Michele's Journal

I would like to know If anyone taking warfarin has had to stop taking it for a colonoscopy ? I have 2 implants a mechanical valve and a graft so I will have to take warfarin for the rest of my life. I have just been diagnosed with an auto immune disease and my doctors are recommending a colonoscopy but I will need to stop the warfarin for about 48. I am really afraid to do this. Does anyone have any advise or experience to share with me?

I can't believe it has been 10 weeks. I have been going to Cardiac Rehab and I am getting stronger each time. I highly recommend it! It has given me the confidence I needed to go hiking this weekend and not be afraid to push myself a little. I was able to hike to Triple Falls and after a picnic lunch, I hiked on up to High Falls in Western NC. I did take some breaks along the way to catch my breath & get water but I made it!! I hiked 5 miles total. I am so thankful for how God has blessed me and my recovery. I am thankful for all of you who have posted your experiences and to Adam for putting us all in touch. You all have been such an inspiration to me. My thoughts and prayers are with all of you. God bless

On May 27 I had my aorta valve replaced with a St. Jude mechanical valve and a graft on my aneurysm. I spent 24 hours in ICU, then moved to a room. The worst of It at that point was the ICU nurse kept giving me my med.s on an empty stomach ( I can't do that when I haven't just had surgery). I had a hard time eating because I felt sick to my stomach when I smelled food, so I had to force my self to eat. Other than that I did really good and was able to go home after 3 days. I have done pretty good at home until yesterday I developed A-FIB and had to go back to the hospital for about 4 hours to get the A-FIB under control. They sent me home with medication to keep in under control until my doctors apt on Thurs. with the surgeon. I am on warfarin and have to get my INR checked and have had to re adjust my dose a few times but over all I am doing good. My pain is managed well with Tylenol, which is a surprise to me because in the past it hasn't helped with my pain ( God answers Payer!!). I am sore and uncomfortable and will be real glad when I am a few more weeks into my recovery but over all I am doing good.

For the last couple weeks I had notice my acid reflux had come back and gotten worse. What I didn't know was that is could cause such sever pain in my chest that radiated up into my back, neck and head. It cause a weird sensation of my heart beat in my face, neck and head that I felt with every deep breath. When the medications I was told to take didn't seem to make it better I had it checked out at the hospital. They kept me for observation and ran all my test to compare my aneurysm and valve to previous test and they had not changed, sooo.. It turns out my acid reflux along with my stress of the upcoming surgery had manifested itself in inflammation of my esophagus. A doctor with the group that will be doing my surgery came in and new exactly what to give me and within 15-20 min. pain was gone & I could take a deep breath again. I thought I was handling the upcoming surgery pretty well but I didn't realize how much it was bothering me. It is a scary thing to agree to have something this serious done but I really couldn't even think about it If I didn't know the Lord Jesus as my savior and know that God is the giver of all things, he is already there and it is the hand of the Great Physical who will work through the wonderful staff that will treat me. God doesn't call the qualified, he qualifies the called. I am home now and feeling much better. Looking forward to getting this part of my journey behind me and back to the wonderful blessings of this life and living every moment to it's fullest. I am praying for all of my heart sisters and brothers and thanking God for a site like this so we can encourage and share with each other. May God bless each of you, Michele

In 10 days I will be having my surgery. I have mixed feelings (I'm sure that is normal) but in all honesty I am more afraid not to have the surgery than to have it. I wake up every morning thanking God for getting me through another night, I am really that miserable, and I asking every night before I try to sleep to just help me get through the night. I have slept on a wedge non stop 8 mo. If I roll over to my side my chest and arms go to sleep and I wake up sick to my stomach. Every day I feel a little weaker and I really know it is time! I am thankful for the many good years God has blessed me with, I know when I see the Echo.'s that it is God's grace that has got me this far. I am thankful that Adam put his book and this website together for all of us to learn more and have better understanding & connection to others that are going through what we are. As much as my friends and family want to understand they really don't, and it is hard to take advise from someone who doesn't really know what you're going through. You all have been such a blessing to me. Thank You for all the advise and the brave people who have posted what your experience has been, someone has needed to hear from you (even If you didn't hear from them). I am praying God's grace and healing touch over each and everyone of you. :) Michele

I would like some advise on mechanical valves, blood thinners and medical procedures ( scopes, dental procedures ect..). Do you have to go off the blood thinners for colonoscopies, dental work ? If so does it put you at any risk? Oh and another thing. Has anyone ever ben allergic to the blood thinners?

I would like to hear form anyone who has had their aorta valve replaced with a mechanical valve. How do you manage the PTINR's, do you have a home test? How does this impact your daily life, testing, eating foods ect...,anything else I may not know about. I want to hear the good and the bad. I have to make a decision soon and I had been leaning toward the biological, but I really don't want to dread a future re-surgery. Michele

I go next Thursday to meet with the surgeon to discuss replacing my Aorta valve. I'm not sure how to choose between a tissue valve or mechanical one. I think because I'm active and don't want to be stuck on Coumadin, I want a tissue valve. I'm not sure. Anyone have advise ?

I will start off by saying I am impatient, I realize that, but it has been 2 weeks since my TEE was preformed I was told by the doctor that did it , that I would hear something within 3 days, and I haven't heard anything. Is this normal ? It has taken me a lot to even accept what I am dealing with and now I am losing confidence in my doctors due to lack of communication. Not sure what to think or do.

I am scheduled for a TEE 3/28/16. I've had blood cultures to check for infection in my heart. It came back neg. I am getting a little nervous about the TEE. I know it isn't a big deal but I just takes so long to get these things scheduled and done (Hurry up and wait). Then my doctor wants a heart cath. done. I still don't know what the low grade fever is caused by, my primary doctor is running test for that. I just feel like a mess. I am upset I can't pick up my grandson (it is killing me:(, he pumps his little hands at me to get him and I can't. He is a big boy for 18mo. he weighs about 30 lb. I have to keep reminding myself this isn't always going to be this way. I just feel like I'm on the sidelines and I am missing out. I know God has got this and I just need to "be still and know that he is God". I have to keep reminding myself his ways are better than mine and knowing me like I do, I would make a big mess out of things on my own.

Last Wed.2/10/16- I went to another cardiologist that specializes in congenital heart defects. He ran another 2-D Echo. It has been a week and a day and I still haven't heard anything. He mentioned I was running a low grade fever ( I didn't know I was) had some questions about if I had ever had an infection in my heart, I said no and that is all the info I have right now and I am feeling real discouraged with all of this. I've read Adam's book and many post on here and I am not getting the response that I think lines up with what little I understand about my aorta problems. I moved all my care over to a bigger Hospital so that I could get better care and I am just feeling like I am getting no where. I should also mention I live in an area that is mostly retires so maybe they think I am too young to have any real problems. I am feeling like just giving up.

I've got my test results back, I have Aortic stenosis of 1.1( it was 1.2 6 yrs. ago), sever regurgitation (that is the same as 6 yrs. ago) and my Aorta is enlarged- that's new. I have chest discomfort all the time but increases to pain when I do physical activity, my chest and arms go to sleep when I lay down(even now that I sleep on a wedge) and I am tired all the time, and I cough now. My activity level has decreased in the past 2 mo., that is new also. I was told by my dr. to come back to re-check the tests in 6 mo. & I can take Tylenol for the chest pain. Don't get me wrong I don't want surgery right now but I have spent a lot of $ to just take Tylenol. Can anyone help me or am I just crazy?

seen my Cardiologist and discuss my echo. Said I am still going to have to have surgery sometime, my Aorta valve is narrowing and the leak is still severe. I go next week for stress test and CT to check for aneurysm. We are just trying to find out if it is time to do surgery or not. I know I'm not as far along as some of you but, I feel like I'm on a rollercoaster ride that just doesn't end.