Not sure what to think, I NEED you guys AGAIN!

[Gribur]

Hey all, hope al is well. I am just blown away here and hoping maybe you will have some insight.I woke up last night at around 2am and could feel that my heart was in atrial flutter, same as when I was in the hospital. I tried to relax and wait until it was time to take my metroprolol and my Amiodorone sorry for spelling, as all the doctors at the Hospital said it was nothing life threatening, just more of an inconvienience. Well took morning pilss and decided might as well go to hospital and have it checked. Now you have to remember I had my Aortic valve replaced with ST.Jude Mech and also had my ascending Aorta repaired. I am also now away from the big city hospital and dealing with doctors who are not even in the same ballpark. I ended up getting 2 units of blood due to low hemoglobin took all afternoon and the doctor has now mentioned mechanical hemolytic anemia which is freaking the hell out of me aeven though he said he doesnt specialize in cardiac anything. When i went in for surgery my HgB was around 150, when i left hospital after surgery it was at 88. Is it normal to lose this much? I was told to take iron prior to surgery but not after, was this an oversight? The small town doc is now wanting me to take 3 iron pills a day and to be checked for the next 3 days with bloodwork to make sure my valve isnt eating/destroying my red blood cells. ANY INPUT at all will be greatly appreciated here. I thought the freaking out was over after the surgery, I know its only been 2 weeks but I am angry, anxious and want my life back. And now thinking there is maybe the possibility that I wont be able to use this valve and go through more surgery is way too much. Help me guys, PLEASE!

 

[kfay]

There have been a couple of members on here who have run into this problem with their mechanical valves. I have an acquaintance who has 2 mechanical valves and she suffers from this condition as well. She takes iron and has transfusions every so often (I want to say once a quarter). There has not been any talk with doing another surgery and replacing her mechanical valves. Unfortunately, this is just something that seems to happen to some people.

As far as your HgB, I don't think it is uncommon at all for it to be lower after a major surgery like this. I don't think you taking iron afterwards would have made any difference in you developing this condition of the valve tearing up your blood cells. If I were you, I'd contact your surgeon and cardio at the hospital where you had surgery and let them know what is going on.

 

[Roberta]

There have been a couple of members on here who have run into this problem with their mechanical valves. I have an acquaintance who has 2 mechanical valves and she suffers from this condition as well. She takes iron and has transfusions every so often (I want to say once a quarter). There has not been any talk with doing another surgery and replacing her mechanical valves. Unfortunately, this is just something that seems to happen to some people.

As far as your HgB, I don't think it is uncommon at all for it to be lower after a major surgery like this. I don't think you taking iron afterwards would have made any difference in you developing this condition of the valve tearing up your blood cells. If I were you, I'd contact your surgeon and cardio at the hospital where you had surgery and let them know what is going on.

I agree with KFay. I had a tissue valve and my hemoglobin did drop to around 75 post op which resulted in a blood transfusion in ICU.This was due to bleeding post-op. I am sorry I can't help you with the mechanical valve, but wondering when your follow up is and if you can't at least put a call into your surgeon's office.
Remember that you are still early in the recovery phase. I am sure this will get sorted out.
Take a deep breath and one step at a time...
Keep us posted.
Take care,

 

[Bill B]

Don't blame the valve just yet. Significant anemia like you have is very rare with hemolysis due to mechanical valves. Yes, there is a degree of hemolysis from mechanical valves, but usually this results in subclinical (not detectable) anemia IF you get enough iron in your diet.

Anemia immediately post-op is far more common and can take a long time to resolve. It really shouldn't be a big problem with all the cell savers and other techniques to preserve the blood supply during OHS, but I'll quote my hematocrit to show you what happened to me. Pre-op = 42. Post-op = 22. Got 1 unit of blood which raised my HCT to 26. That's not good, but that's all the hospital could do - it's a common rule in the US not to transfuse above a hematocrit of 24. I hate that, but that's the way it is. So, I was prescribed iron. For most of the iron pills, 3 a day is the therapeutic amount. I could not tolerate them, so I had some fun and ate a steak sandwhich a couple times a week. It took me almost 2 months, but I got back to a hematocrit of 40.

There are blood tests that can distinguish hemolytic anemia from iron deficiency. In either case, iron replacement is needed.

 

[Rachel]

I have a tissue valve, so I don't have experience with a mechanical valve, but a few hours after my surgery I was given two blood transfusions. During the initial weeks of my recovery I was extremely cold all the time, it wasn't until my 3 week follow-up with the surgeon that he told me to take iron supplements.

I just wanted you to know that I became anemic after surgery with a tissue valve, I have no idea how common it is with either a tissue or mechanical but I do know this is major surgery and at three weeks you're just in the very beginning (very beginning) of your recovery.

I like what Bill said about the tests that can distinguish hemolytic anemia from iron deficiency, I would think that would be important to know!

Please take care, try not to think the worst, this healing takes time!

Rachel

 

[epstns]

I have a tissue valve, but I can speak to post-op anemia. After surgery, I was anemic, but not bad enough to warrant treatment. I just felt like I was going to freeze to death unless I was wrapped in blankets for the first few weeks post op. After a while, it just resolved itself, probably as my diet went back to more normal.

 

[Gribur]

TY for all of the response. The one thing that worries me is that this seems to be happening now, 2 weeks post op. I have calls in to my surgeon to see what may be up as well as waiting for blood results from this morning. I will tell you guys something, I just want to feel better, yes I expected bumps in the road but I guess I have very little patience and am starting to grow weary of the energy deficit the pale skin the pain and the possibility of crap going wrong around every corner. I guess the call from the surgeons secretary may answer some questions, until then, I wait.

 

[Bina]

TY for all of the response. The one thing that worries me is that this seems to be happening now, 2 weeks post op. I have calls in to my surgeon to see what may be up as well as waiting for blood results from this morning. I will tell you guys something, I just want to feel better, yes I expected bumps in the road but I guess I have very little patience and am starting to grow weary of the energy deficit the pale skin the pain and the possibility of crap going wrong around every corner. I guess the call from the surgeons secretary may answer some questions, until then, I wait.

Hey, at 2 weeks post op I was still in the hospital, pale white, unable to care for myself, and mostly under the bus.
It was the worst time of my life...but it does get better. Hang in there

 

[escargome]

TY for all of the response. The one thing that worries me is that this seems to be happening now, 2 weeks post op. I have calls in to my surgeon to see what may be up as well as waiting for blood results from this morning. I will tell you guys something, I just want to feel better, yes I expected bumps in the road but I guess I have very little patience and am starting to grow weary of the energy deficit the pale skin the pain and the possibility of crap going wrong around every corner. I guess the call from the surgeons secretary may answer some questions, until then, I wait.

Hey my friend, two weeks is just the beginning. Two weeks post-op for me I was freezing all the time (anemic) and asking myself, "what the heck did I do?" Wait for the call from your doctor. Take the iron pills and try to relax. Your body has been through the wringer and it takes time. Your energy will come back.
Remember, that doc in the ER is not a cardiologist so I would take his opinion with a grain of salt. I hope you hear from your doctor soon.

 

[Bill B]

Yeah, two weeks is very early. Anemia is common post-OHS and over all poorly treated due to the limited blood supply and the historic fear of transmission of disease via other people's blood. In the month prior to surgery I donated 2 units of my own blood designated for me only. When I became severely anemic immediately post-op, they would only give me one of those units. I could have used the other unit. I was weak as a puppy for weeks. In your case, I gather you were anemic post-op, they didn't do much and it looks like they didn't even prescribe iron until you ended up getting a transfusion a few days ago. Sounds like the medical center failed you at discharge to some extent and you need better follow-up care.

Most surgeons are VERY cavalier about anemia. If it doesn't kill you, they are OK with leaving it as it is. My surgeon, a guy for whom I had profound respect, said things like "People walk around for years with blood counts like yours." Uh, yeah, but they developed it and accomodated to it over months to years. I developed mine in a few hours. My ICU nurse later told me she was quite worried about me when they tried to get me up the first morning after surgery and I literally fell over. I passed out.

I remember taking care of my dad when he became severely anemic after surgery and cancer chemotherapy. I'd try to get him up for a doctor's appointment and I'd coax him along down the hall to get into the car. It was like he was walking, barely, in his sleep. He was nearly unconscious. I had to hold him up. I had a helluva time getting his doctor to do something about it.

You got a couple of units of blood, thank God. You need some close follow-up with your local cardioligist, and you might have to lean on him rather hard to get this diagnosed and corrected. it's going to take a while to rebuild your iron stores.

It's still a bit of a mystery to me why anemia is so common and often severe after OHS, while some OHS patients don't develop it. I basically lost 50% of my blood volume during surgery. When I was talking with my surgeon about it, I asked why they didn't use cell saver technology. He said they did! There are losses from "priming" the heart/lung pump, but those should not be that extensive. I never got a good explanation. He basically down-played the significance of losing so much blood. It didn't kill me. I actually did rather well despite being weak as a puppy. Within a couple of days I was doing laps of the ward like I was running a marathon, and I was in good spirits. Hell, I was just thrilled to be alive and remarkably pain-free, and I am probably one of the most persistent people on Earth. I was giving 150% effort to my recovery despite my serious weakness. So, in one sense, my surgeon was right. I did OK despite it, but I was much weaker and more impaired than I think I should have been for a long time.

 

[Gribur]

Well Dr.Guo (surgeon) just surprised me again and personally called me to find out what was going on with the trip to the trip to my hometown hospital yesterday. He told me no worries about the valve eating red blood cells, it is very uncommon. He said I am simply anemic from the surgery and to keep taking the iron pills and that it is early and not to worry, I will keep getting stronger , just rest and it will happen. I have my post surgery appt on sept 17 and he said he would see me then and if anything else comes up to give his office a call. What a great guy, Absolutely great when they can just get their secretary/receptionist to call but once again he takes the time, gotta love it. Now I can sit back and relax a bit. Ty for all your input and even though it looks like a long road, with family and friends like you guys, may just get through this already.

 

[Bill B]

Nice to hear, and he said all the right things about your anemia in relation to your valve, although, as I said, surgeons take what is rather severe anemia far too lightly. It SHOULD resolve, but yours seems rather marked (needing 2 units 2 weeks post-op), so I would work with your local doc to make sure you are going in the right direction and there is nothing else needed but iron.

I expect things will start going more consistently positive soon!

 

[Gribur]

Hey guys. At what point does this all start to go in the same direction. we attended my Mom's wedding yesterday and it was fun, getting to see friends and relatives. I was tired by the end so came home , put kids to bed and crashed. Today, not as well as yesterday, tired, sore, anxious. I am very aware of my heartbeat, feels like an idustrial pump behind my ribs and for some reason can even hear my valve today which is the first time other then when I have been in a very quiet place by myself. Bent over to see a spider my daughter wanted to show me and got dizzy. Not sure if I am just being paranoid and somehow unconsciously scanning myself for things that could be wrong or if i am tired and healing and this is all part of it. The mountain was hard but the recovery is no picnic. I so just want to really feel better every day and get back to driving, working on cars, playing with the kids (hardcore playing, like TAG LOL) I am just always so aware of this new valve, I was seriously feeling so much better prior to the surgery. Sorry for being a grumpy old guy but it kinda sucks.

 

[Julian]

How far out are you from surgery. I'm about one week shy of my one year surgery anniversary and I've barley am starting to have more good days then bad days. The past couple of days I've overall felt pretty "normal" most the day. I'm happy about this. I still hear and feel my valve tick some times louder than other but I'm getting used to it. Give it 3 years.

 

[Gribur]

OK guys seriously, how long until I no longer notice every single heartbeat all day long pounding behind my ribcage. Am I going crazy! Tommorow will be 3 weeks since the surgery and also 3 weeks since I quit smoking. This is the most trying time of my entire life, just want to be as close to normal as possible again!

 

[kfay]

You are ONLY 3 weeks out from a major surgery to your heart! You have to give yourself time to heal and 3 weeks doesn't begin to cover it. There is a reason why they don't let you drive for 4 -6 weeks and they tell you not to lift anything heavier than 5 lbs. You are anemic, and that will make someone who hasn't just had major surgery feel poorly. I would bet you not smoking is probably causing you as many problems as recovering from the surgery! Really, try and relax a little and let your body do what it needs to do.

If your Dr. hasn't talked to you about cardiac rehab, I would call at this point and ask about it. It can help you realize that things are okay and help you get a bit stronger each day. Hang in there, it's still early days yet.

 

[Julian]

OK guys seriously, how long until I no longer notice every single heartbeat all day long pounding behind my ribcage. Am I going crazy! Tommorow will be 3 weeks since the surgery and also 3 weeks since I quit smoking. This is the most trying time of my entire life, just want to be as close to normal as possible again!

Like I said earlier give it 1 year to 3 years really. Many people have stated it has taken them 2 years to really feel "normal" again even 3 years. Some things will never be the same again. It does get better as time goes on, its very subtle sometimes. Take it day at a time, 3 weeks is too soon. Give it at least 6 months to really get a feel for things. Being anxious and worrying will not help, do what you can to focus day at a time and learning to accept the changes instead of wishing they didn't exist and then you will begin to make a real recovery.

 

[TheGymGuy]

I am with Julian on this. Be patient. Take your time. Heal at your own pace.

 

[Rachel]

I agree with all who posted about recovery times.

3 weeks is only the beginning to your healing! I'd say Julian's got a good range here - 1 to 3 years!

But congratulations on quitting smoking - that's really SUPER GREAT!!! It might not feel like it now, but you are healing, just give it time

Rachel

 

[Randy Fecteau]

Gribur I went through the exact same thing after my surgery. I was put on iron pills for 3 months after surgery. My range is still only 138 but not taking anymore iron pills, I am 10 months out and still have great days and bad days but the bad ones are few and far between. Give yourself some time to get better and relax look around and except the fact that they fixed your problem, so what you can hear your valve once in a while embrace it love it and when you cant hear it sometimes find it and you will see that every position will be different in the way your new valve sounds. like my surgeon said cant change it so enjoy it its better than the other option. As far as those other feelings creeping into your head join the club we all wonder how long are valves will last how long we will live and so on and so on. Those are all natural to feel and in time they to will subside maybe not go away entirely but will get easier to put aside when they pop up. So feel the drama going around you grab it thank it for being there that way you will cherish the second chance we were all given. Time will take care of the rest. God speed.