Changes after Transplant

The need to give up driving and independence is something that we are all going to have to face someday if we are drivers. Shopping and convenience don't matter when safety of self and others is the focus. At 70, that is something that I have to start to be aware of.
However the implication in this FB post was that even young transpant recipients need to be aware of how our medications can affect our response time and seriously affect our driving.

Here is what happened to me several years ago. I was not able to pull into 1 of 3 in-a-row parking spaces. And then I was going to run a red light at an intersection, so my husband had me pull over so he could drive. Next day I called my coordinator and she and I discussed some other symptoms that I was having. She told to me lower my tacrolimus dose and to get my labs drawn along with a prograf kit. Sure enough, my numbers were too high. I guess that is why I encourage patients to call tneir transplant coordinator or team.

I had my license suspended due to my lactulose medication. It was Nov 2016 and I had a few major HE episodes so it was deemed that I should not be on the road. I didn't have it renewed until the end of Aug this year, 2019, when they felt I was ready to get behind the wheel again. That was almost 9 months post transplant. It was tremendously inconvenient but they were right. Any hint of dizziness, loss of concentration or misjudgment and I would have had an accident. I'm glad now as I feel much safer with my driving.

It is something to keep in mind im 60 this year and haven't had a concern except for the few months after transplant. But i do admit im see my eye dr every year and this year i suspect i will need regular glasses besides just for reading. I think my long distance eyesight has been different lately. Like my eyes get more tired quicker.

So, @rosemarya you are O.K. driving now? That must have been scary. I feel so fortunate that even Pre-transplant I never had to stop driving. I knew not to even leave the house when I had an HE episode of any strength, even very mild ones. I think my experience was atypical because I could tell when I was getting one, and when I had one it was like I was an observer of my own irrational behavior.
JK

@danab. I noticed a huge difference in my vision right after turning 40, which I have heard is a common age for changes to start. I had cataracts and the surgery for that replaces the lens in your eye so your vision immediately improves, but the reading vision has continued to get worse. My husband had the most incredible distant vision but he too does not have the eyesight he used to have.

If not for the cataract surgery I wonder how my distant vision would be now.
JK

JK, i hear that term all the time what is a HE episode if you don't mind me asking?

Actually i had cataract surgery in both eyes oh probably 7 or 8 years ago. And yes i had a problem with halos around headlights driving at night. But yes my vision got a lot better after that. But this is somewhat new and im not surprised both my parents wore glasses since childhood so i feel lucky it took this long. But im also going to ask the optometrist about it because i remember him telling me ita possible that the replacement lenses can be an issue which i seem to remember is takin care of with a simple laser procedure so ill find out this week i see him Wednesday.

@danab HE is short for hepatic encephalopathy. HE episodes occur when your liver cannot filter out the toxins due to extensive damage so the toxin, ammonia, goes to your brain causing confusion, irrationality, and various symptoms. I had some mild ones that went away just by taking a good, long nap, but also some more severe ones that required hospitalization. My episodes were fairly distinct, most of the time I was perfectly cognizant, but some people are in an almost constant fog. When people are in a constant fog, or have HE episodes that come on quickly and unpredictably, they can’t drive anymore. I would either wake up with an HE episode or could predict it because I would get a severe stomachache, something I have not heard of others having. I was able to lead my normal life most of the time.
At their most severe they can cause coma and even death.
For me, not being in control of myself was frightening and extremely upsetting. I had it in my mind that if I would firmly resist it I could prevent it, but that is not true.

I have heard that some people do have a second surgery, I had forgotten about that because mine have been fine.
JK

I got my first pair of glasses on my 40th birthday. They were mainly reading glasses as I could see distances quite clearly. Just a bit of personal input.

@contentandwell my first HE episode is what triggered my liver disease diagnosis. I was comatose for a week and in and out of consciousness for the following two weeks. It was touch and go as to whether I would survive it was so severe. After another month in hospital I was on a pretty heavy lactulose regime. I still had HE episodes on and off pretransplant. Some I was hospitalized for and the minor ones I just let take course. I have no memory of about 10 months that I lost. I had no warning signals just full on episodes. So happy that's behind me now.