I'm finally home from my almost 3 weeks in San Francisco. I'm so glad to be home, I missed my kitty baby, and it's nice to sleep in my bed. I don't have to travel again until the end of May when I got back to the doctor.
The Patricia K Protocol (PK Protocol) went well, I think. I had complications with my veins almost immediately after starting it. I had a perphial line put on the first Monday, and by the next dose, it was bleeding out, swollen, painful and wouldn't flush. Jim and Stacy, the RNs are very talented, especially Jim. In the past he's put lines in that don't hurt, has the easiest time finding the hardest vein, and so on. It was difficult. For some reason my blood started clotting extremely fast (which he said is very common in lyme), but I've never had that issue before. He'd put a line in, step away for not even 5 minuntes to mix medications and came back and it would already be clotted up. We learned early to hepron as soon as the line was put in.
My veins would not draw back which is extremely unusal. When putting a line in, they draw back a little bit of blood to make sure that it's correctly in the vein. My lines were in the veins, but they wouldn't draw back. Jim said it was a good thing just incase I lost an arm or something, but he's not seen that happen too often. My veins collapsed several times, and had a blow out a couple of times. My arms are still bruised, sore and have swollen areas.
The medication for the PK protocol is rough on the veins. They cause them to close us sometimes, they cause them to just ache. The one in particular that did this, of course I can't remember the name of it, but it was yellow and light sensitive. Tommy called it pee, Jim called it radioactive.
I did the IV Ketamine treatment the last Thursday I was there. I had to miss the PK protocol that day becuase they can't be missed, and had to go to Dr. G's new office which was near downtown San Francisco, kind of near the Castro. I was very nervous about doing the Ketamine, I know I've read a lot of good studies on it, mom, Tommy and I did our research on it and we knew it was safe, but the idea of it was nerve wracking. Dr. G was very nice, we actually did it in his actual office, so he could sit with me the whole time and watch. As it started it was okay, until I moved my head and then it 'swooshed' over me and made my head feel really weird. I started to feel more and more disconnected from around me.
Dr. G said "oh, there's only been one case of death... the guy was doing it unattended and did too much, and ran out naked into the street and got hit by a bus." (Just to clarify this wasn't a patient of Dr. G, this was the only death reported from all of the studies done with Ketamine and depression).
The feeling was pleasant at first. Mom said she could see the stress melt away from my face almost instantly. I got giggly and I felt very disconnected, almost like an out of body experience. I could hear and understand what Dr. G and my mom were talking about but it was so far away. Things felt different, I was very interested in the functions of my hands for a while. Things got difficult to move, like I had to physically thing about making my foot kick, or force myself and it was so difficult just to look up at the IV to see how much I had left. The pain was instantly gone, my mood was extremely improved, and as the IV ended, within 10 minutes, I wasn't in a high state anymore and was able to walk out of the office. I was perscribed the nasal spray, Dr. G said it shouldn't give me as much as a high, but is almost as effective. He wants me to do it once a day until the effects start to last longer.
Ketamine, in small doses like I did, will chemically reset your brain, nerve receptors and all, fixing the pain and depression practically instantly. There are no long term negative effects and it's not addictive. The following day after the Ketamine treatment my pain was back and was 2 times worse than before. But Dr. H & Dr. G said that it showed signs that it actually worked, which is awesome. I just need to do more doses until it actually sticks.
After speaking with Dr. H today, he says I may need more than one dose a day, which kind of scares me. I think I am going to start with every other day and go from there.
My body is finally accepting oral medications, so hopefully no PICC line for a while. We will see how my body holds up. I've been completely gluten free since yesterday (not the biggest milestone, but you know, it's good.) I was mostly gluten free while away in San Francisco but Vegas it was hard to do. Like Tommy said "no one goes to Vegas to eat healthy."
After the trip to San Francisco we met Tommy, Shannon and Dad in Vegas to meet mom's diabetic alert dog, Cookie. He was WONDERFUL he was so beautiful and took to mom instantly. He instantly went and laid in her lap. It was so sweet. Nicole, the trainer, who brought Cookie was extremely sweet (and has a dog of her own named Cookie who looks like Quill.) Quill got along so well with Cookie and they soon became best buds. It was hard to say good bye but we will get to have him soon.
It was difficult for both mom and I after meeting Cookie, thinking about Oliver. It was really hard on mom, but she stayed strong. Certain things just remind us of Oliver and it breaks us down. It didn't help that we walked into PetSmart in Vegas and there was a cat that looked so much like Oliver sitting there during their Pet Adoption day.
I'm exhausted, and I'm tired. But I want to thank everyone who was in touch with me during my treatment. It was an extremely difficult couple of weeks, and I really appreciated the short notes of encouragements, the cards. Josie sent a wonderful care package to the hotel that definitely put a smile on our face, and was wonderful. Tommy stayed with us the first week in San Francisco to help, and I am so grateful for that. I don't think we would have been able to do it without him. Shannon was in town too visiting her mom and Brian, and came by to see how we were and spend time with us. It was very nice. Nicole, who lives in San Francisco, kept in touch and wanted to meet up, but neither of us felt like it, but she kept in touch which was really nice. I got so many notes from people just saying "hey, I know this is tough, hang in there." "Just wanted to say I'm thinking of you". All those messages were so meaningful and made me feel loved. I really appreciate it. It was all so thoughtful, and loving, I can't thank you enough. You all made everything easier during this time.
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