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
Our Fight For Survival 
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