Prednisone: The Good, the Bad and the Ugly

It's been about four weeks since my liver rejection episode and it appears that things are steadily improving. My lab results are trending in the right direction (numbers are falling) and while bilirubin, ALT, AST, GGT, alkaline and the rest are still notably out of range, they are vastly improved from a month ago.

So the waiting game continues, with plenty of medication juggling to compensate for the liver issues and to accommodate changes caused by prednisone, the steroid I'm taking. I can't recall taking steroids in the past, so it's been quite an eye-opener.

Unfortunately, prednisone isn't going to give me a ripped physique. Yet I'm not gaining weight, either, which commonly happens, so I don't mind foregoing the muscles. Here's how prednisone has affected me so far, along with some of its other potential side effects:

Blood sugar - Mine is OUT OF CONTROL. Whether I eat a pint of Ben and Jerry's ice cream or a handful of plain lettuce, my blood sugar can jump to 300+ (or more). I take long-lasting insulin twice a day and short-acting insulin three or four times. I watch what I eat, as before, but need the extra insulin to keep my blood sugar in check.

Blood pressure - Had to increase my blood pressure medication.

Energy - This is a good news/bad news side effect. Steroids give you energy (no wonder athletes like them! however, they take a different type of steroid) and most days I can get more done than I have since my transplant. The flip side of this coin is that I have even more trouble sleeping. The result is that I have several really good days and then I'm wiped out.

Acne - The ridiculous back, shoulder, arm acne. Thankfully, don't have this and pray it doesn't pop up. As I told my transplant coordinator, this side effect could be a deal breaker.

Fluid retention - My ankles and feet have been retaining fluid off and on for a couple of weeks now. My doctor prescribed diuretics, but has pulled me off them due to other issues. Thankfully, the swelling is intermittent and seems to abate without the meds within a day or two.

Mood swings - I've experienced this, too, but thankfully not often. The moods seem to manifest mostly when I'm talking to a customer service rep at my insurance company or online retailer or something of that nature.

There's an informative web page on the Mayo Clinic site that offers a good overview of corticosteroids, including prednisone. It's been a good starting resource for me.

Photo by Patryk Choiński

Sorting it Out

We've entered new and mysterious territory. Preliminary results from Monday's biopsy lead my docs to believe that I'm having a rejection episode. That said, there was a great deal of inflamation and they are waiting for the detailed report they'll receive tomorrow to know better what's happening.

Jaundice is most definitely at play. My eyes seemed a bit clearer Monday and yesterday, but are very yellow again today. A quick liver panel done Monday showed my bilirubin had increased to 11.8 - quite a jump from 7.8 last Thursday.

Current protocol: Steroids. Visiting nurse administered them via IV yesterday and today. Tomorrow I switch to pills. Also hoping for more feedback tomorrow based on detailed lab results.

I'll post more as I learn more. I can't find anything on this topic online, at least as it relates to a timetable this far after transplantation. If anyone else needs the info I hope to help them find it here.

Photo from Cleveland Clinic Journal of Medicine, October 2009

My Liver is Misbehaving

Two days ago I saw the vampires, who drew blood for my regular set of "how's-the-ol'-liver-working?" lab tests. Yesterday afternoon, at nearly 6:00 p.m. on Friday, my transplant coordinator called - and given the timing and knowing she was working late, I knew the news wasn't going to be so great. It wasn't.

Looks as though the supposed Hepatitis C flare-up I had three months ago has recurred. Here were the results for the key labs we track:

Alkaline Phosphate 316
GGT 570
AST 355
ALT 417

AST and ALT are the more critical elements and given that the normal range for both is 0 - 40, my results aren't good news. I need to go to my transplant center next week to have a liver biopsy, so we can find out what's gone awry.

I don't have to throw myself off the roof or anything yet, but I'm worried. The best guess right now is that I might be experiencing some degree of rejection. I'm not familiar with this (I had a rejection episode when I was in ICU after my transplant, but don't remember it - or much of anything else - from that period of time). I now get to learn about the different degrees of rejection and what is done to treat it. I thought if you experienced rejection, the liver simply failed, fell out of your body and you needed a new one so desperately that anyone involved jumped into a helicopter to fly around and look for a liver. Apparently, that only happens on TV.

When you read this post, would you please say a little prayer that my liver settles down and gets back to work? I will be ever so grateful.

Another Email from My Husband While I Was in ICU

Monday, December 18, 2006 2:56 p.m. (sent by Gene)

Dear friends,

Anyone who knows my lovely wife knows that she operates on her own unique sense of time, which is a polite way of saying Jay often runs late. And that may explain why her recovery timetable differs from our expectations. At least that's my theory. But if there's one thing I've learned about Jay... it's to just let her do it her way. Might as well because you know she'll get it done right.

It's been two weeks since Jay underwent surgery, and she remains in ICU. But I think we're finally beginning to make some headway and hope to move to an intermediate care floor any day now. Many of you have expressed concern about Jay's long stay in ICU, but rest assured, she's been in stable condition throughout. She's just been stuck in neutral; every time she begins to get better she runs into some complication that stalls her progress. Fortunately, the doctors have witnessed all of Jay's problems before in other patients, and they've been able to find a fix for them out of their liver transplant "playbook."

Last Wed., the doctors performed a tracheotomy to help Jay breathe more easily. She was having a tough time getting off the ventilator but since the procedure has fared much better. Yesterday, she breathed on her own for 6 - 8 hours without any machine assistance! If she can build up her endurance to go 10 hours on back-to-back days, she'll probably ditch the ventilator for good.

A few days ago, Jay's body also exhibited the first signs of rejection. It's a frightening word but something transplant patients will have to deal with for the rest of their lives. Rejection can occur at any time and it can happen quickly or occur gradually. The good news is that there are several immunosuppressive medicines that should manage this problem. The doctors gave Jay some of these meds and they appear to be working well.

All things considered, Jay seems to be doing better. Her trache tube prevents her from talking out loud, but she's trying desperately to communicate. Much to her dismay, neither the nurses nor I can read her lips very well. One day Jay was really jabbering, and I couldn't make out a single word. I suspected that she was in a drug-induced haze and talking gibberish. So I asked her nurse, "Do you think she's lucid?" And before the nurse could reply, Jay shot me an indignant stare. No translation needed. I'll pay for that comment later!

Thanks for all your love and prayers... God bless,

Gene