Re: More brochures were shared today! - Lee G.

[Guest guest]

: This is the note that you sent to me about living my life as normal as posible.

LEE G of Seattle

Re: More brochures were shared today! - Lee G.

Dear Lee G.,

Most of the things I do to try to regain normalcy over my life, I have learned through the years. However, after tx got called off in June (due to a substandard donor liver), and my MELD dropped to a 7 I realized that I may never get a liver and renewed my vow to live life to the fullest.

I decided that I had been cautious long enough, staying home rather than opting for a trip that may have to be canceled. Or, perhaps, passing on my favorite activities like camping and floating for fear that I'd be too far from a hospital should the need for an ER arise. So, I got myself in a different mind set and began preparing the safest, most cost effective way to approach things.

When I schedule travel by air I purchase the insurance, which is typically a minimal fee, that will allow me to cancel or reschedule a flight, without penalty, in the event of illness (usually for myself or a family member). I fly Southwest as often as possible, because, even though they will not "refund" your money (typically) they will give you a "credit" toward a future flight. Aahhhh, the relief in that (as I've had to reschedule many times). When my daughter and I traveled to Venice I purchased an insurance that would fly me back to the states, without any costs involved, in the event of a medical emergency. Luckily, I didn't need it but it sure gave me a peace of mind!

I always have labs drawn with enough time to get the results back (it only takes labs 24 hours where I have them drawn), before I leave. This way if a cholangitis attack is coming on - my white count elevated or on the high end of normal - I can decided if it's worth the risk or not. I ALWAYS make sure I have Levaquin or Augmentin (used to be Cipro for me, but the bugs got resistant to it) with me at ALL times. I make sure I have all my meds and that I have plenty in case I should have to stay somewhere longer than planned. However, keep in mind that transferring a Rx to a different pharmacy is not a big deal, and can be done anywhere.

When I travel I also make sure I know where the nearest hospital is, and the best hospital in the area, if the two are not the same, and how to get there. This is especially important when I'm camping or floating. I make sure that someone I'm traveling with knows exactly where my medical alert sheet is, with meds and conditions, and ALL other pertinent information as well as my Medical Power of Attorney. I also keep that person informed when, or if, I take meds for pain, nausea, antibiotics, etc. in case I get too ill to inform the staff at the ER (should things go awry).

I always get plenty of rest before I go anywhere, and try not to travel alone. If I do, I make sure that I check in frequently (if I have layovers, etc.) and I have my cell phone with me at all times. After doing all that I can do to ensure a safe and happy trip, I pray and let go. I always have to remind myself that I'm not in control any way - the Serenity Prayer has served me well through the years, trust me! Although all of these things still don't allow me the same level of independence that I once possessed, it gives me more freedom than I allowed myself for quite some time. It's all good, really!

I hope that these tips help you! We may not be able to cure, or even control, PSC but we can overcome many (if not most) of the obstacles it throws in our way. I promise. For 24 years now I've been on this obstacle course and although I've taken out a few cones (so to speak) I haven't wiped out! :0)

Peace to you, and let me know if I can be of anymore assistance.

(MO) www.caringbridge. org/visit/ melaniejsPSC & UC '84, RA '96, Chronic pancreatitis '97, multi DVTs '87-'00, Pulmonary Embolism '98, Raynauds '02, Asthma '07, and various other inconveniences.

Start the year off right. Easy ways to stay in shape in the new year.