Tag Archives: blood thinners

Same ole same ole

Same ole story my back STILL hasn’t fused and no one knows why! I am going to have a CT scan done at the end of the month to figure out how much bone has grown, but for a fusion that should have completed in 6 months and it’s been 24 months (almost 25 months) to say I’m disappointed would be a little bit of an understatement. I think the best part now is that we have to watch for metal fatigue…yes that means we have to watch to make sure the metal that was implanted last year doesn’t break. Oh joy! As if I don’t have enough on my plate let me worry about if they are going to need a soldering iron too….

I will be seeing the hematologist soon and two things will happen at that appointment a) we will discuss removal of the IVC filter because everyone is pretty confident I am not going to have some massive deadly blood clot and b) genetic testing to see which genetic clotting disorder I possibly have. Which I am almost coming up to my 1 year anniversary of my first massive deadly all the doctors told me I should be 6 feet in the ground date so the fact that I’m still walking and talking is a HUGE plus! I mean I rather enjoy being a pain in everyone’s BUTT! I said that to one of my doctor’s recently and all he could do was laugh and shake his head. No other response but laughter….I think that’s a good sign…right?

Everyone is happy I survived especially me! Last night someone called me by my deceased sister’s name and I corrected them. They looked at me and apologized and I was teasing them about that if I was her we would really have a problem because I know it’s getting close to Halloween…but we’re not THAT close yet! Then I said if they wanted to go pay her a visit she has a lovely view of the river! The person laughed and said it was good to know I hadn’t lost my sense of humor (they had not seen me recently, and knew I had been having some serious medical issues).

I still think we need to start a betting pool on if my neck is going to fuse before my back! I mean the back has a 2 year lead on my neck, but at the rate it is going, my neck might actually fuse first! We could do a 50/50 split and the other 50 could go towards my medical bills! (I am of course just kidding!) It will be interesting to see which heals first my neck or my back, in some ways I think my neck will heal first because I am skinnier, and I think my overall health is better right now. Sure I am on the blood thinners, but I think the difference in the weight will make a huge difference in the outcome (as much as I hate to say it).

Which speaking of weight yesterday I put on a women’s XL shirt for the first time in years, and I was super excited. I am really working hard at taking off the excess pounds slowly and healthy. I am seeing the improvements, and I also know from doing all the physical therapy that I am also building up the muscle mass as well so I am not just losing the weight I am also building up muscle which will be important for the long term!

Crazy

Why be normal? I mean normal is overrated right? This week has been a lot of crazy feelings and wanting to jump through the phone. There has been a lot of turmoil from one person not doing what they said they were going to do 3 weeks ago and it blew up in my face this week. So I spent the majority of this week scrambling to try and get it fixed.

Of course on the upside of my week Mom took me clothes shopping last week and I got to wear shirts that actually fit and that made me feel good. I have been losing so much weight that the clothes that I currently own are getting bigger and bigger on me. Mom told me it was time to get some shirts that fit so we can start donating the biggest clothes again. I had already dumped my closet of one size and soon I will be ready to do another dump. I am down about 120lbs. I am feeling proud of my accomplishment. I am over halfway to my goal weight that was recently given to me by my doctor.

I just wish my pain levels would go down, even a little! That first year the stupid doctor who will not be named blamed my weight for my pain, well guess what doc? I’m a lot lighter and I am still in pain. It’s also fall which means the temperatures are going to start dropping and while I welcome the cooler temperatures I remember how my hardware didn’t like the cold last year!

I am working hard in physical therapy to build up my muscles as I continue to lose the weight so I know that I have a healthy body. I am eating healthier, drinking lots of water and taking care of me. Next month we are going to look into doing the genetic testing for blood clots and hopefully find out if I have a genetic disposition for blood clots which several of my doctors and myself believe I do. While that’s not the best thing in the world I would rather know for sure than guess. Having a massive blood clot was one of the scariest moments in my life and I just want to know if that could happen again. Of course just because I have a disorder doesn’t mean it would happen again, it just means there is the possibility. Also knowing we can take different precautions so the likelihood of a repeat is less.

When you have so many major medical problems its about knowledge and prevention. You come to understand that things in life are uncertain and you do your best to prevent what you know could happen. You don’t stop living your life, you just make subtle changes to try and prevent things. I stopped eating high vitamin K foods while I’m on the blood thinners because it makes life easier right now. Once I’m off blood thinners I probably will be more aware of how I eat high vitamin K foods knowing they thicken the blood.

Life is short. This morning we were laughing and giggle and I was thinking about how 3 years ago we were getting ready to be married. Now wifey is stuck with me and has stood by my side through all this stuff. She’s a good egg. I’m blessed. We have a good life. It’s crazy, it’s silly and it’s full of laughs.

Emotions, Post Surgery and Restlessness

Last year I had my low back fused, and then 1 month to the day I had a saddle pulmonary embolism that according to the doctors should have killed me. So this year when I had my neck fused I’ll be honest the first 30 days I was holding my breath some. We did the blood thinner shots right after surgery, we did the IVC filter and I am back on blood thinners until the filter comes out probably in October. All that being said, I still held by breath until we hit that 30 day mark and I finally felt like I could breath again.

This post surgery recovery seems to be going more smoothly, and I don’t know if its because it’s so much higher that it has not limited my mobility in the same way that the low back did, or if it’s because this is my 4th major surgery in 2 years so I’m just so used to it that I’m a pro now. In all honesty…it’s probably a combination of the two. I never thought I would become a pro at having major surgeries and it’s not resume material, but you roll with the punches, and keep a good sense of humor about life! I know I haven’t posted in almost two weeks which is unusual for me, and I think I wrote six draft posts and trashed all of them.

I just have been nervous the closer we got to that thirty day mark, a bit restless because we were getting to that thirty day mark and no matter how much you tell yourself this time will be different there is always that small voice in the back of your head to remind you of last time. Every morning I would pass the box of empty shots and think to myself this time WAS different. We learned a very valuable lesson and you ARE fine.

It’s hard when you have had that kind of experience and then you have to turn around and in less than a year put yourself in almost the same circumstances that you were in when you had medical professionals tell you that you should be dead. I am the first one to tell you I am very glad to be alive. I know I am blessed beyond words to be alive. The more people that hear my story the more I realize how blessed I am, we have met several people over this last year who have lost loved ones to saddle pulmonary embolisms. They are no joke. I thank God everyday that I am alive.

I am coming up to the 1 year mark for my 2nd and 3rd surgeries (they were done on the same day) and I think that is why I am so restless. I know that was the event that started the dominoes falling. I know a lot more now then I knew then and we learned from everything that happened. I have a really weird body!

Hopefully with more testing we’ll get some answers on what is going on and why stuff keeps happening. I think we’re headed in the right direction and then maybe I won’t think my body is so weird, it will just be my personality!

NAPS!

Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!

I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.

I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!

Spoiled kitty!

Creme (the cat) is spoiled rotten. We all know this, we all accept this, we all accept that we have played a role in her becoming this way. This morning I was in the bathroom giving myself a blood thinner shot in front of the bathroom mirror and she decided that she wanted fresh water from the sink.

CremeSink

Well I was using the mirror so I was not so happy when she jumped up on the sink and then tried to nuzzle the hand that was busy giving myself the blood thinner shot! NO KITTY! GET DOWN CREME! MOMMY IS BUSY!! She was not happy that I was upset because a) all she wanted was some love b) all she wanted was some fresh water from the sink c) she did nothing wrong. So she hopped down with a disgruntled meow and laid in the kitchen floor glaring at me as I finished my shot. She wanted to make sure that I knew of her displeasure at being kicked out of the bathroom.

I realize that she doesn’t understand that I had a sharp object in my hand and her nuzzling my hand was not good for me, but sometimes you just gotta do what is good for you. She’ll get fresh water later. The Earth does not revolve around her, much to her dismay. I now know why the Egyptians worshiped cats, I mean any cat owner I think understands when they glare at you…you know they mean business!

Creme will be 9 this year so she is starting to get up there in age, but she is a happy cat with quite the personality. She definitely makes her presence known to us! She also makes sure that I am well taken care of in my recovery period after surgery. Creme who is not normally a lap cat becomes more of a lap cat right after I’ve had surgery and you can often find her curled up beside me on the couch. She definitely enjoys my company whether she will admit that or not I can’t say, but she definitely does enjoy being around me.

 

Holy allergic reaction BATMAN!

So I had a horrible reaction to the steri strips the surgeon used to close my incision, so yesterday I called and the nurse told me to carefully remove the steri strips. I started taking benedryl and this morning my skin looked a LOT better already! So I am hoping that another day of benedryl will make my skin start looking more pale looking (aka normal) verses the fire engine red it looks now. Of course once it starts calming down I’ll have to put some antibiotic cream ¬†where my skin pulled off with the steri strip.

So the good news in all of this is the incision itself looks awesome! It is nice and closed and should finish healing nicely! I just wish I didn’t have the allergic reaction on top of it! I also am going to tell the surgeon no more steri strips because this reaction was so bad this year that if there are any more surgeries we’re going to have to think of something else.

Besides the allergic reaction healing is going pretty well. I am trying to get used to how my throat feels, the first few days I felt like I had a lump in it, as the swelling as gone down the lump as gotten smaller! The biggest challenge is not to try and look DOWN! You never think about how much you look down until you can’t!

I was talking with Mom about all the metal in my body now and I am racking up quite the list! Every time they ask I start at the head and make my way down and the nurse has to write fast to keep up with me! That is the life with chronic illness! I have to start with the head and move down or else I will forget something, I find that is the easiest way for me to remember everything. I was going over everything and my mother in law told my wife that I am almost as bad as my father in law!

I just keep reminding myself to take life one day at a time. I keep taking one challenge at a time. I just have to keep the big picture in mind. I think life gives you challenges and you just have to roll with the punches and tell jokes.

High Fiber Foods + Coumadin = A Delicate Balance

I am obese. I have been working on losing weight since 2014. I found a high fiber meal plan/lifestyle that I LOVE. I have been very successful at losing the weight on said meal plan, THEN comes deadly blood clot in October 2015!!!! *Que super dramatic music* So it’s been a bit of a struggle losing weight since October. I am going to be really honest because a lot of the foods that I got really accustomed to eating like spinach, kale, spring mixed salads ALLL are high Vitamin K foods that you have to really watch when you take Coumadin.

So let me explain a little bit about how they get rid of blood clots, so the body will naturally get rid of a blood clot by breaking it down. Sometimes doctors will try and break up a blood clot, but in my case they felt like trying to break up my massive blood clot would kill me, or cause me to stroke so they decided that giving me blood thinners and seeing if my body could naturally break up the clot would be the safest choice. So they put me on Coumadin which is rat poison. Yes, I am not kidding you, scientist found that by giving rats Coumadin it thinned their blood until they bled out, hence why you have to have regular blood checks to make sure your blood is not too thin!

Vitamin K and Coumadin are enemies (of sorts) because Vitamin K reverses the effects of Coumadin! Which is why you have to watch what foods you are eating that are high in Vitamin K to make sure you are not accidentally making your blood too thick again. For every patient depending on condition there are two basic ranges for INR (International Normalized Ratio) 2.0-3.0 or 2.5-3.5. Now some people might have a bit different based on their own medical needs but those are the two most common ranges.

So I get this massive blood clot and I’m told to stop eating Vitamin K foods until we can get my INR up, so I have to stop eating broccoli, spinach, kale, spring mix, brussel sprouts, greens (collard, turnip, mustard), and many other green foods that I had been packing my diet with! So I also know now that those foods thicken your blood naturally (just saying!) So how am I going to keep up my high fiber diet without eating those foods?

So there are LOTS of other sources of high fiber like beans, fruits, OTHER veggies! So I started looking at foods like sweet potatoes, beans (I eat a lot of beans now!), fruits (in moderation because of their higher sugar content), and because we are gluten free I eat quinoa. So it is still possible to eat a high fiber diet when you are on blood thinners, you just have to get a bit creative at times! I will also do things like add peppers to quinoa and beans (think rice and beans but quinoa has more fiber than rice!). Add some extra fiber to foods by adding in more vegetables to what you are making, adding in white beans to dishes a lot of times works because white beans will soak up the flavor of whatever you are cooking. I am really happy its summer again because there are lots of fresh foods at the local Farmer’s Markets! What’s better than going and helping out the local farmers?

So next time you are making your favorite dish think about ways you could add a bit more fiber to it, you might be surprised what you come up with!