Join CaringBridge during this most important time of the year. Your support means that we can continue to provide free, secure websites all year long.
3/11/2017 Latest post:
Hello all. For those of you that don't know, December 12th Jerry finally had his left knee replaced. The surgery went well, and has rehab'd actually really well. During his recovery something else happened. This is the relatively condensed version:
He started to have extreme Acid Reflux which in turn caused him to stop being able to eat without pain. In the first 30 days after the surgery, for many reasons) he had lost 22 lbs ( Most of you will know how extreme that is, Jerry was far from "over weight". In addition to that he was unable to get much rest. He tried to work through it for quite some time without much success. We saw our primary care physician a few times trying various sleep aids, none of which really did much good. Then, he decided to go back and talk to him about the acid reflux issue next. During that visit, Dr. Tim noticed the fluid on his lungs, and sent him to the ER. During that trip, Jerry was at the hospital for 3 days, they treated the acid reflux and started the process of trying to figure out what was causing the fluid and subsequent heart failure. On top of that, he had anemia, low blood iron and at the time was missing a key component of his blood cells.
After 3 days, they sent him home with a regiment of medications. The acid reflux was pretty much controlled, although mentally I think he still expects everything to hurt when he eats... so he is still not eating very well. It doesn't help that he suffers from extreme "dry mouth" and it is physically impossible to swallow most things. When he left the hospital they sent him to several specialists, but as you would expect, there is no sense of urgency when you aren't actually in the hospital. We waited a minimum of 2-3 weeks to get appointments, all along still having all the problems. At one point we were asked to get an additional MRI on his liver (a prequel to having an Endoscopy and Colonoscopy), and that instigated this last trip to the hospital. It wasn't the result of the MRI, but what holding his breath while laying flat did to him. It was really the first time he really felt short of breath and it didn't rebound that night or the next morning. We went back to the ER at 10am, Friday Mar 3.
They have put him through many many scans, tests, biopsies, xrays, Ultrasounds, EKGs... and between many of the tests and the relatively recent history, the cariologist Oscar Gonzales had the epiphany that this could be Amyloids. They did a double heart catheter and attempted a heart biopsy to see if they could nail down a diagnosis. The heart biopsy wasn't successful, his artery in his neck must take a right turn, because they couldn't get the tool down that way to accomplish it. The next day, Monday, Jerry's Hematologist did a bone marrow extraction (boy that is a fun one). And 3 days later the did confirm the diagnosis of Amyloidosis.
Amyloidosis is a blood disease where the platelets that are created in the bone marrow don't finish the creation process correctly and pieces sheer off of the cell. Those pieces then go deposit in organ tissue and cause all sorts of issues. When they deposit in a kidney or lung, you have a second of that organ so it may not be obvious, but when thy go to the heart it is much more obvious. In Jerry's case it has caused the outer muscle to stiffen, which then doesn't allow the heart muscle to relax properly. it is a definite problem.
So there are multiple issues here. To treat the Amyloids you have a series of weekly chemotherapy treatments that should stop them from being produced. But the more pressing issue is getting the fluid off his lungs and his heart functioning correctly.
He has had good and bad days, that is why they have moved him 4 of the times. In and out of CCU. His oxygen level is expectantly low, because his heart doesn't relax. His blood pressure is also low which makes it VERY hard to use diuretics to get the excess fluids off.
The immediate issue outside his lungs and heart is that he is severely malnourished. And is also having a very hard time in the last 3 nights resting. the first 5/6 days here we didn't have the nighttime sleep problem -- these are so heartbreaking.