So in the last 3 weeks I’ve been in the ER 3 times. The first time I was diagnosed with cellulitis in my leg, was put on antibiotics and it cleared up. Then I was on a Lovonox bridge (blood thinner shots) so I could have my IVC filter removed. I started having stomach pains and spasms. So I go to the ER, the doctor does an x-ray, does an ultrasound and tells me I’m fine. They tell me to take some over the counter medication and send me home.
I take the over the counter medication and in 12 hours I am weak and no better. So we go back to the ER. They run my blood tests again and my iron and blood counts have dropped dramatically in the 12 hours since I was last there. So they run more tests. They then tell me that I have abdominal bleeding. So I’ve gone from you’re fine you are wasting my time to you could be bleeding to death….yes that is my life.
So they start to scramble to figure out where the bleeding is coming from. They do another ultrasound and figure out that I have a hemorrhagic ovarian cyst. So now they are asking if I will accept a blood transfer, and are prepping me for emergency surgery. Apparently because I was on the Lovonox bridge the cyst ruptured and never stopped bleeding.
So we went into surgery and I came out like a champ! I lost a LOT of blood. I am really bruised due to the blood loss, but I am on the mend now. My message in all this is- you know your body. I knew after 12 hours that I was worse, I knew I needed to go back. If I hadn’t gone back I could have bled to death.
I am really happy that I knew to go back, that I went back and they found the real problem. I wish I didn’t have to have another surgery this year, but I am feeling better. I am taking life slow right now, making sure to rest. When you need to slow down life has a way of making sure you get the message!
Moving in general sucks, but not being able to help with the moving really sucks. This is the first time that I have moved since being injured. I keep being reminded of how little I can do. I can’t pack because that involves bending, lifting, squatting, or a long list of movements that I physically cannot perform right now. Then I am reminded that when we are actually moving I won’t be able to help there either because oh yeah I can’t lift anything…so yeah…. But I am able to supervise and help with the massive purging that we are doing before we move.
I also got the results back on my genetic testing. So I do NOT have Factor V Leiden which is what my specialists thought I had. I do have a genetic mutation that can cause blood clotting. But it’s a lesser known one. I am also fortunate enough to have 2 variations of the gene..yeah you know me the overachiever! So the hematologist is going to be doing more testing on me when I go back next year to check some other things. This does make me happy that we did the testing. I think knowing that extra piece of the puzzle.
I am starting to feel empowered getting one more piece to a possible one million…one billion..maybe even one trillion piece puzzle! I mean every test that brings us closer to figuring out what the answer is, how we can prevent another incident like last year would be great. I really don’t want another massive blood clot, however my story has helped three people very near and dear to me seek medical help for what they thought were blood clots in their legs. All three times it was cellulitis in varying degrees but in two of the cases the people almost lost their legs to the infection. In one case the person went to the ER because of my story they feared it was a blood clot and they knew how deadly they are and went verses waiting for a doctor’s appointment.
If one person can be saved from my experience then my story, my experience then I feel like I have contributed. Sure I would have rather NOT gone through an almost deadly saddle pulmonary embolism, but I can’t change the past. I can however use my experience, strength and hope to help others!
So I got my blood drawn this week for genetic testing for genetic clotting disorders. My doctors believe I have Factor V Leiden. I was tested for several others, but that is the one that they believe I have. I am the one who pushed to be tested. I know this might sound strange to some people, but I am at this point where I just want to know.
Last year’s events changed our lives forever. There is nothing we can do to go back in time and change what happened. My clotting risk went up as soon as I had that saddle pulmonary embolism. I have been working on reducing my risk for a 2nd clot, but I want to know if there is a possible genetic factor we need to be aware of when we are making medical decisions.
Every medical decision is about pros and cons, weighing the positive outcomes against the risks. We know that when it comes to making medical decisions for me we roll the dice. We don’t know what will happen because I’ve had complications, I’ve had unfavorable outcomes, but I’m here. I am alive and walking and here. I take each day with the Grace of God and the joy in my heart. I know how lucky I am to smell the roses and see the sun rise and the sun set. I know how important it is to tell the people around you that you love them. You have today. You have no idea what tomorrow will bring so stop thinking about it. Live in today, live in the present.
The morning of my massive blood clot I made the wifey breakfast in bed and I have not done that in the last year. There is a psychological reason. For a long time we could not bring ourselves to have ham and eggs (which is what I made that morning) because we were instantly brought back to that morning and the fear we felt. Wifey asked if now that it’s been a year if she can have breakfast in bed again..I told her I’d think about it. I honestly hadn’t realized it. It was just something I had stopped doing subconsciously.
There are things in life we can control and there are things we cannot. I cannot control my genetics. They were born with me. There are other things that I can control like my diet the foods that I eat, and the amount of sunlight that I get each day, etc. I am focused on controlling what I can and accepting life on life’s terms. So no matter what the tests results show I am at peace. Nothing has changed inside of me. I am the same person I was yesterday, and I will continue to be the same person tomorrow. This just gives us one more piece of that 1,000 piece puzzle….well with me maybe it’s 5,000….
So almost a year ago is when I had doctors telling me if you get out of this bed YOU’LL DIE! Normally they say those types of things for dramatic effect, in my case they were saying them because it was true. I have never in my life been that sick. I came pretty close one other time when I had gallstones and developed pancreatitis, but last year when I had a saddle pulmonary embolism that was definitely a brush with death I wish I had not had! There is nothing scarier than looking multiple medical professionals in the eyes and seeing sadness staring back at you.
I said this to my wife, the nurses tried to hide it, but every changing of the guard they would come into my room and as soon as they found out I was their saddle pulmonary embolism patient you would see it in their face. That brief moment before they could plaster on a fake smile that shock of here was a young patient who was given an almost death sentence. I still get doctors who will review my medical records and go this can’t be right and I’ll go yes I’ve had a saddle pulmonary embolism. They just look up at me almost startled. I just smile-the biggest cheesiest smile I can for them.
It’s unusual for a patient to have a saddle pulmonary embolism I have been told that about 1% of the population get saddle pulmonary embolisms and I am lucky to be in that 1%. The thing about blood clots is they don’t discriminate based on age. In my case we feel like all the back surgeries aggravated an underlying genetic predisposition to blood clots (to which I am being genetically tested soon), but anyone can get a blood clot. So it’s important for everyone to realize that no matter how old you are, you can get a blood clot!
The issue with my blood clot which did start out as a DVT (Deep Vein Thrombosis) is that my leg did not swell any! So I keep checking for my leg to swell, and I do not remember it cramping either. My symptoms were I was having chest pains a couple days prior which I wrote off as getting a possible upper respiratory infection due to change in weather, then two days before I was hospitalized my pulse was going through the roof which I took my blood pressure and my blood pressure was normal. The day before I collapsed I had a bad cough and I was coughing up blood that morning, but I thought I was having an asthma attack to be honest, and we went to the ER. I was diagnosed with pneumonia. I was given antibiotics and cough syrup and told to rest.
Had the doctor done a D-dimer blood test he may have seen that I had a blood clot, since he never ran the blood test we have no idea if I would have been diagnosed a day earlier or not. However I had the classic symptoms of a Pulmonary Embolism and since I had just had major surgery the doctor should have done a D-dimer blood test on me just as precaution.
I am blessed. I am glad that soon I will be here another year, and I plan to be here MANY MORE!
One of my biggest pet peeves is when a doctor or other medical professional is not listening to me. I know time is limited and I do my best to give you the pertinent information to you, so you need to listen to me. Last year a doctor did not run a blood test on me and missed a major diagnosis. I got really sick because the doctor didn’t listen. So when I had this one guy not listen and thought it was cute that I kept harping that he wasn’t listening, I laid down the law last week. I told him about the major diagnosis that was missed and how serious it was. I explained that he thinks its cute that I harp that he doesn’t listen, but for me it could have been a difference between life and death and I’m not exaggerating.
So his boss called me a ball buster because I was giving him a hard time yet again, and I owned it! Yes, I will give you a hard time yet again! Plus his boss was who I am there to see anyhow. I know that I have a LENGTHY medical file/history so I try to keep it as short as possible which isn’t always easy. I really do try to keep things on point, but unfortunately with me one thing is connected to another.