ILoVeNY25
Well-known member
Hello new and former members, my name is Nicole aka The Little One because I was 18 when I started my journey on this site. I honestly do not think I could've gotten through my 1st sx without VR.com. I have a very extensive medical history so I'm going to start with that. At age 12 I had rheumatic fever but it was never diagnosed correctly so I went to the dentist without pre antibiotics and I developed bacterial endocarditis. I was hospitalized for 3 weeks when I was 13. Had a picc line and antibiotics at home. From then til age 19 when I had my surgery I went into class 4 heart failure which was the docs intentions since they wanted me to put off sx as long as possible knowing I would need several throughout my life. I'm born and raised in Queens, NYC and on Sept. 12, 2001, I had an angiogram that was canceled thinking they would need the hospital for 9/11 survivors and then rescheduled knowing that they're weren't going to be that many for the hospital I was going to. After the angiogram, I was told I was in complete heart failure and had about 6 months to live without surgical intervention. I ended up making it 7 mos to my surgery and had my aortic and mitral valve replaced and Tricuspid repaired. I got St. Jude's valves and was put on Coumadin. I was told when I was 13 that I would never have my own children.
Ok, so fast forward about 13 years, I was 32 and married when docs said they think I could have a successful pregnancy if I go off coumadin and give myself Lovenox injections everyday. So I did, in May 2014 I started the process along with a team of doctors, including 2 cardiologists at different hospitals, high risk OB/GYNs, Infectious disease specialist and anesthesiologists. I went into this prepared, I was on Lovenox for almost a year before I conceived in Feb. 2015, my pregnancy was normal, I saw the OB every week and when I was 4 1/2 months pregnant I had a heart attack. I was brought to the hospital where they told me I was the patient and my baby wasn't viable so they focused all their attention on me. Turns out after a TEE done without anesthesia for the safety of the baby, I had blood clots all along my valves and needed immediate surgery. The wouldn't let me eat because we still weren't sure what I was going to do. 2 days later my appendix burst, so they can't do the heart surgery and allow all that bacteria in your stomach to get into your heart. So, it was put on antibiotics and still was not allowed to eat for 12 days while now being just about 5 months pregnant. I was told that I should probably terminate the baby because certainly both of us were not going to make it or we would both die. So my husband and I made the most heart breaking decision to "terminate". So, it was decided I would have my appendix surgery and they would terminate my child. My son was due on Christmas Day and here I was waiting to have heart surgery as well. Again, because my belly was still full of bacteria and I was septic they wanted to hold off on my heart. So, I was sent home to bury my son and had a picc line for 4 weeks with antibiotics. While on my way to the OB for a follow up visit, I noticed I was having eye problems, i was missing part of my vision so i was sent straight away to the hospital where i began to have a very serious stroke while in the ER, I lost vision in my left eye which I have a permanent blind spot and had lost my speech and needed to relearn how to speak, I also had some weakness in the right side of my body. I was brought in for a Thrombectomy even though I begged the surgeon to change my valves once he was in there, he decided to just clean up the blood clots on my valves. This was now Aug 2015. I spent Sept and Oct recovering at home and on Nov. 10th, it happened again. I was having another stroke, not as severe as the last one but slurred speech and facial distortions. My smile would never be the same. I stayed in the hospital for 4 weeks until Dec. 4th, I had my 3rd OHS where I chose a pig and cow valve hoping that even if I couldn't carry a pregnancy that it would be easier to harvest my eggs without being on Coumadin and with all the strokes and TIA's I had I didn't want to be back on Coumadin. I was told my brain was "littered with strokes". There were too many for them to count. A few days after that sx, I developed right sided stomach pain and was like it can't be my appendix because I just had that taken out in July. Well, it turns out it was appendicitis because the doctor left behind a third of my appendix. So, more picc line antibiotics and was sent home a week before Christmas and a week before my son should've been born. Because I had new valves they wanted to wait again on the appendix and not infect my new valves by opening up my stomach. So, sadly I went home, it was a lot harder to recover after the 3rd OHS then the 2nd. Unfortunately my marriage started to deteriorate after spending more than 4 months of a 6 month period in the hospital and my husband and I separated 3 weeks after surgery. I came back to live with my parents and in March I had my 2nd appendix surgery, got sick while in the hospital, running fevers so what should have been a 3-4 day event turned into almost 2 weeks. The cardiologist wanted me to stay on Coumadin for a year before I started Aspirin therapy.
My husband and I tried to reconcile so I went back home and in Jan. 2018 a doctor prescribed me Celebrex for pain and it caused another stroke, lost a lot of right sided strength and I was diagnosed with a brain disease called Cavernous Angiomas. They cover my brain and they are tiny blood vessels that are almost like mini tumors. They're too close to my speech and facial functions that docs do not want to operate as of yet. Again my marriage crumbled and we're now officially separated and living 1500 miles apart. I'm on disability and for the last 4 years have experienced extreme depression, anxiety and PTSD. I apologize for the lengthy introduction but that's my story in a huge nutshell. My life consists of doc appts...
Cardiologists, Neurologists and Neurosurgeons.
I haven't celebrated Christmas since I lost my son and all i have is an angel named Jonathan James. And my life is now a waiting game with 2 ticking time bombs, my heart and my brain. I haven't shared my story because it's not a positive one and I don't want to take away from the positivity that this site offers. You can have heart surgery and live a normal life afterwards.
Again, I'm so sorry about the length of this post and wish everyone there in the waiting room Godspeed.
Nicole, 36
OHS x 3 Currently rocking a pig and cow valve
Cavernous Angiomas in brain
Ok, so fast forward about 13 years, I was 32 and married when docs said they think I could have a successful pregnancy if I go off coumadin and give myself Lovenox injections everyday. So I did, in May 2014 I started the process along with a team of doctors, including 2 cardiologists at different hospitals, high risk OB/GYNs, Infectious disease specialist and anesthesiologists. I went into this prepared, I was on Lovenox for almost a year before I conceived in Feb. 2015, my pregnancy was normal, I saw the OB every week and when I was 4 1/2 months pregnant I had a heart attack. I was brought to the hospital where they told me I was the patient and my baby wasn't viable so they focused all their attention on me. Turns out after a TEE done without anesthesia for the safety of the baby, I had blood clots all along my valves and needed immediate surgery. The wouldn't let me eat because we still weren't sure what I was going to do. 2 days later my appendix burst, so they can't do the heart surgery and allow all that bacteria in your stomach to get into your heart. So, it was put on antibiotics and still was not allowed to eat for 12 days while now being just about 5 months pregnant. I was told that I should probably terminate the baby because certainly both of us were not going to make it or we would both die. So my husband and I made the most heart breaking decision to "terminate". So, it was decided I would have my appendix surgery and they would terminate my child. My son was due on Christmas Day and here I was waiting to have heart surgery as well. Again, because my belly was still full of bacteria and I was septic they wanted to hold off on my heart. So, I was sent home to bury my son and had a picc line for 4 weeks with antibiotics. While on my way to the OB for a follow up visit, I noticed I was having eye problems, i was missing part of my vision so i was sent straight away to the hospital where i began to have a very serious stroke while in the ER, I lost vision in my left eye which I have a permanent blind spot and had lost my speech and needed to relearn how to speak, I also had some weakness in the right side of my body. I was brought in for a Thrombectomy even though I begged the surgeon to change my valves once he was in there, he decided to just clean up the blood clots on my valves. This was now Aug 2015. I spent Sept and Oct recovering at home and on Nov. 10th, it happened again. I was having another stroke, not as severe as the last one but slurred speech and facial distortions. My smile would never be the same. I stayed in the hospital for 4 weeks until Dec. 4th, I had my 3rd OHS where I chose a pig and cow valve hoping that even if I couldn't carry a pregnancy that it would be easier to harvest my eggs without being on Coumadin and with all the strokes and TIA's I had I didn't want to be back on Coumadin. I was told my brain was "littered with strokes". There were too many for them to count. A few days after that sx, I developed right sided stomach pain and was like it can't be my appendix because I just had that taken out in July. Well, it turns out it was appendicitis because the doctor left behind a third of my appendix. So, more picc line antibiotics and was sent home a week before Christmas and a week before my son should've been born. Because I had new valves they wanted to wait again on the appendix and not infect my new valves by opening up my stomach. So, sadly I went home, it was a lot harder to recover after the 3rd OHS then the 2nd. Unfortunately my marriage started to deteriorate after spending more than 4 months of a 6 month period in the hospital and my husband and I separated 3 weeks after surgery. I came back to live with my parents and in March I had my 2nd appendix surgery, got sick while in the hospital, running fevers so what should have been a 3-4 day event turned into almost 2 weeks. The cardiologist wanted me to stay on Coumadin for a year before I started Aspirin therapy.
My husband and I tried to reconcile so I went back home and in Jan. 2018 a doctor prescribed me Celebrex for pain and it caused another stroke, lost a lot of right sided strength and I was diagnosed with a brain disease called Cavernous Angiomas. They cover my brain and they are tiny blood vessels that are almost like mini tumors. They're too close to my speech and facial functions that docs do not want to operate as of yet. Again my marriage crumbled and we're now officially separated and living 1500 miles apart. I'm on disability and for the last 4 years have experienced extreme depression, anxiety and PTSD. I apologize for the lengthy introduction but that's my story in a huge nutshell. My life consists of doc appts...
Cardiologists, Neurologists and Neurosurgeons.
I haven't celebrated Christmas since I lost my son and all i have is an angel named Jonathan James. And my life is now a waiting game with 2 ticking time bombs, my heart and my brain. I haven't shared my story because it's not a positive one and I don't want to take away from the positivity that this site offers. You can have heart surgery and live a normal life afterwards.
Again, I'm so sorry about the length of this post and wish everyone there in the waiting room Godspeed.
Nicole, 36
OHS x 3 Currently rocking a pig and cow valve
Cavernous Angiomas in brain
Janie
