Had a few bad days, which I was convinced was the start of cholangitis attack. Started feeling nauseous with no appetite and then into fever and chills. But no pain followed nor was I physically ill. I started Cypro anyways and 48 hours into taking the meds I feel better.
I went to get blood taken to see if numbers were any more out of whack. And the C Reactive Protein came back high. Very high in my untrained eye.
C Reactive Protein (High Sensitivity)
61.3 mg/L
Where anything over 7 mg/L is considered high and active infection.
High CRP suggests inflammation. That’s all. It’s very sensitive, but not specific. Infection will cause its elevation. Rheumatoid arthritis can do the same.
I have been on maintenance Cipro for 15+ years and if I feel unusually fatigued, chills, joint aches or a fever I get to the ER immediately! I have had 17 inpatient stays within the last 7 years and its usually a blood infection or bowl flare up. I will go down hill very fast if I don’t get IV antibiotics and fluids. I’ve been on the transplant list for 18 months and feel great 355 days of the year but when I start feeling badly things turn within 12 hours. The doctors are many times not sure what is causing my symptoms but probably pouchitis from UC or a blood infection from the cholangitis if they can grow something from the blood work.
Wow. Crazy to me to think that someone who goes thru that has been listed
for 18 months and is still waiting. Outside of the infections is your liver
functioning somewhat okay? Any idea your meld?
I have been diagnosed since 1988. My MELD has been between 15 and 23, currently it is 18. I am feeling great most of the time. I found ways to greatly reduce the significant symptoms of itching and legs/hands cramping. My brother and one of my closest friends have been approved to be live donors. They just need to lose a few more pounds each. My brother has lost almost 40 pounds and good friend has lost 20. They look at it as a positive life style change with a bonus of saving my life! Needless to say, I have an incredible circle of family and friends:)
On living donors: I was just at the PSC Partners Seeking a Cure conference in Cleveland (my first time, I highly recommend it, I’m definitely going back) and there I met a man who is preparing for his second living donor transplant. It turns out that with PSC, like in his case we sometimes get too sick to have a transplant before we get a high enough MELD score to make it to the top of the list, even with the exceptions. Sometimes PSC just doesn’t score very high and we have to get sicker than other liver patients to get onto the list.