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I love my husband to pieces. But the one thing is that if he isn't really comfortable with someone, he won't ask for help. I need some ideas of how to make this whole journey easier on him as well. Is there anything that I can do to help him the day of surgery? Make a "go bag" for him? Write him a letter? Ask certain people to physically be at the hospital with him? What were things that you did for your spouses or if you are the spouse, what are somethings that may help him? Thank you for any help you can give me.

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  • Meagan:

    Mostly be near and loving, Otherwise, I have two suggestions. First, let him do things for himself as much as you can. Second, be prepared for the time he's on prednisome. He'll be emotional, snappy, and weird. My kids started calling me, Doctor Jekyll and Mr. Prednisome. Making fun of the condition that way helped a lot, and we needed it. But it does change one's personality. Thankfully it's temporary. He still loves you and is grateful for your love and help. Best of luck.

  • You don’t need to pack a lot since the hospital will be providing most everything for at least first few days after that Pajamas, of course phone iPad if available 

    but mostly you being there for him. You will be needed as much in his recovery as you are pre operation 

    good luck to you both

    God speed

     

  • Just being there for him is what he needs. When we got the call we thought we would be back home in a month or so. It was 5 months and my wife was there for me ALL through this. It was a very important thing she did. I can't understat this. Good luck and I'll keep you in my prayers. 

  • I did 3 months in the hospital at transplant time so I was just hoping to have a miracle which I did within a few days according to my doc.

    6 months later I was @ UW getting a Heart TX eval.

    It is all personal.  Prepare of course.  I was in the medical business but as I got more ill, before and during hospital, it was important to have someone to gather data - which I wanted to know, and it became harder for me to manage writing or anything.  

    I did not have that chance as I went from ER to hospital and next thing you knew I lived there.  I sent for items I wanted and worked for me.  It is a little different for someone who is in for long before it because you essentially live in a hospital and a very weird new noraml is created. 

    POST TRANSPLANT:  You need to be close and closer.  Coming out of that big of a surgery is very different than many people experience.  It is a pretty tough time in many ways and you may not be able to communicate for a bit and that can be more frustrating than you can imagine.  Someone you know can assist with that ability.

    The rest of this post is for any person who has these same questions on this valuable topic.  It is my advocate opinion.  Educating on these life savers is important.  

    No matter the situation or circumstance any person who is newly listed for a transplant. That is the premise.  WE are here now.  We are the same in that one regard. And now we/he/she has a new job.  To prepare as much as possible.  Long life left.  Doctors advice and nutrition advice is not a suggestion.  You are preparing for a surgery like most people will not know.  Your life will be saved when you wake up.  You should be in top shape in every way.  Your body freaks out so every label is read, every stone unturned to find the products that can do that.  Food nutrition and wellness pre and post should be non negotiable for your own self.  And then that gift needs to be protected since there is someone else who needs it too.   Belive me.  Since my liver transplant I worked my way off of the Heart transplant list and that can always happen - it does.  If not, you will be in that physical shape and will not sell your self short.

    I hope you accept that soapbox as a positive message about what your will and work can do for you physicall and 1000% mentally.  Bring the fight just like every other Survivor. Be a Transplant Survivor.  Sounds pretty good when you say it proudly.  Proud is alive.

     

     

  • Meagan,

     One suggestion is to have an email already typed out with all the pertinent information that you have received the call and you are on the way to the hospital.  Say everything you would like to remember to say that day now in that email, put all the email addresses in the To or BCC field of the email and then save it in your draft folder.  Then when you get the call from the hospital, open the email, make last minute corrections, and send the email.  You have just notified everyone that wants to know and you can concentrate on getting your husband out the door and down the road.

    Mark

  • Your contInual support and just being there for him is unbelievably important. In my 5 month hospital stay (heart stopped once, told her to "make arraingments") I can guarantee that she was instrumental in my surviving. Never understate the power of love. :-) Good lick!

  • Writing him a letter would be special.  Even a card or two would be nice.

    He should not be at the hospital alone on "the day" and maybe even the next day.  He'll be stressed out.

    Do you have a place near by where he'll stay while you're layed up for 2-weeks?  He'll need to pack for a 2-week trip.  His hospital "go bag" would include his own meds and needs, some cash.  A roll of quarters and $1 bills for vending machines.  An "airplane pillow" for the waiting room might be nice.  

    He cannot be sick and be anywhere near you.  At least initially.  Has he had a flu shot?  Are his vaccinations up to date?

    No idea how far "home" is from the hospital.  How will you manage home while your're both gone?  Figure it out in advance, have a plan, and stress is greatly reduced.

    If he's like me, he'll want to fix everything and be in control.  Problem is that he can't.  You're both just along for the ride.  I'll bet your TX center has social workers or counselors you might both be able to see in advance that could help, too.

    • I believe is it IMPERATIVE she be there! JMHO

  • We got "the call" at around 11:00 on a Saturday night.  We drove an hour and a half to the hospital (It's usually a 2 hour drive, but there was no traffic, and we were in a hurry!).  So, we got to the hospital around 1 AM, and there was a lot of waiting around until I was actually wheeled into surgery at 8:30 AM Sunday morning.  I figured that the best thing I could do for my husband was to demand that he go find a hotel room and get some sleep.  I did NOT want him to wait around for the next 6 hours or so when he could be sleeping.  The hospital assured him that they would call him once I was out of surgery to give him an update.

    That said, why don't you ask him?

  • I am the patient, my wife was the care giver.  I can tell you for me, her company, even if we did not talk, was the one biggest and best thing that she could have done.  She stayed in the same room every night I was in the transplant center - except the night of transplant.  I was in ICU and was not allowed visitors after 10 pm.  She went way above and beyond any expectation I had. 

    I am a liver transplant patient.  I had mild hepatic encephlopathy.  Her being by my side helped me when doctor's visited and explained tests, results, etc.  Post transplant she helped me keep my meds in order.  There are quite a few in the beginning and I had brain fog for the first few days.

    I had difficulty asking for help or for someone to be there.  She just made it all happen.  I am one lucky man.  I was transplanted 10/17/2007. 

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