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Almost 2 years post transplant

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Posted 4/10/2013 7:15 PM (GMT 0)
Mike has one of his every 4 months check ups this week:

     Hepatology

     Cardiology

     Oncology (which is really next week)

Got Cardiology out of the way today.  He has aortic stenosis...the valve at the aorta is partially calcified....and failing.  But not enough to warrant surgery YET. They will check him in 6 months again. If he were to have syncope (fainting spells), he has to come in early.  They reduced his blood pressure doses again.  It is like, maybe, they are over medicating him. They took a bunch of blood tests to see if there are some other reasons than the blood pressure or Hep C that might be with Mike. 

Off to Hep tomorrow.

We are in Miami and took a ride to Key Biscayne for lunch.

Hugs,

Carol

 

Posted 4/10/2013 8:25 PM (GMT 0)
Key Biscayne is lovely. I used to go to an outdoor bar on Key Largo called Alabama Jacks...back in my drinking days. The Miami Seaquarium is also on Key Biscayne. Maybe you can go sometime while you're down there.

Hugs,
Connie
Posted 4/10/2013 8:59 PM (GMT 0)
Took Mike's grandkids there once. They had fun! It was kinda hokey after SeaWorld in Orlando, but the kids didn't notice!
Posted 4/11/2013 12:00 AM (GMT 0)
I've never been to Sea World, though my daughter and grandkids have.

When I get back tomorrow evening, I'll be looking for your report on the hep visit!

Hugs,
Connie
Posted 4/11/2013 1:46 AM (GMT 0)
ML-
I'm rooting for Mike. I've had a couple of setbacks (post transplant), but so far have gotten through them. When Mike and Connie have had to deal with problems after transplant, I feel like posting about how I'm doing is akin to boasting. I remember how sick I was before the transplant and it seems like it was light years ago. Bad phone calls for 9 years are fading, though taking good health for granted is not what I expect. I expect nothing, and know that everyday that things are good, is a gift.
Posted 4/11/2013 1:53 AM (GMT 0)
Carol,
Will be keeping Mike (and you too) in good thoughts. Hope that all goes well.
Emma
Posted 4/11/2013 2:35 AM (GMT 0)
I wish the best for Mike and you Carol.

I was down that way like 5 years ago. Enjoy the time there! Did you see Shamu lol.
Posted 4/11/2013 2:50 AM (GMT 0)
When I first came to this forum, most folks were DEALING with liver disease. Few had been through the transplant process.  It was more a liver disease site than a transplant site. In the last 2 years, there have been a boat lot of folks who found themselves with End State Liver Disease who have and have not elected to pursue the transplantation choice.

We have lost many folks...mostly folks who didn't make it to transplant or folks who elected not to take the transplant option...they were already too sick, they didn't make it thorough until a donor was available, they did not quit drinking alcohol in time, or they choose not to pursue the transplant alternative for their own reasons.

What we have not had, and it is not lost on this poster....is LOSING ANY of our transplanted folks. They have setbacks and problems, but so far, they have persevered.  Still here, year after amazing year...overcoming one problem after another.

I take great hope in that as Mike faces one thing after another...bravely. 

Nite folks, we are tired.

Carol

Posted 4/11/2013 7:27 PM (GMT 0)
Just back from Jackson. Lots to report.

They revisited his 6 month ago biopsy....feel rejection under control. They never told us that there was no fibrosis, stage 0. Or I forgot. That's good. His Hep C viral Load is just under 8 Million.

Kidneys still not where they'd like for them to be to do Hep C treatment. So they have reduced prograf to 1 and .5mg. And re-turned to 250 and 250 of Cellcept daily. Bloods every 2 weeks for a while. This is mostly in response to Mikes tremors which are really bad.

They want twice a year nephrology consults and it has been over 6 months. Medicaid won't pay for the nephrologist at the center, so we have to find someone who takes Medicaid locally to keep an eye on that twice a year.

The local oncologist had a 4 month MRI done of liver and the liver looks good, but there are bile duct issues. Transplant wants us to get a local GI to do an MRCP or ERCP...I have to look that up....special MRI type test of the ducts. We have no local GI doc, so that is another challenge....with the insurance. The docs don't want to be bothered with the red tape..and Medicaid has LOTS of red tape. Medicaid only pays up to $1500 a year for hospital based services. I think Transplant does some kind of special dance to get their services covered at all! I'm afraid to ask and we keep coming to the appointments.

And Mike has intermittent black stools and chronic anemia, so again, we need the GI doc to look for where he is bleeding. He had a colonoscopy recently that was clear, but he needs an endoscopy and may need an enteroscopy as well (small bowel).

Mike says he needs a sweatshirt that says: "Specimen" on the back and "POKE HERE" on the front.

He had three separate blood draws yesterday...looking for something in his blood that is messing with his clotting. Not sure what that is about...von wellenbrand factor??? Yet another thing to look up.

This was all SO much, that I need to settle with all this input a bit before I try to wrap my head around what to do first...and how urgently it needs to be done.

We go back to Transplant in 3 months, so all this should be done by then I think.

The last two Hep visits have been with a new doc...who we like a lot. Mike joked today...at U Miami, it is a WORLD hospital. And this was our first American doctor in a long long time. Our other specialists are from Columbia, Argentina, India, Japan, Venezuela, etc. It is like a United Nations meeting every day.

Nap time.

Carol
Posted 4/11/2013 7:59 PM (GMT 0)
Apparently my post was not liked, lol.

Carol,

I was responding to let you know I have had an MRCP, EUS and ERCP. The MRCP is just a MRI with contrast, they can see the flow of bile and see if there are problems with the bile duct. My doctor said he believes this should be a standard test for everyone with liver issues because it can easily show bile duct obstructions.

The ERCP is usually done in combination with an EUS, which is just an ultrasound from inside the stomach. They usually look for obstructions, lack of flow, cysts, tumors, stones. You will probably have the flap, not sure what it is called, that goes from the bile duct to stomach cut off because it allows easier access my doctor said for the ERCP.

After the ultra sound they do the ERCP, Endoscopic retrograde cholangiopancreatography . The ERCP is when they stick an electrode in with a camera. They can do biopsies, drag the duct to clean it of sludge, remove stones. They also look for inflammation, dialated ducts. If they see this they will most likely insert 1 or 2 plastic stents. This will help improve flow straighten all that stuff out.

I have 2 10cm stents going from pancreas and liver to stomach. For me it probably saved my life, its amazing what they can do these days. I was on a liquid diet for about 5 days after. I was a little sore though because I have a huge cyst that has formed on my duct, so I was getting spasms. Overall it was very well tolerated. He will be put out completely for the EUS and ERCP. If he moves at all he could get a bout with pancreatitis. I have never had it, and hope to never have it as I hear it is extremely painful.

It is a relatively quick procedure, it took 2 hours my first time due to biopsies and the trouble they had opening my duct. I also had to be there all day getting transfusions because my INR was in the mid 2's. My doctor was not letting me go home without having the procedure, he said I was heading in a direction that I would not be able to come back from if he did not do it then.

I have my next ERCP on Tuesday morning at 9 am. He told me this time it will take 20 min, he takes out the old stents and puts 2 new ones in. I will be home by 1pm he said since my numbers are back to normal.

If you have any questions let me know.

SyXx
Posted 4/11/2013 8:08 PM (GMT 0)
Carol,

Just a note on the syncope. I was having near-syncope and syncope 10 years ago. I didn't do anything about it for a while and then while having routine EKG during a checkup, I was found to be in A-fib and was taken to the ER.

Make a long story short, I went on an experimental drug to control the A-fib (tachycardia), this required 3 day hospitalization and 10 years later it's still keeping me regulated, no syncope. This drug took the place of having an ablation done to tweak the electrical cardiac activity.

Glad you're keeping and eye on the black stools, and hope he keeps a positive outlook in light of all he has been through. It sure is exhausting for the caregiver too, as you know. Also, nice that you really like his new doc.

Hang in there!

Ciao for now
Posted 4/11/2013 11:21 PM (GMT 0)
Carol, more will be known after the ERCP.

Mae, A-fib is atrial fibrillation. Tachycardia is rapid heart beat. Not the same animal, though a person can have both at the same time.

Hugs,
Connie
Posted 4/11/2013 11:32 PM (GMT 0)
Connie,

I know they are not the same, tachycardia is one symptom of A-Fib. The reason I put tachycardia in parenthesis was to indicate that in MY case, it resulted in FAST rate (tachycardia), as opposed to slow or irregular:

This from NIH

"What Is Atrial Fibrillation?
Atrial fibrillation (A-tre-al fi-bri-LA-shun), or AF, is the most common type of arrhythmia (ah-RITH-me-ah). An arrhythmia is a problem with the rate or rhythm of the heartbeat. During an arrhythmia, the heart can beat too fast, too slow, or with an irregular rhythm.

AF occurs if rapid, disorganized electrical signals cause the heart's two upper chambers—called the atria (AY-tree-uh)—to fibrillate. The term "fibrillate" means to contract very fast and irregularly."

Palpitations and/or syncope (fainting) or near syncope, are two of the symptoms of A-Fib.

Mae

Post Edited (Mae be here) : 4/11/2013 5:47:21 PM (GMT-6)

Posted 4/12/2013 12:43 AM (GMT 0)
Thanks for the explanation, Mae.

Hugs,
Connie
Posted 4/12/2013 1:57 PM (GMT 0)
Carol, how did Mike fare at the Hep doc's appointment yesterday?
Posted 4/12/2013 2:24 PM (GMT 0)
I posted late yesterday...a lot to take in.

The hard part here is that he is on Medicaid now....he used all his savings buying private insurance. When he was turned down for disability and early Medicare, it was his only choice. Those with chronic liver disease can go through all their savings and then really be in a fix. He thought he was all set for his "retirement" but he was NOT prepared for THIS.

We are searching for local FU with nephrology and gastroenterology as they can't do that at Jackson any more. The poor kidney function makes Mike ineligible for Hep C treatment, so he waits and hopes that the new treatments in the pipeline will be available before his liver starts downhill. We are on shakey ground with cardiology and hepatology and pray that we keep getting that approved by some fancy bookkeeping...but who knows how long that will last until some clerk realizes he is getting more than $1500 of care a year in a hospital based setting and he is tossed on his ear for those services also. These transplant folks can use up $1500 in ONE DAY.

Mike gets Medicare starting November 2014 and he cannot wait. We are secretely hoping his heart valve waits until then to need replacing because we will have so many more options for his care...

We learned yesterday that as of his last liver biopsy there was no fibrosis...so Stage 0...woo hoo.

His MRI shows some blockage in bile ducts so he needs additional testing. Making calls this morning to find GI and nephrology docs that take Medicaid. Once you get through the paperwork we have found nice doctors and technicians who do their best...though the care is often in sad neighborhoods, in clinic environments....the folks committed to community health are very dedicated and have learned to do more with less. Lots less. His primary care doc is very nice and is quick to refer him out...the hard part is we go and wait a long time in a freezing sad waiting room and she can't get us out of her treatment room fast enough when it is our turn....as she can't DO anything for his complicated case and it just the process that is taking up her time...too bad she cant just take a phone call from us and be done with it. Note to all: this is our future...wait wait wait and then get 5 seconds of attention...then wait wait wait for the specialist referral.

Best,
Carol
Posted 4/12/2013 10:32 PM (GMT 0)
Carol, there's good news in there, amid the financial woes. It's too bad that Mike (or you) weren't aware of the indigent drug programs.

I read the other day that Medicare will no longer pay for chemo drugs. How can they do that? That's peoples' lives that are at stake!

Hugs,
Connie
Posted 4/13/2013 12:43 AM (GMT 0)
     hey guys,    my wife is doing chemo and radiation.  i checked medicare and my supplemental insurance. the medicare 2013 manual, part B covers 80% of chemo cost if you are an outpatient.  if you are in a hospital, part A covers the cost.

     i was on top of the world monday with my followup.  then yesterday we got the results of her 6 month followup and the cancer is back

                        barry

Posted 4/13/2013 1:34 AM (GMT 0)
Sorry to hear about your wife Barry. Stay positive.
Posted 4/13/2013 2:15 AM (GMT 0)
It never ends...
Posted 4/13/2013 2:53 AM (GMT 0)
Very sorry about your wife Barry, hope she has lots more fight in her! Such a roller-coaster you are on, jeez. Keep us posted please.


Carol,

Out of all your trials and tribulations, I plucked out the "there is NO fibrosis" and will stick with that good news as it is a huge victory in itself :)

The financial part sounds like a nightmare, and dealing with medicare is a full time job I hear. My retired cousin is a volunteer to help folks through the minutiae of the system. If there's any way you think he could help I would be happy to call him or ask him to call you.

Wishing you all a peaceful weekend.
Posted 4/13/2013 1:20 PM (GMT 0)
Until we see Oncologist I'm not going to say anything about the AFP lab result to Mike.  He is in a good mood for once, glad he isn't having open heart surgery this month.  Taking encouragement from the no fibrosis reading of biopsy.

And found the quote below on Johns Hopkins site:

Alpha-Fetoprotein (AFP)
Alpha-fetoprotein levels may be assessed by a blood test. Alpha-fetoprotein (AFP) is a tumor marker that is elevated in 60–70% of patients with hepatocellular carcinoma. Normally, levels of AFP are below 10 ng/ml, but marginal elevations (10–100) are common in patients with chronic hepatitis. However, all patients with elevated AFP should be screened (abdominal ultrasound, CT scan or MRI) for hepatocellular carcinoma, especially if there has been an increase from baseline levels. In our experience, a steadily rising AFP is almost diagnostic of hepatocellular carcinoma. The specificity of AFP is very high when the levels are above 400 ng/ml.

 
 

Posted 4/13/2013 6:44 PM (GMT 0)
Barry, I am so very sorry about your wife's cancer returning. Is it HCC?

The Medicare cuts will not take place until 2014, when Obamacare is initiated. Hopefully, some of the cuts will be changed.

ML, thanks for that AFP info. Yes, it could just be the hep C running rampant, but I'm thinking of previous bouts with HCC and it's the same pattern. But my TC didn't call me.

Hugs,
Connie
Posted 4/13/2013 8:59 PM (GMT 0)
           the original dx was uterene and cervical cancer, early stage. they did full hysterectomy and took 28 lymph nodes from surrounding areas.  the final pathology report said "all nodes were benign".  at 6months post a ct scan showed a small mass about 1 cm, and again early stage.  the radiologist said the tumor is well defined, so they want to start radiation by the 1st of may. oh! the tumor was found on the vaginal lining. 

          geez!! obamacare was suppose to make all 1st line of defense covered. 

                             barry

Posted 4/13/2013 10:06 PM (GMT 0)
Thanks for the explanation, Barry. Good that they found it early. I wish they would develop a drug that would prevent recurrences of cancer.

Hugs,
Connie
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