DVT and PEs My Diagnosis Story

DVT and PEs Diagnosis

When I was 25, just after MiniMes 1st birthday and FanGirls 6th birthday I started having a terrible pain in my  left leg, right by my groin.  It was a terrible stabbing pain.  I took a tip to the Urgent care to to have it checked out.  The doctor did a quick look over and diagnosed me with sciatica.  He sent me home and told me to take a hot bath.  So I went home and took a hot bath, my left leg looked purple and it was feeling cold, but the bath warmed me up.  In the next couple of days the pain got worse and worse.  I tried massaging it, and more baths and lots of ibuprofen.  As I know know I am incredibly lucky that massaging it didn’t kill me.

A few days later my mom and I took a trip to the thrift store, we walked around and looked at the goodies.  But then my leg pain became unbearable, I told my mom I was going to head to the car.  I got in the car and propped my leg up on the dashboard.  It was swollen to twice its normal size, my jeans looked like they were going to burst open.  When mom got back to the care I told her we had to go back to urgent care because it was getting worse.  We drove down to urgent care.  It was a different doctor this time, I explained what happened, he tool one look at my leg and said “You need to go to the ER RIGHT NOW!!  Don’t make any stops, get there as quick as you can. Tell them I think you have a blood clot.”  A blood clot?  My grandmother had them when she was in her 60s from traveling, but why would I?

I thought he was crazy, but we drove straight to the ER.  At the check in desk I told them what the Urgent Care Dr. had said they ran to get me a wheel chair and took me straight back no paperwork, not insurance nothing.  They brought in an ultrasound machine and took an ultrasound of my leg.  A few minutes later they came back in I had a blood clot!  It was a deep vein thrombosis or DVT it was huge, it went from my ankle up to my groin.  Then they took me in for chest x-rays and then for a ct scan with contrast.  Then they came back with “You also have Pulmonary Embolisms (or PEs) you have showers of them in both lungs.  You are so lucky to be alive”.

They then admitted me.  I was really unsure what was going on, and how serious it really was.  Then they gave me a catheter and told me I was not allowed to get out of bed at all.  They put me on  Heparin (a blood thinner) and told me I would be there for at least a week. All I could think about was my kids.  I was still breastfeeding MiniMe, and FanGirl was just confused.  It was flu season so the hospital wouldn’t even allow my kids in to see me.  Thankfully my mom was living with me at the time and she and hubs (though we weren’t married at the time or living together) took on the monstrous task of weaning MiniMe.  Because of course with all of the meds I was on, I couldn’t pump anything for her.

The next day, they decided they needed to remove the DVT, so I had to go in and have an IFV filter put into my chest.  This was to catch any clots that broke off during the procedure, so no more went into my lungs or my heart.  They went in through my carotid artery to place it.  That landed me in ICU.  I wouldn’t stop bleeding.  They couldn’t glue it shut because I was bleeding so much the glue couldn’t dry.  I thought I was going to die that night.  I just kept thinking of my kids and I told myself I wouldn’t die, I would survive this.  In the end the nurses just started taking turns standing there putting pressure on it.  It finally stopped  Hours later. I was in ICU for 2 days.  When they decided I was stable enough to be moved down to the stroke floor, they did the surgery to remove the DVT.  They gave me what is called “twilight sleep” I can’t recall the real name for it.  I remembered my grandma had told me that is what they gave her when she gave birth to my dad.

After they removed the DVT my leg shrank back to its normal size, the proper color returned, and I was taken off strict bed rest (meaning I was allowed to get up and walk the 4 feel to the bathroom).  Then they really started to go over what what going on and why it was happening.  I had to answer the gambit of questions.  Are you on birth control? I have and IUD.  Were you on the pill? No Have you ever? No. Have you recently traveled? No. Do you smoke? No. never have. DO you drink? No. Have you recently had a baby? A year ago.  Is there a family history of blood clots? Yes my grandmother. How old was she? in her 60’s.  Oh.  So they went through and did genetic testing and it all came back negative.  The only thing that was found was that it was possible that where my veins overlapped, the one on top was putting pressure on the bottom one.  So they put in a stint and called my clots a fluke.  After 10 days in hospital I was finally therapeutic on my medication and I was sent home.

I was on blood thinners for a year.  Then my hematologist checked and all of the clots were clear so he took me off my blood thinners.  It was scary but I was ready to put it all behind me.  My of the recovery was fairly quick other than I was winded very easily, and when I’m stressed I get terrible pain in my chest.  But life resumed as normal pretty quickly.  I was now aware of the signs of a DVT and PE (even though I never had any symptoms of my PEs).  I was told if I ever had any symptoms again to go straight to the ER.

Then 3 years later, almost exactly 4 years from my DVT and PE.  I was working and feeling so stressed out, my chest started hurting (which was normal these days) but then I found it was getting really hard to breathe.  I was just getting over a cold and I was afraid it was turning to pneumonia.  So I went to the ER, told them my symptoms then I asked them to check me for PEs.  The nurse told me I was “too young” something I am told all the time.  I told him I have a history of blood clots so they HAVE to check me.  He said he bet it was just pneumonia, I told him I hoped he was right.  They checked me.  The nurse came back with a shocked look on his face and said “OMG.  You were right!  You DO have PEs! MASSIVE ones in BOTH lungs.”

So I was admitted with PEs and possibly another DVT, I’m not sure on that one I had some nurses tell me I had a DVT others did not.  SO I’m unclear. I’m trying to get my medical records now to  find out exactly.  I was in hospital for a week on Heparin.  This time around I did not have insurance as I had just started back to work.  So I was told every day by the horrible doctor “Well if you had insurance we could send you home with Lovenox, but you can’t afford it so you have to stay here.”  After 7 days of this my Warfarin became therapeutic.  Then I was sent home.  I then was able to find out that the Lovenox shots would have only cost me $1,050.  Which was easily affordable.  Instead I am left with over $100,000 in hospital bills that I can’t afford.  So on top of my physical health suffering my stress is through the roof because I have this HUGE debt hanging over my head that I shouldn’t even have.  Because some doctor assumed I couldn’t afford medication.

This time around my recovery was HARD.  I am 5 years out from these last clots and I am still recovering, I have developed chronic pain and fatigue as well as other chronic issues as a result.  I have a new normal I have come to learn to live with.  I will be writing a follow up post all about recovery.

I can not work a “regular” job anymore due to my chronic problems, so I started my own business, so I am able to work around my health an rest when needed. I had wanted to start my own business for a long time, and it became a necessity after this. I look at that as my silver lining. It was the kick in the pants I needed.

4 thoughts on “DVT and PEs My Diagnosis Story

  • July 27, 2017 at 4:57 am

    Wow, this situation for you is so scary! I cannot imagine all of that and with an infant needing to wean. You are amazing! I look forward to reading your follow up.

    • July 27, 2017 at 5:21 am

      Thank you so much. It is definately scary and very hard. It’s true what they say, what doesn’t kill you makes you stronger. I never knew how strong I was until this.

  • July 27, 2017 at 8:09 pm

    This is so scary! I’m happy you’re ok! It must be so hard, but you’re doing great!

    • July 27, 2017 at 8:25 pm

      Thank you! It is hard, but it’s true what they say, what doesn’t kill us makes us stronger! 😊

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