Survivor Spotlight: Traci Patton

My story actually starts many years ago. I’ve had issues with my period, since I first started at age 13. I’ll spare you all the gory details, so the men reading won’t be grossed out, but I’m sure a few of the women here know what I’m talking about. So I’ve tried everything you can think of to fix this issue. Mostly, it’s been “Let’s try this birth control, let’s try that one”. I got pregnant at the age of 18, and since my period would skip three or four months at a time (even on the pill), I had no clue what I was going through wasn’t just the norm. So I kept taking the pills. It ended in a miscarriage. I was shattered. I found out I was pregnant again about a year later, and around three months after I left my abusive fiance, I carried him to term, and on April 14th, 1995, I gave birth to my only child, my pride and joy, Dillon.

     Fast forward 18 years. I had still been having issues with my period, and went to my GYN, requesting a hysterectomy. I had been bleeding almost non-stop for three months. I was anemic, exhausted, and so very tired of bleeding. I literally begged my doctor to give me a hysterectomy. He told me, at the age of 38 and with an almost 18 year old kid, that I was still too young to have the surgery. It was too permanent. He talked me into a birth control patch that worked well for women with my “issues”. So in February of 2013, I started the Ortho Evera patch.

     I work as a Police/Fire/EMS Dispatcher in my town, and on 4/10/13, I was heading in to work for an 11 pm to 7 am shift. My left hip was aching, and I couldn’t get comfortable. I tried sitting, walking, propping my leg up, keeping it flat. Nothing helped. It was just achy and sore. I sat there all night, trying to figure out why it hurt. I was having trouble breathing, also, but thought that was due to my asthma. But I got thinking of a friend I have on Facebook, who just went through blood clots, and was starting to wonder. I remember reading her story, and worrying. I went into the bathroom, and realized that my leg was swollen pretty badly, and very hot to the touch. So I did what everyone does. I consulted the Internet. I typed in my issues, and the very first thing that popped up was “You have a blood clot, get to the hospital now!”. Of course, I ignored it. Instead, I finished my shift, and called my Mom on my drive home. I tried to get her to talk me out of my panic. She finally convinced me to call the ER, and tell them my symptoms. They told me to get to the ER, NOW, and they were sending an ambulance to get me. I told them no way. All I could think about was I didn’t want the people I work with to think I was panicking, and I didn’t want them to see me like that. So I took an extra ten minutes and shaved my legs, and at 7:30 am on 4/11/13, I drove myself to the hospital. Thank God nothing bad happened on the way there!!!

     At the ER, they immediately put me into a room, and started doing tests. My D-Dimer was through the roof, according to the ER Attending, and my leg was swollen to three times the normal size. So into the Ultrasound room I went. I knew the tech well, as he was engaged to a friend of mine, and I had seen him many times to check on my “inner workings”. He stuck the wand into the groin area, right where my inner thigh and groin meet. He saw the clot right away. His exact words were “Oh, honey. I don’t wanna say you’re a statistic, but you are now”. The clot in my leg went from the top of my leg almost to my ankle. It was 24 inches long. And then he sent me off to the CT. There, they found 5 clots in my lungs. Three in my left lung, and two in my right. I was told multiple times I was lucky to be alive. My doctor told me that I had a huge DVT in the back of my left leg, which is the side I wore the Ortho Evera patch on. She said it had broken off the 5 bits, which traveled through my heart and into my lungs. Somehow, I survived all 5 times!! Then the DVT broke free. If it hadn’t have lodged in my groin, and caused the clot in my leg, it would have stopped my heart when it tried to pass through. She also told me I was being admitted to the hospital, and would be started on Lovenox shots and oral Coumadin. I was expected to be able to inject myself. I am not a fan of needles, so this was torture!

     I was in the hospital for 6 days. This included my son’s 18th Birthday. But the wing of the hospital I was in had been the Maternity wing when I had my son. So the room we had cake and ice cream in was the room he was born in. And then he came to the hospital on 4/17/13, and took me home, exactly 18 years to the day that I had brought him home. The only other difference was that it wasn’t snowing when he took me home, and it was when I took him home. Lol

     I was on Coumadin for 7 months. After it cleared my system, I had the full blood panel done. I actually insisted on it, since my GYN was so certain it couldn’t have been the patch that caused the clots. My tests came back 100% normal. No clotting factors at all. But come to find out, the Ortho Evera patch had a list of warnings. “Don’t take this medication if”. There were 6 major warnings, and I matched 4 of them. Don’t take this if you are over the age of 35, over a certain weight, have a sedentary job, and if you take Carbamazapine (or Tegretol, an anti seizure medication I take for Trigeminal Neuralgia, a nerve disorder in my face). I *NEVER* should have been put on that patch. But I don’t read the warnings, because I have a tendency to read “While taking this you may experience…” and I get that symptom. It’s a subliminal thing. lol

     I’m now almost 4 years out from my Clot experience. I still worry every day. When my asthma acts up, when I get pain or swelling in my leg, or my heart beats faster. My lungs have never been the same, and never will be, according to my Pulmonologist. He has started me on two new inhalers that have helped tremendously! It’s like night and day. But if I exert myself, it shows. I wheeze, pant, and sound like a freight train going uphill. I still have issues with my period, and am about to consult with someone who will hopefully let me get the hysterectomy I’ve wanted forever. I let my former GYN talk me into a uterine ablation, which worked for about 2 years. And now I’m back to square one.

     Thanks for reading my story. I don’t show up as much on the Survivor page, but I’m always there, ready to give support or encouragement. You can always ask me anything. I’m an open book. Love, hugs, and prayers to you all! 🙂

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Survivor Spotlight: Sarah Wecker

 

 

My name is Sarah Wecker and I live in Marysville, Kansas. I am married to my best friend Rick, and have two children. Sean is 20 years old, in college at Black Hills State University. Hannah is 15, a busy freshman in High School.

My story started back in the Spring of 2009. I started having knee issues and of course went to my Doctor, who sent me to Physical Therapy. By the Fall of that year nothing was working and so they sent me to the Specialist who decided a scope should be done. My surgery was on Friday the 13th…. I should have known better. Once the Doctor got in there they realized they needed to do another procedure which required me to stay off that knee for 30 days. Surgery went fine and I went back to work on Monday. I work an office position, so staying off my knee was not a problem. By the middle of that week I was getting very tired, but chalked it up to going back to work too soon. On Saturday my husband thought it would be good to get out of the house and took me shopping, which in all reality was walking on my crutches from one bench to the other. That night I woke about 3am as I had a terrible pain in my side. I tried to just go back to sleep but then I couldn’t breathe….. at all. Finally, I laid down in the hallway on the floor and I was able to catch my breath. Hubby took me to the hospital, where they had to call in the on-call Doctor. He made it pretty obvious he was not happy to be there. He told me that you must have pulled a muscle with your crutches and that is what caused your pain and lack of breath. Sent me home with muscle relaxers. I returned to work on Monday, but I kept having these pains which caused me to have to breathe very shallow. This was the week of Thanksgiving. I had a Physical Therapy appointment after work on Wednesday. I got on the table and felt terribly faint. I remember them saying that if she isn’t up in ten minutes we are going to call the ambulance. I didn’t want that so I did everything I could to get up and get to my car. I drove home and headed towards the couch. My husband wanted to take me back to the hospital but after the reception we had that Saturday evening I didn’t want to go through that again. By the end of Thanksgiving Day I would have to stop to catch my breath on the way to the bathroom. Rick said I’m taking you to the clinic tomorrow, like it or not! I remember that night when he was telling me goodnight I asked him to check on me during the night to make sure I was breathing. I don’t know why I told him that, but he said I did. The next morning when I was getting ready to go to the clinic I looked at myself in the mirror and my skin was grey colored, and I had huge black rings under my eyes. I just so happened to have the same Doctor that greeted me so kindly the Saturday night before. I know when he looked at me he knew exactly what was wrong, and the nurse looked at him and said her pulse is faint. Immediately went to get a CT scan and back to the office where that same Doctor looked at me now with oxygen on and said, you have blood clots on both lungs. This could be fatal, we need to get you to a larger hospital. He asked me which hospital I wanted to go to, Topeka or Lincoln, NE. I looked at him, mad as I could be at that point and said “if this is my last ride take me to Lincoln, Nebraska that is home”. He told me they did not have time to take me by ambulance so I got a helicopter ride out of the deal as well. Arriving at the hospital I soon had a little good news, they said they thought this could be treated with blood thinners and no surgery would be needed. I was there for five days and sent home with lots of instructions and a new life. The one thing I will always remember from my first evening at the hospital. A new nurse who had just come on duty was looking through my records on the computer. She said to me “Sarah God isn’t done with you yet, because you shouldn’t even be here”. I took that as a sign that there are things for me to accomplish or change in my life. I must say, that while post clot I continue to have issues with breathing, it is always a reminder to me of what could have happened. 

Survivor Spotlight: Julie Oswald

 

It was my 57th Birthday on January 14, 2015. My husband had knee replacement surgery and I went to the mailbox for his paper before work. I didn’t see the patch of ice and fell on my hip and elbow. The bruise went from my knee to my hip and it gave me a hip pointer. I could barely get up off the ice, but finally made it into the house and stayed home from work for a few hours. I went back to work where I went back to my duties as the Director of Assisted Living and Senior Living for a large nursing home. I didn’t see the physician because he would just say we will keep an eye on it.

The true emergency came on Friday the 13th of March 2015. I had flu B and was instructed to stay home from work. I thought I was recovering from that when all of a sudden I went pale and couldn’t breathe. I went to Urgent Care thinking I had pneumonia or pleurisy. An x-ray was done and the PA said it looks like you have a lung infarction. I drove home and drove to the ER 40 minutes away. I sat in the ER for 2 hours even with a DVD of my infarction. If it hadn’t been for my best friend working at this hospital,  I wouldn’t be here. She took charge. I had a CT scan and told I had saddle embolus. The ER Dr. became irritated with me and said I could have died. I asked him why did I sit in your ER for 2 hours with your staff knowing I had an infarction?? He was not going to answer that question I could see. The next several days are a blur. I was in the Cardiac Care Unit. The bruise I had took two months for the clots to travel and came from my hip. I also have had Crohn’s Disease for 31 years, Factor V leiden clotting disorder, so finding where the clots came from was a toss up. 
I complained for over a year that my pubic bone was hurting terribly. By the time I had a CT scan and an MRI it was a year later and was told I had Osteitis Condensans Pubis  (weakening of the pubic bone structure). The first Rheumatologist knew nothing about it and I asked to be referred to another Rheumatologist. He told me I fractured my pubic bone.  Then my knees and elbow began to swell and I was diagnosed with fibromyalgia and osteoarthritis. So I am on Xarelto for life  and medicine for the Fibromyalgia and osteoarthritis. 
Life has truly changed for me almost 2 years ago. I lost my mom in October along with so many medical issues. I am no longer able to work. God has blessed me with a second chance at life and I have come to terms as to this is where he wants me to be. I have a precious husband, daughter,  son, their spouses and now an amazing 10 month old granddaughter. I live for God, family and friends. I love this amazing support group as we all have a story to tell on the journey we have endured.                        

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Survivor Spotlight: Karin Helmeke

I am truly blessed to be here sharing my story with all of you.

My journey started on December 15, 2016 in Minneapolis, MN as we were down there to see my step-children. Before we even left the hotel, I knew something was wrong, as it took me much longer to get ready in the morning than it should have. I was moving at a slow pace all morning and my walk down to our vehicle was brutal. I brushed it off to the cold weather hitting my lungs and that was the reason I was not being able to get much air into my lungs. My husband ran an errand before we left the Twin Cities and I was feeling fine. I was sitting in the vehicle with our 3 month old daughter (at the time) waiting for him. We started our travel back home. My husband asked me a few times if I wanted to stop and go shopping before we left. I told him, “no, let’s just go home”. Once we crossed the border back into North Dakota, my husband said that we needed to get some fuel, so we stopped. I stated to my husband that I would go to the bathroom. He dropped me off at the door. The cold air hit my lungs again and this time it was so painful. I could barely make it into the travel plaza, yet alone to the bathroom. I sent my husband a text saying that I couldn’t make it to the bathroom, as it hurt too much to walk and breathe. He came in and I told him that he needs to call an ambulance, as I told him I was having a hard time breathing. He told me “no, I will drive you”. He escorted me out to the vehicle. During my escort, he had a hold of me and I was also leaning on the cases of pop, just hoping I wouldn’t drop to the floor. The cold air hit my lungs again and that is when the pain was the most extreme. I gave my husband directions to the hospital and he got me there fast. I remember going into the ER ambulance bay and a nurse with a wheelchair met us and asked what was wrong. I told her that I couldn’t breathe. She wheeled me into the ER and put me in a room, where another nurse put oxygen on me and told me to slow my breathing. I kept thinking to myself, “I can’t slow this down”. I was hyperventilating and it hurt to breathe, so I took any air I could get. I also told the nurse that I couldn’t slow down my breathing. She asked me my name and I told her. My husband came in quick and was holding my hand. A doctor came in and said something to me, but then I must have passed out, but I was still breathing at that time.

I don’t remember much after that. I remember slightly cognitive waking up in ICU and everyone telling me it was Christmas (even though I didn’t believe it) how could I miss 9 days and not remember them?? I woke up more on Christmas Day and made a phone call to my parents to wish them a Merry Christmas and they said “This is the best Christmas present we could ever receive”. My husband was right by my side the whole time. The nurses kept coming in and asking their questions of: What’s your name? What day is it? Do you know the year? Do you know why you are here? I didn’t know why I was there. They told me that I had 2 pulmonary embolisms that they got and that is why it was hard for me to breath. 

This is what I have been told after I woke up and was cognitive to understand what was really going on. I was informed that on 12-15-16 I had coded 3 times. The last time I coded I was gone for a little over 10 minutes. No one knew my outcome and how it would affect my brain. I also bled out and received all new blood. My mom told me that they saw at least 3 ½ trays of blood being brought to me and then given to me. I was told that the heparin wasn’t dissolving my clots and that’s why I coded the first time. I ended up with emergency open heart surgery to get to the blood clots. I ended up in ICU and was hooked up to 5 IV trees with every branch full of antibiotics, fluids, etc..flowing through my body.  I made it out of surgery fine. I went to the ICU and I was recovering. There was a respiratory therapist that came in checking up on my breathing and I was doing ok. Not even 10 minutes later a nurse came in to check on me and I was coding again (the last of the 3 times) and they were doing everything they could to save me. One of the doctors went to my husband and asked him what he wanted done (surgery or not). The doctor told him if he chose not to have me go through another surgery, I would be gone in about 2 hours. My husband had been crying the  whole day along with my family and his family that came to be with him. He looked at my mom and she told him that this was his decision, she couldn’t make it anymore. He told the doctor to do anything and everything to save me. So back up to emergency open heart surgery to get more clots dissolved. I went back to ICU for the next 13 days and then moved to another room down the hall out of ICU. I spent 16 days total in the hospital.

It was a pretty scary experience to say the least. Not only for me, but my husband and my entire family. My daughter came one to two times, but I wasn’t coherent enough to hold her, talk to her or even touch her. I still have memory issues and I repeat myself from time to time, because there are times I have forgotten that I had already told my husband 4 times already. Every day I don’t know if I am going to have a good day or not with my breathing or even the pain of my incision, but I go into each day with the thought that my lungs are getting stronger with every breath I take. I’ve come to the realization that I just need to take things slower now and that this slow movement is ok. I don’t have to have everything done right now. I’m no longer in a hurry. I’m enjoying my life so much more and have turned more towards my faith. When my daughter asks me why I have all these scars on my chest, I’m going to tell her what happened. I know she won’t understand at first, but I know she’ll continue to ask until she understands. 

I am here today and I don’t take anything for granted. I embrace and love my life to my fullest ability. I have a beautiful 7& month old daughter who I get to watch grow up and explore the world around her, to mold her into the woman she will become through determination, hard work, faith and love; my husband who is the love of my life, my best friend and soul mate who looks at me with amazement every day and loves me unconditionally; and a loving immediate family/ extended family that I love with everything I have. 

Thank you for allowing me to share my story with all of you.

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Survivor Spotlight: Sheldon E Jackson

  My Story

I will be 56 years old next month. I grew up in Washington, DC. I am an Environmental Services Director at a local Nursing Center. I have been divorced for 17 years now. My daughter is 30 and son 24. I noticed problems with my legs when I was 12 years old. Swelling, stiffness and pain all the time. I thought it was normal and everyone felt this pain. Constant unbearable pain and swelling. I suffered with this pain until I was 45 years old in the year of 2006, when everything changed. I use to walk or jog for 3 miles daily. One day at work I was moving furniture and I thought I bruised my thigh. I checked out the bruise daily and began to think to myself, is this bruise moving and getting bigger and hotter? The pain got so bad that I began to crawl at home. I continued to work and one day I decided to show it to someone at work. She told me to go to the ER, I worked at a Hospital at the time and they referred me to an oncologist specialist. They told me they thought I had cancer and would have to do more test. All the the while having me go to a cancer clinic. I was so scared and confused and did not know how to tell my family. They keep asking me what was wrong with me? and blaming my smoking cigarettes for the problem. I never felt so alone in my life. I kept getting hospitalized for thing like loosing my balance walking, resulting in me hitting my head on the wall twice and bleeding both times. One day I went to see my doctor because I was crawling again and it took me 34 minutes to get to the office, when usually it took 7 minutes. They did a Doppler and the nurse went upstairs to see my doctor and it took her so long to come back that I went home. When I got home my doctor called and told me to go straight to the emergency room. He said I had 9 blood clots and had a PE. I fell into a deep depression and would not tell anyone I was in the hospital. My doctor told me later that they found out what the problem was. I was born with not one but two genes that cause my blood to clot. I was put on antidepressants and they inserted an IVC filter and I had to take very painful injections of Lovenox in the stomach and put me on Coumadin for life. While on Coumadin, I still developed many blood clots and had 2 PE’s. Was hospitalized constantly. Since then I switched to Xarelto and have not had any problems.

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Survivor Spotlight: Beth Williams

 I had hip arthroscopic surgery to repair a torn labrum on February 2, 2017. The surgery lasted an hour and I was in recovery for 4 hours due to severe nausea from Percocet. They gave me Phenergan and sent me on my way. I had a 2 1/2 hour car ride home. I was not told to wear compression hose from my surgeon or the surgery center. I was told to take an aspirin 1x a day, drink plenty of water, do ankle pumps and quad sets every hour and get up and crutch around every 2 hours to prevent blood clots. I was also told that since they put a tractioning boot on my leg during surgery (traction my femur out of the socket to do the repair) that I should expect numbness in my foot. My husband and I were diligent with my pain medication and clot prevention. We even set alarms in the night to get me up and move around. 3 days after surgery, I awoke in the middle of the night with pain in my calf and foot.  My foot was hot and red but not swollen. My foot had been numb since surgery and I thought it was a result from the tractioning boot. I was also having side effects from my pain medications (Percocet and Indocin). I had decided to wean myself off of the Percocet and deal with post op pain because the nausea, hives, passing out was just too much to deal with. I called the surgeon to tell him about my foot and he said it was from the boot and to elevate it above my heart and to weight bear more when on my crutches. Later that day, I began to have shortness of breath and anxiety while lying in bed and talking. I also had hives. My husband called the surgeon again, same day and told him what was happening. The surgeon thought it was an allergic reaction to the Percocet and told me to stop taking them and to take a Benadryl. My hubby asked if he should take me to the ER in case it was a blood clot and the Doc told my husband to use his best clinical judgment. We did not go to the ER. My calf and foot continued to feel tight over the next couple of days. I asked my husband to massage my foot and calf for relief. I was also having shortness of breath, hives, dizziness, sweating and passing out. I called my surgeons office again 6 days post op and spoke to the nurse. She thought I was having an allergic reaction to the Indocin and told me to go to the ER. My husband took me to the ER and told them that I just had surgery and that he suspects I have blood clots and to run tests to find them. They did chest X-rays and blood work and found my d-dimer was elevated. They then did a CT scan of my lungs and found multiple clots in my left lower lung. My oxygen levels were normal. They gave me an injection of Lovenox in my tummy and sent me home. I was in shock and was crying in the ER. How could this happen to me? I did everything right. I didn’t even know that you could get clots in your lungs from your legs. Was I going to die? I was so confused and scared. Would a clot break off and go to my brain while I was sleeping? So many questions unanswered. I came back in the next morning for another Lovenox injection and then saw my GP that day. He started me on 15 mg of Xarelto 2x a day for 3 weeks and then was told to switch to 20 mg 1x a day for 6 months. The next day, while lying in bed, I began having sharp pains in my left lung and chest. I became extremely nauseous and thought I was going to vomit. I called for my husband and told him what was happening and that I was about to pass out. I got tunnel vision, couldn’t hear, and then passed out. He called 911 and they came within minutes and took me back to the ER. I had more blood work and chest X-rays, an EKG and was given another shot of Lovenox. They sent me home. I fought sleep for a couple of weeks following my diagnosis. I was terrified that I wouldn’t wake up, so I stayed awake until I couldn’t. I slept with my lamp on and pillows to prop me up so I could breathe. I was so exhausted and scared. As the days went by, I started to realize that I wasn’t going to die in my sleep. That I was a survivor. The fact that the blood clots that went from my leg to my lung didn’t kill me when it happened meant that I got a second chance. If I were going to heal from the clots I had in my leg and lung, I had to rest. The body heals when you sleep. Plus, not sleeping was creating a vicious anxiety cycle further causing lack of sleep. I began to sleep for longer hours at night and eventually turned my lamp off at night. Each morning I wake up is a gift. Each moment so precious. I’m slowly regaining my strength in my body. Having clots in your lungs makes everything you do a challenge. You feel tired all of the time. There are days where it’s hard to get out of bed. There are days when sitting up, it’s hard to hold up your own head because it’s that tiring. I also have developed vertigo since my PE and get extremely dizzy when I’m over tired. I have headaches everyday. I find if I drink 80-100 oz of water every day that I don’t get so dizzy. Today it has been 4 1/2 weeks since my surgery and 3 1/2 weeks since I was diagnosed with the DVT/PE. My hip is healing great. The lung pain is much less and I am able to do more and more everyday. I will admit I sleep about 10-12 hours a day. I’m that tired. I cry a lot. I cry because I feel like my life will never be the same as it was before. My lungs have been damaged. I just hope and pray that these clots clear up and I don’t have a reocurrence. I am going to see a hematologist in a month to get some genetic testing done. I’d also like to know exactly where my DVT is located. I’ve read that they can do a doppler scan of your body to find out where the clots are in your leg or pelvis.
Thanks for reading my story. I hope that my story raises awareness and helps others so they know what the symptoms are. With so much gratitude, Beth Williams

 

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Survivor Spotlight: Debra Lynn Kleid

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My blood clot was 05/21/2015 where it effected my entire left leg , my abdomen and my lungs.

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I woke up one morning with heaviness in my leg and shortness of breath. My heart rate was high in the 150’s but my oxygenation was ok. I went to the hospital where I was placed on Coumadin and Lovenox. After several days they contacted Vascular Surgery to do a Thrombolysis with angioplasty which would take 2 days to do. That was a painful procedure as my leg was completely clotted off or the veins collapsed and they didn’t do enough sedation. I spent 8 days in the hospital with 2 days in ICU. I survived and lived to tell the tale and want to spread awareness to others!

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I’ve been through hell and back and if I could help someone I would love to.

Survivor Spotlight: Megan Mcdonald

I’m 36 years old this year. It’s been almost 20 years since my first DVT.
I was ice skating, I fell over and broke my tailbone.  Fast forward a couple of weeks and I was in hospital having surgery on my belly, waking up with a huge left calf. This was my first experience with a clot, at 17 years old.
I was on Warfarin for three months, then I moved on with my teenage life.
My left leg never completely went back to its normal size and I thought nothing of it.
Every three years since then I had some surgery on my belly, for ovarian cysts and adheshions (scar tissue) .

The day before my 30th birthday I woke up to a swollen right foot and I knew it was DVT.
They put me on six months of Warfarin and then I was told to take Aspirin every day.
I think i was just glad that my calves were the same size 😁😂😁

Two years later, after a 6 hour car trip, I felt that pain in my left thigh. Yep, it was
another DVT.
My left leg had residual clotting from when I was 17, incompetent valve, post thrombotic symptoms. I had clotted in my calf, thigh and groin.

Eight months ago I was referred to a new vascular surgeon.  My legs were cramping and swelling all the time. They hurt every day and I was housebound. I still am in many ways.
After meeting Dr Freeman, I was sent for ultrasound, ct venogram, and every blood test imaginable to get to the bottom of this.
One thing that never was mentioned was during most of my follow up scans my IVC was invisible or missing.
After my first DVT , I noticed varicose veins creeping up my pelvis, side and leg.
Dr. Freeman found my IVC missing, congenital he thinks.

My body is blocked up!

I held hope for some kind of surgery to fix the blockages.  I read about stents and I really wanted to have hope I could get better.
The doctor said that there is nothing more that he could do.  There is no IVC to put a stent in…. my body has compensated by the crazy vein system inside and outside of my pelvis and trunk.

I am on Xarelto for life now and I have my compression stockings to wear everyday for life now too.
I can’t walk much anymore and I can’t stand for long before my legs start to swell.
So many mental health issues come with being chronically sick also with many sleepless nights wondering why my legs don’t listen to me anymore ( I’ve had a few falls where my legs just didn’t move) or sleepless nights because of cramps (never knew you could cramp on the front of your shins)
I struggle to put clothes on the line.  I have to cook on a stool. I cannot wear boots because one side always falls down….LOL!

Survivor Strong…Together!

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Survivor Spotlight: Lisa McAninch Caudill

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My name is Lisa McAninch-Caudill and I am a pulmonary embolism survivor. My story starts before I was diagnosed. 

In November of 2008 my brother, Scott, passed from pulmonary embolisms, which he was misdiagnosed by three different doctors. received_10210602529412897He was thirty -two years old. I became a adamant advocate for blood clot awareness, not even aware that I would face this same life threatening diagnosis.

In August 2014 I was plagued with hip and back problems, thinking I was suffering from my fibromyalgia, which prompted doctor’s visits and chiropractor visits. Even asking the doctor at the after- hours clinic if I could possibly have a blood clot in my leg, and he said,” No, it is just your fibromyalgia flaring. Go home and rest.” So I did. Within a few days I began to get sick, feeling short of breath, and just not feeling right but could not pin point a reason. Not sure what was wrong, I went to my family doctor and was diagnosed with bronchitis, and was given a steroid shot, antibiotics and inhalers. After a few days with no relief, I went back and was sent for a chest x-ray to check for pneumonia, mind you, this was early morning. I was also having a odd pain in under my left arm in the area of my arm pit and upper ribs, was told I had probably strained myself from coughing, go home and use heat, and again, that is what I did.

As the day went on the pain increased and I thought I had pleurisy, I had this when I was much younger and it is painful, so I told my son, ” We need to go to the ER, because I have had this before and it is painful. Lets go before it gets worse.” Little did I know that this would be a life changing event. When I arrived at the ER I was seen by one of the best doctors in the ER department. He listened to my lungs and said, “I think you might have pneumonia, lets do an x-ray.” Which I replied, “I had one this morning and I haven’t heard from it yet.” He left and came back right away and said, ” I need you to stay calm, but you have no pneumonia, but you are showing signs of blood clots!” I was immediately given heparin in my IV and sent to ICU, and my oxygen dropped through the night. If I had stayed home another night the likely hood of me not being here was even greater, because the odds were already stacked high against me. I did not find out until much later that both lungs were full of clots along with my bronchial airways, and was told many times, you should not be here. Folks, that is a lot for the mind to comprehend, you should not be here! Talk about a mortality awakening!

I was also positive for Factor 5, which was inherited from my father, initial diagnosis after lab work for both parents. My other brother and my son also tested positive, and we are assuming that my brother who passed was also a carrier.

After a week in ICU and pure shock and denial I was sent home. Yep, sent home, and scared to death! What if another embolism happened while I was sleeping? What if I bleed out while taking Coumadin? I feel short of breath, should I run to the ER, because I know this is it! Eight months I suffered from horrendous anxiety. I did not think I would live through this horrible ordeal. Why did I get to stay and my brother didn’t? Why was diagnosis and treatment easy for me and not him? I was later diagnosed with PTSD, survivors guilt, and of course, anxiety.

Two and a half years later, and I am still here! I thank God everyday, all day, several times a day for allowing me to stay. I still have guilt over my brothers death, but I have also learned that it was something I could not control, and it was out of my hands. The anxiety is still there, not as bad, but there and it always will be, and I have to cope with that on a daily basis, but I am here!! 

I AM A SURVIVOR!! AMEN!

Survivor Spotlight: Desirae Baird

It all started on June 13th 2014 like any other ordinary day.   I was getting up to go to work as usual but on this day I began having severe pain and on the right side of my chest, right lung,  I felt as if I couldn’t breathe.  I had no clue what it was when I was driving to work. I was going up a steap mountain on the way and I was having a harder time breathing so I ended up turning around and going to ER not realizing that my whole life would change at that moment. I was rushed into X-rays and had a CT scan about 30 minutes later.   The doctors came back and told  me I  was being admitted because I had a DVT and blood clots in my lungs. They stated I was lucky to be alive!  The doctor was talking to my dad and I telling us that I would not make it through the night but that was a lie.  I started praying to God that I have two beautiful children that need their mother and a baby in NICU for 3 weeks .  I was not ready to go.  I prayed I have to be alive for my children.   The doctors had told me that my DVT and blood clots were caused from birth control .  After being discharged from the hospital I was put on Warfarin and Lovenox shots.   After being on Warfarin for a year, I was finally taking off.   I thought I was finally over it.  On October 2nd 2015, I was back in the hospital again because I was in so much pain and couldn’t breathe.  I found out I had multiple blood clots in both of my lungs.  I ended up with severe anxiety and  I NEVER wanted to go back in ICU with so much pain.   I was hqving so much anxiety because I just wanted to go home and be with my babies.  I ended up back on Lovenox shots because I was pregnant and lucky to be alive.   I was so scared that I was going to lose the baby but I have a beautiful 2 year old boy!  I’m here and alive but I still have very bad anxiety… but thank you Lord I’m here today and I am with my three babies and a very healthy Lovenox baby 🙂