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.
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 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!
Why be normal? I mean normal is overrated right? This week has been a lot of crazy feelings and wanting to jump through the phone. There has been a lot of turmoil from one person not doing what they said they were going to do 3 weeks ago and it blew up in my face this week. So I spent the majority of this week scrambling to try and get it fixed.
Of course on the upside of my week Mom took me clothes shopping last week and I got to wear shirts that actually fit and that made me feel good. I have been losing so much weight that the clothes that I currently own are getting bigger and bigger on me. Mom told me it was time to get some shirts that fit so we can start donating the biggest clothes again. I had already dumped my closet of one size and soon I will be ready to do another dump. I am down about 120lbs. I am feeling proud of my accomplishment. I am over halfway to my goal weight that was recently given to me by my doctor.
I just wish my pain levels would go down, even a little! That first year the stupid doctor who will not be named blamed my weight for my pain, well guess what doc? I’m a lot lighter and I am still in pain. It’s also fall which means the temperatures are going to start dropping and while I welcome the cooler temperatures I remember how my hardware didn’t like the cold last year!
I am working hard in physical therapy to build up my muscles as I continue to lose the weight so I know that I have a healthy body. I am eating healthier, drinking lots of water and taking care of me. Next month we are going to look into doing the genetic testing for blood clots and hopefully find out if I have a genetic disposition for blood clots which several of my doctors and myself believe I do. While that’s not the best thing in the world I would rather know for sure than guess. Having a massive blood clot was one of the scariest moments in my life and I just want to know if that could happen again. Of course just because I have a disorder doesn’t mean it would happen again, it just means there is the possibility. Also knowing we can take different precautions so the likelihood of a repeat is less.
When you have so many major medical problems its about knowledge and prevention. You come to understand that things in life are uncertain and you do your best to prevent what you know could happen. You don’t stop living your life, you just make subtle changes to try and prevent things. I stopped eating high vitamin K foods while I’m on the blood thinners because it makes life easier right now. Once I’m off blood thinners I probably will be more aware of how I eat high vitamin K foods knowing they thicken the blood.
Life is short. This morning we were laughing and giggle and I was thinking about how 3 years ago we were getting ready to be married. Now wifey is stuck with me and has stood by my side through all this stuff. She’s a good egg. I’m blessed. We have a good life. It’s crazy, it’s silly and it’s full of laughs.
Last year I had my low back fused, and then 1 month to the day I had a saddle pulmonary embolism that according to the doctors should have killed me. So this year when I had my neck fused I’ll be honest the first 30 days I was holding my breath some. We did the blood thinner shots right after surgery, we did the IVC filter and I am back on blood thinners until the filter comes out probably in October. All that being said, I still held by breath until we hit that 30 day mark and I finally felt like I could breath again.
This post surgery recovery seems to be going more smoothly, and I don’t know if its because it’s so much higher that it has not limited my mobility in the same way that the low back did, or if it’s because this is my 4th major surgery in 2 years so I’m just so used to it that I’m a pro now. In all honesty…it’s probably a combination of the two. I never thought I would become a pro at having major surgeries and it’s not resume material, but you roll with the punches, and keep a good sense of humor about life! I know I haven’t posted in almost two weeks which is unusual for me, and I think I wrote six draft posts and trashed all of them.
I just have been nervous the closer we got to that thirty day mark, a bit restless because we were getting to that thirty day mark and no matter how much you tell yourself this time will be different there is always that small voice in the back of your head to remind you of last time. Every morning I would pass the box of empty shots and think to myself this time WAS different. We learned a very valuable lesson and you ARE fine.
It’s hard when you have had that kind of experience and then you have to turn around and in less than a year put yourself in almost the same circumstances that you were in when you had medical professionals tell you that you should be dead. I am the first one to tell you I am very glad to be alive. I know I am blessed beyond words to be alive. The more people that hear my story the more I realize how blessed I am, we have met several people over this last year who have lost loved ones to saddle pulmonary embolisms. They are no joke. I thank God everyday that I am alive.
I am coming up to the 1 year mark for my 2nd and 3rd surgeries (they were done on the same day) and I think that is why I am so restless. I know that was the event that started the dominoes falling. I know a lot more now then I knew then and we learned from everything that happened. I have a really weird body!
Hopefully with more testing we’ll get some answers on what is going on and why stuff keeps happening. I think we’re headed in the right direction and then maybe I won’t think my body is so weird, it will just be my personality!