Our story starts back in 2001. I was pregnant with our daughter. One evening I began to feel like I had a “charley-horse” in my left leg. I figured I had just not been drinking enough water or strained my leg. After four days I decided I had better call my OB. He basically brushed me off saying it was my PCP’s area. I called her and she ordered an ultrasound. I remember saying to the tech, “It’s perfectly normal right?” She broke with protocol and said “no, you have a huge clot.” I had been on bedrest since Christmas Eve when I had some bleeding – this was six weeks later. I was immediately hospitalized and started on Lovenox for the remainder of the pregnancy. There was no generic at that time. Lovenox was very expensive and insurance required I have the shots administered daily at the ER. We got around that and the shots were administered at home by my-self or my husband. At that time, the thought was that the clot was caused by the hyper-coagulative state of pregnancy and once I delivered this would not be an issue. I think they kept me in hospital for a week.
Two months later my membranes ruptured at 22 weeks. I was once again placed back in the hospital. This time until the end of my pregnancy. The idea being to delay delivery long enough for her to survive. Lovenox was changed to IV heparin. IV antibiotics and magnesium were added along with a insulin pump to treat my ever worsening gestational diabetes. We made it ten weeks to 32 weeks. I was unable to receive steroids so her lungs were immature and she ended up on a ventilator for 11 days. I was changed to Lovenox and Coumadin. Eventually, my INR was therapeutic and switched to Coumadin only for the next six months. My daughter and I were in the hospital for a total of 16 days after delivery. I secretly think I could have gone home earlier but the hematologist kept me in hospital to be with my baby.
Fast forward eleven years. We were walking out of the library and I was struck with a sharp pain with inspiration in my right chest and shoulder. I was convinced this had to be asthma or a panic attack. I went home and tried to rest, took my sons to a boy -scout meeting and could not get comfortable. I remember being so restless. After the meeting I fessed up to my husband and my good friend and charge nurse that I was having chest pains. They convinced me to go get an EKG and if needed a breathing treatment since I was so convinced the shortness of breath had to be asthma. At the ER they did an EKG, started an IV and took blood. I worked in this ER as an RN, so I knew my doctor that night well. I argued with him that this must be stress or maybe a panic attack. He knew I did not have a history of panic attacks but that I did have a history of asthma. My vital signs were good. O2 sat a tad on the low side. Breath sounds were clear. I still was trying to come up with a reason for my discomfort and started to argue with the doctor again when he came into the room. He said “your d-dimer is 19. I ordered a CTA.” That shut me up. I was very uncomfortable during the CTA. Results – no PE. I was admitted and actually had an exercise treadmill the next day and released. A few days later I had a follow-up with my PCP. I was still having shortness of breath and chest pain. He looked at the report and found there was movement on the study and ordered another CTA. This time the PE was found and I was put into the hospital on heparin and sent home on Coumadin. Blood tests were done to find a cause. All the tests were negative. My hematologist said that he felt strongly I should be on Coumadin for life. A few weeks before this happened I had again had that left leg pain. Another DVT but this time a piece broke off and lodged in my lung.
I have had a few surgeries since then and have always bridged with Lovenox. I have had some complications that looked like a PE but have turned out to have other causes. My “asthma” also is gone. My hematologist and pulmonologist have a theory that my “asthma” was actually tiny PE’s. My life on Coumadin is kind of mundane. Monthly or more frequent blood draws. A love /hate relationship with my new normal.
This fall my daughter had been having terrible issues with her cycles. Her pediatrician suggested a low dose birth control pill. I questioned the safety given my history. She assured me that it would be safe. That was the first of September. We made a trip to Savannah, GA to take our son back to college – 16 hours round trip. Our daughter and I had a bad respiratory virus. She could not shake the coughing and shortness of breath. I took her to her doctor and she said it was allergies and started her on Singular. No change was noted plus she began to have tachycardia (fast heart rate) and extreme shortness of breath with exertion. She is an equestrian competing in Hunter jumper -she jumps fences on her horse. She had a hard time finishing a workout or lesson on her horse. Climbing the steps left her breathless. I have an oxygen saturation finger probe at home and her sats would be in the low 80’s. She would be tachy at 120-140 beats per minute on her pulse. I reported all of this to her doctor and that her lower lobe breath sounds appeared to be very diminished during these attacks. She added a albuterol inhaler and gave her a spacer with a mask. She even gave her a breathing treatment in the office with no change in breath sounds. She was not having any trouble breathing in the office so her doctor said exercise induced asthma. At my insistence she also ordered a chest x-ray but refused to order a Chest CT (CTA). She even suggested that perhaps it could be anxiety…
My daughter was getting very frustrated with not being able to ride. It was very dry and dusty so we were thinking that perhaps all the dust she was breathing was causing her symptoms. She even coughed up what we though was mud. She started to ride with a mask; still no improvement. I took her to our family allergist who had seen my husband and son for years. She also thought it had to be asthma. Changed her to a better age-appropriate spacer and asked her to monitor her spirometry or lung capacity. She started out very low but after being treated with steroids and antibiotics on the off chance this was an atypical pneumonia. Her lung capacity seemed to be improving. She rode in her first major competition and did well but had to have a hit of her inhaler after every round. The inhaler seemed to help some nut in reality it was probably the rest between rounds that helped her feel better.
After she had completed the oral meds, her breathing seemed to be getting worse so the allergist got her in within a week with the pediatric pulmonologist at Vanderbilt Medical Center’s Children’s hospital. Her respiratory function was on the low normal. A repeat of the respiratory function showed no difference. He diagnosed “Asthma” and did extensive re-teaching of inhaler use and instructions to follow-up In February , sooner if not better and told me how to talk to his personal scheduler so that she could get us in.
Before we saw the pulmonologist my daughter started complaining of left leg pain. She thought perhaps she had strained it riding since the weather temp fluctuations had made her horse a little “fresh” that week. For two days we treated the pain with motrin and ice. There was no swelling or obvious injury. On the third day (Saturday) she had a lesson on her horse and texted me at work (I am an RN in an ER), when she got done that her leg felt “heavy” and was swollen. When she got home she sent me a picture. It was definitely swollen and red. I asked my husband if he thought perhaps they should go to ER and have it checked as I was concerned about a clot. He said she wanted to take motrin and ice it and see if it felt better. So that is what they did. I was at work until 11pm that night she was already in bed) and back out before she got up the next day. My husband said she was feeling better. On Monday she woke me up saying it still hurt – could she go have her physical therapist look at it. I had to run out and go to doctors apt and get my INR drawn so I did not have time to look at it. I called her physical therapist and got her an apt. When we got there I saw the leg for the first time. It was discolored, swollen and neither of us plus another therapist could find a pulse. We left immediately, got food and headed to the ER where my husband was working. They did a straight stick for a d-dimer and ordered an ultrasound. My husband stuck his head in while we were waiting on ultrasound tech and said her d-dimer was 13. The ultrasound was done and it was confirmed she had a DVT. I mentioned the continued problems with breathing and a CTA was planned
Arrangements were made to transfer her to the Children’s hospital in Nashville. The children’s hospital wanted to do any further tests so an IV was started (by her dad) and we were on the way. Once at the hospital a CTA, and more blood work were done. A repeat ultrasound was done – as we were leaving for the ultrasound a nurse came in for more blood. I asked why. She said had no one told us – she has a PE as well. After the ultrasound a heart echo was done to check the function of the right ventricle. About 2AM the hematologist resident came to see us. He said she had a bunch of clots in her lungs and leg but he did not think intervention would be needed. We spent the night in the ER since no rooms were available. At 6 am a nurse came in and said that our daughter was now NPO and would be going to surgery later that morning. I was very surprised and said no one had told me. It was not until we got to pre-op that the doctor caught up with us and told us what was needed. The clots in her leg were occluding blood flow in her leg. He was going to need to place a catheter up into her leg and administer TPA and heparin straight to the clot. We would go to ICU for the night and then back to surgery for clot removal the next morning. After he placed the catheter he told us the clot extended into her vena cava . He thought she might have may- thurner syndrome (MTS). He would know more the next day when he was able to do a venagram after he removed the clot.
After a LONG night in ICU they took her back to surgery and were able to remove most of the clot. The doctor said she did not have MTS even though he has to balloon a part of her iliac vein. The narrowing was missing the type of compression that meant MTS. After recovery we were sent to a regular room where we stayed for another 4 days while her blood levels became therapeutic on Lovenox. On Friday her leg swelled up again and after arguing with the resident all night got the attending to order a repeat scan in the morning. The clot had returned in her leg. She was therapeutic and it was Christmas Eve so they let us go home. Since her pulses were able to be felt they did not feel at that time another procedure would be needed but they would bring her back in for a repeat scan in a few days.
Repeat scan showed no difference but no increase in symptoms plus swelling was down. She would be followed up with in hematology in 2 weeks time. That brings us to this past week.she was seen in hematology clinic. Blood work was high so her lovenox dose was decreased and repeat blood work 2 days later. In speaking with the pulmonologist we found out that there were multiple clots in every pulmonary artery. Every vein in her leg was occluded up to vena cava prior to surgery. Plan is to continue on Lovenox twice daily and to repeat cardiac echo, CTA and Ultrasound in 3 mos. Echo and pulmonology follow-up will be sooner. No riding her horse. Lovenox therapy is planned for 3-6 months depending on scans. She will miss the whole spring competition series. She is very bummed about that. Her dad and I are thankful she is here; we both know what could have been. When you read her chart form this fall it Is obvious what the problem is now that we know. It is extremely rare for a healthy kid to develop a clot. Most clots in children are from central catheter placement for cancer treatment or the cancer itself causing a clot. Our daughter’s life is truly a miracle.