Q & A

Below are common questions I hear most often. I invite you to add any question you may have in the comment box below and I'll add it to the blog post along with an answer.

How long did you have to wait for your transplant? 

From the moment the doctor told me I would  need a liver transplant, to the time I received one was four years; however, from the time I got on the official transplant list to the day I received the call for transplant was 18 months. I was not immediately placed on the transplant list, but through maintenance drugs, frequent labs and doctor visits, I was able to maintain my daily routine and activities within reason. Lab work informed my doctor how to make necessary adjustments in my maintenance medication until adjustment no longer worked and time for transplant neared.

What number were you when you were first placed on the list?

This is the normal question and is also a common misunderstanding of the way in which the transplant list works. Most assume when you are placed on the list, your name is added to the bottom and you climb the list one number at a time until you reach the top. This is a false assumption. You are placed on the transplant list according to need, and move around on the list with the others according to their need. You can go from #50 to #1 overnight. The idea is you need to be sick enough to be on the list, but healthy enough to increase your survival chances during surgery. It's a delicate dance.


Was it hard to get on the list?

One does not have to "try" to get listed. That's all up to your doctors who know when the best time would be to list you. As mentioned previously, the list is not a list as we know it. It is not a systematic climb until your name reaches the top. You are moved around on the list according to need, according to your health at that moment. You may jump from the 'bottom' to the 'top' overnight if your health suddenly worsens.

The process involves an extensive screening that takes almost 2 days. A lot of testing, visiting with the hospital psychologist or social worker, and oh yes, more testing. Not hard, just lengthy and a little uncomfortable at times. Though it was an extensive process, it is necessary. The staff takes their job very seriously when dealing with something as priceless as an organ, and want to make sure it is not wasted on someone who will go out and abuse this precious gift. 

What kind hepatitis did you have?

I learned that the term "hepatitis" means liver disease, or "inflammation of the liver". 'Hepa' meaning liver, and 'itis' meaning inflammation. Most people are familiar with hearing Hepatitis A, B, and C, labeled according to the type of virus attacking the liver. There are others, but these are the common ones. My hepatitis was NOT viral, and was and is NOT contagious. I cannot pass it on. It is my own confused and overactive immune system. The only thing that can be done is to quiet it down, suppressing its ability to fight infection, which in turn leaves me more susceptible to infection.

I also learned that we are basically a very ignorant people (not stupid, just uninformed) when it comes to liver disease. Many automatically associate liver disease (cirrhosis) with alcohol or drug abuse, therefore, I did have to deal with a few of those rumors. It truly is adding insult to injury when we travel down that road when dealing with others. I would encourage everyone to be very careful in attempting to "diagnose" someone else's illness, please.


If you are so suppressed, do you get sick a lot or easily? 

First of all, I AM BLESSED!  I have not fallen to colds and flu during many of the seasons that have come and gone since my transplant. I have had a few, but not like I thought it might be. However, I have noticed that once I have contracted something, whether cold, virus, bacteria, or whatever, it takes longer for me to recover.

Example: Several years ago, our entire family met at a cafeteria that was one of my favorites before my transplant. I loved the salads, and they had a tremendous salad bar. When we finished, my sister and I decided to visit the dessert bar. She loaded up on something that looked like foam, and I got my usual bread pudding, my favorite. She insisted I try her yummy foam, so I took a few bites, but wasn't impressed. :)

By the next day, neither of us was feeling well. We decided to compare our meal, and as it turned out, the only thing we ate in common was the foamy dessert. She was sick for a couple days, I was sick for three weeks, spending nearly one week in the hospital, with a severe bacterial infection in my intestines.

Therefore, along with being more careful during cold and flu season, I am also careful about what I eat, staying away from raw eggs used in desserts, raw fish, sometimes poultry type salads, depending on where we are. I trust family get-togethers and church potluck over restaurants.  I wash my hands often, do not drink after others, and stay away from water fountains unless they provide cups.


How long did it take to recover?

Recovery from the transplant was amazingly rapid. More rapid than I imagined. What I remember first about the immediate recovery was in the Intensive Care Unit. On the second or third day (can't remember), they began to remove tubes and lines, and set me up to brush my teeth, eat and so forth. But recalling the moment I brushed my teeth for the first time following surgery amazed me. I remember feeling as though my teeth were NOT going to fall out. They felt solid and I was no longer spitting blood when I brushed.

Following that was just a day by day strengthening and adjusting to new medications, while getting used to feeling "whole" again. Even though I was weak from surgery, I felt a wholeness, an energy, a clarity that I had not felt in a very long time. As they say, "I didn't really realize how sick I was."  My lack of energy was not my age, it was my liver. I was sick. I was dying.  NOW I'M ALIVE!!

But after leaving the hospital, I stayed in an Extended Stay facility for 6 weeks until it was "safe" for me to return home. Frequent labs and visits were routine for several months, until doctors were comfortable with my progress. Because I was autoimmune, they considered me a high risk for rejection, simply because my own system was in rebellion against my own system. But truly, within a few months, I felt stronger than I had in years and resumed my activities with a renewed energy and strength.

Have you ever had a rejection?

Yes, I've had three in fact. The first one is what they called "to be expected" and came about four days after surgery. After a few adjustments, recovery began again.

The second came three months after surgery, in November during flu season. I had come down with the flu, which in turn caused my immune system to "rev up" (just like yours does when you are sick). But when my immune system "revs up", it gets confused and fights to destroy not only any flu virus, but my body and my new liver. Rejection was a mild case and I spent 4 days in the hospital on steroids, and in fact, left the hospital and drove to a high school football game in which the kids were involved.

However, my third rejection would not be so easy. The following year, as flu season neared, my transplant doctor suggested I get the flu shot to prevent another episode like the year before. I went to our local county health center as they administered free flu shots; my first flu shot ever. Within a week, I was very, very sick. I thought I had just gotten a bad case of the flu, but as per doctors orders, obediently drove to get blood work done. Within an hour of returning home, I received a phone call from my transplant nurse, telling me I needed to get to the hospital IMMEDIATELY.  I was in full-blown rejection. We would learn later it was the flu shot  (or an antibody or some component in the flu shot) that caused my immune system to go crazy and violently attack my liver. This incident was actually worse than the original transplant, and recovery was much, much longer. I spent nearly 6 weeks in the hospital, and it took another year and a half before I truly felt as though I was back to "myself".

No more flu shots!


Are you cured now?

Yes and no! While they replaced my diseased liver with a new liver, they could not, nor can they, replace my immune system. Autoimmune Hepatitis has its own set of issues simply because you cannot remove the source of attack. Therefore, immunosuppression (aka, anti-rejection) medications stifle my immune system enough to protect not only my liver, but other organs as well.


Do you know who your donor was, or have you met your donor family?

I wish I did. Donors are given any information for which they may ask regarding their loved ones organs, however, no information regarding donors is released to the recipients. Recipients are invited to write letters to their donor family to begin that relationship. If the donor family desires to make a connection with the recipients of their loved one's organs, they do so by going back through an organization set up to connect those families. 

I wrote a letter the first year . . . no response. I wrote again the following year . . . no response. I waited five years to write again . . .  still no response.  So I stopped writing. I decided it must simply be too painful for the family, or there was some other issue I didn't understand. That's okay. I am forever thankful and keep them in my prayers.


Did you have to wait for the right match?

For liver transplants, the only requirements are that the donor and recipient need to be approximately the same size, and of compatible blood types. For me, a Type O Pos., I required Type O blood. There is a saying, Type O blood is generous givers but stingy receivers. O Neg. can be given to every blood type. But Type O blood requires Type O transfusions.  

Has your life changed much after transplant? Do you have a strict diet?

Not really. I was told I could not eat raw eggs or raw oysters on the half shell. I did not eat those prior to surgery, so that was of no concern to me.  My diet has not changed that much, at least not in a restrictive way. During my illness, beef was so difficult for my liver to metabolize, leaving me with not so pleasant outcomes. Today, I am not a huge beef fan, nor do I like to combine beef and cheese. For some reason, it disgusts me. It seems like so much FAT.  I prefer chicken and fish, but really always have. I always said I could easily be a vegetarian, as I love me some fruit and veggies.

I also was told not to swim in lakes because of the occasional bacteria and other things that tend to float in lakes, and to make sure and cover with sunscreen when outdoors for extended amounts of time. Again, I was never a fan of "the lake".  I enjoyed it some in my younger years, but am far too spoiled to air conditioning and soft beds, therefore camping is at the bottom of my enjoyment list. If I swim, I like to "see my feet". I don't like them dangling down where I can't see what's about to nibble on them. :)

Because my system is suppressed, I am at a higher risk for skin cancer, therefore, that is the reason I need to be cautious with the amount of time I spend in the sun, especially unprotected. 


Did you have any weird food cravings or changes after transplant? 

I have shared with several of what I thought was the oddest change after surgery.  Though I didn't (and still don't) drink a lot of pop, when I did, I drank Dr. Pepper. (never diet Dr. Pepper).  I like the real stuff. But oddly, after surgery, I craved Pepsi.  I did not return to Dr. Pepper for a couple years. 

As mentioned above, I developed an aversion to cheese, especially on hamburgers or sandwiches. Not sure what that was about, other than if just seemed to load it with FAT.  However, I like cheese on pizza, in queso dip, nachos, casseroles, etc.  Weird, I know.

Are your medications expensive? 

Yes, however, we have always been on group insurance through my husband's work. Therefore, medication that would have cost in the thousands cost me no more than $50 at the highest and $30 at the cheapest. Additionally, two of my immunosuppressing medications were finally moved to the generic list, so they became even cheaper if I chose to use those. I am far enough out now that my doctor allows me to use the generics. I was not allowed to at first. 

Now, there was a moment when we were in between jobs and insurance companies, and we learned that one medication (not associated with liver meds) was not covered completely by the new insurance. So I got online and began to search for ways to bypass this roadblock and found it in a company called MedLink.
They helped me to receive a medicine that would have cost me $600 a month for FREE. Check them out. Tell them I sent you. :)  You'll love them. Christian family who decided to help others with their medications.

I would also like to add that should you EVER have difficulty in affording your medications, PLEASE let the hospital and your doctor know. They also have access to medicine to assist you. DO NOT DISCONTINUE YOUR IMMUNOSUPPRESSION FOR ANY REASON. I visited with an individual a few years ago who quit taking his Rapamune because he could no longer afford it. Within one week, he was in severe rejection, and in a matter of a few more weeks, he was gone. The damage was too much and he could not recover. So, PLEASE, know there ARE ways to get your medicines taken care of. Always stay in touch with your doctor.