Just Another Step

Today marks another day in recovery for me. I had minor surgery a few days ago. Really, it’s minor.

Yet, somehow it doesn’t feel minor.

My health has been the main reason for this blog. To consider what has been going on with me and try to explore the realties of my  new life. These pulmonary embolisms have totally changed my life. I can’t even express how they have effected me and my entire family. But here’s the hard truth, the stark reality, I am so thankful I am still alive! More often then not you don’t survive a PE.

Since my third PE last fall, I’ve had  a medication change. I am now on Lovenox for life. Coumadin just wasn’t effective for me. I just couldn’t get therapautic. Lovenox is a low dose heparin that I inject into myself twice daily. It works differently within the body than Coumadin does. Each anticoagulant comes with their own risks and concerns. Nothing is ever fail proof. One of the risks of Lovenox is a higher chance of internal bleeding, as well as not being able to stop the bleeding once it starts.

It was the reason for my recent surgery.

It’s been about 10 months of internal bleeding now and I am ready for it to stop! So although the surgery was minor, it’s not minor to me at all, it’s major to me. For it can set me on a new road for recovery. If my internal bleeding finally gets under control, then perhaps the anemia will stop and the fatigue will subside.

I just have to be patient and take it one step at a time. And this?

It’s just another step.

2 Replies to “Just Another Step”

  1. Thinking of you in your recovery from the surgery and new treatment plan. I can so realte to you in that even the minor things are no longer minor after a PE. And I just had one. I know it has been discussed for me to be on Arixtra injections for life, but there are no long term studies about it so far. I was having the worst time getting a therapeutic level of Coumadin. My doctor found some new(er) research (there have been several studies from wht I understand) where I now take Vitamin K with my Coumadin. It’s been helping. My INR levels are stable for the first time since, well, I got out of the hospital a year ago. The Vit K keeps a consistent level in your blood and acts like a seesaw the Coumadin to help it stabilize. I am interested to see how it does long therm. I have never had internal bleeding, but I do worry about that. I don’t know about you, but I do feel like the treatments that are out there are sub-par for us!! I don’t know if it is still too new or there just haven’t been any better alternatives, you know. Thinking of you and I’ll be following your recovery too. Take care.

  2. Sara, I apologize for not returning a reply. I was overwhelmed with life in the summertime, family gathered around and trying to recover from my surgery. I would love to say I have a new treatment plan, but sadly my options have all dried up. Having a PE is life changing, challenging and until you go through it, you just don’t understand the reality of what that means.

    I was on Coumidin for 3 years or so, I was never able to get therapeutic. When I was, I threw a few more clots even at a good level. I was on daily INR runs, I think in those 3 years, I might have gone maybe just a few weeks clear with only one INR. All the rest of the time, it was daily or weekly INR checks. The stress when I wasn’t therapeutic was enough, never mind having more clots come my way! I went all over the place on the meds to adjust until finally they put me on Lovenox for life. I had just read recently about Coumadin with Vitamin K shots. I would be interested in that research as the side effects of Lovenox are not fun either. The internal bleeding after 9 months was hopefully addressed by this surgery, we will see. With the Lovenox I am losing hair big time. I do find my anxiety levels are less since I am pretty secure on this treatment. I did have to head into the hospital in August and the ER doc just looked at me and said, if it’s another PE, off to surgery you go.

    As to treatment plans, I understand that there is just not enough research funds. Did you know more women die from blood clots every year than breast cancer? Yet, the money goes elsewhere. None of it is wanted, who wants to be sick?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: