Hope Lodge and Catheter Trouble (Make it Double)

Chest Pain Fiasco
So the whole chest pain hospital stay lasted about a week, before I was able to be discharged. They figured out that it might be a bacterial infection, instead of a viral one, so they put be on stronger anti-bacterial medications, while still covering the possible fungal infections. Since there is a blood clot in my left arm (the swollen arm on the right in the picture), they think some of that lodged into the lung causing bacterial problems. I always wondered why the Infectious Disease Doctors ask so many questions like: "Do you smoke?" "Your neck been sore lately" "Have you been on a farm?" "no I haven't really" "Have you been playing with the little critters on that farm" "Uh, I haven't been on a farm..." When they told me that it might be bacteria their expressions were a lot less puzzled.

About that clot in my left arm - they found out there was an infection in my blood. Then they found out my first PICC Line (Peripherally Inserted Central Catheter) was infected, so they pulled it. I guess it made a blood clot in that arm, so my left arm is still swollen, giving the false appearance that I've got some guns (or gun because it's only one arm). Hey but I'm fine with that, well not really. It looks kinda stupid. Anyway, another IV Team nurse put another PICC in my right arm. She put it kind of low, but we had a fun conversation, although she was a little erratic with her supplies; she didn't have them all ready.

This PICC worked fine at first, but I realized that there was moisture coming from the inside. At first I thought it was sweat, since there are a lot of sweat glands near your elbow. When the Gastrointestinal Doctor talked to me about the air leaking out my lungs and that it would not develop into a major problem, I showed them the moisture, and they thought it was sweat too. The same with the Infectious Disease Doctors, and they noticed the condensation underneath the dressing. Other than that I felt fine, and Dr. Ganguly let me know I was probably going to get discharged the following day, which was Friday, Sept. 12th. I really didn't feel the chest pain from the air leakage anymore. He also put me on penicillin for the bacteria. For my leg pain, he prescribed oxycontin and celebrex (for the inflamation - a weaker combination than the diladud and celebrex, last November when I was here for a week, with severe bone pain, the worst pain I've felt in my life by far - you probably saw me walk with a cane afterward).

That night, I noticed fluid leaking out my dressing. I told the night nurse, and she was equally confused. She made a block of gauze and wrapped it with a self-adhesive bandage. In the morning it was saturated and the dressing was coming off. All of this was not good. The whole reason for a dressing is to protect against infection for the insertion site. I showed my new nurse and Dr. Ganguly and the dressing got changed. I was ready do be discharged by 3pm, but we had to wait for the home health nurse to show us how to use the portable IV pump at 7pm, so that we could self-administer the penicillin (which ran 24/7). So we waited and waited and waited and watched the weather get bad outside. On the news, they reported all these small tornadoes down south, heading north. We really wanted to get out of there. She finally showed up on time, but briefly went over the equipment. She said she meet us tomorrow morning to go over every thing, plus the paperwork which would take an hour.

American Cancer Society's Hope Lodge

My mom and I decided to stay at the local Hope Lodge, which was only 10 minutes away from KU Med and the Outpatient Cancer Center. It is more convenient than commuting from Lawrence, plus we were unsure if it was safe, with my lung issues, to stay in that old krusty apartment. Oh, did I mention that it's free? Yeah that's cool too. It's a pretty nice place though, and everything is donated.
On the ground floor there is a communal kitchen that has 4 stoves and four sinks. There is a central pantry area where you get a cubby with your name on it for food, plus there is a communal one if you don't have food. There are huge refrigerators that act the same. Outside of that there is a dining area, and next to that there is a lounge area where they do weekly activities. In the basement there is a workout room, a media room, and a couple of game rooms. The workout room just has like 2 treadmills I think. The media room has a TON of movies, and a ton of VHS, but all donated. Although it's VHS city, the player is a DVD/VHS combo one, so you still don't have to feel like a caveman. There's a popcorn machine too. The game rooms have like basketball, pool, shuffleboard, poker, etc.,. The 2nd floor of the Hope Lodge is for Bone Marrow Transplant patients. They never leave their rooms, and there's a good reason why. On the third floor is where my mom and I be at. Our room is basically a hotel room. It has an enormous bathroom though, and small walk-closet. At the end of the hallway is a reading room. In all, the place is pretty nice, and I just found out how to access the Wifi.

The same thing with my PICC Line happened that night. It kept leaking. We looked at the BIO Patch and it was saturated. It made a wetmark on my bed. The next day we met with the Home Nurse and she checked it. And told us how to use the Penicillin machine I was already using. Then she checked the PICC Line dressing, concluding that it had to be leaking from within, because she tested each lumen and didn't see anything come out. She changed my dressing as well. We had another appointment that day at the Outpatient Cancer Center to get Caspofungan, a very strong anti-fungal that's administered through IV. We had to get this type of anti-fungal, because the pill, of the three pharmacies we checked, none carried ZFEND. It's a $5000 medication, but the co-pay is $60, but not many pharmacies have them ready until the week, or ever. At the center, my nurse there checked the IV and also saw that it was coming from within, so she had to give me the medication through my vein. At that point the dressing was saturated, so she changed my dressing yet again. She called up Dr. Ganguly about it and they stopped the penicillin altogether. I had to go back to the hospital to receive this new anti-bacteria med through the IV the nurse at the Outpatient Center made. The nurse at the Hospital administered it and ALSO checked the dressing and changed it.

The next morning we went back to the outpatient center to get the same stuff. The nurse there saw the that the BIO patch was still saturated even though we stopped using it, so she changed the dressing. That's FIVE nurses that have seen that the PICC Line sucks! I've had 2 line prior to these past 2 lines, and they've lasted 2 months. The old ones allowed me to take chemo to class (while wearing a mask and kids looking at me funny, and me feeling like a joke) and do my thang without any problems. I was able to take care of them with the help of my roommate David at home, too. The old ones were also done by Radiologists, not a IV Team Nurse, so they had a team of dudes getting things done right.

When we got home I got real sweaty, but my temperature was fine. An hour later I got really freakin' cold, cold enough to shake it like a salt shaker (in the words of Petey Pablo). My teeth were chattering and my whole body was shaking. This time my temp was kind of low, so I went back to the hospital for monitoring. My temp went back to normal, so my assessment is that my body is just reacting to all the medications I've been getting.

This is where I'm at now. I've gotten the sweats, followed by the chills since then. I also stayed the night here. Last night they had the IV Team look at my PICC, and guess what? It was the same nurse that put it in. Her assessment after checking it not as thorough as some others' were: that it might be leaking (it hadn't been used in a while), and that it still works. She kind of got defensive about too, when I said five other nurses evaluated her work. She also changed the dressing and put a whole bunch of gauze over the BIO patch to catch the saturation. Wow. Here's a pic of her work.
Oxygen and a new PICC
Today I got another X-Ray of my chest. The Pulmonary Doctors saw that the air that had been escaping had gotten a little worst, but it wasn't going away. Right now I'm on oxygen, to try to have more efficient air intake, but if that doesn't work I'm going to have to get a tube inserted into my side that connects to a box of water to let the air escape. The IV Team also showed back up and took out the faulty line and placed a new one. Hopefully this one doesn't give me any problems. It's higher up and pretty sore right now though. I'll be here in the hospital for a couple more days now.
I just want this infection crap to be over with so I can make it to transplant where the real battle begins.