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Posted 2/21/2011 3:37 PM (GMT 0)
Mike has his next Pre-Transplant Consultation tomorrow in Miami.

As always, he is anxious to find out what is what.

He has had all the testing and consultations that they required on their 19 point list including cardiac catherization, nephrology consultation, psychaitric evaluation, blood, mris, ultra sounds, xrays, tb test, etc.

And he is sober since September 2010. 

Two of the cancer markers are very elevated and we are both anxoius to see if they know why.

He is having some side effects from two of the meds:  nadalol causing cold cold hands and feet.  aldactone causing enlarging breast tissue that he says is tender.  Not sure those are just things to live with, but will check it out. Anyone have anything on those two?

We don't know if they are going to be bean counters about which day of the month he stopped drinking or if they will only count the days after he started his AA meetings, but that is #1 on our question list...ie when does UNOS get his data?

He is actually doing well, way better than in months and months. No ascites.  More "good days" HE wise (love that xifaxan). Still tired tired tired, but he is more cheerful during his awake periods and actually walked around the block today (and yesterday)...it is a short block for sure! But a block.

We had company last week, a daughter in law and a 5 year old grandchild...and that always makes him happy. they had not been to the Florida house before and the house is much more "normal" when there are kids here. 

The weather was glorious and she went swimming every day.  Kids are great.  The water was cool, but she didn't care.

Best to all.  Keep your fingers crossed that they are counting MONTHS and he can go on the list in MARCH.

Woo Woo

Carol 

Posted 2/21/2011 3:42 PM (GMT 0)
Mike dealt with the breast enlargement... yes they were tender.. they did go down in size after a while.. he used the Bag balm on them... helped... others may have other ideas... Sandi
Posted 2/21/2011 4:20 PM (GMT 0)
My husband also has the breast enlargement and tenderness....He is on aldactone, but I didn't think that was what caused it. I just thought it was gynomastica (spelling?) which was a symptom of cirrhosis?
Posted 2/21/2011 5:12 PM (GMT 0)
I had problems with breasts growing large and tender. I was warned it would happen, before starting the meds. Aldactone was the main problem. At one point, my breasts were so big, I thought about the Jerry Seinfeld bit about manzeers, or a bro. After having a transplant, most of the swelling went away. And I was so wanting to buy some frilly lingerie.

ML, it sounds as if you and Mike are closing in on the transplant list. Congratulations!
Posted 2/21/2011 9:35 PM (GMT 0)
Hi Carol,

Will be keeping you and Mike in positive thought and prayer for a good doctor appt tomorrow.

Is the nadalol for portal hypertension?  My hubby takes propranolol for the PH and his hands and feet are always cold too...but that was even before he started on this med.  I thought the cold was just another one of the symptoms of liver disease.

My hubby has the man-boobs too.  Again, I have read that this is due to the liver disease.  My guy is not on any diruetics, since he has not (and hopefully never) experienced any fluid retention.

Today is day 148 of sobriety.  Congrats to Mike.  I hope they set his "clock" from that date...get you to the 6 months sooner.

Best for your appt tomorrow.  I will be thinking of you.

Emma

 

Posted 2/21/2011 10:51 PM (GMT 0)

In regard to gynecomastia, it is caused by the hormone imbalance in the livers of men with liver disease.  (As a female, I've not noticed any enlargement myself.)  It is also listed as a side effect to Aldactone (again, it hasn't affected me that way.)  So your guys are getting a double whammy if they are also on Aldactone.

Most people with liver disease complain of being cold, though I'm not sure what causes that specifically.  I have Raynaud's, so have had cold hands and feet long before being diagnosed with liver disease.

ML, best of luck tomorrow at the transplant center.  Give us a full rundown when you can.  The weather here is gorgeous, too.  Just hope it lasts.

Hugs,

Connie

Posted 2/21/2011 11:03 PM (GMT 0)
Good luck to you guys - I hope everything goes as planned and he's on his way to transplant.
Posted 2/23/2011 3:20 AM (GMT 0)
So today has been interesting.

Mike had a pre transplant clinic meeting today in Miami. He has been busy with test after test and consultations in preparation for his UNOS listing for liver transplantation. And today was the day, he got the all clear, all systems are GO, he’ll be on the list as soon as they send the paperwork to UNOS.

Woo Woo. : - )
Not so fast. It may be too soon to start the party…

As you may also know, Mike quit drinking last fall when he got really sick. And after several hospitalizations and a bunch of meds, he is doing better, looking better, making better sense. Not WELL, but a heck of a lot better than at death’s door!

So he isn’t going to be at the tippy top of the UNOS list in our area. He has to wait his turn.

Ok, since he is feeling better, he can deal with that. : - |

BUT, they found a small tumor that is almost certainly malignant on the MRI they did last week. : - (

Gosh, he can’t catch a break! Liver cancer? Are they kidding?

New plan: The UM “tumor committee” meets next week to discuss current cases. They will discuss whether the tumor is located in an area where they can perform an “ablation” whereby the tumor can be destroyed in place to give Mike time to work his way up the list again…keep it from spreading.

They will test regularly and keep track of this.

So, IF the radiologist thinks an ablation is possible in the location of Mike’s tumor, which has been described as in a difficult to visualize location, they will do that as day surgery in the next weeks. If not, we’re not sure…move him up the list? Wait? Hope it doesn’t spread it’s cells here and there.

So, tonight we are…exhausted.

To say the least.

Carol
Posted 2/23/2011 4:00 AM (GMT 0)

Carol, as you may or may not know, I had liver cancer...diagnosed in 2005.  The tumor was enormous:  12 cm x 11.5 cm, which took up the entire rt. lobe and had metastasized into the inferior vena cava (major vessel.)  They first did chemoembolization.  Ask them about this if ablation is not a possibility.  They may not be able to do it if the tumor is in a difficult area.  Having a small tumor will add points to his MELD score.  The chemoembolization (in which clips are placed to cut off circulation to the tumor) shrunk my tumor...enough to shrink it back into the rt. lobe.  But they needed to kill it.  This was done with a study drug, TheraSphere (microscopic radioactive beads injected into the tumor), which took some time to get the paperwork completed and me approved for the study.  Thankfully, it worked and killed the tumor, but also all of my rt. lobe, which was removed in May of 2007.  During this wait time, I had the same concerns as you...about it spreading further.  It didn't happen.  I have an MRI with contrast every 6 months, to make sure the tumor has not come back.  So far, so good.

Hep C and cirrhosis patients are at high risk for liver cancer.  I was aware it could happen, but just didn't think it would happen to me.  Well, surprise, surprise!

My thoughts and prayers are with you and Mike.  Just take it one day at a time.

Hugs,

Connie

 

Posted 2/23/2011 4:25 AM (GMT 0)
@Connie: This is great information. Cant' wait for "sleeping beauty" to wake tomorrow to share with him.

He is feeling positive...glad he is ON the LIST...and sees this liver as basically GONE...he just needs NOT to have it spread its little cancer cells about before his turn at bat!

C
Posted 2/23/2011 4:33 AM (GMT 0)
Carol-glad to hear that Mike is on the list and that evaluation went well. I will keep you both in thought and prayer that the tumor is small and will be successfully treated.

Emma
Posted 2/23/2011 6:05 AM (GMT 0)
Carol, I was initially diagnosed with liver cancer at Shands after having a yearly sonogram. I truly think they must have missed it the previous year. I was seen by a GI doc there several times and had an MRI. I never could get an appt. with Oncology and the GI doc told me there was nothing he could do for me. Meanwhile, time was passing. I made the decision to go to Mayo, thank God. They literally saved my life.

So continue to fight! Don't accept that nothing can be done until you have explored every possibility and gotten 2nd and even 3rd opinions.

Hugs,
Connie
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