Tag Archives: saddle pulmonary embolism

How about you not sedate me?

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.

IVC Filter take Two

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.

Sickthisoften

Sometimes Fiction Mirrors Life

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?

Blood thinning

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!

Crazy life and test results

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!

Almost a year ago!

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!

Same ole same ole

Same ole story my back STILL hasn’t fused and no one knows why! I am going to have a CT scan done at the end of the month to figure out how much bone has grown, but for a fusion that should have completed in 6 months and it’s been 24 months (almost 25 months) to say I’m disappointed would be a little bit of an understatement. I think the best part now is that we have to watch for metal fatigue…yes that means we have to watch to make sure the metal that was implanted last year doesn’t break. Oh joy! As if I don’t have enough on my plate let me worry about if they are going to need a soldering iron too….

I will be seeing the hematologist soon and two things will happen at that appointment a) we will discuss removal of the IVC filter because everyone is pretty confident I am not going to have some massive deadly blood clot and b) genetic testing to see which genetic clotting disorder I possibly have. Which I am almost coming up to my 1 year anniversary of my first massive deadly all the doctors told me I should be 6 feet in the ground date so the fact that I’m still walking and talking is a HUGE plus! I mean I rather enjoy being a pain in everyone’s BUTT! I said that to one of my doctor’s recently and all he could do was laugh and shake his head. No other response but laughter….I think that’s a good sign…right?

Everyone is happy I survived especially me! Last night someone called me by my deceased sister’s name and I corrected them. They looked at me and apologized and I was teasing them about that if I was her we would really have a problem because I know it’s getting close to Halloween…but we’re not THAT close yet! Then I said if they wanted to go pay her a visit she has a lovely view of the river! The person laughed and said it was good to know I hadn’t lost my sense of humor (they had not seen me recently, and knew I had been having some serious medical issues).

I still think we need to start a betting pool on if my neck is going to fuse before my back! I mean the back has a 2 year lead on my neck, but at the rate it is going, my neck might actually fuse first! We could do a 50/50 split and the other 50 could go towards my medical bills! (I am of course just kidding!) It will be interesting to see which heals first my neck or my back, in some ways I think my neck will heal first because I am skinnier, and I think my overall health is better right now. Sure I am on the blood thinners, but I think the difference in the weight will make a huge difference in the outcome (as much as I hate to say it).

Which speaking of weight yesterday I put on a women’s XL shirt for the first time in years, and I was super excited. I am really working hard at taking off the excess pounds slowly and healthy. I am seeing the improvements, and I also know from doing all the physical therapy that I am also building up the muscle mass as well so I am not just losing the weight I am also building up muscle which will be important for the long term!