Page 1 of 4

Update on me, not been a fun time

Posted: Wed Dec 10, 2014 12:27 pm
by raym
I've been avoiding the board for awhile. Last I updated I was receiving a biliary drain as my liver bile ducts were blocked by a enlarged lymph node (cancer). This was at the end of October. Soon after that procedure I spiked a high fever and was admitted to the hospital with an infection in my blood. Spent a little over a week there, mainly getting IV antibiotics. During that time they upsized my biliary drain and also placed a stent (endoscopic) on the left side of my liver as that was being blocked. I was released from the hospital with a PICC line and IV antibiotics to administer at home. After completing the antibiotics I felt not bad but just tired. I then started getting fevers again, though they were 100 and below. Last week I went to see my oncologist and he had blood cultures drawn and again I had an infection in my blood. I spent 4.5 days in the hospital to get that under control and am again on IV antibiotics at home.

Through these events I have lost even more weight and am struggling to gain it back. While I feel not too bad at the moment and have returned to work, I just feel like these events are signaling the beginning of the end and am very scared and worried. I really didn't have the mental strength to deal with Colon Talk noticed the post to check in. At this time I am not under any chemo and I think the chemo would bring me down much faster with all that is going on. The liver drain/stent are temporary and need to be replaced (not sure if temp next time or more permanent) and that procedure has me worried.

Physically I'm doing ok, but mentally I am very down.

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 12:37 pm
by KWT
Ray, it's good to hear from you although I wish the news was better. It's time to hit the protein shakes I know I am. I hope they have the infection under control so you can focus on the psychological problems I don't know how we do that :( butt it can be done. Best of luck

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 1:11 pm
by Marian1961
So happy to see you on the board today. Not so happy about your last month, you have been down a rough road. I don't have any words of wisdom, just wanted you to know you were missed and that I'm sending hugs and good energy your way. Really hope the infection gets knocked out this time and you will be able to recover your strength and weight.

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 1:54 pm
by ams5796
Ray,

As you can see, you have lots of folks on here who care very much about you. I hope that brings you some comfort during this difficult time. It tells a lot about you that you're working through this ordeal.

I'm sending you strong thoughts and prayers during this season of miracles.


Ann

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 2:00 pm
by Don.in.Dallas
Ray, You have been traveling a long and tortuous road for nearly four years. By this time you MUST be tired, frustrated and worried. The burden you bear is great. Take some rest, gain some weight and relax your mind. Just don't take too long - you still have some battles to win. Very best wishes to you. -Don

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 2:48 pm
by Rob in PA
That news SUCKS Ray! Thinking of you and praying for your strength (physically and mentally) to come back, especially for the holidays.


Cross state friend,
Rob

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 2:52 pm
by bitchslapped
Yep, sometimes a person may lurk but just doesn't feel like "talking" on here & figure out how to put it all into words. I can just say "thanks for checking in", or "hope you can get to the bottom of this"... which I do, and you are. As a former caregiver (see my sig) lacking knowledge in the medical field, I am limited to offering mostly support on this forum as that was a long time ago, things change & I've forgotten some of fine details over time. Though my DH's situation was completely different than yours, today I'm going to go beyond that a bit.

I was just an "all elbows & assholes" wife who handled more bile drainage/bag changes /tube flushes/bile soaked laundry that you can shake a stick at. Then there were those life-saving trips (yes, plural) to the ER/ICU due to sepsis. Seemed at times if DH wasn't in the hospital DM was. They upsized the biliary tubing + added a stent to help facilitate bile drainage. This is good. Pooling bile can cause infection, thus the antibiotics. OK, so moving on, I'm just going to pose a few questions for your consideration in asking the docs (not to answer here necessarily), but for future reference. Let me preface by saying that you probably have a great surgeon + oncologist by now who knows their stuff:

1. Would you benefit from Ursodiol to aid in keeping the bile thin & flowing through the stent & tubing? (hell, my dog is on it)
2. Would it be beneficial to bring in an ID (doc of infectious disease) to help manage infections, if not now @ what point?
3. Are you seeing a top GI hepatic doc in your area?
4. At what temperature do the docs recommend you to head to the ER (101?)?

Your body is so busy right now fighting infection that it needs rest, not work. Consider your options. Keep us posted, chin up. You're on the right track w/your docs in managing this.

Best Wishes
Bitchslapped

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 3:22 pm
by singingholly
Dear Ray, we all need a time to let ourselves go, to stop fighting for a while... Take a rest. If you feel physically good try to concentrate on this, enjoy this, and eat a lot of good and tasty food! You're so tired, this necessarily influences your mood and your way to look at things... I wish you can start to see things in a different way soon.
Big hug
Olivia

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 3:31 pm
by Stanfordmom
Ray,
Glad to hear from you but sorry about what you had to go through last month.

We all need take a break and rest for a little sometimes, before you start fighting again! Hope you feel better soon!

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 3:42 pm
by Amy14760
Hi Ray. Great to see you on the boards again. Work for me was always a blessing. Helped me feel normal so I hope you also are finding solace in getting back to a routine. You'll be in my thoughts as you work through this war.

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 5:45 pm
by elise
I'm sending a BIG (((((HUG)))))

Elise

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 6:21 pm
by NZJay
Sorry to hear about the state of things, Ray. I hope you find improvement and soon.

On the weight loss thing, have you tried homemade mass shakes? As I have only half a stomach, it's hard to get calories in, so I tried these and have managed to get 12kg back on my bones so far.
Blend up 1/2cup - 1 cup of oats, cup or 2 of milk, a tablespoon or two of peanut butter, and some choc or banana protein powder. Easy to drink and 800-1000 calories depending on how to work it. Not sure if that'll help but I know weight loss can drive a guy insane.

Best wishes.

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 6:27 pm
by michelle c
Ray,
Nice to see you but I am sorry to hear that you are having a hard time. I hate the emotional toll that this disease puts on people. Thinking of you Ray, and wishing you the best, hang in there....xx

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 7:19 pm
by dianetavegia
Ray I'm so sorry you're dealing with so much. Can you assign someone to check in for you when you feel like crap and just don't want to hear good or bad news? Just someone to tell us you're needing our thoughts, prayers, whatever suits the person.

I can't imagine how down you feel. I hope you get some relief and healing from these infections and someone can come up with a better option.

Big hugs and my prayers,
Diane

Re: Update on me, not been a fun time

Posted: Wed Dec 10, 2014 7:31 pm
by Sharona
Ray,
So sorry to hear what you are going through at this time. Know that you are in my thoughts and prayers.
Hugs,
Sharon