VTT_AVR
Member
Hi All
I'm new member Valvereplacement.org but have been reading it since getting home from my AVR on June 13 2014 in Perth Australia.
My history is that I was diagnosed (much to my frustration as a teenager with sporting aspirations) with a congenital bicuspid aortic valve when I was 14. At that time I was out on antibiotic prophylaxis daily and yearly echos. With a change of doctor came the new advice that prophylaxis was not required and apart from the yearly echos I got on with life. That includes an active lifestyle, but with the thought in the back of my mind...how much is this inefficient valve holding me back? Having no symptoms the answer was not at all.
In 2011 I developed some chest pain, upon exertion, but put it down to cold weather, as it was not consistent in appearance. Eventually I went to my GP who sent me for a chest x ray and stress ECG. The x ray was fine, but much to my shock the stress ECG was positive for CAD. An angiogram followed to confirm a 90% blockage in one spot of the LAD. Unfortunately they did not proceed with fixing it and I waited about 6 months to get it stented. During that time my fitness deteriorated rapidly. Finally I got the angioplasty and made a swift recovery after that.
Active life retuned to normal, until late 2013, when I had a high heart rate in a mountain bike race, and didn't feel well. I had some more mild symptoms and returned to my cardiologist. He suspected the valve was starting to deteriorate, (I had many before that warn me surgery was likely for the future) but ruled out further CAD with another angiogram. Some more echos showed a mild deterioration of the valve so it was now on the verge of becoming serious.
Being largely asymtomatic I resisted the advice to get it sorted out for some months, during which I agreed to cut back the intensity of my exercise. Eventually I found this too frustrating and asked for a surgical referral. Both my cardiologist and surgeon recommended a mechanical valve due to my age (41) and active lifestyle. They also promoted the benefits of a valve that "would last longer than me".
I was concerned about being on warfarin with my active lifestyle, but they gave me examples of people who were self managing.
On 13 June I had a St Jude bileaflet 25mm mecanical valve fitted. I found the OHS physically difficult and painful, but probably more than that emotionally challenging and for that reason alone I am happy with my choice of a mechanical valve to lessen the chance of another OHS. Apart from a surficial (but still very concerning at the time to me) infection of my incision, my recovery has been OK. Fatigue has been the main challenge. I walked from day 3, and by 4 weeks could do a half hour walk at brisk pace. At a month the surgeon and cardiologist told me to "go get fit" but be sensible. I have returned to doing RPM/Spin classes at my gym and returned to my office based job. I have a stress ECG and echo scheduled for next week (requested by me for peace of mind) and I am very much looking forward to getting back on a real bicycle after the 3 month mark. Apart from sneezing, life has largely returned to normal......that is apart from one thing, INR.
My INR was in range and stable while at home and doing mild exercise, but since returning to work and vigorous exercise the INR has dropped. The lab which is managing the dose responds by giving me a large dose for one day and then returning to my normal dose. The result is a spike up over about 4 days, but then it crashes back down again....with the same response from them. I am now in a cycle of spikes and lows and don't feel too happy about it. My profession is in science, data management and statistics, and my impression is that the lab is just responding to the last test result and not the overall pattern and influencing factors.
It seems I am in the same situation as slipkid was in this post...."Coumadin dosages - spread out increases or do all in one day?" (sorry I don't know how to link posts yet)
I also have been given an INRatio2 which I initially struggled with, but am now getting some confidence with to use in parallel with lab testing.
I have tried to read as much as possible on this forum about INR levels from this site. Eventually I would like to go to self management and my GP supports this.
The posts from pellicle and Protimenow have been invaluable in proving me with information on INR/home testing/self management. To both of you and all the others on this site thank you so much for taking the time to share your information thoughts and stories - it has made an enormous difference to me.
I don't want a fight with my lab, but feel I could probably manage it better myself.
For those of you who were lab managed, but are now self managed is there any value in staying self managed initially, or put another way when did you find it was best to go solo, and were there any negatives to doing that.
Ian
I'm new member Valvereplacement.org but have been reading it since getting home from my AVR on June 13 2014 in Perth Australia.
My history is that I was diagnosed (much to my frustration as a teenager with sporting aspirations) with a congenital bicuspid aortic valve when I was 14. At that time I was out on antibiotic prophylaxis daily and yearly echos. With a change of doctor came the new advice that prophylaxis was not required and apart from the yearly echos I got on with life. That includes an active lifestyle, but with the thought in the back of my mind...how much is this inefficient valve holding me back? Having no symptoms the answer was not at all.
In 2011 I developed some chest pain, upon exertion, but put it down to cold weather, as it was not consistent in appearance. Eventually I went to my GP who sent me for a chest x ray and stress ECG. The x ray was fine, but much to my shock the stress ECG was positive for CAD. An angiogram followed to confirm a 90% blockage in one spot of the LAD. Unfortunately they did not proceed with fixing it and I waited about 6 months to get it stented. During that time my fitness deteriorated rapidly. Finally I got the angioplasty and made a swift recovery after that.
Active life retuned to normal, until late 2013, when I had a high heart rate in a mountain bike race, and didn't feel well. I had some more mild symptoms and returned to my cardiologist. He suspected the valve was starting to deteriorate, (I had many before that warn me surgery was likely for the future) but ruled out further CAD with another angiogram. Some more echos showed a mild deterioration of the valve so it was now on the verge of becoming serious.
Being largely asymtomatic I resisted the advice to get it sorted out for some months, during which I agreed to cut back the intensity of my exercise. Eventually I found this too frustrating and asked for a surgical referral. Both my cardiologist and surgeon recommended a mechanical valve due to my age (41) and active lifestyle. They also promoted the benefits of a valve that "would last longer than me".
I was concerned about being on warfarin with my active lifestyle, but they gave me examples of people who were self managing.
On 13 June I had a St Jude bileaflet 25mm mecanical valve fitted. I found the OHS physically difficult and painful, but probably more than that emotionally challenging and for that reason alone I am happy with my choice of a mechanical valve to lessen the chance of another OHS. Apart from a surficial (but still very concerning at the time to me) infection of my incision, my recovery has been OK. Fatigue has been the main challenge. I walked from day 3, and by 4 weeks could do a half hour walk at brisk pace. At a month the surgeon and cardiologist told me to "go get fit" but be sensible. I have returned to doing RPM/Spin classes at my gym and returned to my office based job. I have a stress ECG and echo scheduled for next week (requested by me for peace of mind) and I am very much looking forward to getting back on a real bicycle after the 3 month mark. Apart from sneezing, life has largely returned to normal......that is apart from one thing, INR.
My INR was in range and stable while at home and doing mild exercise, but since returning to work and vigorous exercise the INR has dropped. The lab which is managing the dose responds by giving me a large dose for one day and then returning to my normal dose. The result is a spike up over about 4 days, but then it crashes back down again....with the same response from them. I am now in a cycle of spikes and lows and don't feel too happy about it. My profession is in science, data management and statistics, and my impression is that the lab is just responding to the last test result and not the overall pattern and influencing factors.
It seems I am in the same situation as slipkid was in this post...."Coumadin dosages - spread out increases or do all in one day?" (sorry I don't know how to link posts yet)
I also have been given an INRatio2 which I initially struggled with, but am now getting some confidence with to use in parallel with lab testing.
I have tried to read as much as possible on this forum about INR levels from this site. Eventually I would like to go to self management and my GP supports this.
The posts from pellicle and Protimenow have been invaluable in proving me with information on INR/home testing/self management. To both of you and all the others on this site thank you so much for taking the time to share your information thoughts and stories - it has made an enormous difference to me.
I don't want a fight with my lab, but feel I could probably manage it better myself.
For those of you who were lab managed, but are now self managed is there any value in staying self managed initially, or put another way when did you find it was best to go solo, and were there any negatives to doing that.
Ian
