doctor told me I would be OK to drive home. I got twenty minutes into my drive and had to pull over because I thought I was going to pass out from the pain. I eventually made the last ten minutes of the drive home and loaded up on Percocet that I had left over from an ER visit months before.

The severe pain continued for two straight weeks and that was how long I was on Percocet. It took about two full months for me to get back to normal and then I was fine. I had called the doctor several times during this period because I was concerned that something was wrong with the IUD, but I was told that it just doesn’t agree with my body and that it will get better, which it did. I don’t want to scare women out of getting an IUD, but let me tell you, knowledge is power, Be prepared and don’t take the word of a male physician on how it feels to have a T-shaped object inserted into your uterus when nothing else has ever been placed in your uterus before. Ask for a medication to take beforehand and have someone drive you. My experience may not be typical, but better safe than sorry.

Life after that with the IUD was OK for the most part. I would get paranoid that I couldn’t find the strings which indicated if the IUD was in place. I did get a few cysts over the years, which I probably would have gotten anyways. My periods ceased. I never had to buy tampons. And when I entered my first post-divorce relationship, I was relieved to have it. At one point I was taking a very toxic autoimmune medication with a black box warning and was told that I could not risk, under any circumstances, getting pregnant. No problem. IUD in place.

As I mentioned, I was never really comfortable with the idea of having a device in me like that and this became more of an issue for me after a conversation with my acupuncturist when I started seeing him the first time around. The menstrual cycle is a big component in Chinese medicine, especially in relation to blood flow and energy. He never pushed me on the issue, because he is such a good practitioner, but he suggested I consider having it removed so that the work I was doing in acupuncture could be more effective for my autoimmune symptoms. Again, my options were limited, so in place it stayed.

Fast forward to 2013. I begin to have a lot of problems with my cycle.The Mirena has now been in place for almost four years. I originally thought it was stress related due to our wedding, but by the end of the year, the wedding was done and the cycles worsened. I spoke to my nurse practitioner, who I trust implicitly, and she told me since my Mirena was due to come out in August 2014, the symptoms were likely related to the fluctuations of hormones that the Mirena was producing.

I go from never having a period to having several a month. YES, SEVERAL A MONTH! Two words for that: raging bitch. Actually, that would be a bit extreme, but the hormone fluctuations were causing bad mood swings (mostly depression), bloating, cramping, you know, the usual. Plus, this made me concerned about the Mirena’s efficacy. If the hormone levels in the Mirena were changing that much to cause these symptoms, was there enough progestin in that sucker to do what it is supposed to do? I am 43 years old and I have several medical issues that would likely make a pregnancy life-threatening for me, not to mention threatening to an unborn child.

So this has left my husband and I with lots to talk about. The plan was to get through my BRCA testing because if that ended up being positive, I knew I would have my ovaries removed and it would be a resolved issue. I have not received those results and birth control is still an open discussion. However we both agreed that for right here, right now, it is not physically OK for me to have this current IUD in place, especially since the more hormone fluctuations I have, the worse my autoimmune symptoms get.

For women, especially women with health complications like me, there are no easy answers. However I am fortunate enough to have a supportive husband and an excellent health care practitioner. Yesterday, after days of major fear and anxiety, I had the IUD removed. This was the Google topic I was referring to at the beginning of this post. I was petrified to have this thing taken out after my harrowing insertion experience. But it went OK. I thought to take some pain medication AND Motrin beforehand. It was painful coming out (they are taking something out of your uterus after all), but it was so quick that I barely had time to react. I did have cramping on the way home and Motrin later on in the evening, but by the next morning, I was out for a run.

The aftermath of the removal has been as expected. My body and hormones have been altered for the past five years so all those periods I didn’t get the first four years? Yeah, they were getting saved up for now apparently. It sucks, but I am confident that in a few weeks or months, it will all even out. I’m sure my acupuncturist will be thrilled when I go in tomorrow and I am confident that she can do something to help get me through the next few weeks.

So with all this talk about women’s rights, court decisions, and birth control, at the same time that I have gone through this process this week, it has made me think about the Mirena and if I think it is a good form of birth control. If you Google search “Mirena complications”, you will be blown away by the lawsuits and issues that women have had with this form of contraception. You will see stories of women who love it. You will even read about how evangelical Christians think that using an IUD is abortion (for the record, based on the evidence, I do not). I will be honest, I LOVE the fact that this foreign piece of material is no longer in my body. I am even psyched that I have to go buy tampons for the first time in God knows how long, because it means that my body is doing what it is supposed to do. Even though I had the IUD placed AFTER I first experienced autoimmune symptoms, I am curious to see if anything with my health improves.

For a period of time, for me, the Mirena was the right choice. Besides never having sex, it was the only choice. I think it is easy for all of us to sit in judgment over each other and the choices we make, but we truly know little about the fine details and the decision making process that a woman must go through in regards to her health.

It is, after all, her body.

30 Things You May Not Know About My Invisible Illness!

September 5, 2013 / / 3 Comments
I follow a blog called Interstitial Cystitis: Catherine’s Journey and she did a blog entry based on a questionnaire she found on an invisible illness website. I read it and thought it was a great way to better inform people about what it is like to live with Sjögren’s syndrome, which is usually an invisible illness. It’s ironic because I just talked about invisible illness in my previous blog entry on scooters and Disney. So here is my questionnaire. Please feel free to copy and paste and to your own. Awareness is critical!
 
 

In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: “30 Things You May Not Know About My Invisible Illness”.  Here are mine:

  1. The illness(es) I live with are: Sjögren’s syndrome. Also Factor V Leiden, Hypothyroidism, PCOS, Asthma, ?Interstitial Cystitis, Esophageal Motility Disorder
  2. I was diagnosed with it (Sjögren’s) in the year: 2011
  3. But I had symptoms since: 2007-2008
  4. The biggest adjustment I’ve had to make is: Being out of work and on disability; having to take rest periods throughout the day.
  5. Most people assume: A lot. Specifically that I must be feeling well because I “look” fine and that I am taking advantage of the system because I am young and disabled/on Medicare. 
  6. The hardest part about mornings are: Figuring out how I am going to prioritize my day.
  7. My favorite medical TV show is: Grey’s Anatomy. 
  8. A gadget I couldn’t live without is: My laptop. It makes writing easier and keeps me connected to the world on days I cannot leave the house.
  9. The hardest part about nights are: Pain. My pain is usually worse at night. And not sleeping.
  10. Each day I take: At least 15 pills/supplements. And that is an improvement.
  11. Regarding alternative treatments: I have been doing this for about 10 months. I am not as convinced that alternative medicine can “cure” autoimmune illnesses but I have had significant improvement with a lot of my issues so I think alternative medicine is a critical aspect of my treatment plan.
  12. If I had to choose between an invisible illness or visible I would choose: Neither. This is a dumb question.
  13. Regarding working and career: I miss it. I miss caring for other people on a daily basis and I miss the intellectual challenge of working in the medical field. I enjoy writing but I have come to find out that I enjoyed “going” to work.
  14. People would be surprised to know: I get sick of hearing people complain sometimes. Not my friends who confide in me about something, even about minor matters. But I get sick of  people complaining on Facebook about the stupidest things. I try to sit back and remember that everyone’s issues are different and important to them. It bothers me when people are always (note that I said always) complaining about their kids. Be grateful you have them.
  15. The hardest thing to accept about my new reality has been: That I will never be cured.
  16. Something I never thought I could do with my illness that I did was: Write a book which is currently being published!
  17. The commercials about my illness:  Don’t exist! 
  18. Something I really miss doing since I was diagnosed is: Being able to just “get up and go” whenever I want; being spontaneous; working. Most of all I miss waking up and physically feeling good.
  19. It was really hard to have to give up: Some of the foods I used to enjoy; my nursing job.
  20. A new hobby I have taken up since my diagnosis is: Writing!
  21. If I could have one day of feeling normal again I would: There are SO many things! But since it is only one day, I would go skydiving.
  22. My illness has taught me: What it is like to truly physically suffer. It has taught me to be grateful and humble. It has taught me the value of true friendships and the necessity of keeping toxic, negative people out of my life. It has taught me who my real friends are. It has taught me to appreciate the everyday events in life.
  23. Want to know a secret? One thing people say that gets under my skin is: Advice on how to handle my illness. This is a fine line. I am OK when somebody mentions something to me once i.e.: a Paleo diet. But it ticks me off when they bring it up over and over again. It also upsets me beyond all reason when someone I know tries to sell me some “miracle cure”. Completely classless. Luckily, it doesn’t happen often. There are a few other things but those are the biggies.
  24. But I love it when people: Call me or check in via e-mail. Spontaneous visits. I love it when people tell me that my writing has made a difference in their life.
  25. My favorite motto, scripture, quote that gets me through tough times is: Way too many to list. If you go to my blog’s Facebook page, you will see what I mean.
  26. When someone is diagnosed I’d like to tell them: Never, ever give up.
  27. Something that has surprised me about living with an illness is: That I am happier now than before I was diagnosed.
  28. The nicest thing someone did for me when I wasn’t feeling well was: There is no one thing because so many people have done so much for me. Things that I appreciate a lot though include: offering to bring me lunch or dinner, offering a ride to an appointment, sending me regular mail (like in the mailbox!), making me laugh, talking to me about anything besides me being sick.
  29. I’m involved with Invisible Awareness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
  30. The fact that you read this list makes me feel: Hopeful!

The Great Coumadin Debate

November 30, 2012 / / 4 Comments

In 2004 I experienced sudden pain in my lower left leg. It was an unusual pain. I didn’t remember banging it against anything and I certainly hadn’t been active doing any type of exercise or sports recently. For a variety of reasons, depression had been my constant companion and I had been spending a lot of time laying around. That would soon come back to haunt me.

After a few days, the leg pain got worse and I went to see my primary care doctor. He wasn’t much of an alarmist but he thought it was worth having an ultrasound done on the “off chance” that I had a blood clot in my leg. To be honest, I thought it was overkill but then my thoughts turned to panic when the radiology department told me I could not leave the hospital yet and then called my doctor. My ultrasound showed that I did indeed have a blood clot and would have to go on injections of a blood thinning medication called Lovenox, followed by the oral blood thinner Coumadin, for a period of three months. Since I was a nurse, they sent me home from the emergency room with a prescription as I could do the injections myself which by the way, is easier said than done.

My primary care doctor was suspicious about my blood clot because even though I took the birth control pill, I was a non-smoker. He ran a series of blood tests to check for genetic blood clotting disorders and sure enough, one of them came back positive. I have a genetic clotting disorder called Factor V Leiden and I am heterozygous which means that I only have one copy of the gene. My mother subsequently got tested for Factor V Leiden and was found to be positive as well.

Because I am heterozygous (which is less serious) and was on birth control at the time which probably caused the clot, I remained on Coumadin for only three months. I came off the pill and was banned from hormonal birth control for life. I thought that was the end of it. For those of you who are unfamiliar with Coumadin, it is a difficult drug to be on. It requires frequent lab draws while they stabilize your dose and then usually you have monthly blood draws after that. Coumadin interacts with a lot of other prescription and non-prescription medications including anti-inflammatory medications such as Motrin and Advil. Also because there is such a low threshold for the therapeutic blood level, called the INR, you need to be vigilant about signs of having too high of a level, which can lead to bleeding. There are dietary issues that play a big role in taking Coumadin as levels of Vitamin K, which is found in foods such as green leafy vegetables, can dramatically throw levels off.

Fast forward to February 2012. I am receiving high doses of IV steroids for what was thought to possibly be neurological complications from Sjogren’s syndrome but ended up being a mild case of another autoimmune illness called Guillain-Barre. For weeks, I had been experiencing severe leg pain and weakness which for a lot of the time, kept me in bed or on the couch. It never occurred to me or to my doctors that maybe I should go on blood thinners preventatively due to my Factor V history and current immobility.

Twenty-four hours after the third IV dose, I am sent to the emergency room with heart palpitations, thought to be related to the steroids, so that an EKG can be done. Labs are drawn and one of the labs, the d-dimer test, comes back suspicious and because of my Factor V Leiden history, a CT scan of my lungs is performed. Next thing I know I am admitted and told that two small blood clots have been found in my lungs and I am put back on blood thinner injections once again. Another trip to the hematologist and I am now put on Coumadin for at least a year and most likely for the rest of my life as I have now had two clotting events. I am also tested for other autoimmune clotting disorders which all come back negative. The hematologist admits that he is taking a very conservative approach.

Months go by and I learn more about these two blood clots that were found in my lungs from several different doctors. I find out that they were very small and located in peripheral veins and likely were an incidental finding; meaning that if I had not come into the ER that day, these clots never would have been detected, caused me any problems and would have resolved on their own. However it did not seem that NOT being on Coumadin was even an option according to my doctors. At least that was the impression that I got.

It took us approximately five months to get my INR to a therapeutic level and I was becoming frustrated with being on Coumadin because things were much different with my overall health than my first time around with the medication in 2004. I now had a very difficult to treat autoimmune disorder. I had to stop taking Motrin with helped significantly with my joint and other autoimmune related pain. I had to significantly decrease my intake of Omega 3 fish oils which I not only took for inflammation but was my treatment of choice to help manage mood swings related to taking prednisone. I constantly had to be cautious about my diet because I had started eating healthier and green leafy vegetables were a part of that diet. I had to be strict about making sure I ate the same amount of greens on a consistent basis. I was also restricted on trying alternative medication and herbs to treat my autoimmune disorder because of their potential interaction with Coumadin. To me, it seemed ridiculous that I was taking potent medications like prednisone and narcotics without having the opportunity to try an alternative treatment plan because of Coumadin.

Now I know some of you may be sitting back and thinking that well, you have to do what you have to do, right? Better than the risk dying, right? Because that’s what can happen if one of these blood clots gets out of control. But that’s the thing. These two events were not random events. They could, in my mind, most likely have been prevented. So I started doing a lot of research because at this point, it was starting to become a quality of life issue. It’s easy for a doctor to say: stay on Coumadin for the rest of your life. But at forty-one years old, the rest of your life, is a long life. It is a risk. What I found in my research was that having two blood clotting events is not always a definite for going on lifelong Coumadin therapy. There are people out there who chose not to. Instead, there is the option to stay off Coumadin and then if they find themselves in a high risk situation such as a long plane ride, a hospitalization, or any other situation where they are at high risk to develop a clot, they go on Lovenox injections preventatively.

 I am willing to do that.

I decided to call my hematologist and discuss this with him since my next appointment wasn’t until April and coincidentally I was admitted to the hospital the same day he called me back and could not speak with him. He told my fiance to have me call him back that Friday. I was having gastrointestinal issue related to Sjogren’s and because I had not been eating, my INR was too high. My Coumadin was held for the next four days and at one point, the doctors even considered holding off on doing an endoscopy, a procedure which I very much needed, because of the elevated blood level. I was pretty much done with the whole Coumadin saga at this point.

The day before I was discharged from the hospital, which happened to be Friday, my blood levels stabilized and the hospital doctor wanted to start me back on Coumadin. I also remembered that this was the day that the hematologist was going to be available to talk to me. I called him. I have to admit, I was pretty nervous. I was certain that I was going to get lectured for even considering wanting to come off this medication and as strong as I was in my convictions about this being the right decision for me at this time, I wanted to have a rational and well thought out conversation with the hematologist about the issue.

And I did.

I told him my perspective and he told me his. It ended up that they were really not that different at all. Typically when someone with a genetic clotting disorder has two separate clotting events, the recommendation is that they go on Coumadin for life. But that is a recommendation. It doesn’t mean that all people do it. As far as I know, it also doesn’t account for anyone with heterozygous Factor V Leiden who had one incident on birth control, one incident with Guillain-Barre, and who also has a difficult to manage autoimmune disorder that could really benefit from other treatment that interacts with Coumadin. Because let’s be honest: that’s all just unheard of. Nobody gets all of those disorders in one lifetime. Only I do.

He did acknowledge that he was coming from a very conservative treatment standpoint and as a patient, I have to respect that. As a doctor, he seemed to respect where I was coming from. I even said to him “Do you think I am insane for wanting to do this?” to which his reply was ” Absolutely not.” It was not a conversation in which the doctor told the patient what to do.  I made it clear that my wanting to come off Coumadin was not an impulsive decision but rather a very well thought out one. At this point I had been taking Coumadin for nine months since my last clotting event.

The decision was made that I would stay off the Coumadin and follow up with him at my April appointment. I also agreed that I would be proactive about blood clot prevention. This means that if I am in a high risk situation, I will go on short term Lovenox injections. I will take care to wear special antiembolic stockings if I am not moving around as much as usual and I will not stay sitting or in bed for more than an hour or two without getting up and walking around; except for typical sleeping time or naps. It is going to require effort and diligence because nobody else is going to do it for me, as evidenced by what happened last February. I cannot rely on a pill to keep my blood from clotting anymore.

Now this is all well and good. Fact is, I may get another blood clot anyways. I am well aware of that and to be honest, it scares me a bit right now. But it scares me more to be on Coumadin and recently  be told several times that my levels were high, unpredictable and then have to worry about bleeding. It’s a risk no matter which way I go and right now, I feel that the risk I am taking by staying off the Coumadin, coupled with the significant increase in the quality of life it will give me, is worth it.

This whole experience has opened my eyes to a few things. As a patient, I have choices. Medicine is not black or white. There is a lot of grey. A doctor can make recommendations, even strong ones, but at the end of the day, I am the one who has to live with the consequences of the health care decisions that I make. It doesn’t mean I will always make the right decisions but who is to say that our doctors do either? They are human too. They have the education and expertise to give us the information, but we are the ones that then have to ultimately live with the consequences of the medical treatment that we decide on. Our bodies. Our lives.









































Photo: Courtesy of Google Images

From Medical Crisis To Inspiration

February 16, 2012 / / 26 Comments
“When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile.” ~ Author Unknown

I have so many other topics I would like to blog about rather than my current health issues but I have been blessed by the support of those closest to me wanting to understand exactly what is going on with my recent medical issues. There are people in my life, some new and some old, who have been following my health saga over the past six weeks or so and don’t quite understand what is happening to me physically because it is either ridiculously complex or because they do not know my medical history. Also, there is only so much explaining I can do on Facebook; not that I mind but sometimes it is easier to just put it all together in one place. I don’t expect that everyone wants to read it, but for those of you who do, here it is.

A little background which is important…

When I was twenty-four years old, I was diagnosed with Hodgkin’s Lymphoma which is a type of blood cancer. I was treated with radiation for three months, went into remission and have been fine ever since in regards to the cancer.

About six years later, in 2002, I was diagnosed with a heart condition called supra ventricular tachycardia which means my heart was not beating properly because of a conduction problem in the heart. It was never decided for sure but it is possible the condition was a result of the radiation treatments that I had for the Hodgkin’s Lymphoma. Medications failed to manage the condition and I underwent a heart procedure called a cardiac ablation which surgically fixed the conduction problem with my heart. No further issues.

In 2004, I mysteriously developed a blood clot in my left leg which is called a deep vein thrombosis (DVT). I was a non-smoker but I was overweight and on birth control pills which are high risk factors. However my primary care doctor at the time decided that still seemed a little too unusual so he decided to do some investigating. It was discovered that I had a genetic blood clotting disorder called Factor V Leiden. I was treated for the blood clot in my leg and the decision was made at that time, since I had a milder form of the disease, that I did not need to stay on blood thinners for the rest of my life. I would only need to go on them if I got pregnant, had surgery, was on a long flight, etc. All was well and I rarely ever gave it a second thought.

In 2008, I began to have multiple health issues that I had never had before. I will spare you all the details but basically I was having severe joint pain, dry eyes, mouth, and nose, memory loss, stiffness, extreme fatigue, asthma for the first time in my life, issues with my voice, severe headaches, fluid in my lungs, the list went on and on. I knew something was really wrong with me and I saw at least twenty doctors, trying to get to the bottom of it as it was getting harder and harder to function on a daily basis. I was often dismissed, called a hypochondriac, or just told “I don’t know what is wrong with you.”

I persevered and after seeing my fifth rheumatologist, as I felt strongly that what was going on was autoimmune related, I was diagnosed with an autoimmune illness called Sjogren’s syndrome in August 2011. That one you can Google search if you so choose! The disorder has been called a “cousin” to another autoimmune illness called lupus. It takes the average person seven years to get this diagnosis. Some people get a mild version, some get a more severe version. It would appear that I have gotten the latter. There is no cure and I have been through many trials of steroid pills and some other medications to try and control my symptoms. There is new research being done at this time for new treatments. Around the time of the official diagnosis last August, my symptoms started to progress a bit in terms of my salivary glands malfunctioning and dryness becoming more of an issue. However I was also learning more about how to self manage my symptoms including with diet and alternative treatments such as acupuncture, stress reduction, etc. I was determined to get my illness under control and hopefully get back to work at some point.

Before this past Christmas, I noticed that I was starting to have a lot of pain in my legs that was different than my usual joint pain. It was getting harder and harder to do walks with my dog Molly. Right after Christmas, the pain got to the point where it was difficult to walk at all. My walking was unsteady and I was stumbling at times. The pain was the worse I had ever known. It was thought to be nerve related pain and I was started on steroid pills at a high dose at home until I could see my rheumatologist. By the time I saw her, I was having extreme weakness in my legs and arms, making the most basic of tasks like showering very difficult. I also began to have tremors and severe weakness in my arms making driving and other tasks difficult as well. I was struggling with writing and typing as I kept mixing up my words and letters, similar to someone with dyslexia and my short term memory was impaired. Scary stuff.

My very awesome rheumatologist took this all very seriously and felt that I may have neurological involvement from the Sjogren’s syndrome which can happen and is not all that rare from what she told me.  I had an MRI of my brain that was normal, which does not mean much in relation to the Sjogren’s, but does rule out other freaky stuff like brain tumors, etc. She decided that since I had a little improvement with the steroid pills, we should try very large doses of IV steroids at the hospital by admitting me for a few hours, giving me the infusion, and sending me home. The first infusion helped my walking and writing/typing significantly so we scheduled several more to try and combat the rest of the symptoms.

The side effects from these steroids, both the infusions and pills at home, are something I cannot even begin to adequately describe. Everyone reacts differently but my main issues have been not sleeping (I was sleeping 2-3 hrs a night WITH sleeping medicine), nausea, reflux, severe headaches, and mood changes that scare the crap out of me sometimes. After six weeks of all these steroids, I think I have forgotten what it is like to truly feel like myself. But I know the neurological stuff is a big deal and it is critical to stop its progression before it does permanent damage; so I just set my mind to the fact that I will get through it as best as I can.

My second infusion was this past Friday. I had the same side effects as the first infusion two weeks prior, however I began to have heart palpitations that Friday night and by Sunday morning I knew I had to call someone. I thought it was related to the steroids because I am a nurse and well, I know these things. But keep in mind, I also had a history in 2002 of heart issues and it was something I didn’t think I should mess with. The on-call rheumatologist thought I should go to a local ER and get an EKG to determine what was going on and if it was something that needed to be treated or if I had to ride it out. The EKG was essentially normal except for some occasional abnormal fast heartbeats thought to be related to the steroids and some fluctuations in my blood pressure.

However one of my labs came back abnormal indicating a POSSIBILITY that I may have a blood clot somewhere. Blood clots can also cause heart palpitations and other heart issues. The way to determine for sure if you have a blood clot in your lung is to do a CT scan of the lungs while injecting contrast through an IV to light up the lungs. I did have a blood clot all those years ago and that blood clotting disorder as well so it was important to make sure there was no blood clot.. As bad luck would have it, I am allergic to the contrast so they had to admit me to the hospital to give me a few doses of medications to prevent the allergic reaction since I HAD to have this scan done. Several docs at the hospital really thought the heart palpitations were related to the massive doses of steroids I was getting but they really had to follow through and know for sure so they could justify safely sending me home. I was admitted to a cardiac telemetry unit. They started giving me blood thinner injections just in case…standard protocol

About 10pm that night, after I had the CT scan done, my very kind night nurse came in and told me that despite the odds, they DID find two small pulmonary embolism (blood clots) in my lungs. Ridiculously scary I have to tell you. Does not pay to be a nurse at times like this because you know the worse case scenarios. They said I should be OK with the blood thinners but it was good that I came in with the heart palpitations because I might have avoided a larger, fatal blood clot. I just cried.

The problem is they do not know if the clots are from having this clotting disorder or from my Sjogren’s syndrome. What it does do is complicate things greatly as I may need to stay on blood thinners the rest of my life which not only carries risks with it but affects different aspects of my life like my diet, other medications, etc. The hospital sent me home on blood thinner injections which frankly suck (much easier to give them to a patient than yourself!) and I have to start getting my blood work monitored to make sure that my blood is not too thin and not too thick; as either extreme is not good. My primary care doctor today was incredible though and we have a plan for the next week or so. I will be following up with a hematologist hopefully very soon to figure out more what is going on and if there is an autoimmune component to all of this.

The good news is that my neurological symptoms have improved a lot more since that second infusion on Friday but now my rheumatologist and I have to decide about whether we are going to risk another steroid infusion this Friday. We both feel that I have been through so much that let’s just finish the job and see how stable we can get me neurologically; as long as we can do it safely. We will make that decision together tomorrow depending on how my heart is doing. Meanwhile I am scheduled to see a neurologist next week as well as my pulmonologist. I am taking one hour and one day at a time; making sure that the priorities are getting to appointments, keeping track of what is going on, staying on my medication schedule and taking care of my basic needs such as showering and eating.

I sit back as I am writing this and I realize it is good to put it all down. Not because I want people to feel sorry for me but because I know people are concerned and it is a complicated situation to understand. Writing it down has made me realize that I AM as strong as those close to me have told me I am. I think it would be easy for me to sit here and curse God (which yes, I have already done) and ask when is enough enough? But I know there are so many people who endure so much more than I do. Granted, I do think I got the bad luck of the draw in the “illnesses you cannot prevent department”; but this is my life. My life where I have learned so much about the world, myself, and other people ~ topics that make for some great future blogs!

My life where at some point, hopefully in the next week, being able to get outside in the fresh air and sunshine with Molly will far outweigh the importance of what this person or that person thinks about me.

My life where I grasp tighter more opportunities to let those closest to me how important they are in case I never get another chance to do so.

My life where I have discovered that my ability to make a small difference in someone else’s day with either a kind word or a smile far outweighs the drama that other people in this world may produce.

My life where my priorities have shifted so much that I no longer care about how perfect my house or yard look because I am too busy appreciating having the love of my life holding my hand in a hospital room; his love nourishing my soul with every squeeze and every gentle caress of my hair.

So I guess right now, at this very moment, my life is looking pretty good to me….

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