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!
According to the American Heart Association 80 million U.S. adults have been diagnosed with high blood pressure…that’s a lot of people who have high blood pressure! I am one of those adults. I have dealt with the issue for a long time, I am very familiar with taking my blood pressure at home, I have an app on my phone to chart my blood pressure. I print out the readings to give to my doctor for review when I see him. It is helpful for him because I have white coat syndrome so my blood pressure is always a bit higher in his office than it is when I take it at home, so when he has a month’s worth of readings to look at he can note changes/patterns verses a single reading here and there.
So when I had my very massive DVT and it went through my heart and plopped itself in both sides of my lungs to form my saddle pulmonary embolism, it enlarged the right side of my heart. Once that happened we started to notice that my blood pressure readings have been a lot better. So either the blood thinners are doing it, or the blood clot did it or both! Time will tell if my blood pressure stays this good! I’m just enjoying that my blood pressure readings are actually normal people’s readings for a change. Like I don’t have to hang my head in shame when the doctor checks I can be like hey doc look how good they are! I should get a gold star for these!!
Cardiac health is so important and I am really happy that my blood pressure has seemed to come back down to a normal level and my readings are a lot better than they have been. I have to take my wins where I can get them!
So this was yesterday in a nutshell…I went to routine cardiologist appointment I get one way ticket to ER, I spend 9 hours in the ER before they decide I can go home, I go to bed around 1am, my body wakes up at 7am like usual……internal clock…I HATE YOU!!!!
Next month will be 6 months since I had my saddle pulmonary embolism and I need to have a repeat echocardiogram to see if my heart is back to normal size. So I had made an appointment with my cardiologist for this week before the chest pains started on Monday. So I went over everything with him. My EKG that they did in his office was normal, but the chest pains plus other symptoms he wanted to rule out another blood clot. I understood the reasoning because every time he asked me do you have this symptom it was yes, BUT…. so he said chest CT to rule out blood clot today.
So we went to the ER they took over an hour to even take me back to triage. I had another repeat EKG which was normal, they ordered the CT. They put me back out in the very full waiting room. So I finally went back after waiting for about 5 hours and they had an incoming trauma, so they had to wait for that to clear before doing the CT. So I waited some more. Which trust me when I say I totally get that waiting. I was stable and I would much rather wait for someone in a life or death situation because that was me almost 6 months ago! So we got the CT and then the doctor came back told me it was normal but now he was calling my cardiologist to find out if I needed to be admitted for more testing. Oh geez! In the notes he gave the charge nurse (and I know this because I was standing right next to him when he gave them to her) he said he just needed me cleared of a blood clot, then I was free to go. So I say okay, and we waited another hour for me to be discharged to follow up with the cardiologist. So I spent 9 hours in the ER.
Wifey laughed about only I could go in for a routine doctor’s appointment and end up with a 9 hour ER visit. At least I got a normal CT out of the deal! That should count for something….rigght? So I have more cardiac testing in my near future. I really need a punch card, I want something free! I am really happy that all my doctors are working to keep me healthy because I plan on living a LONG life. I mean I have a lot of goals to work on like farting on que. Yup I just said it! I tease the wifey ALL the time about that I am going to learn to fart on que so I can fart on her whenever I want! I haven’t quite mastered that skill yet, so I’m still working on it.
So the orthopedic asked me to fill out paperwork prior to my appointment which is fine, normally these days. Nurse making your appointment asks if you have internet access and a printer and you respond yes she gives you the website where you can print the forms otherwise you will need to arrive to your appointment 30 minutes early to fill out the forms in office. So back in what now feels like the dark ages I checked mostly the no boxes. Do you have high blood pressure? No, do you have a history of blood clots? No Do you have a history of DVT? No Do you have a history of thyroid issues? No, etc Well all the sudden all those GLORIOUS NO boxes are becoming YES boxes which means I get a LOT MORE questions when I met with the doctor. When did you have a blood clot? How long where you hospitalized? Which leg was your DVT in? Are you still on blood thinners? How long do they believe you will be on blood thinners? What is your INR? When was it last checked? etc I like easy. I like only getting a few questions. I like when my medical history was 1 surgery instead of 4, I like not having to explain neurological complications from anesthesia. I like not having to remember my last INR and the date it was checked. I like simple, I like easy I like binary!
When I was younger I took an early interest in computers now remember this was the late 80s and early 90s and computers were a lot less prevalent than they are now. I remember I first learned binary for a Brownie badge and I only had to learn it up to I think 10, but I was so fascinated by it, that I learned it to 100 and I learned to add with it, subtract, the whole nine yards. Soon I was asking my Dad how to write programs on our Amiga computer which he showed me and then he being a computer programmer would check the code before actually letting it run. (Very smart man!) He would help me take the computer apart when he updated the memory card or the modem card. I remember the time together and the lessons I learned.
So I like simple I like keeping things simple my body however has seemed to have forgotten this in the last couple of years and wants to make my medical history more complex. So I check the appropriate boxes and I try to keep things as simple as I can. I have seen more than one nurse or doctor’s head explode when I go through the medical history. Most usually look at me thinking you are awfully young to have this much stuff happen in such a short amount of time. I just smile sweetly and bat my eyes and think join the roller coaster it’s fun I promise….BUT NO REFUNDS!
Life is good. I figure as long as I am laughing more than I am crying than I am winning and so far so good!
This is the major issue for me with the fibromyalgia (besides never remembering how to spell the word fibromyalgia and having to look it up). Something always seems to hurt on top of my normal back pain. Today its my shoulders that are hurting and then I am having leg pain. Well I keep watching my legs for signs of blood clots because with having the lung infection it is important. There is this fine balance of being proactive/watchful and crazy. I am trying to stay on the proactive/watchful and not jump the cliff into crazytown. It’s hard after almost dying from a blood clot. I have been in the higher risk category for developing blood clots for years, and I knew the symptoms but when I had the symptoms of a Pulmonary Embolism I didn’t realize it, why? Because I thought I was having an asthma attack. So I went to the emergency room because I knew something was wrong and I get told that I had pneumonia which I thought was weird because I did not have a fever, I had not felt sick until that morning, but I believed the doctor. I believed him because I have not gone to medical school. The next morning I pass out I go to the hospital by ambulance I’m being told I should be dead. So you can see why I am trying not to take the short jump to crazytown right now.
I had a DVT which is harder to detect because it’s deep vein. Which to be honest I was glad it was a Deep Vein Thrombosis. If you want to learn more you can read about them at the Mayo Clinic’s website found here. I was happy because sometimes there are no symptoms and I felt like I hadn’t let myself down somehow. I wasn’t to blame for missing some sign of a blood clot.
There is so much nerve damage to my system that I get screwed up signals all the time, it’s hard for my brain to distinguish what is real, what isn’t. I get nerve pain a lot, I get leg spasms, it’s hard to diagnose me I get that, but then it’s also hard for me sometimes to sort out what’s normal from the abnormal. When do I make that jump from this is just normal pain to abnormal pain? It’s a battle I think a lot of chronic pain suffers have because you get so used to the pain you really forget what normal feels like. You forget what pain free feels like.
I laugh every time someone jokes about go pee for me. We always ask someone to go to the bathroom for us so we don’t have to stop whatever we are doing and in the winter I think we ask more often because we are cozy in bed, or we are cozy on the couch and we don’t want to be cold. We are under the blanket watching Netflix or TV and to get up means being cold. Stopping what we are doing to pee. I mean really? Who has time for that? Then the jokes about hoses and funnels start and you all laugh and then you realize that laughing about peeing probably wasn’t a smart thing to do because now you have to pee more. So you begrudgingly get up, pull that nice cozy blanket off of you and now you are cold. UGH! Once the cold air hits you, you hope you can make it to the bathroom before you pee yourself. This is why you dislike winter you remind yourself.