Steve DiBenedetto

First post: Sep 23, 2019 Latest post: Dec 27, 2019
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The last 17 months have been a series of issues, ER visits and hospital stays.  Below you can read either the quick entry, or the detailed one that outlines everything that has happened in the last year and a half.  Either way, we do ask that you check the site over the next few days to see ways you can help, as well as to check for updates.  This has been a long battle for him, issue after issue, as soon as one gets figured out it seems a new one pops up.  Any of you who have had a sick loved one, know what an emotional toll it can be on both the patient, and those who love him.  We know the Lord works in mysterious ways, but that doesn't mean we understand it, or like it.

Quick entry:
A year and a half ago my Dad had his bladder taken out, had gangrene infection everywhere that they had to clear out.  He got an infection after surgery, a blood clot to his liver which combined with sclerosis caused him to have cirrhosis of the liver.  He's retaining water and had a large blood clot to his lungs that he miraculously survived.  On top of that, due to radiation from cancer ten years ago, he is now bleeding and having blood clots in his bladder/urine, and is also now prone to blood clots.  The blood thinners help the clots, but worsen the bleeding and clots in his bladder, which will block urine from coming out.  Several other issues in between everything, but right now our current battle aside from the ongoing liver battle (cirrhosis cannot be cured), is the bleeding issue.

Detailed entry:
In April Steve was having stomach pain and I picked him up to take him to urgent care.  While sitting there waiting, the pain became excruciating and we called an ambulance and went to the ER.  He was admitted to the hospital and after three days and  many scans, nothing was found.  The doctor felt it was something with his gallbladder, most likely a gallstone so they did a scope only to discover much more than a gallstone.  His gallbladder was bad and he had gangrene infection all over his insides.  They suctioned out as much as they could and later that day he had surgery to have his gallbladder removed.

A week after surgery he was back in the hospital for an infection and the doctors kept saying they were watching "a spot" on his liver.  They kept referring to it as that and didn't give us additional information, just they were watching it.

It was a slow road to feeling better as Steve's bile ducts kept clogging and had to be scoped out a few times, and he just felt like he wasn't getting his energy back.   Then he started turning yellow.  He saw a couple different doctors who weren't able to give us a full reason as to why he was turning yellow except that his liver bloodwork was not normal.  Finally we decided to try to get him into Mayo Clinic, even though everyone told us it would be hard to get him in.  We got lucky, and the fact that he was yellow got him admitted pretty quickly.  A team of doctors looked him over, tests were done and we were finally told what the "spot" on his liver was.  It was a blood clot, and it was hardened to the artery and therefore would not move and could not be taken out.  The good news is that your liver is a self-healing organ and as one side of his liver was no longer working, the other side was already growing larger to take over. The body is a beautiful and magical thing, the doctor said you will even grow new veins as needed, isn't that crazy?!  We were excited to have some answers, and the doctor is wonderful and attentive!

My Dad's yellowing skin started getting back to normal, we thought things were getting better.  But after a couple months the yellowing started in again.  My Dad's symptoms weren't matching up with the bloodwork the way the doctor would expect and he ordered a liver biopsy to confirm it.  My Dad had cirrhosis of the liver.  Now this part is important - this is not from alcohol!  He's always worried people will think that. :)  All the infection in his body from when his gallbladder was out along with the blood clot stuck in his vein had done too much damage to the liver, it was no longer rejuvenating.  There is no cure for cirrhosis, aside from a liver transplant.  But because my Dad was also diagnosed with sclerosing cholangitis (I think), which is a disease of the bile ducts, he likely would not qualify for a liver transplant.

Unfortunately, things did not stop there.  Because of the liver issues my Dad started retaining water.  He is now on diuretics, or water pills as they are also known and needs to be on a low-salt diet.   Steve was having to go in every two weeks to get "tapped" as we so affectionally call it.  It's a paracentesis where they stick a needle in his belly and drain the fluids... sometimes nearly two full gallons full!  Usually the fluid was contained to his belly but then his legs became so swollen with fluid it was seeping out his skin.  One foot and leg was more swollen than the other.  We went to the ER to see what needed to be done, they increased his diuretic pills.  Then we had a follow up with his liver specialist at Mayo and filled him on the swollen legs, even though they were back to normal at this point.  He was concerned that since one leg was more swollen than the other, my Dad might have a blood clot, and worried it would go to his lungs.  They did a scan of his lungs, and sure enough, a large blood clot was across both lungs!  Now he got to add a blood thinner to his medication list.  In addition to this, the increased diuretic dosage was affecting his blood pressure.  He stopped taking his blood pressure meds but still his blood pressure was dropping like crazy when he would stand up.  So the dosage had to be lowered.

He has been on blood thinners since the end of June or beginning of July.  Quite honestly, it's hard to remember the order and timing of everything at this point.  The blood thinners, as you likely know, are supposed to help prevent the formation of new blood clots.  But they are also causing their own issue, blood in the urine.  And not just blood, but clots, large ones, big enough to block the urine from being able to come out.  For this, my Dad has been to the ER more than 6 times in the last two months, and has stayed in the hospital for over two weeks of that time.  He needs to be on blood thinners because of the clots, especially as he currently has another one in his leg.  But the blood thinners are causing him to bleed.  The radiation from his cancer days have weakened the wall of his bladder.  Last week they changed what blood thinner he is on, but now he's bleeding even more, to the point that he is one point away from needing a blood transfusion (hemoglobin is at 8.7).  And the clots in his urine are still coming.  A few weeks ago, they did put a stint thing in his check to keep clots from going to his lungs, brain, and heart, and they are watching the size of the clot in his leg.  

After many times at the ER in the last week, he is now at Abbott and the treatment they would like to do next is a hyperbaric chamber treatment.  We will get more information on this tomorrow, and find out of insurance will cover it and if he can stay in the hospital the entire time, which they said normally is how it goes.  He would need these treatments 5 days a week, they are about 90 minutes long, and he would need to do this anywhere from 4-8 weeks.  

We are hopeful and praying that this treatment will be covered, will fix the bleeding issues and maybe help repair other parts of his body to give us all more time together.  

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