I think the cheesiest thing about me is my undying love for quotes, whether they be inspirational, motivating, or just a phrase I can relate to. Whenever I’m feeling a certain way, I will go on Pinterest and browse quotes for hours to find that one little sentence that resonates deep within my soul. The title of this post is one that I found within a few minutes of looking, and I feel it truely connects with the situation Joey and I are going through.
I have not posted here since my initial post because I have buried myself in my work, and when I’m not at work, Joey and I have spent every moment living our lives to the fullest level possible right now. Distractions are good, no, no, strike that…distractions are a mandatory part of life right now, and I don’t know what we would do if we had nothing to take us away from the little rain cloud that is perpetually hovering overhead.
With that said, I think I’m going to do an outline of the past 5 years. Otherwise, it feels like documenting everything is insurmountable, so I must do it in bits and pieces like this.
We’ll start in 2011:
- March 28th – Joey wakes up at 2AM with trouble breathing; go to ER where they give him breathing treatments and nearly discharge him with a diagnosis of asthma until the nurse (Wendy, I’ll never forget her) walks in and says “You look funny, let me take your BP”, which ends up being 210/111; cardio is paged ‘stat’, chest x-rays are done, and a cardiologist exam ends with Joey getting admitted immediately after getting asked “Do your legs always swell like this? Did you know you have an enlarged heart and you’re anemic?”; the first of many nights sleeping in a reclining chair at Joey’s bedside
- Mood: Slightly worried, very cramped
- March 29th – Breathing is better and his BP went down, observation until results come back; results are back and he is diagnosed with congestive heart failure (CHF) with an ejection fraction of approximately 25%-30%; doctors are optimistic it can be managed with medication and advise that he may be discharged the following day
- Mood: Scared, but optimistic
- March 30th – Things are looking up and Joey is discharged with an appointment in April to do a stress test
- Mood: WOOHOO, BEAR GO HOME NOW!
- April 23rd – NUKE stress test is performed and doctor is very happy with his progress; advised that it’s likely he will “be out of heart failure” but will always have CHF, just the levels can vary over time
- Mood: Overly optimistic
- Remainder of 2011 is pretty uneventful
- Mood: Swings from super cheerful to very worried, depending on the day
- February 22nd/23rd – Joey texts me at work that he isn’t feeling good and is taking a nap; when I call on my way home, he feels much worse and severe pain in his side; I arrive home and he looks like hell but insists on waiting it out a bit, finally later that night agrees to go to the ER; ER doctor diagnoses appendicitis and immediately gets him admitted and starts getting everything lined up for surgery
- Mood: Nonchalant at first, assume he has the flu; upon arriving home, terrified because he looks like death warmed over; after surgery decision, scared out of my gourd
- February 23rd – Surgery has some complications due to a “gangrenous appendix” and extremely cloudy fluids surrounding the appendix, likely it burst and sepsis had started; doctor advises that he will probably be in the hospital another day because there were “some kidney issues” (Gonna be real honest, I teared up writing that…’some kidney issues’ hah)
- Mood: Less worried than before but still scared; curious about what the kidney issues could be
- February 24th – This is the first of many meetings we will have with Doctor Wong, one of the greatest doctor’s Joey has ever had; Joey receives the official diagnosis of chronic kidney disease (CKD) with a kidney function of 40%, which put him at stage 3 CKD; Wong tells us that he’s optimistic his function will go back to 50 – 60% once the surgery site heals, but there’s a small change it will stay at 40% but medicine can delay the progression of the disease (sidenote: ha); also, his hemoglobin is in the toilet at 6.9, which at this point they suspect is internal bleeding from the surgery, but they aren’t sure so they give him a blood transfusion to bring his numbers back up (sidenote number two: hindsight is 20/20, I would bet my life that was his anemia, not internal bleeding)
- Mood: Beaten up emotionally but optimistic, ready to fight
- February 25th – Kidney function down again; working diagnosis of sepsis that is clearing up with medication; many friends and family come to visit, which brings a smile to Joey’s face
- Mood: Happy to see all of our friends and family making Joey smile
- February 26th through March 1st – Observation, tests, no news, more tests, more observation, many nights spent sleeping at his bedside and crawling in to work the following every day
- Mood: Sore from the recliner, exhausted from long work days, optimistic about Joey’s discharge
- March 1st – Freedom! He is cleared to go home by Wong, but advised to make an appointment ASAP because we need to get a handle on the disease before it takes a hold of him
- Mood: Ecstatic!
- August 3rd – I know there was a doctor’s appointment between now and March 1st but I can’t find any info; Joey’s kidney function declined another 10% (I’m going to assume this means he was at approximately 30% at this point) but Wong felt it was due to Lasix, many more med changes then time to hurry up and wait again
- Mood: Somber
- September 10th – Joey’s grandfather on his Mom’s side passes away due to CHF complications, a great man who was always kind to me and treated me like one of his own
- Mood: Extremely upset about losing his grandfather, selfishly scared for Joey
- September 27th – Apparently, I licked my phone instead of my ice cream cone when talking to my mom…had to add a bit of humor in here ❤
- Mood: Hungry, apparently
- September 28th – Joey is admitted to the cardic wing due to chest pain, weight gain, and an increasingly bad cough…all signs of worsening CHF, which was terrifying in itself considering we just lost his grandfather to the disease; doctors and Joey feel optimistic he’ll be out soon but hospital rules dictate automatic admission and observation for chest pain
- Mood: Terrified…again
- September 29th – Discharged with the diagnosis of “non-specific angina”, aka “Uhh…no clue wtf happened, but congrats on not having a heart attack!”
- Mood: Befuddled, but happy he’s okay
- October 29th – Hired on full-time as a data entry specialist at New York Life, which means full medical benefits, higher pay, and full-time hours so Joey can get the care he needs!
- Mood: Joyful and optimistic we can finally make headway
Okay, there’s 2 years summed up so far, but now I need to get ready to go pick up my favorite bear from dialysis so the next 3-ish years will come at another time.
On a darker note, we received news today that his kidneys have declined even further and his creatinine is at 11.93, which equates to approximately 5% kidney function. I’ll be honest, this really sucks and I hate having no control over this. I’ve researched until my eyes felt like they were going to fall out, and everything I find states that this is just part of the course of the disease until one can get a transplant.
February can’t come fast enough, which is when he will do his stress test and find out if the transplant team will sign off on adding him to the list for a simultaneous kidney/pancreas transplant.
I don’t believe in much anymore, but I believe in the love we have for each other; I have to believe that our love for each other will get him through this, and we will spend our blue haired years together.