Living With Factor V Leiden And How It Changed My Life

What Is Factor V Leiden – References & Quotes

I would like give a special thanks to these web sites for the information they provided on their online services. Giving credit to them for provided us with useful information.According to the Mayo Clinic Web (https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423) they quoted this:

” Factor V Leiden (FAK-tur five LIDE-n) is a mutation of one of the clotting factors in the blood. This mutation can increase your chance of developing abnormal blood clots, most commonly in your legs or lungs.”

This is quoted from the U.S. Department of Health & Human Services web (https://rarediseases.info.nih.gov/diseases/6403/factor-v-leiden-thrombophilia) using their GARD Information Navigator,

“Factor V Leiden thrombophilia is a genetic disorder that makes it more likely for you to develop a blood clot sometime during your life. Still, it is estimated that 95% of people with factor V Leiden never develop a clot. When a clot does form, the clot most often occurs in your leg (deep venous thrombosis or DVT) or lungs (pulmonary embolism or PE).^[1][2] Factor V Leiden is the name of a specific gene mutation in the F5 gene. This gene plays a role in how your body forms blood clots after an injury. People can inherit one or two copies of the factor V Leiden gene mutation. This condition should not be confused with Factor V deficiency, an inherited bleeding disorder that can cause excessive bleeding following surgery or trauma.” Last updated: 7/5/2019

Symptoms Started

It was around the end of November 2009 when I started having pain in the back of my left knee that progressively increased. Eventually redness and swelling occurred. Around a week later a burning sensation overcame as if it was inflamed with fire. The swelling increased rapidly and the leg ached to the point that I had difficulty lifting it as if I was hauling a concrete sack instead of a limb. The more I sat up, stood, or walked it increased all of the symptoms immensely and almost immediately. It was extremely painful.

Near Miss

In December 2009 it continued to worsen. Last straw was an incident at the post office. My leg was swollen, red, burning, and in severe pain especially behind my knee but also the whole leg was feeling heavy, overloaded. I pulled into the post office, as I exited my vehicle (with excruciating pain and much difficulty) an SUV swoops in super fast having me panic. It was appearing not to stop as it continued moving towards me. My first reaction was to jump the curb out of harms way, as I attempted to leap up onto the sidewalk that car finally came to jolted stop (apparently noticing me at the last possible second) nearly hitting me. The problem was I couldn’t lift my leg (on it’s own) not even to leap to save my life! It felt as if I had that foot tarred to the paved parking lot. I literally had to place my hands under my knee to raise it above the sidewalk curb nearly falling due to the offset of balance. That’s when I decided I needed to figure out exactly what was happening. That was scary.

Getting Results

My husband recommended I see a doctor of his choice in which I took his advice. She sent me in to have my leg checked with a test called a Ultrasound (Doppler) test. It was to check the circulation in my leg for damage, obstruction, or DVT’s. After a long process of the radiologist checking my leg, she says, “I need to ask your doctor if she needs any other tests done. I’ll be right back”. We, my husband and I asked her if she saw something we need to be alarmed about. She said, “I just needed to see if the doctor needed any other tests”. But she looked awfully concerned, which worried us. The radiologist came back and said, “Your doctor wants to talk to you”. I asked “Why?” she said, “She wanted to discuss the test results with you”. I went out to the desk to call my doctor but she was already on the phone. My doctor instructed I admit myself immediately into the hospital and that the instructions would be waiting for me there in the admitting office. I asked, Why? What’s happening?” she said, “You need to go now, we’re sending over the orders now.”

The Confusion

On the way to the hospital my husband and I were especially confused. We both knew something wasn’t good but had no idea what was happening or why I was being sent to the hospital. Nothing was explained by the Radiology testing facility exactly what was going on. The doctor rushed us with urgency still we were clueless. The only thing we knew was we were to go to the hospital and I needed to check in immediately.

At The Hospital – Admitting

After we arrived at the hospital we went to the Admitting Office and approached the “check in” window. The receptionist was concerned asking us, “Why are you checking into the hospital”? We had explained we were sent there from the testing facility which was instructed by my doctor to go to the hospital after the test was complete. They told me I must admit myself into the hospital. I went on explaining it was my understanding the testing facility and the doctor would send them information. The admitting lady was so confused but eventually she received the proper documentation and I was admitted approximately two hours later.

As A Patient

Just having been rolled into the first available room, doctors and nurses came in from all different directions bombarded me with questions, concerns, needles, blood pressure cuffs, linen, clipboards, (that was a thing in 2009) and tests. All concerned with why I was there, and what brought me there. I told them I honestly didn’t know. Finally after it was explained to me that I had a blood clot . That’s all they said. I was given an IV with fluids, Dextrose to keep me hydrated. Also I was given stomach injections of Lovenox every 2-4 hours. I was sent to a specialty floor after having been there two days.

Specialty Floor

Arriving on the specialty floor a doctor approached me with great concern. I understood the fact I had a blood clot but had no direction of expectation. After being poked, probed every couple hours, tested with x-rays of my heart, brain, and lungs a doctor approached me and asked me if I understood what was going on. I said, “No not really”. He said, “You have one giant sized blood clot called a Deep Vein Thrombosis or DVT from the top of your groin all the way to your ankle in your left leg. It is imperative we do something immediately to remedy this issue before it’s too late”.

Doctor Thinks He Has A Solution

Doctor said, “We’re thinking we will need to take the leg.” I laughed and said, “Excuse me? You’re kidding right? No you’re not taking my leg.” I asked him, “What are you talking about anyways?” He said, “Ma’am do you not understand why I said we need to take your leg?” I replied facetiously, “Oh, I understand that you deem it necessary because you feel you have no other option, but I’m just letting you know, you will not be cutting off my leg! That is not an option.” I asked him, “If you were me in my shoes laying here and a doctor came to you and said,’ Hey I have to cut off your leg’, knowing you are very active and anxious with tons of energy, would you accept that advice or would you want a second opinion?” He said, “Understood.” “Exactly”! I had made my point.

Another Issue & My Suggestion

Later he re-approached me and readdressed the same topic informing me, “The tests are showing you have small PE’s and one very small one on your heart.” Then asked me, “Do you understand that you could die ma’am?” I told him, “I do understand, I also understand you have a full staff of doctors that come into this room on a daily basis testing me and questioning me so I say to you, If this is such an emergency that you feel my leg being cut off is your only option, why haven’t you come up with another solution? Better yet, why don’t you do like the doctor on the TV show House does? Have you seen it?” He said, “Yes”. Then I said, “Okay, so why don’t you get yourself a group of smart little doctors or interns or whomever you choose, you get your smart brain and all of them get their smart little brains and try to come up with some smart solution? Because I’m telling you, you are not taking my leg. Do you understand me?” “Yes, ma’am”, he replied with disappointment as he exited the room.

House’s Suggestion Fail

The doctor came back the next day and told me he took my advice and got with his interns and they suggested putting a filter in my groin just above the DVT. I say, “Okay that’s something.” After pondering momentarily I went on to say, “I know I’m not very bright or skilled but, what happens when that screen fills up with all those little clots that have been broken down? Won’t they cluster into the screen blocking more areas of blood flow”? He said “I suppose that’s possible but the blood should flow to the other leg”. I asked, “Again I’m not the smart one here, so if the blood flows to the other leg, won’t the clots be traveling to the other leg causing that leg to get blood clots thus won’t you be wanting to ‘cut’ that leg off too?And while I’m thinking about it, if my leg, say I let you cut it off, what’s to say the body won’t produce any more blood clots above it, and for that matter what are my chances for surgery at that point?” He responded, “Well we can’t guarantee that there won’t be any more blood clots that form or travel during or after surgery, and surgery is about 50% that it will work successfully.” I said, “I think y’all need to get your little smart brains thinking again. My chances are just as well right here in this bed.” He said, “I’ll go let them know we need to try to come up with another solution”. I said, “Good idea.” I don’t know why they would even have suggested it if my chances sitting there were just as good and with additional complications.

Tested For Factor V Leiden

Long story short, orders were made to boost my dose of Lovenox , (blood thinner stomach injection), restrict my movements, and continue to monitor me. I was bed ridden, instructed not to move or get up for any reason not even to bathe or use the restroom. I agreed to stay in bed, take bed baths, potty in the bed pan, and limit my mobility by staying in a 180 degree angle at all times. Results for the Factor V Leiden Test did not come yet. I was there for over 2 & 1/2 weeks.

Going Home

Since the DVT was beginning to breakdown the doctor’s said I could go home under these conditions: +

• Home Health must come to give Lovenox stomach shots
• Home Health must check my Prothrombin Time / Internationalized Normalized Ratio (PT/INR),
• Primary Care Doctor (PCP) must monitor me
• If I stay in a recliner in a 180 degree position 24/7 (except to use restroom & bathe)

More Issues

I agreed to these terms and was sent home. In the beginning, the home health nurse came three times a day to give me my Lovenox stomach shots. Then she showed my husband how to inject them into my stomach. After a couple of days after he felt comfortable, he began to give them to me without supervision 4 times a day. The nurse continued coming to check my PT/INR and my vitals.

My PCP’s (primary care physician) office had called and informed me that the results from the test the hospital had performed showed I tested positive for Factor V Leiden. She said I would be on Coumadin for Life. She then ordered some other tests to be done because I wasn’t sleeping well. I would stay up for days at a time then I would drop and be exhausted for days at a time with complete atrophy of my muscles. The nurse did the draw and I was found to have some deficiencies due to my Factor V Leiden. My deficiencies:

• Vitamin D
• Vitamin B-12
• Folic Acid
• Hypothyroidism (under-active thyroid)

The nurse instructions for my injections:

• Vit B-12 in my hip three times a week &
• Vit-D in my arm once a week.
• Lovenox injections were 4 times a day

Vitamin B-12 shots were very painful. I was at home on bed rest for three and a half months. The injections for Vitamin D continued for months until I found (OTC) over the counter ones in pill form. Vitamin B-12 injections lasted years before I found the correct dose OTC. Vitamin-D 1,000 IU Daily & Vitamin B-12 5,000 MCG Daily are the doses I take of those.

Finally Able to Leave The House

After doing everything I was instructed to do I was able to get out of the house to go see the doctor. She sent me to take another Ultrasound (Doppler) test and it showed the DVT was not completely cleared, it would take another three months or so. My new instructions were: +

• I would be able to ride short distances in a car
• No Driving
• No long rides
• No long walks
• I had to prop my legs as often as possible
• I was to see a vascular surgeon in three months
• Continue with Home Health Nurse to test PT/INR

Learning To Live With My Disorder

After my home release I was able to drive again and I was ecstatic! To have some freedom to get up and about. There were some set backs that went along with that though. I had put on weight because I had been bed ridden for months on end. Things I needed to do to get back in shape:

• I needed to diet.
• I needed to build my strength back up in my legs due to some atrophy.
• I had to build my lungs back up for now the asthma and allergies were not my friend but foe.
• I needed to slowly get back in my daily routine

I went to the doctor’s office twice a week and had my blood drawn to check my PT/INR. The doctor was more concerned with my INR them my PT. Normal ratios for an average person should be a 1. Mine needed to be between a 2-2&1/2 to prevent me from getting any more blood clots. Pain pills help with the pain in the leg but never rid it completely. I usually “grin and bare it” that means deal with it.

Vascular Surgeon Visit

The vascular surgeon wants to do surgery on my legs. says I have multiple issues with them.

• (PAD) Peripheral Artery Disease
• Chronic Venous Sufficiency
• Varicose Veins
• Venous Disease
• Atherosclerosis

He says he believes he can repair them. I don’t want to do surgery because when I have medical procedures done I risk either bleeding profusely or clotting my blood. Been there done that.

Hospitalized For Tooth Pull – PE Developed

In 2018 I went to a dentist to have a tooth pulled. He had me off my Coumadin for 6 days. The morning of the 6th day I did not make that appointment. Instead I was hospitalized for a PE are Pulmonary Embolisms or blood clots in the lungs. After one week in hospital I was transported to the dentist office via ambulance and with an escorted nurse to have my tooth pulled. I was transported back to he hospital via ambulance where I stayed yet another week until I convinced them to let me go with promise to follow up with my PCP. .

Risks

I deal with the risks of eating foods with Vitamin K. Vitamin K helps an average person with the course of clotting the blood naturally when they are injured, cut, or lacerated. For me it’s danger danger. If I consume too much Vitamin K it will “throw off my Coumadin levels” which meas I will have a risk of clotting and getting a DVT or PE.

I have allergies to medications, this limits my choices of since I’m allergic to various antibiotics. I need to take an antibiotic on occasions and since I’m allergic to vast majority my choices are limited. Even though this one antibiotic may “throw my Coumadin levels off”. I still use it. In this situation, it thins my blood but not enough to pose a major risk. I use it with caution.

I stand the chance of hemorrhaging as do others that take blood thinners. In my case I am taking a high dose of 8 mg of Coumadin daily in order to keep my INR at a 2.5-3.5. With this in mind I always have to use extra precautionary measures when using knives, sharp objects, or bumping myself especially my head, or chest. I wouldn’t want to be back in the hospital or worse.

A Better Understanding

I hope you have a better understanding of living with Factor V Leiden at least in my case and for people like me. I understand some of you out there may never have a sign or symptom at all, for that please thank our heavenly creator. He is to whom I owe all my blessings. We are all imperfect all because of the dented baking pan in the Garden of Eden. (try baking a cake in a dented pan, years later as it develops more dents, bake again, imperfect in different ways). I have learned to live with my condition and next time I will show you how I monitor my own INR.