Symptoms of Rejection

Things not 100% at our house this week.

For the 4th lab in a row, Mike's LFT were elevating out of normal ranges. 

For several weeks his BUN and Creatinin are elevated. And the Alk Phos and GTTP are elevated also, more each time.

His blood sugar continues to be all over the place, often over 300 afternoons and evenings.

He has the runs the last 2 days, though he is eating a pretty good diet...veggies, fruits, lean meats, whole grains (though he gets into the sweets from time to time--I wish he wouldn't).

He has some pain on the lower right side, just above the scar.

He is taking 15 mg prednasone daily, 15 mg prograf.  The pred is down from 25mg, and the prograf is down from 22mg.  His prograf levels are fine.

His strength is good, his mental state is excellent, he is driving, he is cooking, he is helping with the shopping, he is sleeping better.

But they want him at the Center Tues-Thurs next week for lots of labs each day and an Ultra Sound...to take a peek inside and see what's up. They called for a viral load (he still has the Hep C, of course).

No one has said anything about post transplant rejection episodes, so I don't know ANYTHING.  We don't know if this is just a precaution visit, or if something is REALLY wrong.

It seems strange since he feels okay...but the labs give a different picture.

Now the rough part.  His daughter and 3 kids (11, 8 and 5) arrived today to visit from Connecticut.  We will leave them at the house having their summer vacation for the 3 days in Miami.  If something serious is wrong, they can come join us in Miami (125 miles south of here).

So, has anyone any experience with this type of thing?

Carol

Carol-I am sorry to hear that Mike's LFTs are not where they should be.  I will be sending positive thoughts for you both.  Please post when you can and let us know how things are going.

Emma

No fever

Both Hep C and rejection problems are most common early on after a transplant. My surgeon was pleased that my Hep C raised its head over a year later. By then my meds were set and I was stabilized and physically recovered. Don't worry Carol, the docs will figure things out.

Carol-please keep us posted when you are able. Give best to Mike. Lots of prayers and good thoughts from me to you both.

Emma

ML,
Good idea to stick around. Every other time I've been back to MGH, they find something else to test. CT scans seem to lead the list. Tell Mike not to worry, he's sober, he's alive and he has an outstanding wife, who's taking care of him.

Cigarettes and coffee, coffee and cigarettes...that's AA.  It took me awhile, but I did give up smoking.  I very rarely have coffee now...I drink green tea.  But today was one of those days I really needed a large coffee after being at Mayo all day fasting!

If he stays close to his sponsor (who seems very vested in him), Mike should be okay.  Whether he says it or not, I'm sure he's looking forward to that one year chip.

IF there's a problem, the doctors will do everything possible to fix it.  They don't want his new liver to go down the tubes, either. 

People say I'm strong, but really they should be looking at you and saying that.

Praying for you both.

Big hugs,

Connie

We pretty much already had dual (and even triple) addictions.  A lot of the meetings now don't allow smoking.  For several years, they had a "smoking section," but that doesn't work too well in the same room with nonsmokers.  It's rare to find a meeting place these days that ISN'T smoke free...but plenty of smokers outside both before and after meetings.

Hugs,

Connie

Here we are at our home away from home...Springhill Suites in Miami.

Mike has been a bear the past days...worry and steroid rages I think!

At hospital 4 hours today...mostly waiting.

They take 3-4vials of blood twice a week...but today, for a special treat...14 vials~~~  What on earth they are looking for hasn't been disclosed.

His LFT's are again higher...way higher. The rest of the stuff,white/red/crit, bili, etc are in normal ranges.But they cut his prednasone to 20 mgs...Thanks for small favors!!!

Then on to the UltraSound of abdomen:  RX says:  Complications of Liver Transplant...Not comforting!  The tech took forever, redoing sections, hrumping and clucking, though they never tell you anything. Mike felt worried afterwards.

No results to report, but we talked to the Coordinator this evening. They know he is here in Miami so if they need a biopsy (often done with complications) or MRI, etc.  we are here!  Doc will review U/S this evening or tomorrow morning.

Meet with post transplant doc on Thursday morning. I get frustrated with him, becasue he seems like a great scientist,but his English language skills and his bedside mannor were not issued with his VISA. Typical:  "Liver like fine car, very complicated engine...voomvoom. "  We know Mike has a Lexus scar,not a Mercedes...think Logo.  And the best: Take Actigall to keep engine oil running smooth.

Daugher and Grands coming to Miami tomorrow to go the Acquarium if Pop Pop doesn't have a procedure.

We took a ride to Coral Gables this noon time to find a nice place to eat...it is a lovely section.  Traffic beastly, but it is NOT NY or BOS so a piece of cake!

Hope you are all having a lovely evening.

Misstatement above. Prednadone = 10 mg now. Sorry. Woo woo

My doctors gave me prednisone for a week, then it was discontinued. The effects are horrendous. Later on, they told me that they try not to use steroids unless absolutely necessary. I have a friend who had a kidney transplant in San Diego. No prednisone for her. Her doctors felt the same way mine did. If Mike is pissy, I'd guess it's the pred. Is he gaining weight from taking it? See if they'll keep weaning him off of it. Prednisone does damage physically as well.

Carol, I would bet it's the meds and maybe because he's unhappy about this latest turn of events.

David, Prednisone is an evil drug IMO.  If patients read all the warnings and side effects listed in the Physicians Desk Reference (PDR), they would be scared to death to take it.  Based on my own psychotic experience after taking it ONCE,  I'm very leery of taking it.  But since Mayo says they would give it to me if I start rejecting the organ, who am I to say no?  But I hope they have an antidote if I start hallucinating, etc.

Carol, good that he's weaning off of it.

Hugs,

Connie

Returned from Miami, Jackson Memorial, Post Transplant Clinic this afternoon.

Mike's labs show increased LFT's again, and most other labs are rising out of range. They were not excited actually, rather agreed to keep a watchful waiting approach, though they added another anti-rejection med, Cellcept 500mg/day. I have to look up what additional new side effects he can expect.

They increased his blood pressure meds to 75 mg lopressor as his BP on 50mg is running 175/100 ish most days. A bit high for someone on BP meds.

His abdominal ultrasound didn't indicated anything DIRE at this point. They said they were checking for interuptions in flow through veins and ducts, etc. Whew...

It is likely his Hep C has returned with a vengence. Mike didn't clear the virus in 2003. Rather his Viral Load was over 7 Million AFTER treatment. In January, before his transplant his Viral Load was 788,000. Last week's count was a mere 15,500,000. Good Grief.

Maybe they would be more quick to add the Procrit and not let him linger at death's door...last time he had to take a loan to pay for the injections. He is completely tapped out now. So, I think he is better off this time with Medicaid...we have to see...

Ordinarily they do a liver biopsy to see what the Hep C is doing to their nice new liver, but that is on hold during the watchful waiting.

They will add a hepatologist to the team in July.

They are considering another course of the Interferon and Ribavarin and Mike is scared to death of this! He was very ill during his treatment in 2003 and he has just begun to feel a little better post op...he hates to think of both feeling ill again AND potentially not clearning again. It will be up to him, of course, but he'd like to discuss how soon the docs think the new treatement will have a post TX protocol available. He'd like to try something with a higher sustained clearance ratio than 30%!

So, in response to all this confusing news and a 3 day sojourn in Miami, he has taken to his bed...exhausted.

More when there is more.

As always, I appreciate your help and support during difficult times.

Carol