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         Wakeup at 630 AM after maybe 3 hours of sleep. I couldn’t sleep or rest because of the 43 minute YouTube Video that the hospital produces for people who are on a quest for a liver and/or kidney transplant. When they gave us the paper with the QR code I had to scan to access it,I was told to watch it ALONE,then with Karen. After viewing it,I then understood why they wanted me to see it solo. The word “die” is mentioned many times.

         Now,I’m not naive,but that lousy, disgusting D word is not and hasn’t ever been in my soul as a husband,or a caregiver. Especially a caregiver. It’d be pretty difficult to encourage wellness if I went around believing that my wife will die. I understand the video has to lay out each and every scenario. I had an arduous time trying not to burst into tears hearing that possible outcome. After I was finished,Karen looked at my face,whose expressions always give away my innermost feelings,and asked me “Well?” I had to gather a sensible thought that would quickly reassure her. Gathering all of the strength within my body to tighten up my frazzled emotions,I calmly and honestly told her that the video has to detail all possible outcomes,and some of them will be scary,but that’s not what we’re going to focus on because every person is different. I also then realized if they don’t disclose the whole “death” thing,they’d open themselves up to a litany of lawsuits. I did all this while holding her hand tightly,and looking in her exhausted eyes,and assured her that just like we exist and survive on a day to day basis, that we will tackle this magnanimous,life altering medical problem the exact same way. We held each other for 10 minutes without stopping,taking comfort in the most important and valuable thing we have in this life,and that is our love. Not just the love we have for each other,but the love we try to share with our cats,and the love we share with our OPLIVE Family.

       We don’t take your support selfishly. We care about your lives,your setbacks and heartaches,and laugh when you laugh and hurt when you hurt. We gather bits of strength from each and every one of you. We treat every person we encounter with respect and love,whether it be virtually or in person. Those qualities imbedded within our hearts,being there for people, listening when someone needs a shoulder,making people laugh when they’re down,that’s what makes me feel like I can do anything if I just stay steady on the course. I’m going to fight,with your help,to never allow that “D” word to poison our souls. After the countless number of tragedies we’ve endured,it’s weekends watching OPLIVE with you that fuel our spirits. It also confirms that this community of people that have bonded over a reality police show are a true family. That love helped Karen get through watching the video when we finally broke our embrace.

       When we arrived at the center,Karen was taken for another fibroscan,which measures how hard a cirrhotic liver is. Karen has them twice a year. The surgeon returned with the results. They indeed did show disease progression. He said her liver can’t possibly be any “fatter” as far as Non Alcoholic Fatty liver Disease goes. Her cirrhosis is “full blown”. He then explained to us two conditions that will be the primary factors in regards to Karen being placed on the list.

     The first is a detailed MRI of her liver,to discern if she has liver cancer. As far as symptoms of liver cancer,such as jaundice, Karen has not exhibited any of those as of yet,but they still must check. This MRI will be done at that hospital (he wouldn’t accept an MRI from anywhere else) in a little over 3 weeks. A follow up appointment will be made that date to go over the results.

     The second condition of the list is not in our hands,nor do we have any control over it. That condition is that we have a stable and permanent housing situation. The hotel DOES NOT QUALIFY for this. You would think that a letter from the hospital to Social Services and the agencies that we filled out the housing applications for would push us up the waiting list. That’s not a guarantee,and on top of that,that still doesn’t erase the “housing shortage”that is keeping us in this hotel. So that variable,as of now,is unknown. Yes,I will of course be pursuing the answers to this starting tomorrow. I will keep you updated.

       So lastly,Karen had 26 vials of blood taken from her before we were able to return back here,to the hotel. She is asleep. I need a nap. I will respond to your wonderful well wishes on X later.

     As far as the money is concerned,we are still waiting for the account to be permitted to close so we can get the last few thousand we so desperately need. The fundraising effort will have to continue until we receive these funds. Everything is so expensive, especially with no vehicle (still trying to sell broke down one) and $600 rent weekly.

As always,any help can be sent to the GoFundMe on my pinned post on X, or directly to

Cash app $BFN73

PAYPAL bn11473@gmail.com or Brian Nearey

Venmo Karen-Nearey-1

Thank you all for everything.

       Hi Family. I just once again need to inform everyone of the crooked path we’re on in the battle to save Karen’s life,and our  quest for stability. As much effort as I invest in both of these journeys,one would think that at least some progress has been made on either front. Sadly,the opposite is not only true,but so much more devastating than I’d ever imagined it could be.

       As I told most of you before the show last week,Karen was told by the Kidney Surgeon at Westchester Medical Center that she is too sick to get a kidney transplant. She must receive a liver first,and they cannot do the transplants simultaneously. This news devastated us. I was speechless. We were told in the year leading up to this that “most likely” Karen would be able to get a kidney transplant first,and hope that her liver disease wouldn’t progress into the later stages.

      I’ll say one thing. The level of respect and care the doctors and staff at the hospital was the pinnacle of what a medical center should be. It made me realize just how inferior the care she’s receiving up here in this county  in comparison. I didn’t have to bring a list of 50 questions with me. I didn’t have to talk fast about our concerns because they were in a rush. I didn’t have to ask for further information because the doctor had to go. I didn’t get the usual answer when I ask pertinent questions “Oh,we’ll see” or “I’ll get back to you on that” only for those answers to just lay in a void not provided to us days or weeks or months down the road. They treated us with urgency and most importantly,with honesty. So many medical professionals are afraid to commit to certain answers due to fear of being sued. A concrete,definitive answer regarding certain conditions is rare these days. It was refreshing to hear absolute truth with conviction for once.

     We return there on Tuesday,June 3. We will be hoping for Karen to be placed on the Liver Transplant list that day.In the meantime,life is squeezing its vice grips upon us no matter how hard we push back at them. Currently,I am trying to sell what’s left of our 23 year old Toyota. It starts,but it’ll cost too much to repair the front end,air conditioning,etc.to keep. At 275,000 miles,it’s seen its best days. We weren’t able to take it over 50 mph on the highway for the last two years. We only used it for local driving to the doctor, pharmacy, hospital,and supermarket. If I can find someone who will pay $500 for it,at least that’s another week of rent for the hotel.

       That brings us to that obstacle. There are no apartments available yet from the 12 waiting lists we’re on. Time is running out. Stress and anxiety increases in my chest, seemingly every minute. Worse,my brave and courageous wife is inching mentally towards wanting to give up. I absolutely can’t blame her. As positive as we know we have to be to get through this, sometimes the obstacles just pile up faster than garbage going into the dump,and the positivity quickly morphs into desperation.

        Paperwork is also slowing down the process to receive the last $5K we have remaining from the forced sale of our home. We are completely without money this second until Tuesday morning,when Karen gets her Social Security. I used the last two donations to pay the rent here,and we’re still behind $200. We are hoping it’ll be released soon,but it’s an unknown variable that causes intense stress and sleepless nights.

        There are a few people here who have gone above and beyond to help us survive. I’ll not only be indebted to them for the rest of our lives,but to any of you who have thought of us,prayed for us,or wished us well. I can’t give up,but I’m becoming overtired and beaten down. I’m terrified I’m losing Karen and after I make sure she’s asleep,I cry every night into my pillow. I feel so powerless at times.

      If you can’t donate to us,can you lend us any amount of money and we will pay you back by the end of June? I’m going to shut down the GoFundMe when we are able to leave this hotel. I also will help any of you if you happen to find yourself in a position like this. How embarrassing is it for me to write this plea again??! The sickest I’ve ever been in my life. However,you people are all I have and we need you. I don’t know how long Karen can survive,but I do know that I won’t be able to save her unless I can at least keep us from living in the street. Thank you,and see you tomorrow for our favorite show.

PayPal- Brian Nearey or bn11473@gmail.com

Venmo -Karen-Nearey-1

or the GoFundMe link is in the first tweet on my profile page,but being that we need some immediate help,the first two options are better.

Thank you for reading. I can’t wait to write about good news one day.

Brian.

    

        I realize that you’ve seen some desperate,scary posts from me on X lately. I don’t write any post for dramatic effect. Anything that I post regarding my wife’s health and our life situation comes directly from my soul,and is an honest depiction of what exactly we’re experiencing and what I’m feeling at the moment I write it.

      I don’t exaggerate or overly dramatize any of my words. This is the single most disastrous time of our lives. I also am not telling you all every detail about our struggles just because we need charity.

     I wish I could tell you one reason why we are stuck in this horrific nightmare,but I can’t. Everyone tells me I have to care for myself to care for Karen. The problem is there isn’t much I can do because of where we live,and the car not working. I can’t stop worrying,but I keep going. I try to fight fear with faith,and I used to be able to manage it. Right now I’m sad,depressed,and terrified. I also am walking around everyday knowing I might have lymphoma. Those thoughts always lurk in the background of daily life. I am going to go for the follow up cat scan after I know Karen is at least on the transplant list.

     We have to try the big meeting with them once again on Wednesday. I don’t know how this is going to work. Will they make her get a liver first,or the kidney first? What are the odds that she’ll get either? What are the odds of her surviving an 8 hour transplant? With all the complications dialysis is giving her,how is she going to overcome any of this? On “good” days,I don’t think of these things. I put on a brave face and do my best to create a positive environment for us. On bad days,when I’m watching her sleep,I sometimes don’t possess the strength to ward off the fear and uncertainty.

      What makes it worse is the constant stress over money,and the waiting for an apartment from the applications we filled out 9 months ago. The only possible saving grace is the last of the proceeds from the forced sale of our home. As of now,there’s only $6,000 left that we can’t access yet. We were told by her brother the middle of May. Well,the middle of May has come and is almost gone and he says paperwork with the court hasn’t been cleared yet. None of this makes any sense to us. If any money was owed out,the closing was in August,why wouldn’t it have been flagged then???? We are $180 short for this week’s rent as it is. We have less than $100 left to our name. Not having the car is extremely difficult to navigate. We just want to be able to stand up and provide for ourselves and not be a burden to anyone. If this doesn’t get solved this week,we will be completely broke.

      So once again I have to throw our dignity in the trash and ask for just a little more help. I didn’t want to write these words again.If anyone has anything they can spare,and I do mean anything, please send what you can to us via the following options

PAYPAL- bn11473@gmail.com or just Brian Nearey

CASHAPP $BFN73

VENMO Karen-Nearey-1

or the GoFundMe on my pinned tweet on my X profile page.

The rent in this hotel is $600 a week and that’s why things are so difficult. If we don’t receive the rest of the house $ soon,we will have to give up the cats and go to a shelter. I’m not going to let my critically sick wife have to do that. It would kill both of us. Please help me try to keep my family together. Even if you need the money returned to you,we will.

     In the meantime,I’m trying to hold it together,but I need to renew and reset my inner strength. This is a 24/7 crisis,and I don’t get enough sleep. Thank you all for your caring,your prayers,and friendship,and support. We literally wouldn’t be here without it.

     I’ll post an update after the transplant meeting.

Brian

   Hello, family. I know most of you are aware that Karen and I had to go to Westchester Hospital in NY today to finally attempt to add her name to the kidney transplant list.

     Shortly before we were to go on this journey,in fact mere minutes before we were leaving,the phone rang and it indeed was the coordinator at the transplant department in the hospital. Deep within my soul,I had an intuitive feeling of fear rushing through my body, because the one thing I was hoping wouldn’t be a factor in determining Karen’s fitness for a kidney was the reason for the phone call.

      The preparation for this day took almost an entire year. When Karen caught sepsis in April of 2023,she was told then that her kidney function was at 33 percent. That’s when we began seeing a Nephrologist. The plan was to try and control her chronic diabetes,which would hopefully halt her kidneys from any further damage. However,her kidney function decreased monthly,ever so slowly,until we were told transplant was the only option.

    Before I continue,I want to remind everyone this is a woman who never took a drag of a cigarette,had maybe five alcoholic drinks in her LIFETIME,and never,EVER took part in any illegal drug use. One of the reasons this has ravaged her is because of heredity,and,most importantly,years and years of insulin. The cure is almost worse than the disease itself. She also has other permanent conditions that stem from the diabetes. I’ve listed them in the first post on this blog. Karen is on over a dozen different medications,and I’m sure they’ve all combined to take their toll on her liver and kidneys,which leads me to the proverbial “elephant in the room”

      The reason for receiving the last second phone call was due to the fact that the transplant team,after asking for records from seven different specialists, didn’t want to see Karen today because they want an updated fibroscan on Karen’s liver before we go to them. The last time we were at her gastroenterologist,which was about 8 months ago,he came into the room after reading the results of her last fibroscan. He proceeded to tell us that Karen had passed the “Non Alcoholic Fatty liver Disease” phase into Full blown chirossis. Naturally,this was devastating news. However,he believed it wouldn’t prevent her from receiving a kidney transplant. Her nephrologist told us there was a possibility that she would have to have a double transplant,but hoped that the transplant team would see fit to approve her for a new kidney despite the liver issues.

       Deep down inside,as much as I prayed and hoped she wouldn’t have to be subjected to both transplants,I had a sinking feeling they would force this issue at some point. I’m not naive. I am fully aware that the odds of her not just receiving both organs,but surviving two different transplant operations and then being successful are probably low. However,I have consistently attempted to place these horrific fears in the back of my mind, because I can’t fathom a world in which I lose her. I physically needed to avoid thinking of it just to be able to stay as positive as I can regarding her dialysis treatments and our homelessness.It is  catastrophic enough to try and restrict how sad,depressed,and hopeless those feelings  break my soul.

     So this is where we’re at in this battle for Karen’s survival. She returns for dialysis tomorrow,and the liver scan will be done next week. We will be retrying the transplant team visit on the 21st. In the meantime,due to the hotel rent increase,and still not being able to fix and renew our car registration,we are once again in a impossible and stressful position. I don’t know how much more I can handle. Hopefully the money I spoke of last chapter will be available in the next 3 weeks. We need help now,even if it’s a loan. If anyone can help with anything, please go to the pinned tweet on my X profile,or go to the last chapter to see our  Cashapp, PayPal,and Venmo account names. We just need a little more to get through until we receive what’s rightfully ours. I’d be willing to pay it back if you can’t donate it. We are in desperate need at the moment.

I’m exhausted,I must try to sleep now.

We are grateful for all of you, family.

Brian

     

  Hi, family. As I told some of you, Karen contracted a UTI on Saturday, which is common among dialysis patients. I was told to give her an OTC medicine called AZO,and sugar free cranberry juice. Prior to that,she was running to the bathroom in significant pain every 15 minutes. It was disconcerting,as she’s in enough distress as it is. The remainder of the weekend was a slight improvement. On Monday,she was able to go to dialysis. They were aware of her infection.

     I was concerned about how they wanted to deal with the infection while she was in her treatment. I was told by one nurse to “Bring her to urgent care after dialysis” ,as if she would have the energy to go to a strange place where they don’t have her medical records,and could possibly catch another illness from other patients. I expressed my concern and displeasure. I then demanded that the doctor of the facility see her during her treatment. I was told “we’ll see what we can do”

      Before I go further,let me help you understand that patient’s families are prohibited under all circumstances from being in the treatment room with their loved one. We are all forced to wait on another floor in a crowded and uncomfortable room,with little to no access to the staff. This makes airing my concerns as a caregiver difficult.

        When Karen was finished with her treatment session,she was exhausted as she was there for 5 hours. I asked if the doctor saw her. She told me she was given 2 different antibiotics in her I.V. during the treatment. She was also told to STILL go see our GP or urgent care BUT NOT TO TELL THEM SHE WAS GIVEN ANTIBIOTICS!!!!!???!!😡 I was livid. I made an appointment with our GP for today.

      When Karen woke up this morning,she was in extreme distress,with more intense pain using the bathroom,even from Saturday. I called her team of kidney doctors demanding an immediate call back. I knew we had to get to her GP appointment,but I wanted clarity and answers from her kidney team. I didn’t get that call until we struggled to even reach the doctor’s office. I actually had to buy diapers for her. She was humiliated,no matter how I tried to reassure her.

       After explaining the situation to the GP ,my phone rang. It was one of Karen’s nephrologists.  Her lead Nephrologist. She proceeded to tell me that they found ANOTHER infection yesterday near her catheter port in her chest. The problem with that, however,IS NOBODY TOLD HER!! She said she looked at the “notes” and the notes stated they gave her strong antibiotics for both her UTI and the new infection. This made me incensed and even more livid. No wonder she was so uncomfortable this morning! The antibiotics wreaked havoc on her stomach!

        The GP then spoke with Karen’s nephrologist to concur on the best plan of attack. It was agreed that Karen be prescribed Cefalaxin in pill form and to continue with the AZO for pain. Supposedly the pill antibiotic will work on both infections. I finally got her back to the hotel (after $100 in UBER rides) and had to clean and bathe my poor wife,and get her acclimated to the idea that she’ll have to wear diapers until this clears up.She looked absolutely defeated. How can she trust this “team” of caregivers whose biggest motive was to cover their butts as to not be held liable instead of getting her better? How can I,as a husband and caregiver, allow her to be subjected to possible harm from the “professionals” enlisted to care for her well being? 

        Tomorrow morning,when we wake up,I am to see how she’s feeling,check her vitals,and most importantly,check on the pain level of her bathroom uses. If she’s markedly better,a long discussion will be had with all involved to ensure this nightmare scenario doesn’t happen again.

       You see,I have been here several times before. Advocating for my loved ones during critical illnesses is nothing new to me. I also have a deep empathy for those who work tirelessly to care for us all. However,this kind of amateurish behavior and miscommunication and downright malfeasance I will not tolerate when it comes to my wife. One way or another,I’m going to do every single thing I can to save her life,which at the moment,to me,is extremely fragile. She doesn’t deserve any of this suffering. She’s the most gentle of souls. She’s never smoked,drank,or ingested any illegal drugs. I wish I could take her place.

        While I had to dig extremely deep today to keep myself a strong and stable force for her,I honestly don’t know how I did it. Living in a hotel with a broken down car, struggling with living on $1,400 a month,and not knowing if we’ll ever have a permanent place to live is the single most difficult thing I’ve ever had to overcome since the death of my mother,who I also cared for daily. Some of you know she passed of cancer in 1997 at 52. Now I’m 52,and the possibility that I have lymphoma has still not been ruled out. The funniest thing is I don’t care right now. I will follow through on the testing,but it is so difficult trying to care for myself when I have everything backing me into a wall. I feel like I’m losing this battle. I know I have to stay the course,but how much hardship,tragedy,and pain can one family endure before a complete breakdown???

        If anyone has any questions about this post,or if you can help us with any donation so we can progress to the next step, please I am begging you to DM me on X.

If you were able to read all this,I appreciate you greatly. I couldn’t have even gotten this far without the support of our OPLIVE Family.

Talk Soon,

Brian

    What a week it has been..Started last Saturday with Karen going to the ER.. Complications from Dialysis. Then Tuesday the surgery to fix her fistula. She had to be awake while they blew up balloons in her arteries. They had to stop to give her pain meds. She doesn’t deserve any of this.

      Many of you are probably are wondering “Will it ever end for them?” The answer is we hope so. Karen goes to see the transplant surgeon May 5th. Hopefully she will be accepted to the list. Hopefully our name comes up on the housing waiting list. Hopefully we can obtain a vehicle that works.

       Until then,it’s still day by day survival. Today,after dialysis Karen had a very low BP and was getting despondent and sad. She’s had it with this life. We both have. I can’t let her give up.We’ve gotten used to be poor a long time ago. We have never been extravagant people. However,we do need help to survive until we can pay it forward to anyone else in this situation. We don’t even have enough to get a halfway decent dinner for Easter.

     If any of you could consider even lending us some money until we can pay you back,it doesn’t have to be a donation. We are that desperate. It will be 13 days until we get Karen’s Social Security Disability. The rent is $500 a week. We make $1400 a month. It doesn’t compute no matter how you look at it. I am putting aside my pride and self hatred asking for handouts for our very survival. I apologize in advance for sounding so desperate,but we need one less thing to worry about,even for a few days. Unfortunately,it always comes down to money. It sickens me. However,I have no choice.

PayPal- Brian Nearey

CashApp $BFN73

Venmo Karen-Nearey-1

or the GoFundMe link at my pinned tweet on X.

Happy Easter,and thank you.

         I had so many thoughts about whether or not to start this blog. What stopped me from starting earlier was taking into consideration one basic fact. Who wants to read about someone else’s misery? I also believed that it might depress some people. I also understand that all of us have some gigantic obstacles in our lives that are almost insurmountable to overcome.

       When I realized that I know I have many compassionate and understanding friends out there,I immediately started to write. I didn’t want people to take pity upon me, I wanted to find friends that empathize with my situation.In addition,I wanted to see if I could help anyone else in a similar situation by sharing how I try to cope as a full time caregiver who has limited resources.

     This week has brought yet another unexpected medical setback for Karen. Her fistula was installed in her left arm on January 8. The vascular surgeon told us it would be 8 weeks in order for it to hopefully set properly. This is similar to a permanent IV connection,and is supposed to make the stress of dialysis easier and also to give the patient better outcomes as far as how they feel after treatments. The risks of Karen currently having the dialysis tubes in her chest are infections,and also feeling more exhausted after each treatment. We went to the surgeon Monday for an ultrasound to see if her fistula was indeed ready. We were fully expecting that it would be. Sadly,this is not the case. Not only is it not viable for use,she has to have an outpatient surgery on Tuesday called a “Fistulagram” The reason her fistula isn’t working is because either a vein or an artery leading to it is BLOCKED. This means they will have to put a stent in whatever pathway is clogged. This is an extremely heartbreaking setback. Karen is drained from the treatments. We are still waiting for our name to come up on an apartment waiting list. The hotel is becoming unaffordable. We are trying to get our car fixed. We don’t have enough money yet to accomplish this.

    I’m fighting,but my own health is starting to deteriorate. I am trying to stay hopeful. I’m trying to stay positive. I’m trying to keep my faith. I don’t want to keep asking for handouts,but we need donations until we can get out of this hotel. We still haven’t seen the transplant surgeon yet. I continue to thank everyone who’s already helped us in every way.  Any donation is an investment into a deserving family that will keep us alive. There will come a day when I believe I will pay forward every donation we have gotten to others in need. Unfortunately,it always comes down to money. If you have anything you can help us with,please go to the pinned tweet on my X page,or my PayPal or Cashapp or Venmo.

Cashapp- $BFN73

PayPal – Brian Nearey or bn11473@gmail.com

Venmo Karen-Nearey-1

Proof and documentation or for questions call me anytime

845 489 3018.

See you Friday

Brian

“Stay positive” “Day by Day” “Stay in The Moment” “You can’t Take Care of Someone Unless You Take Care Of Yourself”..These are just some of the pieces of advice I’ve received over the last seven years. Some people think they’re all cliches,and maybe they are. The important thing is that they’re all TRUE.

     The difficult part is actually being able to possess the intestinal fortitude to LIVE those cliches. It is probably the most arduous of all the aspects of being a full time caregiver. I’ve had anxiety since I was a child. You will read about the reasons why someday when I complete my book. What I can tell you is that I was forced to be hyper vigilant and adult like beginning around 7 years of age. When you grow up in a home where each days events are uncertain,a person can tend to be extremely fearful when stability is threatened. Unfortunately,that is the type of emotional persona I possess at times.

   Among all the things we need in order to achieve a regular life,a car is close to the top of the list. Ideally,we just require a 12-15 year old vehicle that can transport us to local errands,doctor appointments,and most importantly,the 30 minute drive it’ll take us to get to the hospital where Karen will hopefully have her kidney transplant. The issue is,can we spend $3500-4,000 on a car when we’re still paying $500 a week to keep this temporary roof over our heads? At the moment,that answer is a resolute NO. Until our name comes up on the housing waiting list,we don’t have much choice but to prioritize the hotel rent. It seems like a waste of money to live like this. I’ve written and called our representatives in Congress and Senate. No matter how many inquiries I make,I keep hearing the same answer…WAIT. I thought we had a lead on a vehicle,but it fell through. We just don’t have the money.

     So many of you have gone above and beyond,with your friendship,prayers,thoughts,and donations. We couldn’t survive without it. We will never,EVER take that for granted. Sometimes,and I always ask God for forgiveness when this ugly thought pops up in my brain,I wonder how causes like getting a video game created can generate thousands of dollars within 3-5 days,and people in a situation like ours can’t generate just a little more traction. Make no mistake,every single penny you’ve donated has gone to our immediate day to day survival,and we could never live without it. We thank God daily for it. In addition,someday when we are out of this mess,I intend to start a charity for those people who are out there that don’t have any income while they’re waiting months and sometimes years for their Social Security Disability benefits. That was the first and foremost reason we are currently in the situation we’re in at the moment. Karen was forced to wait 5 years and apply twice and utilize 2 different lawyers in order to get what she paid into for years. I want to help those people and all people who may be one disaster away from complete family destruction. If I can,I will make that charity happen.

    In the meantime, Karen is still struggling with the treatments. We were told that when she sees the vascular surgeon on Monday,her dialysis will change and be administered through her arm. This will make her feel much better,so we’ve been told.

   In the meantime,we would appreciate anything you could either donate to our GOFUNDME which you can find on the pinned tweet on my X profile. You can also use PayPal or Cashapp or Venmo.

PayPal – Brian Nearey

Cash App $BFN73

Venmo Karen-Nearey-1

Once again,I can document everything we are going through. If you want any confirmation that we are truly in need,call me at 845 489 3018. I can provide any documentation you would want. It’s not easy to expose my entire life on here,but I have no choice. Please,help if you can.

     I haven’t written in awhile and for me,that usually indicates that I’m depressed,wrapped up in worry and negative thoughts. I’ve always used writing as an escape,even if what I’m expressing is pain, hardship, heartache,and sorrow.

     We are waiting for a phone call to hear that we have an appointment with the transplant surgeon at Westchester Medical Center. The criteria that is required to become what they call “a worthy recipient” is stringent. Stringent in the context of your medical conditions. There are certain problems that a person can have that will cause a transplant surgeon to reject a patient,and I’ve heard at times it’ll come down to the tiniest detail. Karen and I had to have her cleared by 7 doctors of different specialties before the kidney team can even call the transplant surgeon. As you can imagine,this is extremely stressful. The routine until this transplant remains the same. Tuesday, Thursday,and Saturday,Karen and I go to the dialysis center. I am not allowed in the treatment room. I imagine this policy is from Covid and was never reversed. She is able to thankfully watch TV and nap if she chooses during the treatment. She is anemic,so they add Iron and Vitamin D to the IV as an infusion to help that. At times,she comes out from the room looking a little brighter. There are also times when it looks like she’s been through a 12 round heavyweight boxing match. Her voice is always hoarse,that’s a byproduct of the treatment.I get her back to the hotel and slowly walk her up to the room. Even with the elevator ride,she often has to stop and catch her breath on a walk that is only about 40 walking steps to the medical taxi. I make sure she’s comfortable,then make her a snack,after which she falls asleep. This sleep can vary from 3 hours to 7 when she’s really not feeling good. The cats sleep on the end of the bed, because it feels like they know she’s sick,and they and I watch over her.

   Anyway, the registration on our broken down car expires on the 1st of April. We have to get another car. It will be used,and I have a lead,but I don’t know if it’s going to work out. We are having serious issues without transportation. Yes,we can get to doctor appointments and dialysis with medical transportation,but we can’t use that for food shopping or any other errands. We appreciate the prayers and thoughts and well wishes. We also appreciate the friendship. We know it’s difficult for just about everyone right now. We are asking for any donation you can afford only if you can afford it. We just don’t have enough money to achieve what we need to at the moment. I don’t sleep much, because although I’m physically and emotionally exhausted,I’m consumed with incessant worry about how Karen will survive,the odds she has to overcome. I don’t care about myself as much as I should. I do just enough to be able to have the strength to keep caring for Karen. I worry about keeping my little family together,and not end up in the street. Unfortunately,I need help to keep sustaining our survival. Keep watch for more updates.

Brian

   

    Today,Karen had another dialysis treatment. She is currently sleeping. We’re going to call Westchester Medical Center tomorrow to arrange an appointment to begin the process to get her on the transplant list. The nephrologist at the dialysis center told us today they’re going to put a bigger filter in the dialysis machine. She said they don’t think they’re removing as much toxicity from her blood as they can.

    I help dress her everyday. I make her meals (when she’s hungry) everyday. I help bathe her. I manage her medicine,and administer it. I help her check her blood sugar. I try to encourage her,keep her laughing,and to keep looking forward to what will hopefully be a happy and peaceful future. On the inside,I worry incessantly about what will happen to her. I worry about money. I worry about being able to pay the rent in this hotel every week. I try to care for myself when I’m able. I know I have to in order to do what I do everyday. It’s extremely difficult,but I’m fighting as hard as I can.