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!
I don’t mind giving myself shots. Sure I would much rather to NOT have to give myself blood thinner shots, I mean I’m not no one readily signs up to give themselves shots..okay well there might be a small fraction of the population who want to, but I think it’s safe to say MOST don’t want to give themselves shots. The issue with the blood thinner shots is you have to give them on your stomach which means bruising and I’m so pale that it leaves a nice black and blue mark there.
Of course since we had my INR ratio at a nice even number my blood was nice and thin that means nice beautiful bruises. Since I am so pale that mean they look even more black and blue than I’m sure someone with a more tan coloring would look. This morning I announced very proudly how many I had given myself and how many I had left with a “but who’s counting” remark at the end of the statement. I mean I’m not trying to hurry this process at all..right?
I will be glad when these shots are over because that means two things a) the filter has been successfully removed and b) my INR has returned to a nice level again. If you had asked me 2 years ago if I would have this much medical knowledge I would have raised an eyebrow, then furrowed my brows and said no and then probably squinted at you. Now I shrug my shoulders and say c’est la vie which is French for such is life, shake my head and tell some quip or joke and move the conversation into a much more light hearted direction.
I have had a lot dumped in my lap, but I try not to let it weigh me down. I make jokes where I can, and brush the rest of it off. It’s not easy. There are times when I want to sit in the corner and cry and give up. I just have learned that I can’t give up. I have to shake it all off and keep moving. I can’t give in and humor has been my shield.
I have also learned that by telling my story I have helped others not repeat my mistakes. I have helped others get medical treatment when they needed it. I will be the first one to admit I am stubborn. I don’t particularly like doctors, doctor’s offices or hospitals. I will procrastinate going, but I am getting better about getting help faster. I have learned that you can’t always wait, it can be life or death. Waiting can kill. I am blessed that I have a good medical team who helps me make good decisions. Unfortunately there are times that there isn’t a great decision to be made. The other day we had a situation where there really isn’t anything that can be done besides just treat the symptoms for now.
I have learned to be a little more patient and be an advocate. I have also learned at the end of the day I know my body the best. I know what is going on the best and I have to speak up for myself. That has been the most challenging lesson of all. Learning how to speak up in the right ways.
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 in the last 3 weeks I’ve been in the ER 3 times. The first time I was diagnosed with cellulitis in my leg, was put on antibiotics and it cleared up. Then I was on a Lovonox bridge (blood thinner shots) so I could have my IVC filter removed. I started having stomach pains and spasms. So I go to the ER, the doctor does an x-ray, does an ultrasound and tells me I’m fine. They tell me to take some over the counter medication and send me home.
I take the over the counter medication and in 12 hours I am weak and no better. So we go back to the ER. They run my blood tests again and my iron and blood counts have dropped dramatically in the 12 hours since I was last there. So they run more tests. They then tell me that I have abdominal bleeding. So I’ve gone from you’re fine you are wasting my time to you could be bleeding to death….yes that is my life.
So they start to scramble to figure out where the bleeding is coming from. They do another ultrasound and figure out that I have a hemorrhagic ovarian cyst. So now they are asking if I will accept a blood transfer, and are prepping me for emergency surgery. Apparently because I was on the Lovonox bridge the cyst ruptured and never stopped bleeding.
So we went into surgery and I came out like a champ! I lost a LOT of blood. I am really bruised due to the blood loss, but I am on the mend now. My message in all this is- you know your body. I knew after 12 hours that I was worse, I knew I needed to go back. If I hadn’t gone back I could have bled to death.
I am really happy that I knew to go back, that I went back and they found the real problem. I wish I didn’t have to have another surgery this year, but I am feeling better. I am taking life slow right now, making sure to rest. When you need to slow down life has a way of making sure you get the message!
So we can chalk up getting my cellulitis diagnosed early to being on blood thinners and always being aware of changes in my legs. I was getting ready for bed and noticed a bright red spot on my lower leg and felt it and sure enough it was hot to the touch. So to the ER we headed. After blood work and an ultrasound of my leg it was determined that I did not have a blood clot, but I did have cellulitis.
So the doctor prescribed antibiotics and rest and elevation for 2 days. So I played a lot of video games while I let the swelling in my leg go down again. I am thankful that the antibiotics are working. I know how serious the infection can get, I have had 2 friends spend time in the hospital with the same infection this year.
So the other up coming thing for me is the removal of the IVC filter! I am really looking forward to this! It has done it’s job, but now it’s time for it to go. Every time I see one of those commercials on the TV about the lawsuits I shake my head. That was one of the things my doctor and I discussed before I had mine placed. However we felt the benefits outweighed the risks.
So with the placement I did not need sedation, but now that my neck has been fused I will need it. I understand why, but I was hoping to avoid it. I told the doctor that I’m easy going, and she agreed that I was very informed and laid back. We are doing a Lovonox bridge, which I am grateful for but dislike the bruising. I don’t mind giving myself the shots.
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….
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!