Tag Archives: INR

Let’s try Plan C?

So in order to get my IVC filter out I had to come off my blood thinners, go on a Lovonox bridge, and then be on a combo of my regular blood thinners and Lovonox shots…easy right? So I go back to the clinic to be checked and my INR was LOW. As in risk of developing a blood clot low. *Insert unhappy face* So now I’m looking at the pharmacist and she’s looking at me trying to figure out what to do. Well the first thing is to call my hematologist’s office to get a re-authorization for the Lovonox shots because OF COURSE I am out of those. Then the question is how much of a booster dose(s) to give me of my normal blood thinners to give me and when to re-check. Well then the 2nd problem comes in…this weekend is Memorial Day which means the clinic is closed Friday and Monday for the holiday. So we couldn’t check me in the right time frame.

Blood thinners are funny things. The way they work is they slow the time it takes for your blood to clot. So it takes a couple of days for a booster dose to take effect. So if they check me too soon and then up my dose they could then give me too high of a dose, but if they wait too long then I could stay low for too long and risk developing a blood clot which is the whole reason I am on the blood thinners in the first place. If I still had my IVC filter in we wouldn’t be as worried because I would have that protection there, but it was just taken out! Oh isn’t this Murphy’s law?

So the hematologist’s office said for me to come in their office for a check on Friday so we could see where I am at. So we got everything straightened out, but it’s frustrating to say the least! I really wanted things to be a-okay! I mean I really didn’t want to have to continue giving myself shots. I mean I am pretty sure no one voluntarily gives themselves shots unless they have to!

I know my INR will come back up, it’s just taking a little longer than normal. I figure this is just another life lesson I am supposed to be learning, I mean there are worse things in life. Of course if I have any signs of clots I am to go directly to the ER DO NOT pass Go and Collect $200!

Vampire

 

Black, blue and pale all over….

I don’t mind giving myself shots. Sure I would much rather to NOT have to give myself blood thinner shots, I mean I’m not no one readily signs up to give themselves shots..okay well there might be a small fraction of the population who want to, but I think it’s safe to say MOST don’t want to give themselves shots. The issue with the blood thinner shots is you have to give them on your stomach which means bruising and I’m so pale that it leaves a nice black and blue mark there.

Of course since we had my INR ratio at a nice even number my blood was nice and thin that means nice beautiful bruises. Since I am so pale that mean they look even more black and blue than I’m sure someone with a more tan coloring would look. This morning I announced very proudly how many I had given myself and how many I had left with a “but who’s counting” remark at the end of the statement. I mean I’m not trying to hurry this process at all..right?

I will be glad when these shots are over because that means two things a) the filter has been successfully removed and b) my INR has returned to a nice level again. If you had asked me 2 years ago if I would have this much medical knowledge I would have raised an eyebrow, then furrowed my brows and said no and then probably squinted at you. Now I shrug my shoulders and say c’est la vie which is French for such is life, shake my head and tell some quip or joke and move the conversation into a much more light hearted direction.

I have had a lot dumped in my lap, but I try not to let it weigh me down. I make jokes where I can, and brush the rest of it off. It’s not easy. There are times when I want to sit in the corner and cry and give up. I just have learned that I can’t give up. I have to shake it all off and keep moving. I can’t give in and humor has been my shield.

I have also learned that by telling my story I have helped others not repeat my mistakes. I have helped others get medical treatment when they needed it. I will be the first one to admit I am stubborn. I don’t particularly like doctors, doctor’s offices or hospitals. I will procrastinate going, but I am getting better about getting help faster. I have learned that you can’t always wait, it can be life or death. Waiting can kill. I am blessed that I have a good medical team who helps me make good decisions. Unfortunately there are times that there isn’t a great decision to be made. The other day we had a situation where there really isn’t anything that can be done besides just treat the symptoms for now.

I have learned to be a little more patient and be an advocate. I have also learned at the end of the day I know my body the best. I know what is going on the best and I have to speak up for myself. That has been the most challenging lesson of all. Learning how to speak up in the right ways.

SerenityPrayer

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!

Heart, lungs, fingers, toes?

So cardiology check, lung check, finger prick, I mean I feel like we should all be singing head, shoulder, knees and toes…knees and toes……

Seriously! Don’t have surgery! No…if you need surgery like I do, HAVE SURGERY! Just don’t have surgery if you don’t need it because it’s a pain in the butt all the appointments you need! Well the first time I didn’t need so many appointments, it’s just now that I’m so broken I need this many! I am me healthy as we put it now!

At least everything is checking out and I am still cleared for surgery, which is always good when you are this close to surgery the last thing you need is to be told you have an issue. So we are running full steam AHEAD!

I am staying on top of everything to make sure everyone is on the same page which is always my LEAST favorite thing to do, I hate playing the train conductor, but so often have to because I am beautifully…COMPLICATED! So many trains, so many stations and trying to get everything organized and keep everything on time!

I will be glad when surgery is done and I can spend some time resting! I doubt I will rest a lot, but a girl can dream right?

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!