Last week saw Eric and I heading off to NY for my regular six week visit with my Lyme Literate Medical Doctor.
According to my symptom rating sheet (hands up who is good at those...?) I haven't really improved much in the last six weeks so the doctor has decided to change one of my IV medications from Ceftriaxone to Clindamycin. She is hopeful that the new antibiotic will cover both my neurological and physical symptoms better so that I can again move forward. The down side of this is I will be administering the IV medication 7 days a week, 2X daily, so I will not be getting a break from dragging around my IV pole for awhile. In addition to Clindamycin, I will be continuing with Azithromycin intravenously Monday through Thursday. With the IV flushes and glutathione bags I will be doing up to 5 bags a day. All this IV medication is, of course, in addition to the oral antibiotics (4 kinds - malarone, minocycline, nystatin, metronidazole), supplements, probiotics and enzymes that I ingest daily as well.
I am finally finished with my favourite *wink* liquid oral medication - Mepron so I am quite thrilled about that! Mepron is used to treat Babesia as it is an antibiotic used to treat parasites.
The trip itself was relaxing and enjoyable. We were thankful for better weather conditions than last time and the flash freeze did not affect the roads we traveled on. I took along frozen meals and snacks appropriate for my specific diet so that I would not have to buy any food and could maintain my diet. They were microwaved in the hotel room for my evening meal and breakfast and I took a soup for each lunch packed in a thermos. We have figured out the best way to make the trip - stopping in Cornwall on the way to Plattsburgh (just before the border) and in Kingston for the night on the way back. This way we are adequately rested and as an added bonus able to make it through Toronto on time both ways to miss the rush hours of traffic!
Picc Line Problems:
The day after arriving home my picc line started leaking as I tried to administer my morning IV. As the IV lines are one unit this meant that the entire central picc line had to be replaced. As my picc line was installed in USA, it was not guaranteed that they would do the procedure in Canada. We decided that I should head to the ER St Catharines so that if they were unable to help me I could continue on to Buffalo hospital where I had it installed initially. Thank-you Janet, for changing your plans so that you could drive me to St. Cath! We spent 4 hours waiting to hear the verdict....they were unable to do the replacement procedure that day but I was given a temporary line to last me for up to a week until I could get an appointment to have it done here in Canada. Thanks to my new family doc I was scheduled the next day in Hamilton General where a lovely team of picc line pro's took care of me. It was fortunate that I was able to get in so quickly because my arm was swelling already from displacement of the temporary picc line. Apparently temporary lines are not conducive with on-the-go treatment. It would definitely not have lasted me a week...
....Double picc lines - notice my IV bag warming up in my ugg boot... ;)
Having the picc line installed in Canada has great benefits for me:
- If there are any issues with the line I can be seen immediately
- Community Care Access Center nurses have specific details and instructions of how to help me take care of the line. When I began treatment CCAC was not involved and I shudder to think of how we were taking care of my picc line (which is a direct line to my heart) before then...
- My new line will last up to a year so if IV treatment is needed for longer than the one year we are hoping for, we have bought ourselves the possibility of another six months.
- A financial savings of $3,000 that it cost to install the initial line in Buffalo
The kids enjoying the rink in our backyard
Insisting that the sunshine meant a picnic lunch was a good idea - why not?!
Niagara Falls to see the lights - what a blessing to be out and about!