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Posted 2/21/2011 3:01 AM (GMT 0)
Today was day 2 since Ron's bile duct surgery - the liver transplant was 16 days ago.  He's still hallucinating (but knows what he sees isn't real) - I don't know if it's the new Cyclosporine or left over from his morphine drip - they switched him from Prograf to Cyclosporine Friday morning and stopped his morphine drip early this morning - he's on Tylenol only (he can't tolerate pain meds of any kind).  He's weak (down to 147), in pain and now we have the newest thing looming over our heads - the doctors found a dark spot on his lung (when the did the CAT scan to check for a bile leak).  I thought if we could just get through the liver transplant (I wasn't worried about he bile duct leak repair) - he'd be on his way to better health.  But ever since the doctor mentioned the spot on his lung (and I've spent tons of time online via Google looking up lung cancer) - I'm standing on the edge of a cliff!  I can't stand the hospital - I'm tired of thinking about Ron being sick, tired of hearing how sick he is, tired of spending all my time with this illness/transplant/could be dying from lung cancer obsessive thoughts.  I had it out with the doctor today, plan to speak with someone in Risk Managment tomorrow - Ron was given a drug during surgery that's on his 'allergic list' - and I even ask to and spoke with the anesthesologist before the surgery.  I just feel absolutely fed up.  I can't hold a conversation with my husband - he's like a toddler - can't remember anything, I have all the decisions to make, bills to pay, worried about losing my job - I need to change my FMLA from caring for him to me..........my doctor is taking me out of work on FMLA for my ongoing anxiety - which has reached NEW heights over this whole thing.  I am a strong person - but this is just too hard.  To add fuel to the fire, my son who just married last summer and had a baby this past fall - his wife left him - she decided she didn't like being married - so I'm worried about him............too much, too much!!!!
Posted 2/21/2011 3:13 AM (GMT 0)
RC, you seem to be the sort of person who takes on everyone's problems.  Of course, some of this is necessary when your husband is a transplant patient.  I know it has all been going on long enough and you just want life to return to normal.  Remember that this, too, shall pass...in God's time, not yours or ours.  "Let go and let God."  I hope your doctor will be able to help you with your increased anxiety and that Ron will be okay.

Hugs,

Connie

Posted 2/21/2011 4:12 AM (GMT 0)
RC,
I can speak to Ron acting like a toddler. Anesthesia used during transplant surgery is very potent and the effects don't go away quickly. For the first couple of weeks, I couldn't differentiate between dreams and reality, even though I knew it was happening. It sounds as if Ron was more affected from the transplant surgery (than I) and then he had the gall bladder operation. The anesthesia can mess one up for several months. After the first few weeks it gets better.

As far as the spot on his lung, there's nothing you can do by worrying about it. If the spot turns out to be something, then worry if you must. Step back, take a deep breath and calm down. Freaking out won't help. Remember a few weeks back, when you were worrying about Ron living long enough for a transplant. He did. Be happy, things could be much worse. Take care of yourself and be well.
Posted 2/21/2011 9:23 AM (GMT 0)
RC,
Things were getting a bit much for me today, and while I love the idea of 'me' time, I over-think things when I am quiet and still. Instead, today I just had a great big CRY! I was in the shower, and no-one could hear me. Maybe that makes me a big woosy girl... but it was a great emotional release. I then 'snapped out of it', and started soldiering on again.

I can only imagine what you are going through, and hope there is a light at the end of the tunnel for you all. God bless xx
Posted 2/21/2011 2:11 PM (GMT 0)
RC,  right now things are not looking as good as you thought they would.  It's hard I know.......As the others are saying.........it's time for some "me time".........You really need to try and do something however small for yourself to take your mind off of this for a bit.  I am going back in my postings........you and no other caregiver are the energizer bunny.......Everyone needs to recharge their batteries from time to time, so that you guys can continue the fight.  Take a walk, go to a movie, get your hair or nails done,etc.........what ever it is that makes you calm and/or makes you feel good.  

Goddess,  that was my place to cry too. 

Thoughts and prayers for you both......... 

  

Posted 2/21/2011 3:22 PM (GMT 0)
Ok girl..... deep breaths... yes right now You have to be the focus before you end up in a hospital ....the problem with this journey.... we all keep hoping for that "magical" thing ... cure... pill... treatment... etc... so while dealing with the warm pile of garbage in front of us.... we believe "if only" he had the TIPS...something to help that or she would be listed... or have the transplant...along the way...we struggle day to day with these issues but also with the day to day operations of our families, lives, and homes....
we go into this journey... with rules...myths.... lack of medical knowledge... lack of knowledge in general.... and one piece of information can mean the difference between life and death... it is a complicated complex situation... most of us do not just appear there with the skills and knowledge to deal with it...
I suffer PTSD and anxiety disorder and going through this journey was not easy... the anxiety level is high...however I found that the techniques that I had gained throughout years of dealing with these two issues served me well on this path... for I do not medicate and use environmental things to keep it in check...and to back it down.... the techniques that David and Rick have suggested are exactly what I use... focusing on the beauty of life...my dog...a book... a bubble bath...but disengaging as needed to regain focus... even if that meant I had to leave Mike's side every 15 minutes... and no he didn't get it all... even until the moment he died... I was alone in that horrific decisionmaking time....well and forgive me please... I am grounded in my faith which meant I was not alone....and that is one of the sources that I use to defuse anxiety...defusing anxiety is a choice... decide before the situation... how you will handle bad news... put in coping mechanisms... and use them.. use them ... use them.. prioritize... how important is it...ok it's important... can I change it... how... no... then step back... deep breath... and figure out what you can do...I recommend the Serenity Prayer...when emotion begins to overwhelm you step back... and figure out what's going on ... what you can do... what you can't do... deal with what you can.... and learn coping mechanisms to deal with those you can not....I speak from experience...Mike and I walked this path for 7 years...I faced the unthinkable unspeakable alone with my faith and these coping mechanisms... sometimes... I just plain came to the Forum...and spoke to the Forum....on Mike's deathbed I spoke to the Forum...I hope this helped... you must center yourself for you and for him... but mostly for you.. to do all that is laid on your plate this day... take care... my thoughts and prayers are with you.. Sandi
Posted 2/21/2011 10:07 PM (GMT 0)
Thank you ALL for the advice. I do have a difficult time centering - it's been - literally - a life long challenge - I had the same anxiety issues as a child as I do today. I get so wound-up - I'm BLIND to everything else.

The hospital feels like a prison to me - when at home - I think about the fact that I have to go there the next morning (and I live outside of Atlanta - traffice is HORRIBLE - and causes me panic attacks without all this Ron's health stress stuff) and when I'm at the hospital - I can't wait to leave - it doesn't matter to me that Ron is there - I just feel like I'm in a straight-jacket and I want out.

The meds have him out in la-la land - we can't hold a conversation - it's like I'm a babysitter - and when I do help - all I hear - is that I'm not a nurse, I'm not patient, I can't do anything the way the nurses to, apparently I can't even order correctly from the clear fluids menu either.....I think - why am I there - at this point - the only reason I am is to talk to the many doctors that visit everyday - 'cuz - Ron wouldn't have a clue as to what they are telling him.

It makes me feel heartless and uncaring - I've fought for him for 18 years and yet, I can't even change his gown without him complaining. I know, I need to center!
Posted 2/22/2011 1:00 AM (GMT 0)
Someday soon, Ron will thank you for everything you've done. If possible bring him shorts or sweat pants, along with roomy shirts. Johny's, (hospital gowns) are the absolute worst. Familiar clothing goes a long way towards feeling better.
Posted 2/22/2011 1:15 AM (GMT 0)
Brought his shorts today - his drainage area is wet constantly - so the shorts lasted about 30 minutes. He has no idea what's going on - he was standing naked in his room today and people were coming and going and he didn't flinch..........he's kinda modest - so this is really out of character.

The doctor wants to change his meds - Cyclosporine is in the same family as Prograf - once okayed by surgeons they will be switching him to rappamune.
Posted 2/22/2011 1:47 AM (GMT 0)
Hang in there....it's a tough time... pace yourself... you're doin the best you can and there's a lot comin at you so... just pace yourself...take a break here and there...find the lobby... the chapel... the social worker... etc..
Posted 2/22/2011 2:26 AM (GMT 0)
I've become less modest, the more time spent in hospitals. The seventh night after my transplant, my nurses found me out in the hall, stripping. When they told me the following morning, I was appalled. The nurses said it isn't that uncommon. As far as the drain, it shouldn't be leaking. Don't they have a small bottle to catch the fluid. I would wonder about the possibility of infection with a leak of that sort.
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