A Survivor Speaks: PE, Take Two by Juli Keller

I have suffered two Pulmonary Embolism (PE) events. The first, in April of 2003, was about 4 weeks after birthing my son. That evening. I went from trouble breathing to pain in my lower right side and back. The next day, I went to an urgent care physician who diagnosed me with a pulled muscle and put me on pain killers. That was that and after two weeks on painkillers, all seemed better, or so I thought, until my body decided to replay the previous occurring events six years later.

It had been a week since I felt like I had pulled a muscle in my right side/lower back again. As the day went on, I developed a very random cough. I did not have chest congestion or a tickle in my throat, just a spontaneous and annoying cough. I didn’t feel “bad” at the time, but for some reason I started writing instructions for my co-workers on how to finish a couple of my projects. Little did I know then, I was experiencing what is called a “sense of impending doom,” a common, but little known, symptom of PE. That night I went to bed but woke up in the middle of the night with one thought on my mind. . . .Would I know if I was dying? As I pondered this thought I became short of breath and had more pain in my back.

In the morning, I went to to my Primary Care Physician (PCP) and was diagnosed with bronchitis/borderline pneumonia. I was given a prescription for pills and an inhaler. My body instantly reacted to the inhaler, but not in a positive way! I was certain I was going into Cardiac Arrest. After doubling over, I mustard up some composure and went outside to catch my breath, but I couldn’t. I don’t remember this part, but my kids say I crawled up the steps and on to my bed which is when they decided to make the call to 9-1-1.

At 11:30 in the evening, ER doctors were going to release me with a diagnosis of pneumonia, but since they had me hooked up to an IV already, the attending physician decided to take a closer look at the pneumonia area by doing a CT Scan with contrast. Less than five minutes later, I had about six doctors and nurses at my side; one injecting me in the stomach and the others hooking me up to what seemed like a million machines. I was told shortly after mid-night on April 1, 2009 that I had suffered multiple (too many clots to count) PEs in my right lung and that they had to do what they could to dissolve the clots as soon as possible to avoid killing off more of my lung…. More of my lung, what?!  This is when they discovered my last pulled muscle in 2003 was also a PE event. I don’t remember much of my hospital stay other than going in and out on people in the middle of conversations (I felt so rude). The weeks to follow were dreadful – doctor appointments, not being able to walk more than a couple of feet without feeling like I was going to pass out and major guilt for surviving after researching statistics. I couldn’t understand what made me a better mother than others who lost their lives….they should still be here for their kids too and with that, PTSD kicked in.

My message is this:  Listen to your body and mind. Demand a CT with Contrast* if you have symptoms of PE. I should have died in the hospital that night and had they sent me home, I would have died in my sleep that night. A CT with Contrast Scan saved my life and could save yours as well.

Life today is not often a walk in the park. Like most other PE survivors, I have both good and bad days. At 42 years old, that is an awful truth to voice. I have days where I can barely function, but find a way to push on through, not at 100%, but I make it (and at the end of those days I ask myself how the hell did I just pull that off?). I take on my bad days silently without much complaining because I do not want pity, I do not want people to be afraid of me, and I also know that most people do not understand or accept the continued challenges we survivors face. I have learned to live with the guilt of survival, but it still resides within me.

As for the good days, thank God for them! I use them to the fullest of my ability to take in and enjoy everything and everyone around me. My kids have always been patient with my new ways of life and my son (the youngest of them, now 11, who gets blamed by his sisters as my favorite) is so in tune with my days that it scares me a little. He thanks me for almost everything; including his dinner every night, he offers me the last of everything and on those bad days he is right there kissing me, hugging me, asking if I need anything and if I will be okay. He reminds me often that he loves me and sincerely apologizes for making tough days tougher, if he has. So much for such a young soul to deal with, but he is truly an amazing light in my life, he is definitely my favorite. . .(and only) son. 😉

The fact is few will care enough to notice us, most will not try to understand us and some will even slight us, but we are survivors and when all else fails we have each other.

*Editor’s Note: A computed tomography (CT) scan uses X-rays to make detailed pictures of structures inside of the body and is most commonly performed at the hospital (versus a doctor’s office or Urgent Care setting). In some cases, a dye called contrast material may be used, thus resulting in a CT with Contrast. The dye is administered usually via IV or mouth and makes structures and organs, such as the chest, lungs, abdomen or legs, easier to see on the CT pictures.
Thank you, Juli, for sharing your story with BCRN! Connect with Juli in the comments below.

 

Comments

  1. I know all too well the ‘feeling of doom’, it really is quite spectacular! I had been to see my GP with sob and cough and he put me on a nebuliser assuming asthma. The neb didn’t help much and after 3 visits and a worsening condition I had a chest xray which showed ‘mass’. My referral to a consultant and consequent CT scan happened within a week!.
    The scan showed multiple clots and pneumonia, and I spent 2 weeks in hospital. During the early stages I KNEW that I had something seriously wrong with me. I ordered a new memory foam mattress and bedding. I ordered new PJ’s and I packed a bag for the hospital! Further, I typed out a living will and finance will onto my laptop and told my daughter it was there. Although I joked about this afterwards, I know my body was telling me to listen to the clues – I was dying and needed an ambulance. There were times when I should have called for one, but was too embarrassed.
    I am just so grateful that my GP took me seriously and referred me, just as he has recently following my 2nd event, exactly a year later.

    • Hello, Suki. Thank you so much for sharing your story! WOW! I personally did not experience the “feeling of doom” (until my PCP had already told me something was very wrong and I needed to go to the ER) so hearing about what others have experienced is very interesting and informative for me. It is sometimes a symptom I forget to mention upfront to others so your thoughts definitely make a difference and make an impact. Thank you for sharing. I am so glad you are here to do so and have no doubt your story will help others who may be hesitant and experiencing the same thing(s).

  2. I’m sending you loving and healing vibes. Maybe you can consider taking MBSR mindfulness based stress reduction program. I hope soon you can become more gentle on yourself (re feeling guilty for surviving). Maybe try thinking of yourself as a child and how you would treat her … Maybe that can help you hold yourself in a gentle, loving, kind light. Your son sounds so lovely.
    I, too, have had two PE’s and I agree with you, you must advocate for your health and push for tests if you feel something is wrong.
    Xoxo

  3. Jodi Hanel says

    Hi Juli, Oh I so know what you mean about a feeling of impending doom! I had a course of antibiotics last December for a “lady” reason and felt completely awful and erratic on them (Flagyl). A week or so after finishing them I developed a sore calf that felt like a mild cramp. I remember sitting at the hairdressers the Saturday for Christmas thinking gee my leg is sore, what the heck have I done to it! I kept going organising a big family Christmas with everyone coming to our place. My leg continued to be sore, so sore that Christmas night I sat in the chair with ice on it. Still I kept going, we went away a few days later to the beach with another family, my leg was still sore, so sore that I went to the beach (January here usually is hot but was cold this day) and walked in the ocean to relive the pain as I had not been sleeping, Ibuprofen was not touching it. I got to the point of going to bed thinking “If I go to sleep am I going to wake up?” I made an appointment to see my GP the day we got home from holidays. The GP didn’t think that there was anything too wrong, my leg wasn’t any different is size and not hot to touch. As a precaution she did a D-dimer. The D-dimer came up positive. I went straight to our nearest large town to have an ultrasound. Ultrasound came up clear. So I continued on…..after all I had had a scan and all was good. We went to Melbourne for a couple of days with the family, I was obsessed with taking photos of myself with the kids and my husband (kids are teenage boys so not cool taking selfies with mum haha!) The pain in my leg continued…gee I thought I’ve done a really good job of pulling a muscle here! The next week we walked in stinking hot weather to our local golf club for dinner (only about 100 mts) and I struggled to breath and thought oh I am getting so unfit! That night I chatted to a friend who is a nurse, I told her about the D-dimer and ultrasound, she was concerned and said that you don’t have a positive D-dimer for nothing. When I got home I googled D-dimers and didn’t come up with anything but scary thoughts! The next day we went to a suprise 50th, (I spent most of the day on the couch as my leg was really really sore) the same friend was there and I mentioned that I had goggled the D-dimer and that it was scary! She said well you will know if something is wrong and you get breathless. Hmmm I thought to myself I am a bit breathless….oh stop it you are being melodramatic! We walked home from the party really late, probably about 2kms. I was really breathless but thought wow I’ve eaten too much food! When I got home it took me ages to go to sleep, when I laid down I felt like I have a brick on my chest and I seriously thought of going to the hospital but thought no I will be ok…..but there was the other overriding thought of will I wake up? The next day I was really low but thought I had just had a late night and was not as young as I used to be!
    Monday came around…still feeling awful…..Tuesday…..this is ridiculous I had better go back to the doctor. Go to the doctor, she asks me if I am anxious about anything?? Puts me on the oximeter, does an ECG….hmmm my oxygen was around high 80’s and 90……doctor decides to send me for a x-ray the next day and gave me some ventolin seeing as I had slight cough. Felt even more breathless during the day and the next. The Ventolin suprise suprise did nothing. On the Wednesday I felt really bad and almost fainted at home…..still I ignored everything with my body and the feeling of doom was huge, I drove my son around to my friends for them to take him to footy training……my friend just took one look at me and said you don’t look so good……I’m taking you to hospital……..at the hospital I got put on oxygen and still my oxygen stat was in the 70’s. My fingertips were blue and so were my lips. Nurses bumped someone else out of the waiting ambulance and decided I was in more need. The doctor (my GP) still seemed unsure of what was going on, couldn’t get the results of the xray. Decided reluctantly to send me to the nearest large hospital by ambulance. I remained calm for the hour trip. Had a CT at the new hospital…..my pulmonary arteries were almost completely occluded with clots. I was terrified and my overriding thought as I looked at my kids was I can not not be their mother anymore……this can’t be happening. I spent 4 days in Intensive Care and another 5 in our local hospital…….I have been told by a few doctors that I am lucky to be alive. I treasure everyday.
    PS: Sorry about the long post……I think I needed to tell my story somewhere!!

    • Hi Jodi! No need to apologize for your post, I am really grateful you have shared your story with all of us! I can relate – it fells really good to share our stories and for some reason, writing it down has made an even bigger difference for me in terms of being therapeutic.

      Thank you so much and welcome too! I am really glad you are here to share your story. It is important and you never know what lives you will touch. Wishing you a lovely week and wellness.

  4. Juli, you have no idea how much I enjoyed your post. I needed to know that I am not the only person that has experienced depression since my blood clots discovery. I had a Total Knee Replacement in April of this year and was on my way to recovery when 6 weeks later I had sever chest pains and attributed it to GAS. I woke my husband up at 2 am and he got out the Rolaids. We stayed up the rest of the night until the pain subsided. Then 3 weeks after this I woke up around 4 am and the pain was unbelievable plus I could not breathe. Again we both sat up in bed and waited about 15 min. before my husband said “we are going to the hospital”. At the hospital thank God the emergency doctor was very knowledgeable because at first they administered nitroglycerin tablet under my tongue even though the pain was on the right side then immediately did a xray followed by cat scan.. All this time they had me on oxygen. It was discovered that I had two blood clots. I saw one which looked the size of a quarter and was bright bright red.
    Following 3 nights in the hospital I was sent home having to give myself shots in the stomach for ten days then on Warfarin daily. It has been a roller coaster ride trying to stabilize my blood between 2 – 3. Some weeks it is 4.4 and the next it will be 1.9 which has been so depressing. I got on the roll of planning my funeral and listing what each child (3) and grandchild (7) should have. This made me even more depressed knowing that every day may be the last day I will see them. I have a 8 year old grand daughter that asked me yesterday “GG are you going to die?” That is when I realized how morbid I must sound to my family. I need to have a more positive attitude and I am going to start working on it starting today. I know I am depressing to my friends who have been wonderful to put up with me bringing food, and just being there daily. I am so blessed to have a husband that has stepped up to the plate. He does everything from washing, running for takee outee’s never once complaining and let me add that this man has never in 45 years done any housekeeping. Has never opened the dishwasher to this day. He washes them in the sink every night. I have literally just been a morbid idiot since April 14. SO so grateful to have found this site after reading daily about my condition. Juli has been an inspiration because every day I expect to DIE……every day.
    I cannot wear compression hose because they cut into my legs and make huge red rings around them. Even the XLARGE do not fit correctly. So have wasted almost $200.00 on hose that are not any good.
    I am on oxygen (suppose to be 24/7) but I monitor my oxygen all day and do not wag the tank around but I sleep with it at night. Late afternoon it will go down to the 80’s and four times has been in the 70 range and then I grab the tank and hook up and it comes up immediately.
    As of today I will just come here for inspiration and will no longer surf every day for blood clots in the lungs and what to do, etc.
    Thank you so much, I am so grateful to have found this site ……….I needed this.

    • Hello Amanda and welcome to BCRN! I am so glad you have found the site and am really glad to have you here too. Thank you so much for sharing your story.

      Amanda, you are not alone in your feelings and my heart goes out to you as you have poured your heart out here. I remember how I was feeling when I was where you are in your recovery and yes, I thought I would die and I thought it would never, ever get any better. I could not understand why this happened and how I survived when so many others have not. Yes, I thought I would die, and in fact even wished it at times because I thought it would be better than the pain and misery I was in and the pain and misery I was surely causing everyone else.

      I just wanted to reach out to you and tell you that you are not alone and the feelings you are feeling are very normal. I am so glad you have a family and friends to support you and a husband to help take care of you and your home. That is a blessing too, as I am sure you know.

      I hope you will not be a stranger here, at all. You are welcome here to share your thoughts and read the thoughts of others. Thank you for sharing the story of your PE, because DVT/PE is a common occurrence after knee and hip replacements, but I am afraid some people just do not know to seek help. I am so glad you and your husband did, and I am so glad you had a hospital team that knew how to help you! You never know who you may help, Amanda, by sharing what you felt and the action you took. Thank you for that.

      In case you had not seen it- I wanted to leave you with these for some inspiration-
      http://bloodclotrecovery.net/7-steps-to-feel-better-about-yourself/
      http://bloodclotrecovery.net/get-inspired-7-steps/

      Take care and talk soon!

      • Thank you so much for replying. I have been back in the hospital for a kidney infection, fever, etc. I’ve had the kidney infection for over 4 months but for some reason they just did a culture and all the meds I’ve taken were not sensitive to my type infection. GO FIGURE!!!!! This has been so frustrating. Thank God my knee is slowly getting better however, it feels so foreign. Thank God for my wonderful husband and friends that I’ve been able to sorta lift myself from the depression I’ve felt.

        • Hi Amanda, I hope this note finds you feeling better and home again. That sounds incredibly frustrating and a VERY long time to have an infection – wow! Wishing you wellness and strength as you continue to work through recovery. Talk to you soon.

  5. Hi Juli, Thank you so much for your story on BCRN. I too am a survivor of bilateral saddle PE’s in March, 2014. The comments from others are really helpful! I was a very active 56 year old who walked 5-6 miles daily until the PE’s. My husband and I returned from a Caribbean cruise and I developed Norovirus. I became so dehydrated and immobile that the doctors think that caused the clots. Recovery is slow and to be honest, I am impatient. I am back to walking 2-3 miles each day but tend to feel like my breathing is not the same. Despite the challenges, it helps so much to know that others are experiencing somewhat tedious recoveries as well. We are the fortunate survivors and each day is a gift. I was the most tanned and healthy looking lady in the ICU….looks are certainly deceiving. Thanks again for this site!

    • Hi Donna! Thank you so much for sharing YOUR story. That is an interesting cause for clotting that I have not run across yet – I am truly glad you shared because you never know who your comment may help! I hope you are recovering well. You are an inspiration to work back to health and fitness. Thank you again and welcome!

  6. You are so cool! I do not think I have read through something like this before.
    So great to discover someone with some genuine thoughts on this topic.
    Really.. many thanks for starting this up.
    This web site is something that is needed on the
    web, someone with a little originality!

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  1. […] really related to Julie’s story. I too am a two-time survivor of PE. I am also the mother of a son that had multiple PE’s and […]

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