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!
So I finally got to get my IVC Filter out this week and I tried to do it with just lidocaine, but the powers to be had me under conscious sedation. Which means I was awake during the procedure, but I was giving some sedation medication. I really did try to convince the doctor that I didn’t need any sort of sedation, but he felt with with the fusion and medical history it would be better.
So most people are like GIVE ME THE DRUGS!!! I had several friends tell me I was crazy for not willingly accepting sedation and jumping at the chance to be sedated while they were doing this procedure. Well you see what had happened was…no seriously at this point I was so relaxed I was about falling asleep BEFORE they gave me the drugs which meant that once they gave me the drugs I was really falling asleep on them. The nurse had to keep me awake which I kept saying to her I’m awake..sort of..and she goes the drugs are working. I go I was half asleep before you gave them to me!
I also realized when the put me on the table that my shoulder was not going to be happy. I did not think about the fact that with my frozen shoulder that having to hold my arm in a certain position was going to be irritating. So we had to move it around until I found a less irritating hold and then that’s where we left my arm for the procedure. Thankfully removing the filter is a short procedure.
We talked before everything started that it should be an easy in and out. The only thing that would cause it to not be an easy in and out would be if there was a big blood clot in the filter and then he would have to leave it in because it would be dangerous to remove it. If the filter was tilted and he could not easily grab it, we might have to stop and try with a different approach or if the filter and the vein had attached to one another, which shouldn’t have happened because I had mine in for such a short period of time. All of these things I was well aware of because I had discussed it with my hematologist and his PA.
Having discussions with the doctors ahead of time and knowing what you are in for makes these procedures a lot easier. Being able to sign these consent forms that list death as a possible side affect because unfortunately any time you have a procedure like this death is always a possibility- it’s easier when it’s all been explained and you know what you are in for. The filter removal was simple and straightforward. We got it out and now I am oil filter free! (Inside joke) I do not need a new one. If I have another surgery it will be discussed again if another one should be placed.
So we tried to remove my IVC filter in December and I then had a hemorrhagic ovarian cyst that left 2L (yes liters) of blood free floating in my abdomen. So emergency surgery paperwork signed between grunts and screams of pain (trust me I can deal with pain but that I don’t want to have to deal with AGAIN!) Whisked into the ER and then told I was very lucky that it was only a cyst that had ruptured (they were thinking my ovary had ruptured but there was so much fluid they could not get a clear picture…go figure!
So we figured that Lovonox was to blame in the scenario because I was on a bridge because I was supposed to get my IVC filter out the next day. Yeah talk about timing! So I make frantic calls to get that canceled! So now about 6 months later we are planning to try again. So I am on shots again..oh the joys..does anyone really enjoy giving themselves shots? And I’ll be glad when this is all behind me. This IVC filter was only supposed to be TEMPORARY! It has over stayed it’s welcome! Get it OUT OF ME! IVC filters are tricky things they used to be placed more commonly to help prevent blood clots in patients with histories of Pulmonary Embolisms. Then the filters started to break and there are lawsuits galore (you probably have seen the ads on TV) so doctors do not place them in patients like they used to. I am one of those lucky patients that the benefit of placement out weighs the risks, but we still do not want it long term because they can break. Plus they can change the shape of the vein they are placed in and other issues. So the grand plan was to place it and then take it out about 8 weeks after my surgery…and then stuff just kept happening.
So needless to say I am ready for it to come out, and I will suffer through giving myself the shots so I can have it taken out and move on. We are taking life one day at a time. One medical mystery at a time. My shoulder is still giving me fits. I am rather annoyed at that. They gave me an IV in the hospital and then it started locking back up…unfair! I think it was because I held it so still, so I know it was my fault, but I am going to try and be more conscious about moving it around and working it this week.
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 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….
When you have any major life event there is a before and after. After awhile you can’t remember what life was really like before..you have this rose colored glasses view of your life. You forget how hard life was, you forget the problems you had because life is hard now, life is different now and you long for your before life. I make a lot of jokes about my injuries because it helps me deal with the fact that I will never have my old life back. I will always log roll to get out of bed in the morning. I will always have to watch the placement of my feet when I walk. I will always be careful about blood clots for the rest of my life.
When I was young I was in a major car accident, I survived. I thought that was the worse thing that could ever happen to me. I will be celebrating my wedding anniversary. I remember my wedding day and how excited I was and now I forget what life was like before I was married. You get used to what life is like now.
I am used to going to the doctor all the time, physical therapy every week. Home exercises, working to strengthen the muscles that have weakened. I was talking to one of the doctors this week about permanent nerve damage because in my thigh I have permanent nerve damage and they are concerned that I might also have permanent nerve damage in my arms. There is also a possibility there is permanent nerve damage in my neck, but we think it’s only temporary nerve damage! It’s sad when you get excited about temporary nerve damage.
But for me there will always be a before and after for me. There is a life before all these surgeries and the blood clot, a life that I don’t remember anymore. A life that I barely remember anymore. Life without daily pains, wearing braces, watching where I move, how I move, and what I do. I can’t just do what I want anymore.