Surviving a Silent Killer...the Whole Story
By Lisa Cowan Wells
I always thought of myself as a Mom, Wife, Friend who wore many capes...I was always on the go, shuffling oldest to high school and job. Then taking both kids everywhere with me while doing errands for myself, house, school, our brewery and night school for me at the end of the day. I always lived in fast mode...you would think under those circumstances I could be at least a spokesperson for being able to take on anything!
At the end of last year, 2012, I noticed I started having more health issues than my usual, occasional bronchitis, sinusitis, asthma episodes. These continued into this New Year, 2013. I went to the ER countless times so sick and all they did was say its your asthma...here is some prednisone, Z-Pak and pain pills for chest pain. D-dimer was always coming up negative, so they never pushed further to check for clots since my leg was not giving any signs or signals for a DVT and chest just seem to be asthma related issues. I noticed that every time they were giving me those meds, the usual ones that always worked when it was bronchitis, asthma related issues weren't working anymore and the pain in my chest, dizziness, palpitations were getting worse...at this point when i would show up at the ER...I just had to be in search of pain meds, i must be addicted. The last ER visit I had before the BIG ER visit...he sent me home with the same meds again and said i has pleurisy. They did a D-dimer each time and again, always negative...this ER visit they even did a CT scan without contrast and said there was nothing. I began to think I was crazy or something...got really scared.
I was in my kitchen this past April and my daughter gave me something to cut open...instead of using the scissors, I used a small, very sharp knife...dumb, dumb, dumb BUT so glad I did because it was from that cut that got the ball rolling on finding this DVT, multiple bilateral pulmonary embolisms I had. The knife went in deep on the side of my finger...told some friends on facebook about and they urged me to go to the ER just to be on the safe side to make sure it didn't get infected.....so, embarrassingly I did. When I got there they took my BP and it was 179/145...they were freaking out and the thumb became last priority...my pulse was racing at 137. They walked me back and did and EKG, D-dimer and some tests while they cleaned and bandaged my finger. Informed me to get a doctor right away about this blood pressure issue because it was serious.
The next day I did. Blood pressure still was high, not feeling well in my chest. He thought go ahead with another round of steroids and be rechecked on the blood pressure after two weeks. Went in, this time with tingling sensations (described like a hyperventilation feeling) on my left side from neck, chest, arm, leg and foot.he seemed puzzled..I went home, a few days later could not get off the couch, had a raging headache and still had the same symptoms but this time it was worse and could barely move. I called the doctor and he suggested to go the the ER. The ER checked all those things again. Asked me if i would like to just go home and see what tomorrow brings or be observed overnight. I chose to be observed overnight because I knew something was not right. They kept saying i was just having muscle spasms causing the pain on my left side and was gonna release me the next day. A new doctor came to see me before they made final decision to let me go...we talked, she seemed very concerned and ordered a CT with contrast to check for clots even though the d-dimer was still negative. Low and behold...nurses started rushing in, hooking me up to things just as i was about to tell my mom i was going home. I put the phone down and asked him what was going on...he said you have clots in your lungs....WHAT! Me? Not me...Super Mom. What is going on...I was so confused and this was so foreign to me. All kinds of emotions flooded through my brain...I cried, was terrified, confused...everything.
The next day the nurse asked if I would like to take a shower...I said yes. When I was in there I got this Charley horse sensation and pull in my left leg. It was very odd. I debated whether or not to say anything. Good thing I did. She ordered a scan of my leg and there it was...a monster of a clot...18 inches!!!!! There was the culprit that caused the embolisms.
Next day, labs.....about 20 vials of blood drawn. All came back negative.
I finally went to a hematologist that did testing that was done and found what it was....I had the MTHFR C677T and the Prothrombin G20210A mutations (heterozygous and homozygous). What all this means to me right now is that I am a lifer on blood thinners (Warfarin). I see a genetic counselor on September 5th so this will help me understand...I do know I have to get my daughters tested for sure.
Well there you have the whole story. I am still Super Mom but in a different and more special way now. I see the world and my own life differently after coming so close to death. Thank you all who were by my side from the beginning...my husband, children, family, friend and the friends I have made here that gave me my voice back to make a difference and spread awareness. Here i am and here is where I want to be !
Lisa Marie Wells <3
I am a young, healthy, very active female in my mid twenties. I'm the mother of 3, work full time, and am a full time nursing student. One afternoon in May, I began having chest pain. At that point it wasn't severe, but definitely noticeable. I was at a hospital doing clinical rotations so my classmates hooked me up to a machine. My heart rate was 227 beats per minute, and my o2 sat eas 89%. I was functioning relatively ok, so I continued with my work. Shortly after, my nursing instructor looked me over and insisted I go get checked out. I was on my way to my evening class (being the extremely stubborn individual I am) when I began having difficulty breathing. I rolled my eyes at defeat and drove myself to the nearest ER. Upon arrival I was taken back immediately and hooked up. Their first thought was supraventricular tachycardia. Their second was that I wad abusing diet pills and or energy drinks. I don't touch either. In fact, I don't drink much caffeine at all. Not even coffee. My blood work came back quickly showing an elevation in D-dimers, which is a direct indication of a clot somewhere in the body. After a chest x-ray and a CT scan with contrast dye, the doctor came into my room and apologized about repeatedly asking me about diet pills and such. He sat on the foot of my stretcher and without looking at me said, "You're positive for a pulmonary embolism in your left lung. Your left ventricular is enlarged." Before the shock set in I thought "Ha! Diet pills! I weigh a health 125lbs sir!" But then the reality hit me pretty quick. It's not a joking matter. I was asked to chew an aspirin, and given my first ever lovenox injection in my stomach. This was the start of a 9 day hospital stay. My heart rate never came below 150bpm, even while asleep. I wore a heart monitor 24/7. I have zero risk factors. I'm not on birth control, far from obese, I have never smoked, and am never sedentary. No recent surgery or travel. Yet I have a blood clot. The last 4 months of my life have been a whirlwind of cardiology visits, wearing heart monitors home, blood draws twice a week to check my INR, another ICU stay when another smaller clot came out of nowhere.... endless tests, endless injections and pills, and endless medical bills. Sadly, as a student I have no insurance and this experience has broken me. I'm incredibly grateful to be alive. I never in a million years thought this could have been a threat to me. Even as a nursing student nearing graduation I denied the symptoms because hey! Young folks don't get blood clots! But they do. The warning signs are very distinct and unmistakable. I'm lucky, I survived relatively well, I did graduate with high honors although I lost my job. I'm still here to raise my children, and I hope that no one walks this path again.
This story come from: http://www.oneloveforkatie.com/2013/06/the-back-story.html?m=1
First, let me get it right out there - Katie is in critical but stable condition. Her infant son Conor is as happy and healthy as any two week old baby has ever been. Here's how we got to this point:
On the night of June 12th, Katie gave birth to her second son, the beautiful and instantly charming Conor Donlin Ray. See the pic below as proof of both:
Four days later as Katie and Conor were settling in at home in Duxbury, Katie had a strange in feeling in her chest and arm. Her mother-in-law Maryellen called 911 and she was brought to a nearby Emergency Department where a blood clot in her lung was found. She requested transfer to Beth Israel for treatment and while waiting in that ED for a bed upstairs, she had searing chest pain. A few hours later, her doctors discovered that the pain was from a heart attack caused by a spontaneous coronary artery dissection - essentially a long tear inside the blood vessel that brings oxygen to the back and bottom of her heart. Only about 120 cases have been described in medical literature. No one knows exactly why this happens but it is thought to be related to the hormones that come on late in pregnancy that help soften the body to ease delivery and then also blood changes that help with clotting after birth.
She went to the cardiac cath lab on Sunday and got 5 stents placed to hold open the artery. All was well (very strange and unnerving, but well) and discharge from the hospital was imminent - such a relief for Katie and all as she had not seen her newborn son or 4-year old Brendan since the ambulance door closed in her driveway on Saturday. A small fluid collection around her heart delayed her return home, so Katie decided to have the boys over for a visit last Friday. Conor seemed to dig it:
Just minutes after that picture was taken, still holding Conor, Katie again had searing chest pain, worse than before, and was taken back to the cath lab. At least 3 more dissections were seen, some were stented, some were too hard to reach, and she suffered another big heart attack. She had to be intubated and sedated during the procedure and a balloon pump was placed in her aorta to help keep the coronary arteries open and blood flowing to her heart which had taken quite the hit during this and could use all the help it could get to start healing. As she was being taken back to her room, her heart stopped (VF arrest) so quickly they removed the balloon pump and placed her on external bypass so that she would be out of any danger from further arrhythmias.
By Saturday morning, both sides of her heart were struggling to pump. Out of concern for the need for internal artificial support (like a BiVAD, for those who are healthcare inclined) or heart transplant, the Beth Israel team transferred her to their colleagues at Tufts Medical Center which is where she is now.
My name is Kaysie I am 18 years old. Three weeks ago I was airlifted because I was having a pulmonary embolism. It was in the middle on both of my lungs and I could not breathe. I was dying. The pulmonary embolism started as deep vein thrombosis that we did not know was there. While at school I put my leg up thinking it would help with the swelling in my ankle and leg when I laid back the clot rolled down and hit my lungs. It was the scariest thing that has happened in my life. The pain had started in my leg but because I am so young and my leg had not swelled yet. They believed it to be sciatica I was unable to sleep for three months and then my leg starting swelling the same day I was supposed to go back to the doctor is when I had my PE and made it halfway to heaven. I had many great doctors and they helped the clot is still both in my lungs and leg but Coumadin is fighting it off. We also found our while in the hospital that I have the factor 5 gene that makes me prone to clots. I hope that my story can show that no matter what age the clot can happen. I was thankful that I didn't smoke and my lungs were strong enough to fight. Don't ever think that it won't happen because I am 18 and proof that it can.
In 2008 at the age of 25 I was hospitalized with deep vein thrombosis and pulmonary emboli. This is the first time I have recounted my story and I am so happy to finally be able to share it with you all.
The holiday that changed my life:
It was meant to be the holiday of a lifetime. I had left Australia indefinitely with the hopes of gallivanting the globe.
The first leg of my trip was from Sydney to Dubai. After four days in Dubai I started to experience swelling in the left forearm. Other symptoms included a number of red spots on my arm that looked to me like an allergic reaction, shortness of breath and a slight tightness in my chest. However, I was in no discomfort, and put my symptoms down to the sweltering heat. After all it was summer in Dubai.
I am no stranger to allergic reactions so I took some antihistamines assuming that I was experiencing a reaction to some red wine I had with me kebabs and baba ghanoush.
For the rest of my stay in Dubai my symptoms remained the same so I continued to soak up the sites, and even had a tennis lesson with my Ethiopian tennis instructor.
My next stop was London. My swollen arm and I arrived safe and sound – myself none the wiser about my condition. In London, the good news was I no longer had any red spots on my arm. The concerning news – my arm was swelling more and more so by the hour. The skin on my arm actually felt like it was stretched, it was cold, and deep red in color. Not knowing where the hospitals were, I stopped by a pharmacy. The pharmacist advised I should take myself promptly to a hospital’s walk in center. She was positive that I was not suffering an allergic reaction but rather that my symptoms were indicative of decreased blood circulation.
On the morning of July 29th I was woken by my ‘brojanica’ (bracelet). My arm was so swollen that my bracelet was cutting into my skin. I walked to the bathroom, turned on the light, looked in the mirror - my whole left arm, from finger-tips to shoulder was purple. The veins on the left side of my chest were protruding. It was time to check myself into Whitechapel’s Royal London Hospital.
My arm seemed to be getting worse very quickly. To the doctors were surprised that I was not in pain but it was extremely uncomfortable. My friend Linda was massaging my wrist and I was massaging the reverse side of my elbow without which I felt my arm would explode.
Considering my symptoms I was seen to promptly by a nurse who concluded without hesitation that I had DVT (deep vein thrombosis). I was fitted for a much to be desired pair of white hospital socks and there in assumed my stay at the Royal London Hospital. At this stage, my pulmonary emboli had not been uncovered.
On approximately the third day into my stay I had a conversation with one of the doctors checking in one me. On that particular day I happened to ask more questions than usual: “should the DVT explain the shortness in breath I’m still experiencing?” He promptly scheduled me for a ventilation/ perfusion radioisotope scan to rule out the possibility of a pulmonary embolism (PE) in my lungs.
Ventilation/ Perfusion Radioisotope Scan:
Quite the guinea pig, I was examined by a dozen doctors. To everyone’s surprise, particularly my own, the scan revealed exactly what the doctors were hoping to out rule out. I was found to have multiple pulmonary emboli splashed across my lungs. My stay in hospital and in London continued. Seeing those images for myself, what seemed like hundreds of little white freckles all over my chest…I felt very far away from home.
My treatment commenced with heparin injections in hospital and continued with nine months of taking the blood thinner warfarin. I recovered completely, with some minor scaring to my lungs. Since this experience I have learnt a great deal about both conditions. The paranoia that this will happen again remains my reality. Plane travel still makes me very uncomfortable, although I am gaining confidence with every flight. I have even managed to find my way to USA, where I stumbled across this amazing organization and your platform to tell my story. Thank you!
My name is Adriel and I just had my 29th birthday in October; a birthday we thought I may not have.
My story starts in 2005 when I was 21 years. I got two DVTs in my left calf, after giving birth to my daughter. I was so young and naive, I had no clue what a clot was or how serious they can be. I was on Lovenox for a month and that was it. I had no blood work or anything, they said because of my age, it was probably just labor that caused the clot, so I let it go and thought nothing of it.
Fast forward to 2011. I started getting mystery welt-like bruises all over, and went to the doctor to see what was happening. Well they never found out why, but I was diagnosed with the Hetero form of Factor V Leiden (FVL). The doctor told me I had nothing to worry about, and that it was probably a small factor in my previous clot. So once again I thought nothing of it.
In May of 2012 I started to experience pain in my right leg, but it was not in my calf, it was on the outer side of my right leg, right above my ankle. The pain would come and go and vary in severity so I let it go for almost two weeks to see if it would go on its own. I ended up going to ER and told them my history of clots and FVL . The doctor was convinced that I had just pulled a muscle and didn't want to run any tests. He said because of my age and it was in the other leg in a not typical clot spot that he really did not think it was a clot. So I went home and the very next night I woke up unable to take a deep breath, stabbing pains all over the right side of my chest and back. I was gasping and cringing in pain. My husband rushed me back to the ER where the same doctor from the night before, was there again. I told him what was happening (not saying a word about clots, just my new symptoms) and he looked at me and said, “I’m still not convinced you have a clot, but we will run an EKG on your heart and I guess do a CT scan of your chest.” He never came back in to tell me the results, he made the nurse do it. I had several clots to my right lung and was in the hospital for 3 days. I am now on Warfarin for life.
I almost lost my life twice, because of my age and doctors either not taking me or FVL seriously. I have been trying to do a lot of research because I believe awareness matters, and I will share my story with anyone.
Always remember, it's your life, you have to fight for it!
On June 9th, 2012, Angel was rushed to Sarasota Memorial Hospital by ambulance after collapsing at his and his fiancé’s baby shower. Before he reached the hospital his heart stopped and he had to be revived. Upon arriving at the emergency room, his heart stopped again where he had to be revived another two times. The heart surgeon on staff, and the one who saved Angel’s life, immediately took Angel into surgery. On the way into the operating room and then again on the operating table, Angel’s heart stopped for a total of 5 times.
During surgery, it was found that a 2-foot long blood clot had traveled into Angel’s main artery of his left lung, which stopped the airflow (i.e. pulmonary embolism). He was kept in ICU for 4 days and was given a total of 45 blood transfusions within 72 hours. There were additional, smaller blood clots that had been found, so he has been given the blood thinner Coumadin intravenously since being in the hospital. The doctor also inserted a permanent type of screen in his main artery, which will catch any new blood clots that form.
While in recovery, he has also suffered from pancreatitis and fluid around the outside of his lungs. On July 5, he had to have a thoracotomy to remove infection and scar tissue build up on his lung.
Thankfully, Angel was strong and survived this ordeal. He has been in the hospital since then, slowly recovering. He has suffered from depression and anxiety that has required medication to help recover, and he speaks daily with a therapist 1-on-1 to help him cope. Brain damage has not been detected to date.
Many of the medical staff at Sarasota Memorial Hospital have called Angel, “the miracle guy.”
In March 2011 I decided to go on the pill. I started Ortho Tri Cyclyn Lo on March 13, 2011. For about a week, everything seemed okay. I had a cough, but I figured that was from the light cold I had before I started the pill. I noticed little things like once I woke up, my back hurt really bad and I didn't know why. The pain subsided a little bit, but days later I noticed the back of my upper thigh felt bruised, I figured that was from falling in my heels a few days before. As I was noticing all of this my cough was getting worse. I put off going to the doctor because I wasn't full time at my job so I had no insurance. Anyway, as the cough got worse, I also noticed I got really tired. It starting getting to be a drag getting up and going to work. Again I blamed other things, this time I figured it was depression (from having problems with my then boyfriend). I realized something was really wrong one night I had a coughing fit and I lost my appetite. I woke up coughing and when I took a deep breath it felt heavy and hurt on my left side of my chest, like it was my left lung.
It was then that I started getting nervous about blood clots (knowing they could be a side effect from the pill) I went to my mom’s at 3 a.m. because I got so freaked out. I calmed down and fell asleep. I felt better in the morning and went to work exhausted, and coughing. A few days later the pain woke me up again. I starting noticing little drops of blood in my phlegm. So I finally went to the ER on April 7. He told me I had Bronchitis. I started taking antibiotics, but started feeling worse. I kept waking up all throughout the night coughing with intense pain in my back. It was my body warning me, something is very wrong. I went to the bathroom just a few feet away and I was out of breath and sweating. On April 8th (the next day) I went back to the ER. This time I told them I wanted to be checked for blood clots. They looked at me like I was crazy and lectured me for coming to the ER when I didn't have insurance; just as I thought. They walked back in the room shocked after seeing the results of my CAT scan. "You DO have blood clots, multiple clots in both lungs." They started me on Heparin right away. They put me in the ICU, but they said my vitals were all stable enough to be moved. The pain was unbearable every time they moved me! I cried a lot and had to be given Xanax and other medicine to help me sleep because I was so scared. The morphine didn't help the pain either, it just made the pain tolerable. The bed was comforting because I didn't have to move.
They kept me on bed rest for about 2 days until I got an ultrasound on my legs to check for any clots. It came back negative. When they had me sit up, it was terrible! Not only was the pain horrible I coughed so hard fluid was shooting up. I woke up sweating a lot and they told me I had pneumonia too. Ughhh it was horrible. I thought I was going to die when I left the hospital 5 days after being admitted. I felt so weak because I had hardly eaten due to being so sick and so full of pain. The mornings where the worst, I'd sit up in the morning with a huge coughing fit, I even coughed up blood (gross, sorry). I had a sharp stabbing pain in my lungs when I’d laugh or cough. My doctor didn't seem too worried. He explained to me, I had a lung enrapture and that’s what was causing my pain. I was told to take Tylenol so it would go away, and it did.
Little by little I felt better just like my doctor and the nurses told me. Now my brother has a blood clotting disorder, Antiphosliped antibody syndrome (sorry it's spelled wrong) and he has gone through the same experience. He had to fly out to California to get the scar tissue in his lungs removed because he was only breathing on 20% lung function. He's on blood thinners for the rest of his life. I was on Warfarin for 6 months. My doctor tested me for disorders, including what my brother has, and they all came back negative. He wanted me to get retested after I went off the blood thinners because some tests are not as accurate on Warfarin. I never got to get the tests done, but I kept checking up with my doctor. He told me that I could do the tests, but the fact I have never had this problem before the pill and I was doing great after Warfarin, and I should be okay. He told me "I'm very confident the contraceptive was the cause, I will write you the prescriptions for the tests for peace of mind, but I honestly think you should save your money since they are expensive with no insurance." I still have the prescriptions for the blood tests, but I feel okay and I believe him. When I get some insurance I’ll get it double checked. I still get a little bit short of breath in the humidity and around cigarette smoke. Sometimes I notice I can actually feel some damage that has been done when I inhale in my left lung (nothing major, just annoying). Plus, I've always had a touch of asthma and anxiety issues. Sometimes I still get a little worried, but all and all I'm usually feeling 100% back to normal. I've joined a gym and waitress now so I'm always running on my toes. It took about a year for me to fully recover. Birth control makes it seem like it’s so rare to get blood clots unless you’re over 35, smoke, and are overweight. Well it happened to me...I was 30 years old, not overweight and a nonsmoker.
I had some seriously awesome plans for the last summer. I chose to take an art class. My family did its yearly trip to visit my dad's family in Miami. And top it all off, we were going with my brother on a school trip to Germany. In between each activity, I had made plans with lots of friends that were home from college. I was excited.
So, on the last day of my art class, in May, I sprained my ankle. This doesn't happen too often, but I do have some pretty weak ankles. I went to the school's health center, and they told me what I knew, and I went home with crutches. My parents were really upset as we were leaving for Miami in a week. I did everything I could to possibly make my ankle feel better: ice it, elevate it, you know, the works. The time to leave was upon us and my ankle was almost better. I hopped in the car and 14 hours later, we were in Miami. The first few days there were fine! We unpacked, visited our family and we were having a great time. One day, while at the mall, I suddenly had this screaming pain in my right knee. I had to sit down.
We went home and determined that it was just a muscle that was pulled due to the sprain. We were confused when the pain persisted for the next week and a half. My mom came in the room and saw that my leg was swollen; the veins were very noticeable, and my leg was radiating heat. We had a passing thought to go to the emergency room, but we decided to just go to the doctor when we got home.
After the drive back, we had a few days at home before we left for Germany. We had gotten an appointment with an Orthopedic doctor. My mom and I waited for what they would tell us. He looked at my leg, then looked at me and told me, "Sorry, but you're not going to Germany." My mom and I were confused. He told us that he thought I had a blood clot, but he wasn't too sure. My mom told the doctor that my grandfather goes to a pulmonary surgeon. The doctor told us to rush into his care immediately.
After quickly setting up an appointment, we rushed to his office.
The rest of this day was a blur. My parents sat in the doctor's office as I was in a room getting an ultrasound on my leg. I was so scared. They confirmed I had deep vein thrombosis and it was in my knee. The doctor told me that it was caused by three things: the sprain, then the added clotting risk from provera therapy, and the 14 hour trip to Florida sealed the deal. He explained that I could have died on the plane to Germany.
Next thing I knew, I'm was at home with a nurse showing me how to use Lovenox. I had convinced my family to go to Germany without me. During the next two weeks at home, my friends took me to the doctor's office, kept me company, and made sure I was ok giving myself the shots. I am so thankful for their support; I never would have been able to do it myself. After a week, I began a transition from Lovenox to Warfarin. I was really bummed out that I couldn't eat greens the way I before. So I started to keep a journal with how much Vitamin K was in foods.
About a month after this began, I was offered to go on a trip to Tennessee with my boyfriend's family. I was approved to go on the trip. I had a lot of fun, but long story short, the clot in my knee grew exponentially. It was getting dangerously near what I believe is the Femoral artery. I was again put on the Lovenox shots, this time for 16 days. During this time, I had to start school again. So imagine the faces of my friends when I had to inject myself; good times. I began to paint subjects having to do with clotting; circles with large clusters on them, badly bruised skin, and needles. Most people in my classes now know the signs of blood clots.
Around this time, I had reached out on tumblr to find other people my age with blood clots. One in particular, Kass, is incredibly nice and we still talk on and off; which really is a huge help! I also started a tumblr called Blood Clot Support (bloodclotsupport.tumblr.com
) where I post easy to read articles about treatment and users can submit their own blood clot/pulmonary embolism stories.
I recently went back to the doctor and found out I should be done taking Warfarin in January. I'll be incredibly happy when this is over, but I will still do work to raise awareness in the community through art and blogging.
I'm Doris Belleau. I'm 21 years old, and I have Deep Vein Thrombosis.
On January 20th, 2012 at 7 am, I went in for surgery to remove my spleen. The surgery ended up being more in depth than I was prepared for. This is the surgery that started a chain of events that would forever change me.
I had a bit of a rough time after my surgery, spending 4 of my 5 day stay in PPCU. I do not remember much of this time; I only know a lot of what husband has told me. I know I was on heparin shots my entire 5 days. I know they thought I was getting an infection, but I wasn't. I was dealing with a fever of 105 at one point and a heart rate that was up to 130bpm. I had tubes out my nose and throat and a drain out of my stomach. I remember thinking I would never get out of that hospital bed.
After 5 days in the hospital it was time for my husband to take me home. Man, was I happy to see the house. We set up 'camp' for me in our family room in the basement, as it had everything I needed (minus a kitchen). I slept in a recliner, and honestly, it just felt so good to get home! When I was sent home it was without any tubes or any blood thinners, only pain pills. My only instructions were to come back to the surgeon for a post-op appointment a week after coming home.
That first week went really well. I was weak and tired, but I could tell I was on the up and up. I went to my post-op and got raving reviews; I was even told I could start driving again. I remember thinking when he told me this “Wow, I just don't trust myself for this yet.” A few days later I started to notice I was no longer feeling better, I actually felt like I was moving backwards. I started getting VERY tired. The thought of driving, showering, or doing anything made me cry. I could not imagine leaving the house because the effort that went along with it wasn't worth it to me. I also started having this weird back pain. I figured since I had not been as mobile as I normally was and sleeping in a recliner, I had just bugged my already crappy back. I called my surgeon and he figured it was due to my back problems and told me to just go get a massage.
I never got that massage because my back started feeling better, until week 3 post-op. On that Thursday, the 9th of February, I was really starting to feel that back pain again. It was more comfortable for me to stand up and walk than it was for me to lie down. I paced a lot, but it would wear me out. I started thinking more about that massage, so I called my lovely massage therapist. She had no room for me that evening, but made an appointment for me the following day, Friday February 10. I made the appointment later in the evening so my husband could drive me, as I still was not comfortable trying to drive. That Thursday night, I didn't say much to my hubby, but the pain was getting way worse. I couldn't sleep. I was back to taking pain pills again and they were hardly making a difference.
On Friday, the 10th, my husband came down before he left for work to check on me. I begged him to help me go up to our bedroom, thinking if I could lay on our Tempurpedic, I would feel better. He got me propped up and in bed. I seemed ok for a bit. He left for work and I started my day of pacing. I just could not sit or lay, even in my bed. However, I could not pace long, I got too tired. I remember going and taking a shower and it wore me out. I got dressed and was ready for my massage; this was going to be all I needed.
By the time he got home from work, I was crying. I was in so much pain. I couldn't lay flat without my back just feeling like it would explode. He wanted to take me to the hospital right then, but I would not let him. I wanted to get this massage, because I figured this would help everything. Begrudgingly, he took me to my appointment, where I cried the entire time because of the pain. My massage therapist was wonderful and thought that maybe I had a rib out of place from surgery, she begged me to let G (hubby) take me to the hospital.
After my massage, I could not even dress myself. G had to help me and then help me get in the car. Once in the car, I turned on the heated seats and felt better. I had him stop at the store and get me some protein drinks, as I had not been eating much the past couple of days and felt that with the massage and protein, I would be on the up and up. My body had been through a lot and I just needed time. By the time we got home after the massage and store, maybe 20 minutes had passed. I got upstairs to our bedroom and had G try to help me lay down. As soon as he got me lying down I started freaking out because the pain was so bad I could not breathe. After about 40 minutes at home, I gave in and let him take me to the local ER.
So on the evening of February 10th, I ended up in the ER. Of course by the time I got there, I was feeling ok; I could lie down, walk, whatever. I felt like I didn't need to be there, so I was hoping for a quick in and out checkup and I would be on my way.
They got me back in a room and decided since I was only 3 weeks out, to the day, of my surgery that they wanted to make sure I had no bleeding in my stomach. They really thought after checking me over, I just had back pain, possibly even a rib out of place and nothing major. They ran a scan on my stomach and found no blood so they ended up just giving me a pain killer and muscle relaxers. Needless to say I was feeling pretty good after this!
The head of the ER came in and was talking with me. I felt ok with all my test results, my breathing, etc., but just in case they were going to run a test to check for blood clots. The only reason he felt the need for this was due to the fact that I was only 3 weeks out from surgery and it was just to be cautious. I had no signs of clots, so he really wasn’t worried; it was just to be safe. I remember telling G before they took me in for the test “I have no clots, they are going to waste time and money on this test, come back and tell me I have nothing and send me home.”
So they ran the scan on my lungs and sent me back to my room in the ER. I was laying there watching TV when the head of the ER and my nurse came back in. They both started with “we are shocked.” I had multiple clots in both of my lungs.
Now remember, I had none of the normal signs of clots. No coughing up blood, no hard time breathing, no rapid heart rate...nothing! I still was feeling good from the drugs they had given me, so it really did not sink in as to what was going on with me. Actually this did not happen for another 3 weeks or so.
They told me they were going to give me a shot right away of a blood thinning drug, Lovenox. I then asked if that was it and I was going to be sent home?! Can you tell I was drugged??? LOL. They told me they would have to admit me and I would be starting a regimen of drugs and shots in order to help with the clots.
I ended up spending 3 days on the pulmonary floor, bored out of my mind. I didn't feel sick because the meds and shots were helping and I thought it was stupid to be in the hospital. I actually was known as the pacer: walking the wing of the floor over and over.
I was sent home after 3 days of being monitored on Coumadin and Lovenox shots until my INR level reached 2.0. The first couple of days at home at home were rough. I needed G to be with me as I got used to my meds and shots - meds once a day and shots every 12 hours. I then had to start going to a Coumadin clinic to have my blood levels monitored.
I was lucky and only had to be on the shots a week after getting out of the hospital, but I will be on the Coumadin until January 8th. My life without a spleen and on blood thinners can be very tough at times, but I refuse to let it get me down. I think once I am off the blood thinners, things will be a bit easier, but only time will tell.
I do deal with side effects from everything, the biggest being PTSD. If I had just had the surgery and had my spleen removed with no other side effects, I believe I would have been much better off mentally, but the clots really threw me for a loop. Sometimes I still cannot believe this happened to me. I was barely 30 years old and pretty healthy. I was never told about the chances of the clots, not only with abdominal surgery, but especially the removal of your spleen.
Within a few weeks after finding out about my clots, my grandmother was diagnosed with a DVT and massive PE. We are both very lucky to still be here!
My goal now is to get the word out about clots. So many people do not know how many people die each year of clots. It is not talked about and that needs to be changed. I am determined to move forward with my life and deal with everything that has been given to me. Part of what helps me move forward and heal is trying to help others. If my story can help make even just 1 person more aware, then it's all worth it!