New to ESLD and scared

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Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 10/11/2017 3:04 PM (GMT -7)   
My PCP just called and gave me my ultrasound results. He said that he is sending the results to my Hep Dr and will be in touch if my treatment plan changes. He said it might not change anything but that he is not a Hep Dr so we should wait to hear back from the Hep Dr. He said my spleen might have been enlarged before but other Drs. just missed it. I copied the complete report below in case anything sticks out to you. I guess my biggest worry is that things are progressively getting worse quickly. My hope has been that this disease progresses slowly and I'm trying to do everything I can to slow it down as much as possible...to steal back as much time as I can.

STUDY: COMPLETE ULTRASOUND OF THE ABDOMEN
CLINICAL INFORMATION: Splenomegaly, cirrhosis
PROCEDURE: Complete ultrasound examination of the abdomen was performed.
COMPARISON: None
FINDINGS:

LIVER: Normal in size and measures 14.8 cm in length along the mid clavicular line. There is mild diffuse coarsening of the hepatic echotexture with mildly heterogeneous echogenicity in a somewhat nodular hepatic contour likely related to cirrhosis. No focal mass. The main portal vein is patent with appropriate direction of flow on color Doppler.

GALLBLADDER: Normal. No gallstones, sludge, or pericholecystic fluid. No wall thickening. No sonographic Murphy sign.

BILE DUCTS: No intrahepatic or extrahepatic bile duct dilation.
Extrahepatic bile duct diameter where visualized: 3 mm

PANCREAS: Visualized portions are unremarkable. Portions of the head and tail are obscured by bowel gas.

KIDNEYS: Normal echogenicity. No hydronephrosis.
Right kidney length: 11.8 cm
Left kidney length: 13.4 cm

SPLEEN: Enlarged.
Length: 19.4 cm

AORTA: Visualized portions are normal in caliber.

INFERIOR VENA CAVA: Visualized portions are normal in caliber.

ASCITES: No upper abdominal ascites.

IMPRESSION:
1. Findings likely related to cirrhosis. No focal hepatic lesions identified at this time.
2. Splenomegaly.
3. No significant ascites.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 10/13/2017 7:04 PM (GMT -7)   
Your ultrasound looks good as can be expected, in my opinion. Normal size of a spleen is 10-12 cm, and yours is 19.4. your liver surface shows likely cirrhosis. But no signs of cancer.. everything else looks good. YAY!!!

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 10/13/2017 8:45 PM (GMT -7)   
Thanks, this put me through the ringer emotionally this week. I didn’t hear anything back from Hep Dr though and it seems like no news means good news. It was the same thing when I learned my platelettes were so low. It scared me a lot but my Drs seemed to think it was “normal” for me. Having a spleen twice as large as normal freaks me out a bit but I guess this is also part of my “new normal”.

I’m still class a. I’m still eating healthy. I’m now 175 days without alcohol. I’m now down to 194#. And I feel better than I have felt in years. I’m looking forward to enjoying the weekend with my kids due to the new perspective I have on life.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 10/25/2017 10:59 AM (GMT -7)   
I am getting my first MRI on Nov 3rd. I believe I am supposed to get them every 6 or 12 months and I believe they are to look for cancer. I’ve never gotten an MRI before. Is this the long tube that they slide you into head first? Any advice on how to prepare for it? I don’t think I’m closterphobic but it does sound scary. Also, I’ve read so many stories about them missing early signs of cancer despite the screenings. Do they really miss a lot of them? Or am I having undue anxiety?

Thanks!

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 10/25/2017 12:29 PM (GMT -7)   
Yeah, you will go into a long tube. It’s noisy more than anything else. I was a little nervous the first time..the technician will be in voice contact with you the whole time.

Mri’s With contrast is the best tool to find masses in your liver. Every 6 months is protocol for those with cirrhosis. If a undefined mass shows up. Your dr will go to a more aggressive search. This is a good way to catch cancer early.

Try to calm your anxiety. Tell yourself, this is just a test to keep you safe.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4800
   Posted 10/25/2017 12:44 PM (GMT -7)   
I agree with ppm guy. The boing boing boinging sounds are weird but not uncomfortable. Test not long. The mri center will confirm beforehand what they require...nothing like a colonoscopy where they have yiu poop yiu brains out the night before.. maybe nothing heavy to eat, I forget. Check with them...

They checked Mikes alpha feto protien each blood test cycle...when that started to rise, they increased the frequency of the scans. It was mire if a hint than a diagnistic xertainty. It goes up when you are pregnant also I think.

Keep us posted .

Hugs

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4800
   Posted 10/25/2017 12:44 PM (GMT -7)   
I agree with ppm guy. The boing boing boinging sounds are weird but not uncomfortable. Test not long. The mri center will confirm beforehand what they require...nothing like a colonoscopy where they have yiu poop yiu brains out the night before.. maybe nothing heavy to eat, I forget. Check with them...

They checked Mikes alpha feto protien each blood test cycle...when that started to rise, they increased the frequency of the scans. It was mire if a hint than a diagnistic xertainty. It goes up when you are pregnant also I think.

Keep us posted .

Hugs

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 10/25/2017 1:10 PM (GMT -7)   
Thanks so much! This is really helping me to calm down.

I appreciate you both so much. You are making a huge difference in my life and I don’t know what I would do without you.

I started freaking out about the possibility of them not being able to find cancer if it is there. I’m sure that happens sometimes but I’m starting to identify just how absurd it is for me to freak out about something like that...one day at a time, cross each bridge if and when I get to it.

Here is a funny positive story...and I apologize up front for over sharing. Believe it or not, with all this fiber I have been eating the last 6 months, my hemorrhoids feel like they are actually completely healed right now. They were crazy bleeding for the past 20 years since high school and now they are healed. I just gotta believe the healthy eating is healing things elsewhere in my body as well.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 10/26/2017 8:18 PM (GMT -7)   
I didn’t realize that you were 6 months alcohol free. That is without a doubt the best move you have made..congrats!!!

I’ve continued my healthy diet, even after curing my hep c. I’m 67, with many issues, and I still feel good. Except when my stenosis flares up.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 10/27/2017 3:29 AM (GMT -7)   
Yes, that is worth celebrating! 6 months without alcohol. I’m working to do a better job taking stock of the positive in my life. Thanks for pointing hat out to me and the congratulations feel great.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 11/7/2017 9:46 AM (GMT -7)   
I had my first MRI on Friday. It wasn't hard at all. It was open at the other end so I didn't feel claustrophobic at all. It was a lot of beeping and holding my breath. They gave me an IV and injected some dye. It freaked me out a little when I got to my car and saw the amount of blood on the bandage from the IV. I guess I was freaking out because of my low platelets. However, it was likely due to the IV not going in great. Actually it hurt a lot going in. I ended up with a nickel amount of blood on the gauze bandage, but it did stop bleeding so that's good.

Then today my Dr. called me back and told me I had no cancer which is good but that I have a blood vessel outpouching. He said it's likely not related and probably not a big deal but is going to check with a radiologist and surgeon just in case.

Ugh, one thing after another.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 11/7/2017 6:42 PM (GMT -7)   
No cancer, excellent!!!

Usually the radiologist makes comments on any abnormalities.
Nice to see your dr is asking for explanation. Let me know what the answer is.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 11/9/2017 10:42 AM (GMT -7)   
STUDY: ENHANCED MR - MRCP OF THE ABDOMEN

CLINICAL INFORMATION:
Age/Gender: 40 years / Male
History: Cirrhosis, undergoing evaluation for hepatocellular carcinoma and portal hypertension.

PROCEDURE:

MRI of the abdomen was performed using a 1.5 Tesla magnet. Sequences include axial T1 weighted in/out of phase images, multiplanar T2 weighted images, diffusion weighted and fat suppressed T1 weighted images obtained before and after IV gadolinium
contrast administration. An MRCP sequence was also performed.

INTRAVENOUS CONTRAST:

13 mL of GADOBENATE DIMEGLUMINE 529 MG/ML IV SOLN.

COMPARISON: 10/11/2017 abdominal ultrasound.

FINDINGS:

LOWER THORAX: Unremarkable.

LIVER: The liver is nodular in contour and there is hypertrophy of the lateral segment, in keeping with cirrhosis. No suspicious hepatic lesion is seen. The hepatic veins and portal veins are patent. There is segmental aneurysmal dilation of the left
portal vein measuring up to 1.5 cm in caliber (series 18 image 22).

BILE DUCTS: No intrahepatic or extrahepatic bile duct dilation.

GALLBLADDER: Normal.

PANCREAS: Normal. No main pancreatic duct dilation.

SPLEEN: Moderate splenomegaly measuring 20.9 cm in craniocaudal dimension. There are Gamna-Gandy bodies in the spleen. No suspicious splenic lesion is noted.

ADRENAL GLANDS: Normal.

KIDNEYS/PROXIMAL URETERS: No hydroureteronephrosis. No suspicious renal mass.

VISUALIZED BOWEL: Nondilated.

PERITONEUM/RETROPERITONEUM: No ascites.

LYMPH NODES: No abdominal lymphadenopathy.

VESSELS: No abdominal aortic aneurysm.

ABDOMINAL WALL: Unremarkable.

BONES: No suspicious osseous lesion.


IMPRESSION:


Cirrhosis and portal hypertension. No suspicious hepatic lesion is seen.

FOCAL_MASS_SUMMARY: {
Liver: {C1: No Mass},
Pancreas: {C1: No Mass},
Kidneys: {C1: No Mass},
Adrenals: {C1: No Mass},
Other: {CX: No Category}

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 39
   Posted 11/9/2017 10:50 AM (GMT -7)   
I just posted my full MRI results. I haven’t yet gotten a call back about the blood vessel outpouching. I did send another email asking for another call to review the results in detail to see if there is a change in my prognosis or treatment plan. I have to admit these test results always freak me out. My wife (who is awesome by the way) is getting a little tired of my emotions. Anyway, I didn’t think I had portal hypertension but now it looks like I do. Maybe I just misunderstood in the past or maybe the ultrasound wasn’t a good enough test to detect it. I also believe I read somewhere that a nodular liver is a sign of pretty advanced Cirrhosis and it looks like I have that. I was under the impression that I was pretty early on with a fibroscan of 15.1 and being class A. Ugh, this is such an emotional rollercoaster, with more downs than ups right now.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1097
   Posted 11/10/2017 12:46 PM (GMT -7)   
your mri looks about the same as your last ultrasound. the extra detail that the mri gives shows the dilation in your portal vein. the radiologist did not list it in his impressions. they are the experts. And your dr is questioning its significance.

portal hypertension is a given with cirrhosis. you will learn a lot in the next year. this will help with your anxiety. your wife sounds great. anxiety doesn't help anything.
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