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 🙂

 

Survivor Spotlight: Chelsea Carter Shay

OUR  STORY

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 Our story starts back in 2001. I was pregnant with our daughter.  One evening I began to feel like I had a “charley-horse” in my left leg. I figured I had just not been drinking enough water or strained my leg. After four days I decided I had better call my OB. He basically brushed me off saying it was my PCP’s area.  I called her and she ordered an ultrasound. I remember saying to the tech, “It’s perfectly normal right?” She broke with protocol and said “no, you have a huge clot.” I had been on bedrest since Christmas Eve when I had some bleeding – this was six weeks later.  I was immediately hospitalized and started on Lovenox for the remainder of the pregnancy.  There was no generic at that time.  Lovenox was very expensive and insurance required I have the shots administered daily at the ER. We got around that and the shots were administered at home by my-self or my husband.  At that time, the thought was that the clot was caused by the hyper-coagulative state of pregnancy and once I delivered this would not be an issue.  I think they kept me in hospital for a week.

Two months later my membranes ruptured at 22 weeks. I was once again placed back in the hospital. This time until the end of my pregnancy. The idea being to delay delivery long enough for her to survive. Lovenox was changed to IV heparin. IV antibiotics and magnesium were added along with a insulin pump to treat my ever worsening gestational diabetes.  We made it ten weeks to 32 weeks. I was unable to receive steroids so her lungs were immature and she ended up on a ventilator for 11 days.  I was changed to Lovenox and Coumadin. Eventually, my INR was therapeutic and switched to  Coumadin only for the next six months. My daughter and I were in the hospital for a total of 16 days after delivery.  I secretly think I could have gone home earlier but the hematologist kept me in hospital to be with my baby.

Fast forward eleven years. We were walking out of the library and I was struck with a sharp pain with inspiration in my right chest and shoulder. I was convinced this had to be asthma or a panic attack. I went home and tried to rest, took my sons to a boy -scout meeting and could not get comfortable. I remember being so restless. After the meeting I fessed up to my husband and my good friend and charge nurse that I was having chest pains. They convinced me to go get an EKG and if needed a breathing treatment since I was so convinced the shortness of breath had to be asthma.  At the ER they did an EKG, started an IV and took blood.  I worked in this ER as an RN, so I knew my doctor that night well. I argued with him that this must be stress or maybe a panic attack. He knew I did not have a history of panic attacks but that I did have a history of asthma. My vital signs were good. O2 sat a tad on the low side. Breath sounds were clear. I still was trying to come up with a reason for my discomfort and started to argue with the doctor again when he came into the room. He said “your d-dimer is 19. I ordered a CTA.” That shut me up.  I was very uncomfortable during the CTA. Results – no PE. I was admitted and actually had an exercise treadmill the next day and released. A few days later I had a follow-up with my PCP. I was still having shortness of breath and chest pain. He looked at the report and found there was movement on the study and ordered another CTA. This time the PE was found and I was put into the hospital on heparin and sent home on Coumadin. Blood tests were done to find a cause. All the tests were negative. My hematologist said that he felt strongly I should be on Coumadin for life.  A few weeks before this happened I had again had that left leg pain. Another DVT but this time a piece broke off and lodged in my lung.

I have had a few surgeries since then and have always bridged with Lovenox. I have had some complications that looked like a PE but have turned out to have other causes. My “asthma” also is gone. My hematologist and pulmonologist have a theory that my “asthma” was actually tiny PE’s. My life on Coumadin is kind of mundane. Monthly or more frequent blood draws. A love /hate relationship with my new normal.

This fall my daughter had been having terrible issues with her cycles. Her pediatrician suggested a low dose birth control pill. I questioned the safety given my history. She assured me that it would be safe. That was the first of September. We made a trip to Savannah, GA to take our son back to college – 16 hours round trip. Our daughter and I had a bad respiratory virus. She could not shake the coughing and shortness of breath.  I took her to her doctor and she said it was allergies and started her on Singular. No change was noted plus she began to have tachycardia (fast heart rate) and extreme shortness of breath with exertion. She is an equestrian competing in Hunter jumper -she jumps fences on her horse.  She had a hard time finishing a workout or lesson on her horse. Climbing the steps left her breathless. I have an oxygen saturation finger probe at home and her sats would be in the low 80’s. She would be tachy at 120-140 beats per minute on her pulse. I reported all of this to her doctor and that her lower lobe breath sounds appeared to be very diminished during these attacks. She added a albuterol inhaler and gave her a spacer with a mask. She even gave her a breathing treatment in the office with no change in breath sounds. She was not having any trouble breathing in the office so her doctor said exercise induced asthma. At my insistence she also ordered a chest x-ray but refused to order a Chest CT (CTA). She even suggested that perhaps it could be anxiety…

My daughter was getting very frustrated with not being able to ride. It was very dry and dusty so we were thinking that perhaps all the dust she was breathing was causing her symptoms. She even coughed up what we though was mud. She started to ride with a mask; still no improvement. I took her to our family allergist who had seen my husband and son for years. She also thought it had to be asthma. Changed her to a better age-appropriate spacer and asked her to monitor her spirometry or lung capacity. She started out very low but after being treated with steroids and antibiotics on the off chance this was an atypical pneumonia.  Her lung capacity seemed to be improving. She rode in her first major competition and did well but had to have a hit of her inhaler after every round. The inhaler seemed to help some nut in reality it was probably the rest between rounds that helped her feel better.

After she had completed the oral meds, her breathing seemed to be getting worse so the allergist got her in within a week with the pediatric pulmonologist at Vanderbilt Medical Center’s Children’s hospital. Her respiratory function was on the low normal. A repeat of the respiratory function showed no difference.  He diagnosed “Asthma” and did extensive re-teaching of inhaler use and instructions to follow-up In February , sooner if not better and told me how to talk to his personal scheduler so that she could get us in.

 Before we saw the pulmonologist my daughter started complaining of left leg pain. She thought perhaps she had strained it riding since the weather temp fluctuations had made her horse a little “fresh” that week. For two days we treated the pain with motrin and ice. There was no swelling or obvious injury. On the third day (Saturday) she had a lesson on her horse and texted me at work (I am an RN in an ER), when she got done that her leg felt “heavy” and was swollen. When she got home she sent me a picture. It was definitely swollen and red. I asked my husband if he thought perhaps they should go to ER and have it checked as I was concerned about a clot.  He said she wanted to take motrin and ice it and see if it felt better. So that is what they did. I was at work until 11pm that night she was already in bed) and back out before she got up the next day. My husband said she was feeling better. On Monday she woke me up saying it still hurt – could she go have her physical therapist look at it. I had to run out and go to doctors apt and get my INR drawn so I did not have time to look at it. I called her physical therapist and got her an apt. When we got there I saw the leg for the first time. It was discolored, swollen and neither of us plus another therapist could find a pulse. We left immediately, got food and headed to the ER where my husband was working. They did a straight stick for a d-dimer and ordered an ultrasound. My husband stuck his head in while we were waiting on ultrasound tech and said her d-dimer was 13. The ultrasound was done and it was confirmed she had a DVT.  I mentioned the continued problems with breathing and a CTA was planned

Arrangements were made to transfer her to the Children’s hospital in Nashville.  The children’s hospital wanted to do any further tests so an IV was started (by her dad) and we were on the way. Once at the hospital a CTA, and more blood work were done. A repeat ultrasound was done – as we were leaving for the ultrasound a nurse came in for more blood. I asked why. She said had no one told us – she has a PE as well. After the ultrasound a heart echo was done to check the function of the right ventricle. About 2AM the hematologist resident came to see us. He said she had a bunch of clots in her lungs and leg but he did not think intervention would be needed. We spent the night in the ER since no rooms were available. At 6 am a nurse came in and said that our daughter was now NPO and would be going to surgery later that morning. I was very surprised and said no one had told me. It was not until we got to pre-op that the doctor caught up with us and told us what was needed. The clots in her leg were occluding blood flow in her leg. He was going to need to place a catheter up into her leg and administer TPA and heparin straight to the clot. We would go to ICU for the night and then back to surgery for clot removal the next morning. After he placed the catheter he told us the clot extended into her vena cava . He thought she might have may- thurner syndrome (MTS). He would know more the next day when he was able to do a venagram after he removed the clot.

After a LONG night in ICU they took her back to surgery and were able to remove most of the clot. The doctor said she did not have MTS even though he has to balloon a part of her iliac vein. The narrowing was missing the type of compression that meant MTS. After recovery we were sent to a regular room where we stayed for another 4 days while her blood levels became therapeutic on Lovenox. On Friday her leg swelled up again and after arguing with the resident all night got the attending to order a repeat scan in the morning. The clot had returned in her leg. She was therapeutic and it was Christmas Eve so they let us go home. Since her pulses were able to be felt they did not feel at that time another procedure would be needed but they would bring her back in for a repeat scan in a few days.

Repeat scan showed no difference but no increase in symptoms plus swelling was down. She would be followed up with in hematology in 2 weeks time. That brings us to this past week.she was seen in hematology clinic. Blood work was high so her lovenox dose was decreased and repeat blood work 2 days later. In speaking with the pulmonologist we found out that there were multiple clots in every pulmonary artery. Every vein in her leg was occluded up to vena cava prior to surgery.  Plan is to continue on Lovenox twice daily and to repeat cardiac echo, CTA and Ultrasound in 3 mos. Echo and pulmonology follow-up will be sooner. No riding her horse. Lovenox therapy is planned for 3-6 months depending on scans. She will miss the whole spring competition series. She is very bummed about that.  Her dad and I are thankful she is here; we both know what could have been. When you read her chart form this fall it Is obvious what the problem is now that we know. It is extremely rare for a healthy kid to develop a clot. Most clots in children are from central catheter placement for cancer treatment or the cancer itself causing a clot. Our daughter’s life is truly a miracle.

Survivor Spotlight: Miss Cassie Louise ♡

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On May 22, 2013.. I went into status epilepticus.  When I was awoken from the induced coma ,something was not right. I stayed in the hospital a week being pumped with antibiotics. By Friday, May 22nd, I was screaming the place down not knowing what was right so they then committed me to the mental health unit.  I spent the weekend there.  On the 1st of June 2013 the the doctors on duty were on shift.   I was instantly tested for clots via d-dimer.  It scored in at around 2800.  So, off to the hospital I went the following day which was the 2nd of June.   I had a doppler which showed no clots in lower leg.  On June 4th, I had a VQ scan which is where they found my shower of multiple PEs bilateral both lungs.   They lost count, but they think between 60-100.   June 7th,  I was discharged back to the mental health unit.  I would now spend the next ten days sleeping 23 hours a day.  I had a couple of trips to A&E and 1 stay but it is a blur, on 15th June i was admitted back to the main hospital due to a HR of 174 and low O2 levels but not so low to need oxygen. I was instantly whisked away to have a storm of blood tests and instantly pumped with God knows what antibiotics.   I had septicemia, but I also had many other infections.   I cannot tell you what but at one point they were considering 100% isolation ward where they have to wear contamination suits, etc .  Finally, on the 3rd of July , I was allowed to go home but this was just the start of a journey with ongoing recovery.  There are so many parts I cannot remember.  I sometimes have flashbacks and cannot work out if it was real or not.   I have to ask my mum for clarification.  That is the worst part for me, not being able to remember 8 weeks of my life.