The morning that Rich received his call will live forever in my memory. It was 2:58
A.M. when the phone rang with the news that transplant time was here. But what is
foremost in my mind about that call is that just a few hours before that, while lying in bed
I had finally come to terms with my faith. Rich was in the other room and I was lying in
bed waiting for him to join me. I said a short prayer aloud saying something like:
“Lord---I don’t want to lose Rich---but he’s ready for this transplant. He’s waited such a
long time, Lord. Rich has put his trust in You and I guess if he can do that then I can too.
I am scared of what all could happen but I know that “Thy will be done”--so I guess
Lord, if there’s a liver out there that is right for Rich--I’m ready to offer up my husband
to You and know that I can deal with whatever happens. “For I can do all things through
Christ, who strengthens me”. Amen.
Tears were rolling and the silence of our room was rather eerie as Rich came into bed. I
tried to conceal my tears but Rich could taste the saline as he kissed me good night. I
told him what I had prayed and had that I had finally offered control over to God. I could
scarcely get through telling him without breaking down again.
That quiet time and that small prayer, I believe, started it all. I often wonder if I had been
able to offer over the control earlier, if Rich’s transplant would have come sooner.
Another time that stands out from Rich’s transplant was during his Intensive Care Unit stay. Rich pulled at tugged at every tube, IV line, monitor and cord that was on him or in
him. Jason was there with me and watched as Rich thrashed about. Jason could not handle seeing Rich like that and asked to go to the hotel room. I stayed with Rich from
the time they let us see him until about 5 A.M. then left to grab a shower and rejuvenate a bit. By the time I got back to the ICU an hour later, Rich had extubated himself (pulled
out the tube that was connected to the ventilator) and was working on pulling out a few more tubes!! Model patient?--NO!
The next few months were a breeze compared to that ICU stay!! Rich healed quickly and talked about how wonderful he felt just weeks after the surgery. One thing that had changed following surgery was his emotional status. Rich was riding an emotional
roller-coaster during his stay in Omaha and still even now tears up easier than he ever did before. I am not certain to what this is attributed.
Last month, a documentary on liver transplant aired on HBO entitled, “The Kindness of Strangers”. Rich watched it when it aired and video taped it for me to watch. He had said that I should grab a few tissues and have them ready because it was a tear-jerker. I watched and had wondered what parts had affected Rich so intensely; several parts in the documentary were quite touching but I found nothing that moved me as much as it did
him.
I have seen many changes come over Rich the past year. He seems to enjoy life more. He enjoys people more. And, by telling others about his experience, he has been able to
help others who are waiting or have family members waiting for that same type of life-giving gift that he received.
We continue to set up Organ Donor booths at our local fair and Rich has even taken part in several public educational sessions in our town. Before transplant, Rich had kind of
an apathetic approach to people going through difficulties in their lives. Now, Rich deals with people with more grace and empathy--having been there himself.
I worked with a gal whose husband had a heart transplant several years ago. His first year following the heart transplant was full of disappointment and troubles both
physically and financially. Her response to me was that if they had known everything that was going to happen, they would not have gone through with it. I’m here to tell you
that I’m glad that Rich had his transplant. He may never be physically fit enough to do the things that he used to do. And, we may never get out of debt from the transplant bills.
But just having him here beside me is what counts.
When first posed with the idea of transplant, I was afraid. It was my contention prior to transplant, that if Rich could live 5 years with his own liver I’d rather have him for that long than risk Rich having the transplant where he could die on the operating table or maybe have a couple
of years with his new liver. I wanted some sort of a GUARANTEE. Silly of me--now that I think of it. Life offers no guarantees!!
One year---wow! To think, it was one year ago that we received the call from the transplant center--the call that could and would change many aspects of our lives forever!
Looking back over the past year, I can see that many things have changed and most have been for the better! Shortly after Rich's transplant we were able to move out of a cramped two bedroom apartment and into a home of our own. We had moved into that little apartment (I have often thought, though never verbalized) solely as a way of easing Rich's mind that I would not be strapped with a home to pay off and a large yard to care for, if anything happened to him. Ahhhh, just having room to move around is so nice!
Rich has gotten back into the workforce. He is no longer able to work with heavy equipment like before but has taken a job at our local grocery store. He is able to work several days a week before the fatigue gets him down. He usually works an average of 5 hour shifts there. It's amazing how much of a people person he has become! Prior to being put on disability and having the transplant, Rich worked solo running road graders and other equipment. Sometimes, the only human contact he had during the workday was via the radio or the occasional passer-by on the roads he was maintaining. It does my heart good to see how much he has grown in this respect.
This biggest thing I have struggled with this past year has been the "what if's"...what if he doesn't make it through the transplant surgery? what if something goes wrong and he doesn't handle the anesthesia? what if his body rejects the new liver? WHAT IF???!!...
Aren't you worried about rejection? What will you do if Rich's body does reject? How have our lives been changed because of the transplant? How are we "really" doing?---just some of the many questions that have been asked over the course of the past year that reinforce the "what if's" in my life.
Well, to tell you the truth--in the back of my mind, I have ALWAYS worried about the possibility of Rich's body rejecting his new liver. Rich, on the other hand, since day one has been confident that nothing was going to happen to him and that this new organ was "perfect". Several trips back to the transplant center sent chills up and down my spine wondering if this was it--was this actual rejection? So far, my worries have been for naught--each trip to Omaha's UNMC proved not to be rejection but to be the re-infiltration of the HCV (hepatitis C virus). Which, while not good, is not as bad as it could be.
Rich had decided even prior to his liver transplant that he would not (in the event that this liver transplant didn't take) choose to be given a second transplant. He has always maintained that he would go under the knife just once and that someone else waiting for a liver deserved a chance as well instead of him having two chances at a new liver. I respect that decision and will abide by his wishes come what may.
People seem to see me as the calm, cool, collected type. Little do they know, that while I'm solid as a rock on the outside--I'm a quivering mass on the inside. Worrying is one of the things I do best. Rich tells me that he doesn't have to worry about anything because I have that covered.
I tell him that I don't necessarily worry about things, I just want to be prepared for anything that might happen!! I prefer things to be nice and neat--well thought out and planned. Things should go according to plan, right?
Perhaps having things go exactly as they should is a bit unrealistic. For instance, if things had gone according to my plans Rich would have had the transplant surgery and we would have lived happily ever after. Here we are one year later and while we are living a very happy life, his Hepatitis C has reared its ugly head again. That wasn't really part of the plan. We knew that there was a very good chance that Rich would develop HCV again in the new liver but I just hadn't planned on it happening so soon after transplant.
Sometimes I feel that my being a nurse is a stumbling-block for me. I think that I should be able to do more for him--take care of him more--be able to rid him of this forsaken virus somehow. The most I am able to do is watch him for side effects of medication, help translate his lab values, and offer moral support. He seems to think that this is enough...but is it? As a nurse, I want to do more....as a wife, I want to do everything that is possible to keep him with me as long as possible.
He is the love of my life and that is why the background song is so special to me. Can you hear it? "You Are The Love Of My Life"..."you are the reason I'm alive"....
Are you dealing with some of the same things? Some times it just helps me to write my thoughts down. This homepage has proven to be rather therapeutic for me. It has allowed me to jot down some of the stuff that I keep bottled up inside. And, when things get really rough, I can go to the page with the pictures of Rich during his ICU time. I can look at where we've been and see that things really could be worse!
If you're dealing with some of the struggles that go along with being a spouse of a HCV victim or a transplant patient and need a shoulder to lean on, drop me an email.