Medical Update And Announcement

  Dialysis days start at 8 AM. I wake up,feed the cats,and get Karen’s clothes ready for her treatment. I get her morning meds ready. When I wake her,I try to be as gentle as I can so as to not startle her.I have to physically help her from her lying down position to sitting up by lifting her right arm and slowly pushing her back so she can sit on the side of the bed. We always have to start with a sugar check. Then I give her insulin pen shots. I give her a small cold bottle of water to take her meds with. In the rare event that she’s hungry,I will give her a protein bar.

        After this,I bring her into the bathroom leading her by the hand so she doesn’t fall. I bathe her partially because the chest catheter area cannot under any circumstances get wet. I help her change her diaper,then comb out her hair. She has to sit in a chair for this entire process,or she’ll lose her breath and strength. Then I walk her back to the bed and get her dressed. Sometimes she can’t even button her shirt herself.

     After that,I sit her in her walker that has a seat,and use it like a wheelchair to push her to the elevator of the hotel. We go downstairs to the medical taxi. Thankfully it’s only a 5 minute ride to the treatment center,after I help her get into the car and fold up the walker and put it in the trunk.

       Once at the dialysis center,I don’t let her enter the treatment room until I can speak to her nurse,the manager of the facility,and when she is around,the social worker. Sadly, I’m not allowed into the treatment room. Nobody is. I have to air what concerns I have from the last treatment before I let her begin the next.

      The fistula still doesn’t work. We will be going for pre surgical testing next week on what will be her third operation on her arm. Worse yet,there’s no guarantee that it’ll work. If that’s the case,the danger to her life will be exponentially higher. We are terrified about this.

       As a result of how much trauma she’s enduring due to the chest catheter, we’ve reduced the amount of fluid they remove from her each treatment. The more they take,the worse she feels.

       I then return to the hotel. I do housework, cleaning everything to ensure the room is as sanitary as it can be. I prepare her snack for when she gets home,make sure the linens are clean,vacuum and steam mop the floors and steam clean the bathroom. I feed our fur babies and make sure they have immaculate litter boxes. I do laundry twice a week in the ancient machines the hotel charges $3.25 for and the dryer which is also $3.25. Since the car is gone,I walk to Walmart when we need groceries or supplies.

       By the time I’m finished,Karen is on the way back to the hotel in the medical taxi. She exits the car looking like a ghost. She is weak and has no voice. I wheel her up to the room. By the time I get her as comfortable as I can get her,I go over her numbers from dialysis. Blood pressure,fluid removed,blood oxygen levels. I give her a snack,check her sugar,give her afternoon meds,and try to make her laugh before she naps. The cats will snuggle in around her on the bed, seemingly knowing their Mommy is sick,and they’ll nap right next to her.

       I make dinner choices based on how bad or good she feels. I sit on the bed and call care providers and the social workers who are trying to get us an apartment. I look for programs on TV for that night that I know will lift her spirits. I monitor her sleep because sometimes her legs get restless and fall off the side of the bed. Everytime they do,I cover her up again. She has bad dreams everyday and night. I try to reset myself for the night shift.

      She wakes up at 8. I give her all of her night medicine,then make dinner. We eat and watch TV. Most of everything I’ve said repeats itself again with adjustments and deviations until it’s time for sleep. That’s if she’s able. This is a NORMAL day. If she’s not feeling good, everything intensifies. When she finally is able to go into deep sleep,I finally collapse from exhaustion, although I can’t sleep myself. This is a 24/7 operation.No leisure time. No going out. Just a minute by minute survival. It takes time to recover to get to the next day to repeat the process. Living in this hotel doesn’t help.

       Worries about the $600 a week I have to pay to keep us here until we can finally find a place rattle my brain and trigger anxiety at the moments I need to rest most. I never allow myself to think we will lose,or worse,that i will lose her. However,this is no way to live. I’m terrified I still may have lymphoma.

       My announcement is I’m going in 2 weeks to find out if I do. I have to know. What I do know is I’ve lost 80 pounds in 8 months and it’s from not eating and stress. Either way,I’ll let you all know when I do.

      This is no way to live,and Karen doesn’t deserve it. Please,I know you’ve helped in so many ways,but it seems like there’s never enough money. Life is just too expensive,even if we were living in the street. Any amount that anyone can help us with takes away from the stress and incessant worry so I can keep fighting for Karen’s life. I’m deathly afraid I’m going to lose her. I’m not feeling sorry for myself. Karen doesn’t see when I feel bad,but she knows me all too well. She knows I’m torn up inside,but I’ll never give up.

      Finally,since we can’t, have a Happy 4th of July for us. We will miss the show this weekend,and interacting with you all. That’s our lifeline. YOU are what’s kept us going. I just can’t do it alone.

Once again,the GoFundMe on my pinned post on X but quicker help to our pay apps

PAYPAL- bn11473@gmail.com or Brian Nearey (don’t forget the extra E in Nearey)

Cashapp $BFN73

VENMO KAREN-NEAREY-1

Until next time,Love, loyalty,and friendship,

Brian