So in order to get my IVC filter out I had to come off my blood thinners, go on a Lovonox bridge, and then be on a combo of my regular blood thinners and Lovonox shots…easy right? So I go back to the clinic to be checked and my INR was LOW. As in risk of developing a blood clot low. *Insert unhappy face* So now I’m looking at the pharmacist and she’s looking at me trying to figure out what to do. Well the first thing is to call my hematologist’s office to get a re-authorization for the Lovonox shots because OF COURSE I am out of those. Then the question is how much of a booster dose(s) to give me of my normal blood thinners to give me and when to re-check. Well then the 2nd problem comes in…this weekend is Memorial Day which means the clinic is closed Friday and Monday for the holiday. So we couldn’t check me in the right time frame.
Blood thinners are funny things. The way they work is they slow the time it takes for your blood to clot. So it takes a couple of days for a booster dose to take effect. So if they check me too soon and then up my dose they could then give me too high of a dose, but if they wait too long then I could stay low for too long and risk developing a blood clot which is the whole reason I am on the blood thinners in the first place. If I still had my IVC filter in we wouldn’t be as worried because I would have that protection there, but it was just taken out! Oh isn’t this Murphy’s law?
So the hematologist’s office said for me to come in their office for a check on Friday so we could see where I am at. So we got everything straightened out, but it’s frustrating to say the least! I really wanted things to be a-okay! I mean I really didn’t want to have to continue giving myself shots. I mean I am pretty sure no one voluntarily gives themselves shots unless they have to!
I know my INR will come back up, it’s just taking a little longer than normal. I figure this is just another life lesson I am supposed to be learning, I mean there are worse things in life. Of course if I have any signs of clots I am to go directly to the ER DO NOT pass Go and Collect $200!
When you love to watch medical shows and are chronically ill there are times when a show will have a character who has an illness you have, has a surgery you’ve had or has some other medical emergency that you’ve lived through and you just chuckle as you watch. Tonight was one of those nights and the character just happened to be another redhead…which also made it that much funnier. The character was a pregnant cancer patient who they decided to deliver her baby for the safety of the patient and the baby and during the delivery she had a pulmonary embolism. I of course recognized the symptoms immediately, knew she had thrown a blood clot, and turn to my wife and say you know pulmonary embolisms are deadly!
When I had my blood clot I had a saddle pulmonary embolism which is a blood clot(s) in both sides of the lungs and they are rare. Estimates are about 1% of the population will get them. Usually the person will die, they usually will not survive it, the doctors are still not sure how I survived mine. Medically I SHOULD NOT have been able to survive it. Now I have a story and I get to smile at the doctors and when they look at the scans and shake their heads asking how to survive I tell them I’m stubborn. There is no medical explanation, only divine intervention on my life. I am blessed.
Tonight I watched as the doctors explained what would happened, what the options were to the patient. She made her decision the show continued. For me they only felt there was one choice because they were sure that anything besides blood thinners would surely kill me and since it was nothing but a miracle I survived and it took them 5 days to decide that I MIGHT survive, they decided to just let my body keep surviving. I will be seeing my hematologist soon for my routine follow-up because now I get to see him on a regular basis to smile and tell him that I am a good girl. I also promise him I’m not trying to die on him.
It’s hard being a good girl! At least I am having fun while being a good girl! I have decided life is too short to be serious. Life is too short to eat boring food. Life is too short to not life it to the fullest. I just decided that I want to keep having new adventures and smiling all the time. I tell jokes and make everyone else around me smile because if you are going to make your family members lose their hair..they might as well be laughing while it’s happening right?
So after genetic testing came back positive it’s looking like I will be on blood thinners for the foreseeable future. I am working closely with my hematologist to stay on the best course of action for me with everything. The emergency surgery from December has also pushed back the removal of my IVC filter for a few more months, but I know that will happen when it’s supposed to. I was hoping it would be out already, but everything happens when it’s supposed to and I have faith that I am protected just like in December.
I also had blood work to check all my levels to make sure that things have returned to normal. We felt it would be good to re-check my iron, vitamin, and blood volume. After everything it’s good to make sure no more surprises. I mean birthday surprises are good, anemia, not so much! I have been feeling really run down still which is what we have been concerned about, but that isn’t really anything too new.
My shoulder has been bothering me more so we have been doing more physical therapy exercises to try and strengthen it. I am hoping that will help so I have less pain in it. My knee popped really loud so I’ve been upping my knee rehab at home too hoping that helps, I am also going to get new knee braces soon. That hopefully will help soon. The good part of losing weight is that they are big, the bad part is that they are big.
It will be good. On wards and upwards. ALL IS WELL!
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!
So when I lived in Spain many years ago I really got into Jarabe De Palo’s music and one of my favorite song’s is “Bonito”. The first line which I made the title of this blog translates to beautiful, everything I see is beautiful. When you keep a positive attitude things seem better even when things are bad. When I was in the hospital with my saddle pulmonary embolism I was really positive and I only cried a few times because I knew I was going to survive. The first five days I was in intensive care the doctors kept telling my family I might not make it. They were not convinced that I would survive. For five days my Mother prayed for me.
Those first five days I don’t remember a whole lot, I slept a lot, I remember I kept telling the doctors to keep me alive! I was told over and over again how close I was to death that if I were to get out of bed I could die, etc. Of course I was so weak that getting out of bed was like the last thing on my to do list! The first time I remember getting out of bed it was like freedom and then I did it and I thought am I sure I want this freedom? I still was hooked up to oxygen, IV and all these monitors so it was quite the feat to get me out of bed! Walking wasn’t that much fun having a huge blood clot sitting on both sides of my lungs!
I met with the hematologist this week to discuss my upcoming surgery and if I should have a IVC filter placed before surgery. He did not make this recommendation lightly. We looked at the pros and cons of filter placement and we both agreed that it would be for the best for me because of my history.
So while I was there I got to see the scans from my blood clot and I have to say I am glad that I know this clot is gone now. I am glad I did not see the scans while it was still sitting in my chest because if I had it probably would have given me a heart attack. The scans were something else! HOWEVER I’m smarter now on what a blood clot feels like, what symptoms I have, and we are doing blood thinners after surgery so all is well. I know that we learned a lot from my experience last year and it was a great teacher going into this next surgery.