I put this on the website to make it easier to share with anyone else whether they want to contribute to the research or just want an update.
Known Information About Steve And Actual Test Results:
- Never been overweight or obese.
- Never been an alcoholic or abused alcohol.
- Does not have Hepatitis.
- Always exercised and had a healthy diet.
- Always had “low heart rate” (30’s to 50’s bpm)
- Has left heart “bundle branch block”
- Sails in Caribbean 4-6 months out of the year and wife has had Parasite previously.
Still Waiting On These Tests or Procedures:
- Full parasite test (not just FL) – (run by Advent – Dr. Narula) – Never got results.
- Liver Biopsy (through neck) – Performed at Mayo, Jax on June 17. Waiting on biopsiy results
- Liver Tests & Procedures:
- (Updated) – Auto-Immune tests came in and they were negative (run by Advent – Dr. Narula)
- Electro Cardiogram (tentatively shelved until after we find cause of bleeding).
- High Contrast CT (6/7 – see results below)
- Endoscopy (6/7 – see results below)
From The Beginning
April 2018 – Steve starts having intense abdominal pain in stomach and back. He was not eating much with the pain and digestive problems and when he started losing a lot of weight. Originally around 165lbs.
Once home, Steve still had pain but also significant constipation. Even after days and days of trying to relieve constipation with prunes, supplements, etc it was not resolving easily.
Once home from boat trip, Steve sees his GP (Dr. Briles) who did a CT Scan, MRI and labs and the tech doing the CT scan found a “mass” on Steve’s pancreas that they believed was Pancreatic cancer. Steve was referred to Moffit and had an appointment the next week. CT also showed a slightly fatty liver.
Mid June: At Moffit. Ran CT and Labs. CT Scan they saw masses around Celiac and Pancreas. High pancreatic enzymes and high tumor markers.
EUS earlly July: Moffitt went in to do biopsy but did not see anything and decided not to biopsy the pancreas. Took tissue samples of Stomach, Esophagus, and Duodenum. Everything came back negative.
July: Went in to do a biopsy of Pancreas via a Guided Needle Biopsy procedure and ” Could not obtain a large enough sample, did not suspect cancer” to biopsy so took some other tissue samples and tested. All Negative. Moffit said “No pancreatic cancer, come back in 3 months”.Weight in 140’s.
- Entire time from June 2018 to June 2019 no improvement in bowel function. Constipation switch to diarrhea mid to lat August 2018, and outside of limited improvement with 1-2 Immodium per day (when it worked), diarrhea has continued to this date.
Late October: Back at Moffit, they thought Steve had cancer again (high cancer markers and enzymes) and another CT , and said they had to biopsy the pancreatic cyst. Placed order – 2 months out “real urgency”. If they could not obtain a biopsy via the second EUS, they woud have to cut me open. We wanted another opinion.
November 2018 – Saw Dr. Rosemurgy, Advent GI Team, and he recommended immediate biopsy via EUS with Dr. Harris. Dr. Harris did biopsy very nexy day and took9 samples of the pancreatic cysts. No cancer and cysts were negative.
January 2019 – Still major diarrhea and weight loss but no one ever did colonoscopy (the whole time). Dr. Harris does procedure and everything came back clean. Did “Florida” base parasite test, results all negative, but “no” additional parasite tests even though Steve is in the islands 4-6 months out of the year for the past 10yrs or so.
In January… Dr. Rosemurgy said we need to give this some “time” and wanted to see Steve back “in a year” to do another CT and compare etc. There was still a chance the pancreas was damaged working on the boat. Left for boat late January, weight 130lbs.
Update To Post Sailing Trip Late May:
Steve started having a distended belly a week or two before they came back (Mid May). The belly is from “Ascites” that in about 75% of cases is caused from Liver Cirrhosis or PVT (Portal Vein Thrombosis).
Steve came back Sunday 5-26 and was checked into Advent Wesley Chapel for the Ascites and continued weight loss/GI problems. The treatment if it’s moderate to advanced (that’s where it’s at) is to drain it (which they did, 2.75 liters) at Advent Wesley Chapel. Steve also has low blood albumin which reduces his blood’s ability to clot. Upon looking at the CT scan they saw that Steve has a Portal Vein Clot (Officially called PVT or Portal Vein Thrombosis). Advent Wesley Chapel also saw that his Liver did not look right and wanted to do a biopsy. With the higher risk process with reduced blood clotting they said “we are not equipped to do this procedure” and referred Steve back to the other Advent hospital he went to last year with Dr. Rosemurgy.
Advent Wesley Chapel discharged Steve and we had another appointment yesterday 5/31. Steve’s fluid the day after leaving Advent Wesley chapel visually is the same size as “before” they pulled out 2.75 liters.
Upon seeing Dr. Rosemurgy 5-31 he said they absolutely should not do a liver biopsy and/or remove clot because it was high risk with limited blood clotting and not the right treatment. It was clear on CT scan that there was liver Cirrhosis.
He proceeded to show Paula and I on the CT scan exactly where there was Cirrhosis. He showed the size and length of the liver and where it had shrunk because of the Cirrhosis. He also said that the portal vein was completely blocked and showed us the other smaller veins around the portal that were helping provide blood flow to the liver because the portal vein is blocked (varices). He also showed varicose veins on other related veins because when the portal gets blocked it increases the blood pressure in other veins connected and they turn into varicose veins.
Dr. Rosemurgy prescribed water pills and a 2000ml (about 65oz) liquid intake max per day with a low sodium diet to control the Ascites.
June 3rd, Steve had significant abdominal pain and was not able to eat. On water pills and low sodium with water restriction with little impact on Ascites, maybe slightly reduced fluid retention in ankles.
June 4th, Steve passes out at end of stairs when going down for breakfast. Immediately goes to Advent ER, Tampa.
At Advent Wesley Chapel in May, Steve’s blood count was in the 9 range.
At Advent Health Tampa June 4th, Steve’s blood count was low 7’s.
Today June 5th it is in 5’s – Steve is going to get a blood transfusion.
Cardiac specialist visited last night and said the low Hemoglobin could have caused the higher heart rate and passing out etc. The transfusion should significantly help his condition.
Doing Sonogram currently and transfusion after.
Dr. Saloum Visit:
Dr. Saloum said that there is no one way to connect everything that has happened with Steve. He did a great job listening to the whole history from the start last year to now which includes the original constipation/diarrhea, all doctors visits, current status etc.
Notes From Conversation:
The high pancreatic enzymes and tumor markers are not related to liver.
The Ascites is from the PVT (Portal Vein Thrombosis) and not from anything Pancreas and most likely not Liver.
The Varices in the abdomen “could” be bleeding but if that were the case most likely “he would not be alive” so that is potentially ruled out.
The Liver Biopsy is back as an option “only” if his Ascites fluid is “bloody” and if so, they think they want to move forward with that because they need to find the cause of the blood. If the Ascites fluid is “not” bloody then they will continue with other tests.
With all his blood tests and everything else coming back negative or “good” he was surprised it was so hard for him to eat, regardless of blood count, anemia, etc. He said most people are still eating a ton no problem with similar conditions.
He said that Steve should “not” be on fluid restriction but “should” be on low sodium (2000mg/day) which is has not even been close to for months and months. Saloum basically said to do the best he could to eat anything he can until they get the ascites fluid test again (which should be today).
Another condition that may help explain the digestive problems is “Mesenteric Ischemia” which is a blood clot or restriction of blood flow to the small intestine which produces stomach problems, pain, malnutrition, and diarrhea. It’s relatively rare but matches up to some of what we are seeing. Dr Saloum says not likely.
- Never tested for Mesenteric Ischemia – Needs CT Angiogram
Heart: Once Steve is stable “then” they will do the heart scan and make sure there are no other electrical problems with heart (which Heart doc did not expect but wanted to check anyways).
Feel free to ask me questions (Jimmy)
Update 6/6 @ 3:30
Almost 4 liters of fluid removed from belly and tested. This time was confirmed bloody so one of the confirmed next steps is liver biopsy through neck (most likely Monday or Tuesday) to see if that is causing problems.
Fluid was showing signs of infection (higher white blood count) so they are taking steps to address that (no details on that).
- Doctor added anti-biotics to treat infection of Ascites fluid.
Additional tests to find blood leak include a High Contrast CT that shows every blood vessel in his system so they can try to find the leak. That should happen “Today” (no exact time but he said today).
- Post CT – Could not find blood leak. I do not believe they did CT Angiogram, just high contrast CT.
Tomorrow they are going to do an endoscopy to check that way. Waiting on bowel movement to see if there is blood in stool etc.
High contrast CT just changed to 6/7 because of prep for Iodine allergy.
High contrast CT showed no active bleeding they could see.
Upper GI scope they took some biopsies of things they saw but expect them to be negative. They did find a “hematoma” on the Kidneys that “could” be the cause of the bleeding. Dr. Saloum consulting with kidney specialist to determine the plan.
They also found some blood around the liver (I believe left side) and tentatively scheduled liver biopsy for Monday to determine if there is anything going on with the liver etc.
- Liver biopsy postponed and never happened.
Other info (I got this second hand from Steve so he may need to correct). They checked the portal vein and said the problems with it were not “new”. They reason they said that is because there are secondary veins from the portal vein that connect to other organs (like the kidneys) and those veins “were not there anymore” and there were secondary veins providing blood to those areas.
- Contradiction 6-11 – Another doctor said he had partial flow in Portal Vein. No clarity on exactly what is going on with Portal and how viable it is for improvement.
We don’t know if “not new” means weeks, months, or years ago.
The Portal vein clot (The hospitalist Ahmed I think) – Said they usually treat a blocked portal vein with blood thinners but can’t because of the low blood count and blood clotting.
Doctors say they are at a “stand still” and not sure what is going on. No one thing can link what is happening. Said while they were looking at hematoma, it was “not” on the kidney but next to it. Also said that one kidney not working and other only partially working (even though regular urine tests show normal).
- Update/Contradiction: Because of low muscle mass (mal-nourished) he may show as having low kidney function… possibly not as bad as thought.
During Hospital Visit (12 days) – Steve’s blood count was low (in the 9’s). Once in Advent Tampa (after Wesley Chapel) – Steve’s blood count went down to mid 7’s, next day to mid 5’s. Received 2 units of blood and back to mid 7’s, day later in th 6’s, got 2 unites of blodd over next 2 days. 6-9 around 8, 6-10 around 9, 6-11/12 (no updated blood count).
Can we have an MRI to see if there is any necrosis of his intestines to try and explain the “band” that forms on his stomach shortly after he eats?
Said no but believes this is just part of hepatic (liver) system congestion (infection, blood flow problems, etc).
Can LMWH (Low Molecular Weight Heparin) be used to anti-coagulate even with low blood clotting (because has been shown to be successful in patients who have bleeding varices).
A: Said they will check with Hematologist but not sure if this will help because Portal vein has changed. Not sure if this would be an improvement. Worried about bleeding out.
Is there a non-addictive non opioid pain pill that Steve can take to reduce his pain during/after eating to improve his food intake?
A: Will give pain pills as needed etc. Only option is opioids.
Is “TIPS” an option?
Answer: There is a possibility and he is going to check into this. Problem is that the Portal vein may not be viable for a stent because it has branched into sub-veins.
Q: Is it appropriate to put a port in to drain the ascites fluid?
Best article I have seen on PVT:
Supplements for Liver: