I’ve noticed that most people who stumble upon my blog are interested in information about “fluid around the heart and lungs”. I’ve decided to add an extra entry at the bottom of this one for those of you just interested in our experience with fluid around the heart and lungs. Please scroll down to find it under Aug 9, 2013.
Origanal Entry from Oct 18, 2012
Here we are, again. This is what was supposed to happen. On Tuesday we went to see the Multiple Myeloma Specialist and discussed weighing the risks between graduating from hospice care and continuing with chemotherapy on Monday or forgoing chemotherapy and allowing the cancer to take it’s course. However, due to my dad’s recent problems breathing we were sent for a CT scan on Tuesday which came back showing fluid around his heart and lungs. The plan of attack was to go for an ultra sound of the heart on Wednesday and to get the lung fluid drained on Thursday. They would also test this fluid for cancer.
Now, for what actually happened…We got my father dressed for his Wed appointment for the heart ultra sound and in the process we noticed an alarming amount of fluid collecting around his “love handles”. His sides bulged out, more so the right side than the left and he said it was a bit painful. He had begun to collect fluid in his abdomen as well. So, between Tuesday and Wednesday he had retained a lot of fluid, and my question was, can he make it one more day until his scheduled “lung draining session”. When we came in for the ultra sound I called hospice and asked for advice on going home or if we should try to pursue some more help since we were already at the hospital. Since it was near 5pm, it ended up that we went to the ER and got admitted. We stayed last night on the hematology floor. The nurses here (and the doctors) have been really nice so I’m glad for that.
It appears that draining the lungs is a less invasive and less complicated procedure than draining the heart. There is quite a bit of fluid around the heart, but it seems that his heart is functioning well enough for now. If we choose to drain the heart then they do not honor our DNR (do not recessitate) order…I still don’t totally get why they wouldn’t but I just accept it. While not confirmed, the fluid is probably due to the multiple myeloma and thus cancerous and will likely come back but how much fluid in what amount of time is a guessing game. It is possible the heart will give out before the lungs would fill again.
The plan is to drain the fluid from the lungs today and take our chances with the fluid around the heart. If he is feeling better, he may still choose to pursue chemotherapy.
I’m feeling really awful because the stay here last night was precautionary on their part and involved another x ray and lots more blood draws from my dad. :-( All I wanted to know was if he was ok to go home and come back in the morning for the scheduled lung drain. Had I not said anything then we would have gone home last night and my mother and father would have gotten a good night’s sleep and our scheduled appointment would happen in an hour from now anyhow. If they would have at least drained the fluid yesterday I’d feel better that we made some progress. So all I’ve done is keep us here overnight and added a lot more testing and blood draws to my dad’s short life. I promised myself that I would be his advocate and be aggressive with asking questions of doctors and be aggressive with insisting on getting help with whatever he was struggling with at the time. Who knows, maybe if we went home it would have been a very stressful night for us and we would have come back. Ugh…I guess better safe than sorry right?
My wonderful husband went home last night for my mom and I and got us some clothes and snacks for the hospital stay and most importantly he brought back a few plates of my mom’s famous baklava. So basically we have pure gold to bargain with. ;-)
August 9, 2013
FOR THOSE OF YOU LOOKING FOR INFORMATION ABOUT FLUID AROUND THE HEART AND LUNGS… I’m sorry that you are searching for this information because it mostly likely means that either you or someone you know is having difficulty now. I wish you the best and send you and your loved ones caring thoughts and light.
My father was diagnosed with multiple myeloma at the age of 94 in May of 2012. The other entries of my blog describe his life between the time of his diagnosis in May and his death in October. Below is my experience with fluid around the heart and lungs and my father.
After many ups and downs, my father had started to improve his strength and began walking more in September but towards the end of October we noticed that while his muscles seemed to be able to do the work, he couldn’t catch his breath. We found out it was because he was collecting so much fluid around his heart and in his lungs. We are unsure why he had the fluid build up. I’m told it is rare in multiple myeloma (but still possible) for it to affect the lymph nodes. Ultimately, that’s what I believe was the problem; that his lymph system was not able to do it’s job because of the multiple myeloma. His kidneys could also have been failing.
He was scheduled for an ultra sound of the heart, and when he woke up the morning of his ultra sound we noticed an alarming amount of fluid collecting around his “love handles”. As far as I know, this indicates that there was so much fluid in his body that it was now collecting in the abdominal wall. From just the night before it was a dramatic change…he went from labored breathing to fluid collection around the abdomen. We were emitted to the ER so they could monitor him until the next day when they were scheduled to drain his lungs of the fluid.
The process for draining the lungs seemed to be very simple with a local anesthetic. However, to drain the heart is quite a bit more invasive. It involved a “surgery” and the risk of complications was a lot higher.
Initially they drained one lung (taking 1.5 liters off!). I saw him moments after the procedure and he instantly felt better. I saw the fluid and it reminded me of Mountain Dew. To my recollection, they basically just used a huge needle and pulled out all the fluid they could. He was awake for the procedure and he felt really good afterwards.
We then had to decide if we wanted to either drain the other lung or the heart. Because there was so much fluid, they did not want to drain both lungs and the heart all at once because of the potential shock to the body. We got many opinions. After lots of debating weather it was worth putting a 95 year old man through heart “surgery” to drain it, we finally decided we would rather try to drain the heart and fail then to not try and wish that we had. This procedure was longer and I’m pretty sure he was under anesthesia for this. They had heart doctors go in (I think through his neck…it’s been so long now I forget) and they were able drain the heart. They took 750ml from his heart! There was a risk that he would not survive this procedure, however, he did.
After the one lung drain and the heart drain he was a new man. He even was able to stand a bit. He was able to breathe again! It was decided that we would drain his other lung at another time.
Now it was time for the “waiting game”…how long would it take for the fluid to build back up…hours or days? He had the lung drain on Wednesday, the heart drain on Thursday night and was going to go home on Saturday afternoon. When I saw him on Friday he was great. When I saw him on Saturday morning, I noticed labored breathing again; an indication that the fluid has already built back up in a little more than 24 hours. By Saturday night, there was so much fluid built back up in his lungs and that he did not survive.
I always thought things would be more black and white, but decision making was REALLY difficult that day. Draining the lungs seemed to be a no brainer because it was so simple and not too invasive. But deciding on the heart was difficult. My father was capable of making decisions so we were sure to ask him what he wanted. I’m really glad we did all we could and tried to help him.
I hope you were able to find some helpful information from my experience. Thank you for reading.