Tuesday, December 18, 2012

ER Visit and diagnosis for Chest Pain

It has been a few days since my last update because there's been another crazy bump in in the road. It is very hard to keep track of time, and to explain what days we are in and out of hospital so I will just include the important stuff.

This past Friday we went in for a pain management assessment. Phil had been taking medications by mouth for breakthrough pain in his chest and it was very obvious to us that it wasn't cutting it. After an emotional appt. the Dr could see that Phil's pain was a huge problem that needed to be aided with something that acted faster. Since his chest pain came on like a wave out of nowhere, it would take him at least half an hour to an hour to feel relief- so he would suffer a 9 or 10 pain level until then. Absolutely horrible. Thankfully we agreed that a pain pump would be best. A pain pump is a "cassette" like box that houses a bag of liquid pain medication. It runs through an IV into Phil's arm and acts much quicker then pills. The pump has a button to press when he needs a dose, and that way he can be in control of his pain. They brought us in that night as impatient and tested the pump to see how much he would need. The next day we were all ready to go home and put the pump to good use.

When we got home Phil vomited right away, as the strength of the medication is strong and causes nausea, ALONG with the side effects of chemo. That was the first time Phil really experienced the nausea I have been reading about. It has continued to be an issue, but is treated with 2 medications that work about as best as we could hope for. Another side effect of the pain medication is that he feels extremely tired. He sleeps most of the day, with moments of clarity. The less Dilauded he needs, the more awake he can be to enjoy his day.

Saturday and Sunday were fine, but overshadowed with extreme fatigue, as the pain in his chest increased and more medication was needed. By Sunday night around 10, we were in the middle of the Survivor finale and Phil just looked at me with alarm and asked for his heart rate monitor. He tested it, and the number was 131. A minute later is was 143. He felt his heart, all of a sudden go into palpitations and he knew it wasn't right. We threw on our shoes and mom drove us to the ER. If you are not sure what a healthy heart rate number is, 60-90 is normal. By the time we got to the ER and tested his blood pressure again, it was around 150. By this point Phil was shivering with panic and I was trying to calm him down. After a few tests we finally got a room in the ER. Every moment feels like a century.

They hooked him up to a saline drip for instant hydration, took blood tests, an xray and cat scan. His heart rate went down into the late 120s by around 2 am. There were no answers. All that they said was that Phil should give himself pain medication as needed. At this point it hurt just to breath, let alone a deep breath. He just tried to rest and sleep a bit until we knew what would happen next. One thing that we have had to muster up through the last few months is patience. Most of Phil's episodes happen in the night, and that is when all the great Drs we work with are home, cozy in their beds. So we have to wait and wait and wait until a Dr somewhere can help. It is unfair, but unfortunately that's just the way hospitals work. Kaiser has really been amazing, so we try very hard not to be rude or frustrated in those long hours. But, it is the hardest thing on earth for me to do. We are so scarred from that ER.

With no concrete answers they admitted us to Telepathy (heart problems), which is just down the hall from Oncology (cancer), where we were 2 days before. I tell you, I know this hospital like the back of my hand. It has been more of a home to us then our own in the past months. That said, it is a comfort being here where our fears are shared and aided by professionals. Phil sleeps like a baby here and my body has adapted to the chair-beds next to him. Though I must say my neck and back are shot and my eyes constantly bloodshot from lack of undisturbed sleep. Unfortunately this particular night, we had to share a room...

The moment we got settled in, we heard a disturbing and painful moaning behind the curtain on the other side of the room. A curtain is not a wall at all, not even close. You may not see what's going on, but sometimes hearing things going on are even more scary. That night, we basically flew right into the Cuckoo's nest. The moaning gradually raised in volume until he was uttering muffled words. One nurse kept trying to keep his oxygen mask on as well as, I'm guessing...multiple IV's or something attached to his arms that were keeping him alive and stable. At first she was nice, encouraging and comforting even. But as he kept pulling everything off over and over she had to be firm. This went on for 45 minutes. How do nurses do it? At this point he was now saying, "no, I don't want to, no! I have to go to the Christmas party!" ???

Gradually more and more nurses came to help keep him under control, as he was trying to get off the bed and fighting against the staff physically. Finally two drs came in one after the other and they basically tied him down. They used restraints of some sort because he was definitely angry and confused. Over the course of the entire night, the nurses were coming in and out of the room turning overhead lights on and off, trying to yell over his words to keep him under control. Over and over we would hear, "WHO IS THE PRESIDENT OF THE UNITED STATES? WHAT CITY ARE WE IN? DO YOU KNOW WHERE WE ARE? STICK OUT YOUR TONGUE- GOOD, NOW YOUR FOOT, NOW THE OTHER ONE! WHAT YEAR IS IT? WHO IS THE PRESIDENT OF THE UNITED STATES?!!!!

We looked at each other a few times without words, our eyes saying it all. "This is torture, this is a nightmare, when will it end?" Phil's heart rate kept going up and down according to the noise, the slamming, the lights. I have never seen him so desperate and frustrated. If that wasn't enough, Phil would press the button for assistance from the nurse and she just wouldn't come at all. We waited an hour at one point, until finally he said over the monitor that it was getting ridiculous. When the nurse came, she wasn't happy - most likely overworked, but not apologetic about her absence. Everything was so wrong!

I was able to catch a few winks somehow, but I highly doubt Phil caught any. By the morning his nerves were shot and he requested we get a separate room. Thankfully later that day, they moved us. The guy behind the curtain gradually settled down and surprisingly, spoke normal words and didn't seem that crazy after all. He was complaining to the day staff that he was mistreated and that everything was unfair. What I found out through listening is that he was on some kind of medication that night, and it made him disoriented and confused. I could tell by the way he was talking later on that there definitely was something off with him mentally, but I was amazed that a medication could go so wrong. I wish I felt sorry for him, I kind of do. But mostly I have NO idea why the hospital put us in that room at all?! For someone who needs to bring down their heart rate, that was just about the worst case scenario you could come up with.

When we were moved to a new room, everything changed. We felt safe and okay again. It was a big room, and it was getting dark out so we could both get some sleep. More discussions were had between the Drs, a heart echo was done and a blood clot was ruled out. Phil slept the rest of the day and ate nothing. This morning he woke up, drank a Boost and has been eating little bits throughout the day. Thankfully, the hospital provides free food, that is usually very tasty and you can order it at any point up until 7 pm. I got Phil a bunch of snacky stuff and he definitely got more cals today. That is so encouraging. His pain was much lower today, as was the pressure in his chest. He could carry on a bit of conversation and even laughed once. Here is the current verdict on Phil's diagnosis:

The Current Diagnoses For Pain In Chest
The Drs are sure now of one thing: there is fluid around the heart.  At this point it is not limiting movement of the heart which is very good. The reason he was doing better today is because his heart adapted to it's new environment. The question is what IS the fluid. They said it could be a virus which would go away on it's own (and it is most likely that). Or it could be malignant, as part of the lymphoma. The only way to deal with that is already being done - Chemo. They are going to do a secondary heart echo on Friday. If the fluid has lessened, it is the virus. If it has increased or is the same they will most likely stick a needle into it and get enough of the fluid to test it. That in itself is risky, especially with Phil's very low white blood cell count. But, the Drs know best, and I trust they will do what is right for Phil.

We are going home tmrw (wed) aft most likely. It is a high risk to keep Phil here with basically NO immune system abilities. It will be safer for him at home. We will go back in Friday and go from there. As far as visitors go, we must make sure that friends are not sick and have not been sick for a few weeks- just to be safe. It is evident that he could not fight an infection and we must take that seriously. I will be glad to get Phil home into his bed and in an environment where he is more likely to move around a bit more.

Now for some positive stuff! Mom and Hannah came with some Chipotle for me today, as well as Greyson!! This is a little baby boy Hannah babysits, along with his sister Keira. They are like a nephew and niece to us and it just made our day to see him. Mom has always loved boys, and always talks about wanting to have some of her own :) She has an amazing way with babies and kids! Mom's saying, "he looks like an otter!" Hannah is an amazing babysitter and overall child whisperer. Anyone she babysits for could vouch for it!

Also, our morning nurse walked into our room just as I was waking up. So basically he is from Jersey Shore... amazingly, he was so nice to Phil! He was giving him a cancer pep talk saying things like, "It's gonna suck but you just gotta fight! Don't give up, you're young and you can totally beat it, man!" I just thought it was cute that this guy chose nursing as a profession and that he really does it well :) His hair was way higher then this picture shows..

Mom has cleaned the house up and made us some nice chicken fried rice and has said the words, APPLE CRISP in passing so we have something nice to look forward to when we go home. She has been such an amazing friend and rock even though she is in pain for us too. She is made of some special stuff, and I am so fortunate to have her here beside me during this time of our life. Her and dad text and chat all day, like kids with crushes in the schoolyard. As you can imagine, this warms my heart and makes me feel so deeply happy.

Kay will be coming soon to see her dear son, and I have been in touch with Laurence throughout the past few days so everyone can be in the loop. It is so hard for the family to be so far away and helpless. But they do support with calls and texts and of course prayers so we couldn't ask for more. In a few months this will all be over. A distant memory that ultimately will have strengthened our love, our faith and trust in Jehovah. I must think of it like that. That is is just for a while and that it will get better. Why worry, why spend a second on it. Worrying today robs tomorrow of it's joy.

I will update as news comes in. We thank you again for all of your support.
Much love


Sturge said...

Hollie - thanks again for such an in depth, detailed account of the past 24/48 hours.

Love that nurse with the hurricane hair for his encouraging words. That's gotta be the mantra - "Fight, Fight, Fight!"

As you and Phil can tell from the endless love and support you continue to receive from friends and family, there are scores of us trudging along this path with you, shoulder to shoulder, hand in hand.

Deep breaths, keep smiling, and I'll see you in 2 more sleeps :-)

dad xoxo

Abigail F Shipley said...

Chest pain can also happen due to acidity and gas formation in stomach.

Beth Joyce said...

Day by day Chest Pain patients are increasing.