Extremely out of breath

Hi Bernie;

I'm no doctor but sounds like you are retaining fluid.  Discuss with your team.  When my LVAD was installed back in 2013 I had to have fluid drained out of my right lung.  Felt the same as you described as can't get enough oxygen to muscles.  Best wishes.

Bob

Sorry to hear that Bernie. What does your team say? Seems to me they would have done another right heart cath by now to see what’s going on. Should have done some more echo’s also. To still be out of breath after three years is ridiculous. I also have ischemic heart disease and have the HM3 but I was back playing golf within 4 months of receiving mine and that was over 5 yrs ago now. The VA determined I was exposed to AO in 69 while serving in Korea.

Bernie, I am having similar problems. I am also a Vietnam veteran with likely Agent Orange issues. I am 11 plus years out with my HMII, age 82. I have done very well over most of that time. Recent right heart cath showed no problem there. Recently going back on diuretics has helped a little but my problems may be more pulmonary than cardio due to a bout with acute respiratory syndrome four years ago. I have a diagnosis of pulmonary fibrosis but no confirmation about whether it is progressive of not. I feel normal most of the time until I get up and start moving. Sound familiar?

I got my LVAD 9.Aug.2019.  By October I was in the hospital GI Bleeding. My hemoglobin was down to 5 g/dL.  I had 13 bleeds, required 8 units of blood.  By Christmas I was in the hospital again with GI Bleeding.  I was released after 3 days.  Just 3 days later I collapsed. I was again in the hospital, my hemoglobin was 5 g/dL again.  I then learned that GI Bleeding is a major problem with LVADs.  I decided then that I needed to be able to measure my hemoglobin level so that I would know ahead that my hemoglobin level was going down and that I had a GI Bleed.  I bought a meter from ebay for $170.  I now measure my weight, glucose, INR, and hemoglobin levels twice a week. This way I know if I gain weight quickly, I'm holding water which affects my breathing.  I watch my salt intake or take a diuretic as per my doctor's direction.  If my hemoglobin level show a downward slope I know that I sprung a leak.  This is ahead of seeing black stools.  I notify my doctor to determine if he wants me in the hospital.

The best suggestion I can give, is to be proactive with your care.  Take control of the situation as best you can.  

My husband has this symptom anytime he is retaining fluid. He feels the same as he did before his Lvad. He is now on Torsemide 2 times daily. Makes a complete difference.

Hi Ernest, absolutely your stool would be dark; however, i also took daily iron so blood was not visible and stool little darker from that.  I also had 14 units of blood throughout the month of December, transfusions.  What a journey this was.  My Dr./team will be turning the speed down on the pump in a month, as I do have a pulse 50 percent of the time.  Also they ordered fish oil tabs... and another med  they wanted to put me on.  There are things they can do to hopefully help no further bleeds.  I know the process for sure and absolutely proactive with your care.  Take nothing for granted and always ask what you don't know.  The informed patient is the best patient.   Also are you on aspirin?  I was couple years ago, my first bleed they took me off....with the blood thinner that doesn't help.  With the blood thinner and device (LVAD) dual mix for a perfect storm.  

Juanita. 

Not saying that is the case here but not every fluctuation in one’s hemoglobin can be attributed to 5he LVAD. My wife who is otherwise healthy is constantly getting panels as a precautionary more for her fluctuating hemoglobin level. About 4 or 5 years ago her PCP referred her to a cardiologist due to not feeling well and 5heir being a heart history in her family. Before her appt they scheduled her for labs so they would be ready when she came in. We got a call about two hours later and told us she needed to be in the hospital immediately since her hemoglobin was under <4. We rushed her to the hospital where she was put in ICU and given 4 bags of blood over the next 12 hours and then discha4ged. She ended up with an internist running every test 5hey co7ld think of including swallowing the camera. They found NOTHING! Obviously we were all baffled but they keep monitoring her hemoglobin every 3 months. After almost five years of no problems it popped up again about a year ago. She was feeling tired and dragged out and was smart enough to know that could be a problem. Sure enough, her hemoglobin was down to 7. This time she was well enough she didn’t need the blood again but 5hey did all the testin again and like previously, found nothing! They have started her on a daily regimen of Iron and it seems to be working.

A year after I had my HM3 implanted going on six years ago I was on 5he golf course and was hit twice by my AICD. Not a fun experience. Ended up having the guy I was playing with drive me to an emergency room where I was flown directly to Duke. I was in a Vtac storm. Again, not a fun thing. After 7 days of being there on a drug therapy and in and out of conscious they decided I needed a cardiac ablation. That was another 12 hr procedure. Been great now for five years and it would have been very easy to blame this on the LVAD but the fact is a bad heart is a bad heart. Personally I’ve been lucky to have a great team and very lucky. I haven’t had to take any lasix or potassium since the LVAD was put in. I monitor my Coumadin weekly and take a baby aspirin daily. It is what it is.