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Ruby Magnolia
Member
Username: Dara

Post Number: 1
Registered: 11-2014
Posted on Sunday, November 09, 2014 - 08:57 pm:   Edit Post Delete Post Print Post

Hi all,
My husband had a liver transplant just 5 weeks ago. I am a mess. He did great, was not ill at all when we learned he developed a tumor related to hepatitis C. We never would have known but his doctor ordered a sonogram and there it was. This was a year ago, and we have been on such a scary ride since then.
I just wonder, is it something about me, or do spouses become this anxious, bereft, terrified?? I keep feeling there may just be something about me that I didn't realize, I have been so sad and anxious.
I am also a nurse and have been directing most of my husbands care, he's been an amazing patient, very strong, and never complains.
There are little complications that startle me so.. the labs fluctuating make me terrified of rejection.
I appreciate anyone sharing their experience. My greatest empathy to those going through all of this..
Diane L.
Member
Username: Diane_l

Post Number: 705
Registered: 12-2011


Posted on Monday, November 10, 2014 - 01:23 am:   Edit Post Delete Post Print Post

Dear Ruby,

I am also a nurse and had a liver transplant 6 years ago right now secondary to a viral infection. It was a very scary time, and at the beginning watching my lab work bounce around and not really knowing what was normal. When you have never been exposed to the Transplant world it is a frightening and over whelming journey both for the patient and the caregiver. I don't think it really hit me for 2 years all that I had been through.
I have actually done really well though.

But I think it is also very hard on caregivers. For one thing, people tend to ask the Transplanted person how they are, and not so many are sensitive enough to know what the caregiver spouse is going through. Honestly Ruby, I think it is almost more frightening for a nurse, because you know in more depth than most about the complications. I am sure that you must feel quite helpless at times. As the Transplant patient I was quite nervous too, worrying about getting an infection, but within 6 months I got quite used to
the extra care that we must go through to avoid infection. It becomes 2nd nature, and you soon learn to just integrate these things into your life style.

I hope that you can also get all the support that you need. People who realize how stressful this is on you as well. I saw my partner going through all of these feelings too.

I think within a few weeks to months you will begin to relax into a new slightly modified life. People on this forum are very supportive and happy to pass on their thoughts and experiences.

Take good care. Ruby.

Diane
Diane Lewis
Liver Transplant
Vancouver General Hospital
November 20, 2008
Steve
Member
Username: Stixsteve

Post Number: 4
Registered: 11-2014
Posted on Wednesday, November 12, 2014 - 02:19 am:   Edit Post Delete Post Print Post

Hi Ruby,
As the spouse of an almost 6 year kidney transplant guy, as well as some medical education and we were newly married when he got sick and transplanted within a year, I know how very scary it can be. We had just found this new life together and had our kids raised and doing well and we had so many plans. Then suddenly, life dramatically changed. Steve went from "you'll probably never need a transplant" to he got sick and put on the transplant list in 4 short months and we had to find a living donor because of his heart issues. I was a match but contracted my first septic infection that took me off the donor possibility. We were blessed to have a living donor that also happens to live next door to us.
I was so focused on what my purpose was, which was to be his advocate and learn everything so I could be ready to handle whatever came our way. He looked to me to understand what he didn't and carry that weight, while he saw his purpose to stay as active as he could and never complained. When he came home from the hospital I took on all the jobs of keeping his weekly meds filled, filling out his daily log, and everything else medical. He happily allowed me to do it for him. It got to a point that when we would go to his nephrologist she would jokingly tell Steve I'll say hi to you but I want to talk to Lynn, she can answer my questions. I carried the load of the fears and reality of the possibilities of all the bad things that could happen and protected him.
Then two years later he had to have his third open heart surgery and we were told it might cost us his kidney but without it it would cost his life very quickly. I couldn't protect him from that and I felt so helpless I could hardly breathe. Our faith saw us thru, but very soon after I had medical issues so serious I could not even take care of his meds for him and in fact he had to care for me. So from my hospital bed I would talk on the phone to him and go thru his med list. We lived an hour from the hospital and I did not want him visiting and getting exposed to tons of germs more than I wanted him by my side.
Well, from there we learned I could not do it all for him. Now, I no longer fill his med containers, he has a list and follows it. We go over it and make a new one every time it changes. I now can only tell him when his phosphorus is low to drink more milk or have him up his magnesium when it drops because I am still not able to be up and preparing our meals or much else. He will now take on changing course when necessary. I will say I am the researcher and continue to spearhead his medical visits and he so appreciates that. To him I was the one who saved his life and gave him purpose. I see it as just the opposite. Maybe the fact that while he was the "sick" one I am the one that has struggled to live thru serious infections, surgeries (more than 18 since our marriage), and a major car wreck I should not have survived. We have come to terms with the fact that we really are fooling ourselves when we think we have control over the outcome. We can only do what is put before us and trust for the rest. Each day is an opportunity to do what we can for one another and way more than that we are filled with Joy and gratitude for each day we are given with each other.
I think as Diane above said you will soon integrate this into your life and learn to manage. I do hope you have support around you and while it may not be anyone who has experienced what you are going thru they can still help. Another thing we did was we and our donor went to transplant support groups put on by our transplant team and speak to upcoming transplant patients and talking to others who were where we were. Now, life with a transplant patient seems like a normal life just with added precautions and now since my accident and having lost my spleen, contracting MRSA and autoimmune issues we both live carefully but not consumed with the what ifs.
I hope and pray you soon find your peace and lose the fear that hinders. We always have to have caution but fear can do us in. I know easier said than done but I believe you will get there. Sometimes you just need to give yourself a break and grieve for the life you will no longer have but, hold out expectations for a new life you may get.

My best wishes to you,
Lynn
Ruby Magnolia
Member
Username: Dara

Post Number: 2
Registered: 11-2014
Posted on Wednesday, November 12, 2014 - 06:05 am:   Edit Post Delete Post Print Post

Thank you for your replies. So many emotions it's just huge. I am trying to look at the bigger picture of life and that's a big job! Will continue to seek support and accept the things we can not change. Best to all.

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