All I Needed Was a Replacement Clave on My Cathedar

I am day 19 post transplant and each day is ever so slightly better than the last. My blistered esophagus (from the chemo) is finally recovering and I am able to eat without disasters above or below. My taste buds are skewed so most things just don't taste good. I can't bear anything sweet and everything else is suspect of being repugnant to me. I am eating but it's become a chore. Drinking is even worse. I NEED to drink at least 2 liters a day for them to let me go and it is the hardest thing ever! It makes no sense but I am continually thirsty and dry mouthed yet I despise drinking. It's quite a conundrum to be in. Poor Dale is continually trying to get me to eat and drink and tries a variety of strategies to make it happen. I am now recording my liquid intake to make me more accountable and it's working...sort of.

Now for the reason for my blog title...

Last Saturday I noticed one of the claves on the end of my Hickman Cathedar was missing. It's just a little blue cap that keeps the cathedar free from any germs and bacteria. It couldn't have been gone for long and I had just showered and covered the site carefully. It was just gone so we decided to walk to the clinic and get a replacement. We figured 1/2 hour max to get there, get the replacement and walk home.

OH HOW WRONG WE WERE!

When we arrived at the clinic the nurse wanted to do some blood cultures to make sure I didn't have an infection. Ok, that's fine. She started drawing blood from the cathedar and there was some fibrous material (this almost always happens when I get my daily blood draws) but this nurse started freaking out. "Oh my goodness! You are clotting! These are huge clots. Look at the size of this one. I've never seen such clotting. I need to show this to the doctor."  She kept showing me the (clots) and it was making me nauseous. She then became concerned she may have pushed a (clot) back into my line and it could be in one of my lungs. Then on the other side of my body a nurse is tugging on my arm trying to get my blood pressure but her machine isn't working right. She is trying over and over and over until I am feeling light headed and I ask to lay down for a second. I lay down on the bed and ask for some juice because I know I'm a bit dehydrated. I didn't get enough fluids that morning and I just need a quick drink to feel better. After several questions...."Are you diabetic?"  "Do you have a glucose problem?" (I'm thinking REALLY? If you don't know me by now you'll never know me) I got my juice and immediately felt better. I sat up and thought we were ready to go but OH NO they had already called the EMT's and an ambulance. I was told I was going to the ER immediately! She said they have a special test for (clots) that the SCCA isn't equipped to do. "NO!" I cried out! "I don't need to go to the ER!" I was very upset and annoyed! The PA that came in said it would make her feel better if I went. Are you kidding me! This isn't about you. She said my blood pressure dropped to low and with my heart history it would be best to err on the side of caution. MY HEART HISTORY???!!!! The only reason I have a pacemaker carved into my chest is to appease everyone at SCCA and it's done nothing but make everyone more paranoid. I have a Vasovagal  Response sometimes when I throw up. It means my blood pressure drops and I faint. It doesn't  happen all the time, only occasionally but it always resolves itself and I am fine. I now am the patient with the "Heart Issues." My cardiologist even admitted the permanent pacemaker was a bit extreme because my heart is strong and wonderful.

They still found it necessary to do an EKG before the paramedics arrived. It was normal of course.

The EMT's and ambulance show up and one of guys says to me, "What's wrong?" I say, "Absolutely nothing!"  He looks at all the medical personal surrounding me and the PA says,   "Her blood pressure dropped and she has a pacemaker..." He asks me how I feel and I say "GREAT." He then says they are leaving because this doesn't seem to be an emergency. I am thrilled until he suggests they call a private ambulatory company to take me to the ER. "NO!!!" There was no fighting this and there was nothing we could do. The private company arrives with their little van and two adorable young Asian girls transport me to the ER. We chat along the way about my grandchildren the homeless problem in Seattle and other points of interest. They told me they thought they were transporting someone with a bleeding leg.

Somewhere there was a communication breakdown...

Dale walks back to the apartment to get the car so we can get home after this fiasco.

We arrive at the ER and they wheel me right in. I'm laying on the bed and people are asking me what is wrong. I say a nurse thinks I have a clot pushed back in my Hickman Line. They say, "You need to wait in the waiting room." I panic...I tell them I am 18 days post transplant I can't be around sick people. She say's this isn't an emergency and pushes me out to the waiting room. I ask for a mask and eventually they give me one. I am extremely upset. There is construction going on in the ER so the waiting room is about a 10x10 space. It is packed with 3 other wheel chairs and a myriad of sick and (forgive the term) unsavory characters. I'm whimpering behind my mask, fogging up my glasses and praying for Dale to arrive soon. Dale arrives about 45 minutes later and is incredulous to find me in the waiting area. He wheels me into the hallway away from the sickness and starts making calls. He finally makes a connection with someone who understands the gravity of the situation and I get back into the ER and into a room. They do the exact same blood cultures and EKG that were done at the SCCA just an hour or so earlier. The only extra thing they do is a CT scan with contrast to see the supposed (clot). Of course every test came back negative.

There never was a (clot) because what happens in the cathedar isn't clotting it is fibrous tissue that forms in the line and it's completely normal.

We spent 8 long hours in that ER room and we were frustrated and starving. Luckily Dale brought an apple and a banana which we shared.

I was so cold so I had Dale bringing me warm blanket after warm blanket. Thankfully we were right across from the warm blanket storage unit.

By the time they finally discharged us that night we were so desperate to leave I left my cell phone on the bed amongst the pile of  blankets I had been curled up in.  By the time we noticed I left it there they had already taken the blankets from the room and cleaned it. I can only assume it got mixed in with the laundry. It was gone forever ands just topped off a really horrendous day. I was so sad to lose it because of the pictures and videos of the grandchildren.

I got a replacement phone yesterday and some of my contacts did turn up on the phone. Not all of them though so I will try to message via FB or something to contact the ones who disappeared from my contact list.

I have my same phone number but a new phone.

If I can figure out how to stay hydrated without my home hydration unit we may be going home in 2 weeks!!!!

One of my favorite parts of this adventure is spending time with Eric, Rebecca and our adorable and I mean adorable grandson Parker.

This was a very long post so if you got this far...thanks for taking the time and thank you for caring about me.

Here we are with our cute little bald heads. Mine will not be permanent.
I have experience with these things and I know it to be true!