Waiting

I am sitting in the waiting room at the heart cath lab waiting for my husband to have a heart cath.  We are working on getting him on the transplant list.  They are fast tracking getting him on the list because he is so sick and this is his only hope.  He checked in the hospital last week overnight and had alot of tests made, and something showed up on the heart test, so today they are checking that.  I think if everything is ok with his heart, he will get on the list.  Everything else looked ok, and the doctors are working hard to get him on that list.  They told us that his blood type, A positive, was in his favor because alot of people on the waiting list are B type and there arent that many with A positive waiting for a transplant.  I hope so.  We are both very tired.  Taking care of him is a full time job and I stay tired all the time.  The doctor at the VA told me to call Hospice, but I am just not ready for that.  If he doesn't get on the list, and there is not hope, I guess I will have to have help taking care of him......but that is later.

Hi Parisdr

Mary just got listed Mar 27. We've done our share of waiting. Mary was also told to call hospice and that was 2 years ago. You sound calm and collected and that will serve you well in dealing with what's ahead. You'll get a lot of support and learn from posts about how to deal with liver disease on this forum.

Joan

 

Parisdr,

 

I’m glad everything went well with the heart cath.  I’ll pray that your husband gets listed soon.  This should not only lift his spirits, but yours as well!  It’s a very long road with many hurdles.  Take it one day at a time.  Do what you can to keep it positive.  A positive attitude really makes a difference in such a depressing situation. 

 

Keep hope alive.  Good luck and may God bless you both.

 

Penny

 

Parisdr,

 

Wonderful news!  I’m so glad the University of Kentucky is going to list your husband.  Be patient but vigilant.  You may be able to see the light at the end of the tunnel, but don’t blink.  Remain on point and defend your rights. 

 

Don’t give the doctors the opportunity to take their eye off the ball.  I recommend you bring as many family members as you possibly can to each doctors visit.  A transplant patient with a strong support system is HUGE in the eyes of the transplant team.  Get them to work for you!  Let them know how important your husband is to you and your family.  Force them walk in your shoes and make them feel your pain.  Build a relationship with them that motivates them to want to help you. 

 

As for the surgery, it will take between 6-12 hours depending on your husband’s condition and any complications that may come up.  He will receive blood transfusions during the surgery and probably during the week after.  He will be sedated and placed on a respirator (breathing tube).  An ‘L’ shaped incision will be made from his sternum down to just above the belly-button and around to his right love-handle.  His sick liver will be removed as well as his gall bladder. The new liver will be placed and monitored for function.  Two to three drainage tubes will be installed in the lower abdomen to accommodate fluid drainage.  The incision will be closed and he will spend 2-3 days in critical care until his breathing tube is removed and he can be moved to progressive care.

 

It typically takes 3 months for a patient to return to normal activity.  Much depends on how sick the patient is at the time of transplant.  As far as medication, it starts off very heavy then tapers off as the months pass.  I can honestly say that my husband is taking less pills now than he was before the transplant.  It has been 4 months.  If you want read a blow by blow of what my husband endured and obtain a list of the meds my husband was prescribed after transplant, visit “We Have a Liver”. 

 

You have many sleepless nights ahead but I am confident that you and your husband will get through this ordeal.  Keep the faith and never loose hope.

 

You are in my prayers. 

 

Penny

Have great news.  My husband got a liver!!!!  He was on the transplant list only 6 days when we got the call.  This is one time that being on death's door really paid off. 

 he was in the OR 8 hours on Tuesday and is still in SICU.  T he doctors say he is doing good, but he was in such bad condition that it will take a little longer to recoop than they expected.  They hope to take him off the ventlator today and take 2 of the stomach drains out today.    He looks better each day and yesterday started being really alert.

God does work wonders!!!

parisdr, I am SO happy for your hubby and yourself.  That is amazing that he was on the list such a short time.  He has my prayers for a good recovery.

Hugs,

Connie

That's good news!  May he continue to have a smooth recovery.

Hugs,

Connie

parisdr, I am so very sorry that your husband is having a rough recovery.  It's not unusual for things to go awry after surgery.  It IS a high-risk surgery.  Some take longer than others to recover.  I know that 22 days seems like forever right about now, but it's really not that long.  My recommendation to you is to go to a hotel and get a good night's sleep.  He's in good hands, but you need to take care of yourself.  There is still a rough road ahead and you must take care of yourself in order to handle it.

Please keep us posted.

Hugs,

Connie

I understand your concerns about your husband, but you do need to take care of yourself or you will be burned out before he even gets home.  I know from wives and partners here whose loved ones have come home after transplant that it's a long, hard road even once they get home.  I'm glad to hear you will be home most of today.  Enjoy your grandson's b.d.!!

Paris, about his mental state:  How are his ammonia levels?  Is he being given Lactulose?  Otherwise, it would seem strange for dementia to come on suddenly like that.  I really have no answers for you.  You will just have to take it one day at a time and pray for improvement.

Hugs,

Connie