Lori's Journal

Rita Savelis  Hi Lori. It's nice to get some news from you but I'm sorry you are not feeling great. It's still very early for you after multiple valve surgery on an irradiated heart. Surgery is hard on your lungs as well as your heart. Recovery can take longer. My surgeon told me I would be tired for a long time. He didn't give me a timeframe. I was out of breath. I didn't feel better than before surgery. That took more months. Every heart is different. You've been through a lot and your body may need longer to heal. Sometimes being out of breath can be a sign of a pleural effusion as well which would show up on an chest xray. Your lungs could have some fibrosis from your cancer radiation. I had several pleural effusions after surgery which were drained (and gave me more energy). Take care.

Robert Miller  The fact that you think things are going south would concern me. It should improve. I got a breathing thingy. It's some device that you blow into. Are you using something like that and if so, what is the progression? If it is getting worse, tell the cardiologist. 

Lori Risboskin  Hi Rita, thank  you for replying to my post. I am always interested in hearing from other mantle radiation therapy patients, as we do take longer to heal.   I did have one thoracentesis to drain fluid from my left lung 10
days ago. Although they removed 1 liter of fluid I am still having breathing issues. I have an appointment with a pulmonologist on 11/6. Our surgery is identical, with three valves. May I ask how long it took you to recover or at least be able to breathe effectively during any type of exertion? 

Rita Savelis  It's hard for me remember exactly how long "recovery" took. I was back at work about 3 months later (desk job) but I would get out of breath on stairs or walking uphill. I have a hard time with aerobic exercise. I take a dance class but need breaks. I have been told that I can not improve my stamina. I'm going to say it took 6 months to a year to feel recovered.  Surgery needed to happen but I didn't feel like I had more energy than before. Again, everyone's heart is different and everyone's experience is singular. Hopefully your pulmonologist is experienced with radiation. A specialised lung physical therapist can also sometimes help with breathing exercises.  Radiation does strange things and doctors don't always understand all of them. It can be frustating as the average doctor will not have experience with the myriad ways radiation affects one in the long term. Doctors are also so specialised these days that they don't look at the whole picture. I feel for you. I have a sheet of paper with a list of dates and procedures I've had (hodgkin's, thyroid, breast cancer, valve surgery, etc) so that a new doctor can very quickly see my health history. They sadly don't have time to get into long discussions. But most of my specialists are at the same hospital so that they can more easily communicate and sometimes make group decisions.

J Alexander Lassally  Hi Lori - Are you on beta blockers?  Just making sure your BPs are not too low or pulse too low. I did notice that while on Beta blockers I experienced add on shortness of breath (SOB). While you are exploring this confusion, you **MIGHT** consider switching BBs to see how that impacts things.     Just a side note, at month 7 - I still had SOB and was "fed up" with how I felt on walking up hills. I went to a new cardio and "demanded" to be taken off beta blockers... Basically, I made the decision for myself and it helped...  We traded off about 10 bpm of resting pulse for this, but worth it... 

Jill Porter  I had shortness of breath for quite a long time after my mitral valve repair. Some may have been made worse by anxiety. I really didn't start feeling better until about the 6 month mark. It was a very slow improvement timeline for me.

Lori Risboskin  Thanks to everyone for responding to my post. I have a leadless pacemaker which does not allow my heart rate to drop below 60.  It typically ranges 82-95. My BP averages 135/80 and my high recently was 142/90. 
I have never been prescribed a beta blocker. I am currently taking Indomethacin and Colchisine for inflammation, and am still on a diuretic for fluid.  I had fluid drained from my left lung on October 16th and  still have  consolidation in that lung as well - which could be normal trauma caused by the surgery. I have an appointment with a pulmonologist on Wednesday and hope they can identify the cause of my random shortness of breath. I hyperventilate and struggle get my breathing back to normal. It is difficult to do at times and sometimes frightening. I am hoping the pulmonologist can confirm the breathing issue isn’t from something more serious. . Rita and Jill, thank you for sharing your experience.
It’s good to know others have had this issue and that it might just be part of the recovery.  

Robert Miller  Your BP is a little bit on the higher end but it wouldn't be too much a concern for me. Your heart rate seems rather high (I assume the 82-95 is the resting heart rate). Metoprolol might help you. It lowers blood pressure, lowers your heart rate and supposedly also addresses angina. Don't take meds to cover up the real source of the issue but sometime you just have to take them, especially if you try to regulate your heart after surgery. I am not a doctor so don't take my word for it. 

Trygve Harris  Hi Lori--I am not yet feeling much better than before surgery either but it is a bit better. My lung has a fibrosis from radiation and a limit to how much it can expand. When I saw that in the report I freaked out a bit, but upon reflection, I see it has always been thus, for 20 years or so. But when I was very fit and running and doing taekwondo, I was always a bit winded in the class. But I WAS in the class. That made me feel better--the limited capacity is not something that is getting worse. It's there, and has been and no need to worry too much, because it's there and not worsening. Maybe you have something similar? You had two replacements and a repair? That's just gnarly. No wonder it's taking its time. If you improve even a tiny bit, it's still an improvement. I got a pacemaker too!