Hepatitis C Support Group

@ Sarspiss, aw i'm so sorry for you i cry. I didn't know it was that serious. I think I may have it awhile too.

My day at the beach was nice today. My friend got that bad stingray sting but he was doing okay after 1.5 hours. Made it up the beach cliff but we both took a few breaks along the way. Definitely these meds screw with your breathing. It's very easy to get out of breath for sure these days on minimal exertion. I will be getting some blood work done tomorrow. I wasn't anemic as of recently...and was already having this issue. Sucks...very different than just a couple of months ago.

I really don't know all of your history... In fact, any of it at all...

However, it is really hard for me to digest that you did not have an immune system at all due to HCV...

I do believe that one's immune system can be somewhat compromised because of HCV infection, yet I do not think it's possible for someone to completely lose their immune functions unless they were born with some sort of genetic disorder in the first place.

Like I said before, I don't know you medical history other than what you posted so, I'm not challenging your honesty..

I just find it hard to understand that people can have their entire immune system destroyed due to being infected with HCV.

As a person who has been on immuno-suppressant drugs for almost 15 yrs. now, the amount has lessened over the years as my host/body's own immune system got comfortable with the graft/liver.

The only problem that I have experienced since my transplant back in 1997 was contracting a rare form of lymphoma due to the specific immuno-suppressive drug I was on at that time which is what I'm still on...
FK-506 otherwise known as Prograf can cause this condition to occur in some patients so, all they needed to do was to increase the dosage and that was the end of it.

Yet I never heard of someone losing their immune system because of being infected with HCV. The closest thing that I know of is when a friend of mine had many auto-immune disorders which in short had her immune system trying to kill itself...

I had a really dear friend who's no longer with us experience an assortment of auto-immune disorders that was supposedly "cured" for sometime as a result of her transplant... But as fate would have it, they were a bit short of qualified angels in heaven... And so she was gone to do more of the beautiful work she did while she was alive.

So, were you hospitalized frequently during the periods that you had no working immune system?

Respectfully,
Henry

Wow, Kelly!! You are a powerhouse!!
I wished it worked for me like that... As I stated in another post, I went to a party this weekend for 4 hours Saturday- which was great.
Sunday, I made lunch (homemade chicken salad, croissants, and fruit salad) and had my best friend over along with her daughter and 2 other girls to address "save the date" cards for the bestie's daughter's wedding. Nice time..
This morning, my whole body hurts- like I was in a car wreck. So, needless to say, I "overdid" it and am staying home from work today. I wish I could find a nice "middle ground" where I could get things done and not have to pay for it by being in pain- ugh...
On another note- YOU are doing awesome on your treatment!! You are an inspiration to so many who chose to treat- and you really add so much to DS!! Thank you!!

Well to address my "sudden burst" of energy seems now to be due to finishing the Incevik on Friday morning and just being on the Riba and Pegasys. I am in a new phase of "WIRED!!!" No sleep since Thursday night...took a valium and maybe slept for 30 minutes last night. Crap! I went from sitting down and falling asleep everytime I did, to no sleep at all. I'm calling doc for something else to sleep later today.

Henry,
To answer your question, I was making a long story short. Here's what I can tell you about my immune problem.

Over the last 10 years, I seemed to get sick with the flu, sinus infections etc, way too often.... like 20 times during the season. Then when I went to the doc and was prescribed antibiotics, I would have an allergic reaction, and have to be given a different one until now I have about 3 to choose from should I need it. I thought this was pretty weird as I have had some antibiotics over the years and was fine. Now ones that I had had before, I'm allergic too. By allergic reaction, I mean a few bad rashes, but also some were face and throat swelling reactions. It was like my body was seeing the medicine as an intruder and attacking. I thought this was weird, but I supposed not too unordinary, and onward I went. I did have some enviornmental allergies to grass, dogs, feather pillows, mold, when I was tested in my last 20's after my left foot swelled up and eye swelled shut after laying out on the lawn for half an hour.

In 2010, I went to the dentist to have some crowns put on. Again, a freaking allergic reaction to something they gave me there. I had a top lip bigger that Homer Simpson's! I've been to the dentist a million times, they used the same stuff, yet here's an allergy? WTH?

So the dentist gave me everything he used, plus everything he could use (novacaine wise cause he still needed to finish the work) and off to the allergist I go. Turns out I am allergic to Prilocaine in the numbing cream that they put on before giving the shot. The allergist said only 1% of the worlds population is allergic to that! He said that it was very strange. So he also gave me a full series of enviornemental tests and Now I am allergic to none of them, not grass, dogs, nothing. Again the alergist said " himmm once an adult gets these allergies, they never go away without doing the shots." and I never did any allergy shots. I was too busy in my early 20's, and just avoided skin to grass contact, washed my hands after petting dogs, etc.

So he did a series of blood tests for autoimmunes like lupus and they came back, no lupus, no autoimmunes at all, but I have no existing CH50 compliment. It's the first Compliment in your Compliment immune system that tells the rest of the guys C3,C4, thru C9 to giddy up boys, we have an intruder.
The allergist sent me off to a Hemo doctor who also found along with a compromised Compliment, I also have mixed Cryogobulins in high concentration in my blood. He was the one that explained that the HCV has drained my Compliment Immune system dry from fighting it for so many years, and was leaving my body open to some real nasty things. He said it's time to treat the HCV.

So I guess it would be better for me to say, that I have a severely wacked out immune system rather than a non existing one. The Compliment system is just one part of the immune system, but it's an important part obviously.

There you have the shortened version Henry! Aren't you glad you asked? lol
Take care,
Kelly

I think your theory makes perfect sense, kind of like running for me, I could barely run a mile at one time, now 5 miles is a short run. Our bodies are amazing things capable of to SO much more than our brains allow us to believe! I like this post a lot :)

@LPBritt... YOU amaze me! I'm really glad that you went and spent time with friends even if you over did it. I know exactly how you feel! We all just want to get back to what our life was like before, but we're still a ways off from that. We try, but usually pay a price the next day or 2. Still, we strive to be normal again and I think that's what we really need to do. You're trying, Ernie went to the beach, Gilly went fishing, Peaceful is trying, several of us are trying, and although we see that it's more difficult than before, by god we're still out there trying!
I think that's important.

@hyperc....please don't be sorry! I'm getting fixed! =)

@Sarpsis, we must be on the same wave length. I have just spent the weekend having a heart to heart with myself about the fact that feeling down, and the lack of energy was pretty much a cop out. That if I wanted to feel better, the first step was to act like I did.
Half the front gardens are weeded and I even got some "me" time in the pool Saturday afternoon!
I think there is a lot to your theory. :)

Great job Concordia!!! I can see that smile on your face and it makes me smile too. =)

Since I seem to be in "Riba Wired" mode, I should get a LOT of stuff done today!

Yeah- the not sleeping part is getting to me, too. That was another part of the whole talk I had. No more naps after 1pm. That way, I'm tired enough to try and sleep. I use Ambien on occasion but hate taking extra drugs.

Hope your day is Super Productive (and wears you out!)
Yvette