Here is my long health scare story....
I had lower back pain and abdominal pain in early July so I went to the Dr. This was a new Dr since we had just switched insurance companies after 10 years so I was a new patient and it was a new Dr for me. I was seen. Blood work drawn and was sent home with " if nothing changes in a week, give us a call. The pain went away so I did not call but I got a call that I was B12 deficient and Vitamin D deficient. I was to get B 12 shots weekly and take Vitamin D. So life went on. Summer was flying by and the weather was amazing!
The first two weeks of August my lower back hurt, my legs would get numb driving over 30 minutes and I had a cough that was just bothersome and non stop. I self diagnosed this and I decided my bed was horrible so I flipped the mattress and that I have allergies so I took some allergy medication. That did not work and I suddenly could not even smoke a cigarette. Oh the horror! I thought I could have the flu?, so I did a nebulizer treatment. Nothing. Nothing made my cough better or be able to smoke. I called the Dr and was seen on a Thursday Aug 14th. I was told it was most likely allergies since my lungs sounded clear and was sent home with a Z pack and cough medication. Three days later, still feeling the same way, I went to bed Sunday night and then woke up at 2am with severe pain in my right shoulder. Pain to the point I could not lay on my side, back or belly. I was crying and went down to sit on the couch and managed to sleep sitting up on and off until 6 am.
I got up and dressed like any other Monday. The pain had gone away after a few advil so I felt ok. I went to my first appointment at 9:30 in Hanover. I lit a cigarette at 9:45 and could not smoke it so I decided to go to the Emergency Room at South Shore Hospital. Something was not right, I could tell. I know my body.
I was checked into the ER, had a EKG, sat in the waiting area. Was taken for a chest xray. Was told to sit back in the lobby since the back was full. It was now 2:30 pm and a nurse finally came out to bring me back to a room. I was told I needed a IV because the Dr wanted a Cat Scan of my chest. I asked the nurse how long this would take as I needed to be home by 4:30-5:00 and nobody in my family knew I was at the ER ( I just figured I would run in, get looked at, leave, right? no big deal?) she said I should be if all goes ok. The ER Dr. came in, told me I would have a nebulizer treatment and have the Cat Scan and should be on my way home by 4 if all goes well. Perfect. I get the IV, taken for the Cat Scan ( not a fan of the contrast that makes your entire body hot) and back for the nebulizer. Just as the nurse was starting the treatment the Dr walks in and takes the neb out of my mouth sits down and says " Erica, your body is full of blood clots. I need to put you on a IV of blah blah blah and get you sent to Brighams and Womans Hospital asap. ME: UM WHAT? WHAT DO YOU MEAN? DR: You have dozens of blood clots in both lungs, blood clots in your vena cava vein ( google it) and the veins going out to your kidneys. People typically get this from cancer. ME: I'm sorry, WHAT? Cancer? Blood Clots? Ok so what is wrong with me? DR: I am not sure why so many so we are sending you to the best cardiac unit in Boston. I am calling for a transfer now. ME: Um ok but I need to call my husband and mom who is watching my son, they don't even know I am here. DR: ok, make your calls, I am going to get you transfered via ambulance. FLOOD GATES OPEN. I am now in complete full on ugly crying and can't talk. Cancer, did he say cancer? Blood clots, where? what? What the fuck ?? BEN: Hello... ME: unghbfhbfhdbldsbfdsbhflbd;akdshbk ER nfmngingjnflsjfnsn Blood Clots mdsjnsjdnsjdnsjdnfhbfejfnejndjfeen Boston nfjsnsnjsndjsndjsndsjdnsnd COME HERE NOW dmikmnjndnfdjnfdjnfjdndfnjd. I think that is all Ben heard. ER, Blood Clots, Boston, Come here now. I'm crying to the point I can't talk ( turns out I was soo PMS and didn't know it) So I call my mom. She watches my son Kurt everyday at my house. I call, no answer. I call again. No answer. I called her 14 times. She finally call me back. ME: H-e-lll-o MOM: Hi did you call? ME: I'm in the ER, my body is full of blood clots, sending me right to Boston. MOM: WHAT!!! WHAT ARE YOU TALKING ABOUT! WHAT DID YOU DO TO YOURSELF! ME: Are you kidding me? Nothing, I came to the ER cause my shoulder hurt and now I am full of blood clots and going to Boston. MOM: OH MY GOD ERICA, DOES BEN KNOW, ERICA, OMG.....blah blah ME: MOM, Ben is on his way. I have to go.Ben will call you. Ok, I call my mom from the ER and she is mad at me? She was so shocked she was yelling. Anyway, Ben get's to the ER minutes before they wisk me to Brighams. I was so happy to see him. I lost it. Can't talk because totally crying. I asked the nurse for a nicotine patch since I had not smoked since 9:45 am. She did not think there was enough time before we left. Then I said to her " Um, I am not leaving here without a patch because god knows when I will get one and the last thing I wanted was cigarette cravings" Let's just say I had a patch on in 2 minutes, IV of heparin in, put on bed with wheels and I was in the ambulance.
I was told I had suffered a Pulmonary Embolism in both lungs. I was lucky to be alive. Very Lucky
The woman in the Ambulance was fantastic. She asked me all the questions the ER Dr. did such as " Do you have family history of blood clots? Did you have surgery lately? Did you travel long distance? Are you on birth control? How the hell did you take a walk on the beach this morning? how do you look so normal with all this going on? Most people can't walk, need oxygen and look pale? The answer to every question was no.
I get to Brigham and Womans ER. Same questions asked by 3 admitting Dr's. So what brings you here? So I start talking then nurse say's " DR, let's just get her wired up, please look at her chart" So they put the heart monitor on me, ask me all the same questions. They give me some medication and tell me I need to sit tight and wait for my room to be ready. Finally, I am wheeled to my room at 9pm. It's a long trip down a elevator, underground through tunnels, back up elevators then finally wheeled in my room to my entire family sitting in there. My Husband Ben, Mom, Dad, Brother Joe, and Sister Vicki. Can't talk totally crying. Balling. I just want water. Lots of water. So I explain my day to my family who all had no clue I even went to the ER. Finally two Dr.'s come into the room and introduce themselves and explain to all of us what is wring with me.
" Erica has suffered DVT and Bi-lateral Pulmonary Embolisms in both lungs with extensive clot burden and infarction ( some clots exploded). With so many clots in each lung and the lenght they have been there, she is extremely lucky to be alive. She also has many clots in other veins which tell us she has been throwing clots for a while. We have her on Heaprin to make sure her blood will not clot while we run tests to see why this has happened. She will be here for a few days" My brother who is a super hypochondriac asks the question that was making me scared " Can these blood clots break free and go to her brain and cause problems? NO. NO they can't. They are in her lungs with no where to go. PHEW. My whole body relaxed. So we talked to the Dr's and told them what I felt this summer and they asked me the same questions all the other Dr's asked so they called it Idiopathic Pulmonary Embolisms. They do now know what caused them as of right now. So everyone went home for the night. I tried to get to sleep as I was exhausted but then I had severe pain in my shoulders and back. Apparently the clots blocked the blood and oxygen to the ends of my lungs so it caused bad pain. Then it got worse. Turns out once you are on the Heparin everything starts moving along so now you feel the side effects from the clots. The pain was not fun.
The final outcome after a week of tests in the hospital:
Take Xarelto every day ( anticoagulant) for 6 months, possibly life! how lucky am I!
Idiopathic Pulmonary Embolism ( for now, no known cause)
DVT in right leg
Small tumor in right leg ( no conern, thank god, how lucky am I!)
Blood tests to see if I have any blood disorders will take 6 weeks
Go home and rest for 2 weeks and follow up with your dr.
Seems simple enough, right? Wrong. Wrong. Wrong. Wrong.
I spent 2-3 weeks at home, resting. Pain was awful but got better. I was very tired at the end of the day and I was taking naps. Thank goodness we pay my mom to watch my son Kurt at our home everyday and not send him to day care. She is the best and helped big time having her here to help if I needed it. During the 2nd week my legs started to get very swollen and hurt at the end of the day so I was elevating them every night for a few hours. The pain never went away in my back/shoulders and my leg pain was getting worse.
My local Dr mentioned I wear compression socks to help with the swelling and it should ease the pain. He also said as the clots naturally disolve on their own, my legs should get better as the fluid can move freely.
It's now Friday Oct 3rd, my follow up appointment at Brighams with my cardiac doctor. I meet with my Dr and he asks how things are. I tell him the pain in my back and show him my legs and tell him how they hurt as well. He gives me 2 scripts for compression knee socks that will help with the swelling and reduce the pain in my lower legs. Great! He tells me that the clots ( and I had many) can take up to 6 months to dissolve so you will feel discomfort until then. OK, great! So we set a follow up appointment in March. Turns out I have what is called Lupus Anticoagulant which is a clotting disorder in my blood so I will be on Xarelto for life. Time to order a pretty medical bracelet:)
I spend the next 2-3 weeks wearing my compression socks all day and night and just take them off for bed. My back seems ok, never totally better.
The first week of November I went upstairs to get my phone charger and when I got to the top of the stairs I could not breathe, I was very short of breath. Took me a few minutes. What is going on?
So for the next few days it kept happening. Flights of stairs, walking on the beach in the heavy sand. WALKING. I walk everyday to keep my lungs moving and blood and circulation pumping. I can't walk very fast from shortness of breathe so I can find lots of seaglass:)
So during my routine visit with my local doctor, I mention this to him and he sends me for a echocardiogram on my heart.
One week later I get a call. " Hi Erica, this is nurse blah blah, we got your test results back and you have pulmonary hypertension of your heart and lungs so we are asking you to see your cardiac Dr in Boston. Great, how lucky am I! Make an appointment in Boston early November. I have a Cat Scan with contrast to see if I have any new clots and to check on clots in general then go up and meet with my Dr.
LUCKY ME! Lucky Lucky me! My clots have not dissolved.
Out of every person in the world that has a PE, only 4% of people get Chronic Thrombosis. This means the clots have not gone away and are still there. This is causing the swelling in my legs, the pain in my back/shoulders,being tired at the end of the day, and so on. So I am one of the lucky 4%. My Dr tells me that the best solution is to have surgery to remove the clot burden that is 100% blocking my right lung. This is called a pulmonary embolectomy. Google it. I digest this and he tells me that at my age I will be as good as new after surgery with no more leg swelling and back issues. Let's hope.
I went in the week before Thanksgiving for a Hearth Catheteriztion through my neck to check the pressure in the right side of my heart and to see where exactly the clots are that will be removed.
I spoke to my Dr 2 weeks before Christmas. I will go in again for another Heart Cath to rule out high blood pressure ( which I do not have) then the next will possibly be a surgery date.
SO....that's my lucky story my friends. My life changed 133 days ago and hopefully in a few months I will be back to normal and just continue taking the medication Xarelto. No more smoking for this lady! I have to admit, it's wicked gross huh?! I can count on one hand the number of cocktails I have had. I don't want to mess with medications for my blood :)
I am lucky to survive this. Lucky to have an amazing husband like Ben, he is my heart. Extremely lucky to call Kurt my son, he is mine, all mine. How lucky am I! Luck that I have the closest, craziest, loudest and loving family anyone could ask for. xoxoxoxoxxo
You might look at me and say " wow, you don't look sick!" which is my goal. I try to go about everyday as normal. I take tons of vitamins, juice, eat healthy and take my walk as much as I can. I also soak in the tub in my epsom salt bath soaks I make to ease pain and rid the toxins. I am a extreme optimist and positive person and I know things will work out, they always do!
So, with 2014 coming to a end and 2015 starting this week, I decided to start my blog and share all the good things I am doing for a healthy lifestyle as well as share my journey with my Chronic Thrombosis and possible surgery.
Thank you all for reading and commenting, it means alot to me. Now start thinking of some fun and healthy goals to set for 2015! I will be posting mine on Wednesday as well as a copy of mine from 2013:)
Good night :)
Follow me in Instagram! Click here for Instagram!
Follow me on Facebook! Click here to fnd me on facebook!
No comments:
Post a Comment