So I still have a clot the size of Texas at this point; the only thing left to do is pray and onward march! I continued on with the shots, seeing my surgeon, regular scans and a total of 6 months of light bed rest.
In my last posting I told you it was war didn't I? So far I have been told by experienced professionals they have never seen a clot this big, I don't fit the bill at all for having this, and that most people with this kind of clot don't survive to even have surgery. The professionals counsel you on warning signs as I am still living life with a clot that is not shrinking in my body. More upper leg swelling, shortness of breath, skin color changes, increased pain, severe headaches and so on. I woke up one morning with stabbing pains in the back of my head. They continued all night and into the next day. I happened to have had a Pediatrician appointment for Chloe that morning and had those stabbing episodes while he was in the room. He was so concerned he called my surgeon directly and within an hour I arrived in the ER where the staff was waiting with a wheelchair at the door for me! There must have been 20 people in the waiting room as they rushed me back. All the tests revealed everything was fine and it was safe to go home. This is just an example of how serious this is. When you take on the fear that comes from the professionals who are just trying to educate you; you don't rest, no peace. Every pain is important, every symptom has to be noted you no longer have confidence in your health any longer. But where should your confidence be in the first place? If you faith is in the Lord and your confidence comes from Him you can walk through the trial of sickness with peace. However, I was not there at this point in the battle.
A few weeks later a scan revealed new clots so another venogram surgical procedure was scheduled. After this new development my team of doctors decided Lovenox was not working so it was time to take coumadin. I began coumadin and went to a hematologist. After a very thorough exam and blood work up all we could do was wait. During that waiting time my hair began falling out, that went on for about 3 months! My hairline receded, and I lost quite a bit of volume. I noticed my brain function decreased. It was almost like living in a fog. If someone asked me a random question my response is on like a 15 second delay as now, I have to process what was just said. I forget EVERYTHING. Oh my, one of my giftings is a strong memory for administration uses. I run a very tight ship and I just lost my footing. I also noted that I was cold all the time, middle of summer, didn't matter just cold. Fatigue settled in along with the new meds. So, if I sleep a full night; 8 hours of uninterrupted sleep I will wake up and still feel like I only got 2 or 3 hours. I am tired and weak most of the time. My blood work up revealed that I have 2 protein mutations. One is not usually a big deal but 2 becomes a clotting situation. This mutation has been there since birth; do you see the hand of the Mighty Gods protection over me. It was there hidden from everyone except Jesus! So with these findings we know now why I re clotted.
A few months later, yes, I'm sure you guessed it; more clots! This time my surgeon looked more closely at surrounding veins and stent placement. My stents actually blocked the clot from entering my abdomen which would have surely meant Pulmonary Embolism! If you don't see the Lord's protection over me at this point I just don't know what else I could say. You can not deny His claim for safety over me, His daughter! He noted that I had superficial veins that were just huge meaning I have been fighting clots in my body for years undetected. Its the only thing that could explain the size of those veins that should be smaller. It could have taken years for them to stretch that large! He also noticed I had grown a secondary drainage branch of veins, its rare to have a secondary system, GODS FINGERPRINTS! Thank you Lord.
Would you believe just 2 months later, more clots! This time my surgeon decided to put a 3rd stent in, realign them together and use a stent that is plastic coated instead of metal. This was done in the hopes of keeping the scar tissue from developing over the stent. This time his vein study revealed that I have hypersensitive veins meaning, they love to scar, not only do they scar but the produce large amounts of scar tissue. As they prepared me to go home my wound gushed so much blood the staff went into emergency mode. I felt like a bad episode of ER! The nurse shouted, "SHE'S A BLEEDER!!" and more nurses ran straddling puddles of blood and nearly sitting on top of me applying pressure. One nurse ran right to the phone to talk to my surgeon and I ended up being admitted into the ICU! At this point it is obvious to me the war the enemy has declared on me using my health. Every fiery dart thrown, the Lord rescued me. I mean using my own body to build a fortress of scar tissue around the blood clot making it virtually impossible for the meds to work! If that's not war what is?
My team of doc's decided I need to be on a high amount of coumadin. Instead of being on a therapeutic amount of blood thinning meds they upped the anty so I'd be on a high dose of meds. Normally a therapeutic level of coumadin puts your INR number of 2-3, 2 -2 1/2 being ideal. My dose needs to have my INR close to 4! The amount of coumadin I'm on is triple the normal amount someone my size should be on to have an INR of 4. I follow the diet and rules that come with taking coumadin so the high amount isn't coming from outside sources. My body has a resistance to coumadin forcing my dose up and up. Did I tell you that coumadin is in rat poison? No, I didn't did I? Well it is. I have been told, I will be on coumadin for the rest of my life, I'm 35 now. Lets just say the long term side affects this drug potentially has not to mention the biweekly blood tests required while on this medicine doesn't exactly make me feel all warm and fuzzy!
I just had my 7th venogram procedure 2 weeks ago. The clot still in my pelvis is harder than a pencil eraser. My surgeon, who is very skilled and highly trained, one of the leading specialists in this country, used a burrowing tool to try and burrow a hole through it and could not penetrate the clot. My body is trying to fix itself with its own bypass vein system. Those superficial veins are beginning to take over and decompress the leg but because they are so small, its very painful. According to my surgeon it could take years of pushing the leg for the veins to be big enough to decompress my leg and move that large volume of blood with DECREASED, not no pain but decreased pain.
The facts according to medicine are: I will face new clots (once you get one, chances are you are vulnerable for more), more surgery, skin ulcers, risk of internal bleeding, pulmonary embolisms, stroke, heart attack, aneurysms, chronic pain and the list continues. They consider my case a Chronic Venous Insufficiency, (CVI) I have post phlebitic syndrome, or Post thrombotic syndrome from the DVT and the scar tissue it left. At 35, I wear compression stockings, am on coumadin and regularly see a vascular surgeon. The average age of his patients is 70!
These are the facts according to the natural. Good thing I desire to live by The Spirit! Now we can dive into what the Lord had done and is doing. I can talk about the emotions and the mountains I encountered in my heart through though this journey. To be continued !!!!
In my last posting I told you it was war didn't I? So far I have been told by experienced professionals they have never seen a clot this big, I don't fit the bill at all for having this, and that most people with this kind of clot don't survive to even have surgery. The professionals counsel you on warning signs as I am still living life with a clot that is not shrinking in my body. More upper leg swelling, shortness of breath, skin color changes, increased pain, severe headaches and so on. I woke up one morning with stabbing pains in the back of my head. They continued all night and into the next day. I happened to have had a Pediatrician appointment for Chloe that morning and had those stabbing episodes while he was in the room. He was so concerned he called my surgeon directly and within an hour I arrived in the ER where the staff was waiting with a wheelchair at the door for me! There must have been 20 people in the waiting room as they rushed me back. All the tests revealed everything was fine and it was safe to go home. This is just an example of how serious this is. When you take on the fear that comes from the professionals who are just trying to educate you; you don't rest, no peace. Every pain is important, every symptom has to be noted you no longer have confidence in your health any longer. But where should your confidence be in the first place? If you faith is in the Lord and your confidence comes from Him you can walk through the trial of sickness with peace. However, I was not there at this point in the battle.
A few weeks later a scan revealed new clots so another venogram surgical procedure was scheduled. After this new development my team of doctors decided Lovenox was not working so it was time to take coumadin. I began coumadin and went to a hematologist. After a very thorough exam and blood work up all we could do was wait. During that waiting time my hair began falling out, that went on for about 3 months! My hairline receded, and I lost quite a bit of volume. I noticed my brain function decreased. It was almost like living in a fog. If someone asked me a random question my response is on like a 15 second delay as now, I have to process what was just said. I forget EVERYTHING. Oh my, one of my giftings is a strong memory for administration uses. I run a very tight ship and I just lost my footing. I also noted that I was cold all the time, middle of summer, didn't matter just cold. Fatigue settled in along with the new meds. So, if I sleep a full night; 8 hours of uninterrupted sleep I will wake up and still feel like I only got 2 or 3 hours. I am tired and weak most of the time. My blood work up revealed that I have 2 protein mutations. One is not usually a big deal but 2 becomes a clotting situation. This mutation has been there since birth; do you see the hand of the Mighty Gods protection over me. It was there hidden from everyone except Jesus! So with these findings we know now why I re clotted.
A few months later, yes, I'm sure you guessed it; more clots! This time my surgeon looked more closely at surrounding veins and stent placement. My stents actually blocked the clot from entering my abdomen which would have surely meant Pulmonary Embolism! If you don't see the Lord's protection over me at this point I just don't know what else I could say. You can not deny His claim for safety over me, His daughter! He noted that I had superficial veins that were just huge meaning I have been fighting clots in my body for years undetected. Its the only thing that could explain the size of those veins that should be smaller. It could have taken years for them to stretch that large! He also noticed I had grown a secondary drainage branch of veins, its rare to have a secondary system, GODS FINGERPRINTS! Thank you Lord.
Would you believe just 2 months later, more clots! This time my surgeon decided to put a 3rd stent in, realign them together and use a stent that is plastic coated instead of metal. This was done in the hopes of keeping the scar tissue from developing over the stent. This time his vein study revealed that I have hypersensitive veins meaning, they love to scar, not only do they scar but the produce large amounts of scar tissue. As they prepared me to go home my wound gushed so much blood the staff went into emergency mode. I felt like a bad episode of ER! The nurse shouted, "SHE'S A BLEEDER!!" and more nurses ran straddling puddles of blood and nearly sitting on top of me applying pressure. One nurse ran right to the phone to talk to my surgeon and I ended up being admitted into the ICU! At this point it is obvious to me the war the enemy has declared on me using my health. Every fiery dart thrown, the Lord rescued me. I mean using my own body to build a fortress of scar tissue around the blood clot making it virtually impossible for the meds to work! If that's not war what is?
My team of doc's decided I need to be on a high amount of coumadin. Instead of being on a therapeutic amount of blood thinning meds they upped the anty so I'd be on a high dose of meds. Normally a therapeutic level of coumadin puts your INR number of 2-3, 2 -2 1/2 being ideal. My dose needs to have my INR close to 4! The amount of coumadin I'm on is triple the normal amount someone my size should be on to have an INR of 4. I follow the diet and rules that come with taking coumadin so the high amount isn't coming from outside sources. My body has a resistance to coumadin forcing my dose up and up. Did I tell you that coumadin is in rat poison? No, I didn't did I? Well it is. I have been told, I will be on coumadin for the rest of my life, I'm 35 now. Lets just say the long term side affects this drug potentially has not to mention the biweekly blood tests required while on this medicine doesn't exactly make me feel all warm and fuzzy!
I just had my 7th venogram procedure 2 weeks ago. The clot still in my pelvis is harder than a pencil eraser. My surgeon, who is very skilled and highly trained, one of the leading specialists in this country, used a burrowing tool to try and burrow a hole through it and could not penetrate the clot. My body is trying to fix itself with its own bypass vein system. Those superficial veins are beginning to take over and decompress the leg but because they are so small, its very painful. According to my surgeon it could take years of pushing the leg for the veins to be big enough to decompress my leg and move that large volume of blood with DECREASED, not no pain but decreased pain.
The facts according to medicine are: I will face new clots (once you get one, chances are you are vulnerable for more), more surgery, skin ulcers, risk of internal bleeding, pulmonary embolisms, stroke, heart attack, aneurysms, chronic pain and the list continues. They consider my case a Chronic Venous Insufficiency, (CVI) I have post phlebitic syndrome, or Post thrombotic syndrome from the DVT and the scar tissue it left. At 35, I wear compression stockings, am on coumadin and regularly see a vascular surgeon. The average age of his patients is 70!
These are the facts according to the natural. Good thing I desire to live by The Spirit! Now we can dive into what the Lord had done and is doing. I can talk about the emotions and the mountains I encountered in my heart through though this journey. To be continued !!!!
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