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End stage liver failure medical $$
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A medical fund forRobby Bowers

End stage liver failure medical $$

Started by: Agnes Bowers

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Robby is a wonderful man with love from all over the country. There are so many of us rooting for him. Please help us mitigate the costs associated with end stage liver failure so that we can go help him stay as health as he can be for as long as he can be. We all want to have Robby stick around in our lives as long as he can!

Here’s an Amazon list to help otherwise: https://www.amazon.com/hz/wishlist/ls/C70ECSRTHNHJ?ref_=wl_share

Latest Update

The liver doctor is cautiously optimistic. Robby’s liver enzymes are just shy of normal levels. He’s still dealing with confusion episodes but we are able to catch them and pre-empt them. Generally, things are looking up. Unfortunately, finances are still tight. I’m pretty much earning about half of what I regularly would due to absence without leave days with appointments. I’m also trying to get my own health back on track. Our medications combined cost about $200 a month after insurance and any discount cards, plus we both have tests and procedures coming up. We had to do with a day of no heating fuel due to living check to check - where the house got to 35F at night. Not so fun! If you’re able to help, anything is great and even just sharing the posts will help. We are on a fine line pretty much through the rest of the school year with appointments distribution. Thank you for your continued love and support! 💜

Posted by Agnes

March 5 at 1:21am

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Now the not fun part - my leave without absence days have kicked in and my check is less than half of what I normally make. There will be another low check, and every day I need to take off for an appointment is also leave without pay this year. I can’t even make rent. Oh and I had a car accident at the beginning of the month coming home from an appointment- we owe a $500 deductible for that by the end of the month too. If you can help, pretty please do. We are stuck in a negative bank account balance that’s only getting worse each paycheck. Both of us have taken out payday loans and owe $75 every paycheck to boot.

Posted by Agnes

February 12 at 9:58pm

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A little over a week ago, Robby had a relapse of the encephalopathy - he was trapped in his mind (couldn’t speak) and hallucinating some. We got to spend the day in the ER. After four doses of lactulose, an IV of saline, and thiamin, he was better enough to come home. That Thursday, we had our first Liver Specialist appointment. This doc was the same one from the ICU but he seemed much nicer out of the ICU and assuming stuff about Robby. Robby has to get a colonoscopy and an endoscopy ultrasound to check the growth on his pancreas to confirm whether or not it is cancer before he can be referred to a transplant hospital. We had six months of waiting and proving that he isn’t drinking or smoking too. We are meeting up with the doc monthly to check on his labs and meds.

Posted by Agnes

February 12 at 9:56pm

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After the scare this past week with Robby becoming unresponsive with a very high fever and bad sepsis, he’s doing great and ready to get discharged next week. He will have to be on antibiotics long term. After he gets discharged, the doctor appointments will begin, and that will continue the financial burden. I’ve already used up our FSA funds for the year just for my own prescriptions. Any help you can give, whether by sharing this campaign or donating whatever you’re able, it would be help the stress out of the upcoming medical bills.

Posted by Agnes

January 11 at 9:02pm

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Robby was doing so well - walking to the bathroom, showering, etc. Then last night, around midnight, he started spiking fevers and became unresponsive. They moved him back down to the Intermediate Care Unit (IMCU). Doctor started him prophylactically on anti seizure meds and strong antibiotics. An EEG he had showed possible seizure activity. A CT scan showed brain is okay. An MRI is ordered for tonight to check on what was causing the unresponsiveness and seizure like brain activity. As of around 10pm, he’s gaining periods of lucidness - we have spoken a couple of sentences and I did get an “I love you.” Unfortunately the working theory of the doctors is that his body may have shut down fighting something off because his liver isn’t functioning well with producing the elements for an immune response. This is one hell of a road. I’m just crossing my fingers and hoping that we can become eligible for a transplant sooner than later so he can survive this.

Posted by Agnes

January 6 at 6:55am

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Robby update- no bloodwork changes so that’s a plus. He has to skip PT/OT because his healing blister on his heel cracked open and wouldn’t stop bleeding last time. They’ll be doing a wound wrap change soon. Similar to diabetes, healing is very slow in liver failure, so it’s taking a long time for the giant blister to heal.

Posted by Agnes

December 28 at 12:09am

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Robby semi update - he was worked by OT and PT. Blood numbers after better after this transfusion. It’s seeming like the blood loss might be the giant blister he came in with on his heel - wound care checks it once a day but it’s bleeding through the dressing through the day. He’s very exhausted from the day. After spending all that time with him the past two days, when I went to cat sit my friend’s kitties (and get a good sleep in.. sleeping when the nurse kicks at the recliner at 5am isn’t so fun), I started feeling incredibly lonely. Honestly, I haven’t felt this lonely in a long time. I’m feeling like I’m drowning, worrying about his health and longevity, seeing my finances dribble away, and even worrying if I’m capable of going back to teaching in January. Even though Robby’s napping, I am here with headphones in and I’m going to watch some TV on the iPad.

Posted by Agnes

December 27 at 2:32am

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I spent Christmas Eve all day, stayed at the hospital, and am spending all Christmas Day with Robby. He’s getting a Christmas blood transfusion- it means there’s a blood leak possibly or maybe something else is happening. Doc said yesterday that what’s really keeping him in the hospital is the lack of strength in his legs (which is in part due to a lot of edema happening due to the liver). Just have to keep going. Robby is determined to let his liver heal enough so that he can get out of the hospital and start seeing the specialist to start the process for transplant. I broke down yesterday.. this all has made me realize all the petty stuff we argued about day to day isn’t worth the stress and how much I want another decade or two to spend with my honey and soulmate. Robby is trying to think positively about everything and avoid getting wrapped up in the negative.

Posted by Agnes

December 25 at 9:37pm

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Robby walked through entire hallway today (and was exhausted afterwards). Today bloodwork looked stable. Bloodwork is the major reason he hasn’t gone to a skilled nursing facility yet. My friend Ren, her friend, and I decorated Robby’s room for solstice/Christmas yesterday too! I haven’t heard a peep about the liver specialist. Last I talked to the nurse case manager on this floor, it wasn’t on her mind. I’ll call my insurance case manager tomorrow and see if there’s anything that’s been going on with it.

Posted by Agnes

December 23 at 12:05am

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update - The attending internist doesn’t see Robby as being transferred (at the earliest) next week, so Christmas might be at the hospital. He had a transfusion and his blood count didn’t go up as much. It’s hovering around the transfusion cut off again today. Doc doesn’t know what is causing it. My great debate is whether I stay at my friend’s place (but she’s leaving for a friend’s wedding) or at my place, which is currently very full of totes and needs a bunch of Nature’s Miracle on the bed (not cause of cats but when Robby was immobile). I need to get to organizing while I can there and I miss my kitties, but I can’t drive in daily to see him if I stay at the cabin.

Posted by Agnes

December 20 at 12:44am

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Robby update - referral was sent to Maple Springs in Wasilla, AK for skilled nursing, but it’ll be a couple of days for them to review. I brought up malabsorption thanks to RNY to his internist today when doc mentioned they were giving him oral vitamin K, so he’s going to try subcutaneous to see if it’ll help him retain blood cell and platelet levels. Oh and SLP tested him - he passed all the neuro testing with flying colors, so the ammonia only affected his muscles longer term.

Posted by Agnes

December 18 at 1:21am

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Robby update - he’s getting a blood transfusion since his liver isn’t recycling RBC and his blood counts are low. Plus side, there’s no more leftover ammonia in his system. I’m planning to hang out in the room to try to get more information. Robby’s totally wiped out and exhausted from the anemia and probably will sleep all day. I just hope his liver functions well enough and long enough for a transplant. I’m not sure who to contact UW directly but perhaps I could get a referral from here to get all the transplant stuff sped up. The liver specialist still has not returned my messages and refuses to see Robby while he’s inpatient. I don’t know if a skilled nursing facility would count as outpatient or if he can go if he’s going to need transfusions. Financially, I get to figure out how to deal with $300 lasting until January 15.. my next payday.

Posted by Agnes

December 17 at 10:49pm

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Robby is still in limbo.. if a bed opens up on a higher floor he will go there. We are waiting on a skilled nursing facility but if we can get the edema down from his legs, he might be able to get his strength back from PT/OT. My insurance case manager called so now I have someone I can call and ask questions. That makes it all the easier.

Posted by Agnes

December 11 at 1:48am

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Still a holding pattern for Robby - he will get moved upstairs soon because he needs less level of care. I’m trying to find a liver/GI specialist that doesn’t just focus on alcohol as the only culprit. The social worker tried to ask Robby if he would go to an alcohol rehab place... when he hasn’t had cravings or anything like that. Original liver specialist wants him to complete alcohol rehab first. End stage liver failure that we didn’t know about and they want to keep pushing off transplant pathway because they assume he’s an alcoholic. I’m frustrated and sad. I am hoping that perhaps we can find a more compassionate specialist!

Posted by Agnes

December 10 at 12:52am

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Suzanne Dusterhoft — 16 weeks ago

Prayers for all of you

Current holding pattern in the PCU. Robby’s platelets have gone down and there’s no obvious reason. It could be due to the liver shutting down. Weekends at the hospital don’t have a lot happening. Hopefully tomorrow we will know more. Send some healing vibes for his platelets to increase and for his liver to stabilize for however long it takes to get to the transplant stage.

Posted by Agnes

December 8 at 10:17pm

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Oh and I don’t get paid until the next of this week. I still am planning to visit my honey every day!

Posted by Agnes

December 8 at 7:22am

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Today, my joint debit card and my personal debit card were used in Minnesota- while I’ve been living in Anchorage. This has left our bank accounts in the negatives. It’s in a dispute and it’ll be at least 7-10 business days before charges can get reversed. This is the week Robby will be moving, hopefully, into a skilled nursing facility. Being literally penniless will be a challenge, and all of my salary will be going to life bills.

Posted by Agnes

December 8 at 7:21am

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Show 16 more updates

21 Supporters

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  • Anonymous2 days ago
  • Joanna Stokinger3 weeks ago Robbie & Agnes: So wish I could do more. I know it’s only a little. But I know how much even a little helps.
  • Nicole Mendolera3 weeks ago Keeping you both in my thoughts and prayers. I hope things turn around for you both.
  • Melody Mann3 weeks ago Thinking healing thoughts, wishing Robbie the best care.
  • ulyetta white3 weeks ago I wish I could do more. Hang in there!!!
  • Joanna Stokinger6 weeks ago Robbie: I wish I could do so much more. Prayers for you and Agnes.
  • vicki r hewitt6 weeks ago Wishing you both the best
  • Anonymous6 weeks ago
  • Dianne K Shibe6 weeks ago Best wishes.
  • Karla Larson6 weeks ago Hoping this helps, Best wishes. Karla ❤️
  • Show 11 more supporters