Leslie's Journal

I went to the blood doc yesterday in hope of getting some advice about warfarin and my possible bad affects from it. He was an older guy. He told me he usually does not prescribe warfarin. I told him maybe not in the last 15 years...but you have been a doc for around 50 years)....As I have been to about 15 docs so far in regards of my nerve pain for the last 6 months. (since my surgery) 1) He said it could be the warfarin. I asked him if he thought the filler could be an issue with this generic. 2) He said he thinks acenocoumarol is better with less side effects. (I am in Europe - it is not approved in US) 3) He said I could go on heparin (Lovenox) for a few weeks and need only ONE shot a day?) Which I thought was strange -due to my weight. I weigh 160 pounds.... 4) He said if worse comes to worse I can take heparin for the rest of my life....Another interesting doctor visit....I am going off warfarin and into the hospital for a couple weeks to see what they can do for m

Going to the blood doc tomorrow and into the hospital on Monday to ween off warfarin and go on heparin for awhile to see if my nerve, muscle pain and spasms is related to warfarin. I am on a generic with lots of crappy fillers. Varnishes, heavy dyes and lacquers. I can special order the 5mg original Coumadin made in Italy under teofarma. I hope that could solve the problem. I have another choice acenocoumarol much shorter half life and not as stable as warfarin a potentially harder on the liver. I have high liver enzymes since my surgery. I will share my findings...I do not want anyone ever to go through this type of nerve, muscle pain as well as spasms. I has been a hellish 6 months since my surgery. If anyone has any thoughts are questions for the blood doc please feel free to share.

Looks like I am having major problems with the generic warfarin I am taking. Lots of sensory nerve issues. Leg pains, twitching. I met with my rehab doctor on a private basis and he said he can admit me bridge me to heparin to see if my symptoms improve. Italy still makes the original Coumadin. I can get the 5mg tablets here in a special pharmacy. In Europe we also have a couple other coumarins available. Acenocoumaral and Phenoprocoumon. I will meet with a high level blood doc on Friday and head to the hospital Monday morning. I will share my findings. But please if you decide mechanical make sure you can handle the warfarin first. I may have made the second biggest mistake of my life. My first helping a guy when I was 17 and he carjacked me and I fell out of the car and got hit by a second car going 50 miles per hour. Hodgekin's lymphoma 6 weeks later. Radiation destroyed my mitral valve. I probably could of held out a few more years instead of getting surgery and then would have gone bio as there are some really good developments down the road. I was pressured and locked up after some edema from afib and kind of forced to get this surgery...no second opinion allowed. I have a feeling I will be going under the knife again as I cannot metabolize warfarin well. I am basically homebound now in 24/7 pain...Chest is fine all the rest is not....

I am going to an allergist next Friday to see what is causing my leg pain....especially in the upper legs. I pray it is not the warfarin. I also have stomach bloating. I just got off my statin about 5 days ago...I pray that is the culprit and Amiodarone is still in my system. I will report my findings and maybe this will help someone else in the group.

I am 8 weeks out and my sternum for the most part appears to be healing. How ever the lump above the incision and the end of the incision appears to be tender especially when getting out of the laying position. Xrays that have been taken and CT that was taken very early on appears to okay as docs never mentioned anything. Not sure if I should ice it, heat it or leave it alone. Or go to an orthopedic to make sure they put me back together properly. Any ideas or shares would be helpful.

Hodgekin's lymphoma survivor getting a mechanical mitral valve on Monday in Budapest. If anyone out there who was radiated back on th 80s have any stories to share it would be great. I also have some curvature of the spine worried that they won't be able to put me back together again.

I have a really badly calcified mitral valve from radiation therapy (Hodgekin'sLymphoma as child. I get irregular heartbeats because of it. I had a bad episode 10 days ago and I guess due to that I retained water. Nothing in my ankles. But in my back and stomach. I did feel sore in my back the next day. I even did a light workout last Thursday and did some work. Internet went down. Took a nap and woke up around midnight. Could not lay down and breathe. Checked my oxygen levels and they were down to mid eighties with my pulse oximeter.Took a taxi to the emergency room. I coded in the waiting room. It took about 6 hours for me to breathe on my own. I am getting my heart regulated. I took an angiogram and there is no significant heart disease. So I just need a mechanical mitral valve. So after almost dying twice in Just over a year a stroke in January 2023. I guess I need to get sliced. I will be called scar body. A huge scar from 40 years ago on my tummy and now the breastbone. Not sure when or what happens next. I think I will be home for a few weeks. I shared this to make sure if anyone who has arrythmia to get attention right away. And if you or anyone you knows has trouble breathing and has major water retention even in hard to see places go to the hospital. It almost took me out quick. Feeling scared and bless.Les

I had an abalation in 2017 and have at least some mitral valve regurgitation. Today I am having an episode of irregular heartbeat via blood pressure machine. Blood pressure is a bit high,,,,But I my heart rate is not high around 75 beats per minute. It seem steady as I keep taking my blood pressure....I took a high dose of Magnesium....about an hour ago....670 mg magnesium Carbonate and 342 Magnesium Oxide....it is in powder form....has anyone had irregular heartbeat with high levels of magnesium and since my heartrate is in a very normal range is it really bad? I do not take bloodthinners and it seems in only have irregular heart beat once in a while but it is never in tachycardia. Is having just an irregular heartbeat a lot safer than having tachycardia? Thanks for any posts))