I'm back! Should I stay or should I go...?

Hi everyone! I got out of the hospital Saturday after 3 weeks starting with Ischemic Colitis, possibly due to Lupus Anti Coagulant, pneumonia, staph infection,extremely low blood counts mainly. I had my first solid meal last night. Lost 12 lbs and quit smoking, although I need a program now! I had 7 different dr's all trying to keep me on full tx meds. I did it. I now have to take 17 shots a week for blood count and blood thinning on top of interferon. John finally called CPMC to talk to my doc about what had been going on. He told me to get off tx immediately. I was relieved and stopped the Riba right then. Then my great PcP said, you have come so far why not go to 48...that is today! Today would be shot 48. It made sense and my #'s are back up, so I cut the Riba to 600 and continued...I asked the Hemo about the blood clotting and if it would be dangerous to continue. He said since I am on the thinner shots I should be fine. As I am feeling a bit stronger, I am wondering if I should shoot for that 60 weeks. On Sat. I had had enough! I wanted off, as hard as I fought to stay on. All my local dr's are now on the keep going side while the one that was go longer is no longer feeling that way! Sheesh! I do want to stop, I have been so damn sick I can't believe it, but I did put a lot of blood, sweat and tears into this tx. What do you all think?

Thanks to all of you who posted about me, sent emails and called. I was too sick to post but am hopefully on my way back! Love to all!

[Forseegood]

well, of course I did one of those, wow, why did I post that? I sound like such a ninnie cause I haven't even treated, but I told my doc about you and everything I could, even brought in some of your posts, and this was his opinion without even knowing your case through and through, based on some info you have given...I just hate to post this, cause it sounds so lame, and I hate getting into those "my doc knows better then your doc" discussions we've all seen here...or my doc is the best doc, whatever...my post was based on that, and of course, my own no nothing gut reaction...I just would never want to see you do any lasting harm to yourself, and you did give it such a good shot, and you've got a lot of clear months under your belt...just hope you feel better really soon, and I'm sorry if I shot my mouth off...premature mouthification? I think I need my green tea, ha ha! be well and feel better soon!

[sfbaygirl]

Sounds like your numbers were pretty low!! While I was in the hospital having CBC's every 6 hrs. they didn't seem to worry too much about how low, as long as they could watch me and keep me away from others. I was in isolation for awhile. I just got an Aranesp shot (like Procrit, but time released). It seems to last longer and is stronger. Maybe ask your HEmo about it. In the hospital I had procrit and my Hgb stayed around 8.2. I doubt they will cut your tx. Since you have a hemo dealing with the blood, it will be his recommendation to cut tx. 9.2 is low, but if you get that double procrit you will most likely be okay soon. Mine leveled out at 11 for months before this debacle. It's hard worring about your first PCR. 3 mos. is 12 weeks, so you are okay. Some doc's are just like that, unfortunately. The Heptimax is a good idea. Since your blood counts are down it is likely that the meds are working for you. That is an anecdotal observation, but many here that don't have lower blood levels don''t respond as fast, it seems.

YOu will be fine, when do you get the PCR? Hopefully you will have more than a two log drop at week 12, as the new research shows that 2 log drops are not great at predicting SVR at week 48.

thanks for the welcome back!

[sfbaygirl]

Miss;  LOL I didn't even look on the other side yet. It took me a few days to post. I would start thinking about what I was going to say, I had so much to say and questions etc. I didn't know where to even start, then I would wear myself out thinking about it and go to sleep! LOL I finally decided, yeah a little at a time...rest. The bone pain has been pretty awful, but luckily hemo is not giving me neup unless I am .5 ANC. Maybe in a few weeks I won't need any at all. Thanks for all the calls and updates for people here! Monday I had to go match the 18 different colors in my house. Although there were formulas, they didn't look the same. As I am an expert at matching color, of course I had to do this. Thankfully we have a great painter that put me in a chair and showed me what they mixed and I got to nix it or not, but he has that eye for color so I feel in good hands. Now the contractor wants me to sit in front of the fireplace while he lays it all out...John just doesn't have that feng sui. I told you about the TV in front of th fireplace at the apt. right?

[sfbaygirl]

Mike, Thanks for your nice words and thoughts. I remember a few weeks ago you posted to me as well. It's nice to know you were thinking of me.

Forsee;  What did you post that was wrong? YOu are too cute taking my posts to your dr. lOL Sounds like something I would do. What did he say, BTW? I agreed with you about my body having had enough. But you know how it is we think we can do more...

[dperry10]

I go for the PCR test tomorrow, well thats assuming he give me the rx for it, which I am sure he will.  

I will be doing shot 14 on Friday, and have been  home from work since the last week of Feb.  But just found out some bad news about my short term disability and our new Union contract as of 2007.  I only get 4 weeks paid at 100 %, and then it drops to 50 %.  I cannot afford the cut in pay, so have to go back to work on April 3.   I was hoping my HGB would be increasing by now, since have had 6 Procrit shots,  it was starting to go up, from 10.4 to 10.7, then it went back to 10.4, and now 9.2.   When I started it was 15.7.  

But there was a Procrit FDA label warning issued on 3/9, and the Hemo would not give me the Procrit.    But after calling Gastro, he intervened and got me back into Hemo's office on Weds, so 10 days had passed by then, and he only gave me 10K.  I asked him then If I should be getting more, considering tis still dropping, he wanted to wait for this last lab.     I get the shots weekly.

[Forseegood]

oh, he's one of those laconic, few words types of guys...and he's the head of the liver clinic here but he tries to stay with me as long as he can and listen to all my BS...(ain't bad on the ole eyes either which means nothing but to make us girlies giggle)...he just said something like "your friend should get off the meds as soon as possible, good thing she's almost through with her treatment"...that's about it...

he likes the fact that I give him patient input from boards, but he treats a lot of hep c people so he's got his own data base...he's a good guy who is even open minded about supplements, etc...he's a helluva lot better then some of the other "God Complex" docs I've seen, especially that one that told me that the only people with hep c who suffer with bad symptoms are cirrhotics....what a horse butt...though I should be more respectful, ha ha!

[jmjm530]

Glad your're back and climibing out the woods! I'd listen to CPMC as they are the experts regarding the tx drugs. If they want you to stop now, I would stop now. One shot more probably isn't going to make any difference anyway regarding the virus but it could regarding your general health.

-- Jim

[sfbaygirl]

Of course you have to come and throw a racket in my plans! LOL I know, I know...perhaps I will give them a call today. My last report to DR. F was that was all the bad news and blood counts, maybe since they are up a bit, he will say go ahead....it's tough having that last shot in the frig. What if it makes a difference? Thats what the PCP said to me. sometimes ignorance is bliss! Thanks for the thoughts, I will take them into consideration, seriously. My health took such a nose dive I had no idea what hit me. Remember that Sunday when I posted about bleeding and should I go to the ER? Here I am back 3 weeks later saved from the brink of death and am still talking about going on...Sick aren't we?

[jmjm530]

Your PCP, forgive me, sounds like an idiot, based on what you've been through. All I'm saying is go with the doctors who have the most experience treating, which in your case is CPMC. If you don't think CPMC is updated on your condition, make it a point update them and if possible speak to the doctor directly. Your case certainly merits their attention.

-- Jim

[Kalio1]

Hey glad you are back amongst the walking wounded! Geez you have been through the ringer! Wow big weight loss! What do they call that...the agony diet?

Plus you stopped smoking! Good for you! Hope the house is coming together and John is taking all the trauma OK. That must have scared him pretty bad, I know it scared me and everybody here. You are such a trooper.
I think I'd stay on TX if you are feeling good and stronger each day. You put so much into it and have been to hell and back. You made it this far, I say if your bloodwork holds up and the Hemo is on board and you are up to it, go for it!

You saw the CPMC guys once or did you see them again? Weren't they the ones that wanted you to go longer? Maybe they are just worried about the other health issue and that is why they suggested stopping. I'd talk to them again before I quit, now that you are on the mend. Maybe ask why they think you should stop if your bloodwork is holding. Maybe their SOP is to stop therapy if other major isues arise, who knows but I'd be sure of the reasoning first before I quit.

So good to see you back, I was afraid to call figuring you were too slapped back by all of this to be trying to be social.

[sfbaygirl]

Yes, he was very concerned when John called him. He even answered the phone! His asst. called yesterday to reiterate the conversation. Okay, okay, what is a week anyway? I asked the hemo who found the Lupus Anti coagulant if it were dangerous to continue, he said no. But I believe he doesn't understand the art of interferon and ischemic colitis/Crohn's and how it can cause this condition to happen. The hemo also told me that this was autoimunine? I haven't had the chance to research anything about this stuff, so I am only going by the few sentences I get from the dr's. Do you know?

All I do know is that I have a blood clotting problem that I have to take blood thinners for the rest of my life. Have no idea the sx or effects of the drugs or disease.

I tend to agree to follow the expert's advise. Dr. F wanted to transfer me to his hospital, but by the time I did talk to him, I was ready to leave. I will make an appt. soon. I called the hospital to send all the reports to Dr. F. I had every test you can imagine twice. I even had huge testing equip in my little room with 15 people scrapping my lungs because they thought I had TB and I was isolated and no one with out masks and gowns allowed.. Probably memories I don't want to remember!

[jmjm530]

I wouldn't even venture a comment on the intricacies you present, other than if your liver specialist at CPMC said don't take another shot, then I wouldn't take another shot. If you feel he doesn't have current data, or if you want more input from him, then don't be afraid to call back and ask to speak to him again. Under the circumstances, I'm sure he'd take the call.

Be well,

-- Jim

[GoofyDad]

SF: A heart welcome back to the land of the living!

Kalio: Maybe their SOP is to stop therapy if other major isues arise, who knows ....

Could be that tired old saw about first do no harm......

[jmjm530]

Just to reinterate once more. Your case is very complicated. You've been through a lot in just a few weeks. Please listen to whatever doctor knows these drugs the best, and not what a PCP or anyone here says. Like Goofy wisely suggests, the most important thing they learn in medical school is "first, do no harm". Unless, CPMC gives you the green light, I wouldn't take that shot.

-- Jim

[mikesimon]

I have read about a connection between interferon and ischemic colitis/Crohn's disease and that there is an autoimmune component. The article I read recently concerned HBV and interferon and the risk for colitis/Chrohn's but I would guess that it is applicable to HCV as well. These are serious and complex issues and if I had to take a side it would be on the discontinuation of TX. I always am more comfortable with the devil I know. Mike

[GrandmaA]

I'm so glad you are back and are doing better now and getting stronger. You have been to hell and back with all those health issues in the hospital. Are you back in the apartment? That was so kind of John to email us about you before. We were really concerned.

I don't know if you should stay on tx or not. Sounds like you were almost done. I would just do the 48 weeks, not 60. The body, mind, emotions, etc. can only take so much and you have been through the mill and back.

There's a police helicopter outside he's talking on a loud speaker. I'm going to close now and set my home alarm. Take good care of yourself. I'm so glad you are on solid food now. You will gain the weight back in time.  

[MissMiss]

I was just going to call you to see what you decided.  I posted an update on you after our conversation but somehow did on the other board.  It's on page 2 now.  I'm claiming brain fog.  That's my story and I'm sticking to it, lol.

So glad you are back among us.  I bet that food was awesome after all this time.  Welcome back!  You know there are better ways to loose weight, lol.  I hope you can kick the cigarettes now.  That's a tough one.  When I had the flu I quit for about four days and craparama! I picked them back up!  Don't do that!

You take care and don't forget to get enough rest.

miss

[mikesimon]

I just want to say that I'm happy to see you back and to hear you're feeling and doing better. I have no advice on TX but I do wish you the best of luck whichever way you go. Mike

[Forseegood]

jeeez! so glad youre back! was a little worried about you, as I'm sure many were...you know, I'm no doctor, God knows, and I might get some negative postings on this, but I'd get off those meds if I were you, telling you this with no medical creds at all as you know...the body has a way of telling us things, and I think yours has all about told you what it has been able to take...sure there are many who kept going on the meds, even though they had complications, but did they have as many complications as you? I have never read any posts like that...there comes a time when you have to weight the possible harm the meds are doing, against any benefit you might get from extending treatment...throwing the baby out with the bathwater is an excellent cliche that applies here in my view...

course, like I said, I ain't no doc and you ultimately make these types of decisions, along with your doc, and it seems he's made that decision as well...

Wishing the the very best, whew! what a fighter you are!!!! you really are an inspiration...and what an EXCELLENT bonus that you quit smoking, and yeah, get thee to a program if that's what you need...best of luck from here out, take the best care of yourself, and relax and HEAL!!!  

[sfbaygirl]

Thanks for the opinion. I was so happy when the dr. said STOP tx, I almost jumped for joy. I had already done shot #47, so it is today I have to stop. I doubt I will though. I think I may listen to my PCP who has been managing my care throughout this ordeal. He's learned a heck of a lot! I will do this shot and stop. dr. F. says I have had 9 mos. of clear PCR's, so I stil have a good chance of SVR. These blood thinner shots are the worse! ONce off tx, I can go on pills. Of course I don't want to worry about "what if...", but you know what I really do think I did the best I could do and my boday definately reacted!

You ought to see the awful diet I have to eat. NO raw veggies and some cooked ones. Low fiber. No fresh fruit. All the stuff I love. I can have avacados and bannanas though.

Thanks for your concern, I know you emailed and called. Although, I didn't do much comunicating, I thought about you and everyone here.

[Kalio1]

Yes of course but she doesn't seem clear on the reasoning and has another doctor  saying not to stop. I's talk to the doc about the reasoning before I stopped.
I know how badly she has tried to stay on and clear the virus and that she had some question over being UND at week 12 and the recommended she extend before she had this other illness.
Obviously if she has to stop for this health reason, she has to stop, but if she is doing well and it won't harm her to keep going, my guess is she would want to continue if at all feasible. She's a pretty determined gal as you probably know!

Hope you are feeling good and life is being kind.

[Cindy10]

I am so glad your home now, you must be relieved. As far as tx, not really sure, but it sounds like your body has taken a beating and the drs dont want to push it , so I tend to lean towards stopping.

Think of it this way if you stop now your body can start to recover immediately, the virus has been stopped for now (with the liver healing), possibly for good (don't forgot that you may already be SVR) and if not the future holds much promise of a shorter tx. This would not be the end at all, but a beginning.

Keep those positive thoughts and remember things happen for a reason,
God knows the plan. ;-)

[Dale_Ray]

So glad to see you up and about. You had a long hard stretch of it. I read where your husband had let us know what was going on. You've got true grit lady and I admire you for it. Dale

[ladybug52]

So glad that you are back. I didn't even read all the other posts because I wanted to jump in and say: Enough's Enough! I would not do one more single pill or inj. Just my opinion, and I hope I'm not giving bad advice. Your body has been thru enough, just say no to more poisons.
MIssed you so-o-o-o much
Hugs
Bug

[l-horn]

Back and quoting The Clash ....that's gotta be a good sign. Good to see you're doing better.

[goldyn]

Missed you posting, am so glad your doing better jealouse of your weight loss,your sure no wimpy chic, i knew that house was driving you nuts.. you are the only one who knows how to fix it ..just like me...I think you should stop tx, and start healing ...........

[friole]

OH, I am so glad - you must be getting stronger by the day to get online.  I am so concerned that this is a treatment side effect.  I know  you have so much invested in treatment but you don't need a complication for the rest of your life if it could be avoided.  I hope you can talk to the specialist for an extended time ane he can give you some answers.  Your primary care doctor sounds like a wonderful person, but perhaps shouldn't be making these treatment decisions.  

I hope you get well on your bread diet.

frijole

[orphanedhawk]

Happy Spring Solstice!  I am so glad you are back. You make me feel like a wimp complaining about 3 shots a week. Seventeen !!!! do you feel like Swiss cheese?
   I sure don't know how to advise you other then to encourage you to do what feels right.   Enjoy the beautiful blooms.  
        Wishing you a healthy recovery :)   OH

[Pdilly]

Oh lady we have been so worried about you.  Please listen the the doctor (not your PCP).   Jim is right one week will probably not make much difference.  
Get well

[sfbaygirl]

Just woke from one of those required hospital naps in mid day...Thanks for all the input!

I think I slept too long to make that call today, but I will email Dr. F. tonite. No shot today. From all the great wisdom around here, I hear my own worries expressed. One minute I want to stay and fight. I am so used to fighting it hard, the next minute I am thinking about how sick I've been and don't want to compromise that again. Most likely one shot won't kill me, but who knows? Who would have thought I would end up in the hospital for weeks with such serious conditions? It happened so fast, I sure wasn't prepared. There are a lot of intriquiciess that I have no idea about and will most likely learn more about in my quest of info about a this new disease I have. I am now tending to agree with those of you who say not to do that last shot. On Sat. I was going to write here that I was done. Stick a fork in me..I AM DONE. Then my fight mode took over the flight mode and thanks to all your opinions I can think about this issue more seriously than a couple of dr. opinions only. I sure to apprieciate all of them!

Ihorn;  Yep, that song has been stuck in my head for days now!

[sfbaygirl]

Missmiss;  I read the posts on the other side. I am hiring you to tell my story! You do a much better job than I do! No way you have brain fog with that memory.

Kalio;  I tried calling you last week, but I may have the wrong phone # on my cell, which is all I have now that I am NOT at home yet, but in the apt. It is more comfy than the hotel though.

[web52]

welcome back. you are a trooper & an inspiration!

[wyntre9]

I'm soooo glad to hear you're doing better.  What an ordeal!  But you emerged with flying colors, yet again!  

You are truly an inspiration and we need you to stick around so take VERY very very good care of yourself.

Wyntre

[Myown]

Hey SFBay!  So good to see you back! As you know, we all missed you. From what I read it sounds like your medical team is a good one and I would think it is best to listen to them too.

We all will continue to hope and pray for the svr that you have so courageously fought for.

I didn't want to email you because I knew you would be too tired to be answering emails, but you have been on our hearts and minds and as you can see on forum, we talk about you all the time. Everyone is very concerned about you. You are loved.

[wyntre9]

Good to see you here, too!  :)

[sfbaygirl]

I-horn, Goldyn, Orhanedhawk, Wyntre, Web52, MyOwn, and everyone else that has posted to me the past few weeks....along with all those I have already mentionened

Thank you so much for your thoughts and caring. It astounds me the amount of support that I have recieved here from people I have become very close to but hardly know. You guys are my heros and I listen to your opinions and thoughtsts along with my dr's. Those of us that are going through this have so much insite compared to some Dr's who haven't a clue. I truly don't know how I will ever stop coming to this site, SVR or not. Thanks so much..you all make me feel special.

[Myown]

good to see you too.

[dperry10]

So glad you are back, and that they figured out what was wrong, just sorry it took 3 wks to recoup.    I bet you felt like you were on a an episode of  "HOUSE"   lol. .  I hope you get back to normal, and glad you finally made it home.     Hope the smoke smell is gone.  

I am hanging in there, and go for my PCR tomorrow after my visit with my gastro.   They have had me on Procrit for the last 6 wks, but HGB still dropping, down to 9.2.  So went back to hemo today to get a double dose, he was apparently not even giving me enough.  Only 10,000 u/l per week, so he gave me 20,000.  I just hope that is enough.   Also my RBC is now dropping, and I just hope that has no bearing on whether doc will let me continue after the 3 months.   This is my first PCR, he refused to order one before now, and did not even use the 12 wks as marker, but 3 full months since the day I started treatment.  I will be sure to ask for the Heptimax, and pray that I have at least a 2 log drop.  

Glad to have you back, and will be looking to see your posts again.. We have all sure missed you.

D

[aquarius64]

glad to hear your getting better and good to have you back with us nutjobs! i hope everything turns out good for you, seems you've been through enough lately! good luck and God bless!

[ladybug52]

AHHUUUMMMMM. (That's the sound of me clearing my throat loudly)
Is there anyone you might have missed when you were thanking everyone?? Were you thinking of me in the "and everyone else list"? :)
Hope you get better everyday. There's a new drug to help stop smoking that's suppose to be really good. I might try it after stopping a few of these drugs.
Love ya, (you know I'm kidding, right? You know what a whiny baby I am, but in this case it's just a joke!)
Hugs,
Bug

[giddyup]

Hi sorry you've had such a hard time  you've been through alot of  tx so I wouldn't feel bad if for stopping if I were you. I know how ugly those ribba pills can start to look.  I just wanted to say that I hope you don't smoke again as that would be the singuraly most positive thing you can  do to help your health. Congratulations on quitting!- giddy

[Tallahassee]

Glad to hear from you and to know that you're feeling better!

Keep up good work! :) ... and don't worry about stopping your treatment ... think about it as 47 successful weeks!

All the best!

[rosebud57]

So glad to see you pulled through your ordeal and are feeling better to be with us again.  I  have no opinion about whether you should continue or not please do what is best for you physically, emotionally for  the long term.

doctors probably have your best interest but find out all their concerns then weigh your options.

right now you should concentrate on regaining your health.

take care
rose

[Tater-ToT]

WELCOME HOME!!!!
(It's about time)... LoL... Just Kidding!

Wow... itr's really good to see you... I hope this finds you feeling stronger everyday...!!!

I certain;y wouldn't ever advise you one way or another, but totally respect your decision regardless of what route you take.... My Gosh... you've been thru sooo MUCH Lady....Shish... I just want to see you feeling better & healthy again!

Hang in there, & again, Glad you are back... you were certainly missed!
;)

[Teufelhunden]

Welcome back! Glad to see you're somewhat back on your feet. Take it easy the next few days and ease back into the routine. Take care!

[orleans]

my goodness! when does the cure become worse than the disease? may the Lord have mercy on us all, truly

[OnAPrettyPoison]

Welcome Home!   We missed you so much, can you tell????  I am proud of you quitting smoking  - you have gone thru the hard part, just don't pick them back up.  I, too, quit while in the hospital and on a morphine drip when they yanked my appendix out!  I highly recommend that method......

[sfbaygirl]

Awwwww, Bug! My bug, of course I didn't forget you! I missed you and thought of you often. All our fun bantering kept me going when things weren't going so well. As much as I have been sleeping lately, I was thinking about you all morning. I didn't know I had forgotten you! You must have gotten through though! I am really glad to hear from you!!!

[wyntre9]

Ladybug,

No one could EVER forget about you!  Right SFG?

SFG,

WOW!!!  You sound even better now that you did when you started this thread.  
I'm sending you happy thoughts.  Take good care.

[ladybug52]

I was sending you strong energy waves while you slept. I was trying to send some positive energy so that black cloud that's been following you  around will get lost in the ozone layer or something! Everyone's so happy you're back!
Hugs,
Bug

[sfbaygirl]

Ahhh, you're a keeper, for sure! Yep, I felt those positive waves!

I went to the PCP today and told him I was done with tx. He is very worried about all the blood thinner for life etc. He said some GI's don't even put people on Cumindin, as it is dangerous. I told him this is one reason I decided not to continue tx. There are too many variables on what caused this and how any more tx will effect me. I will get my PCR in a few weeks and if all this hadn't happened and I relapsed, most likely I would have jumped back on the tx wagon. But not now. I will figure out all this stuff (need to find a board like this!) and then decide tx options. Also need to get Dr. F as my txing dr, so ins. will pay. I think I can switch plans to a PPO soon. Now that I am off tx, they are going to switch me from Leviquin to Cumindin for the blood thinner, so no more 14 shots a week of that stuff. You should see my poor brusied tummy!

I am feeling stronger each day and realize how these poisons we take for tx can be so, so devastating to us. As NYgirl and others I now have a new autoimmunine disease that I have to deal with for life. We need to really watch our health and have a GOOD, not good, but EXCELLENT doctor taking care of us during tx. It was pretty shocking when all this hit me. Here I was close to 48 weeks and got my teeth kicked in most likely from sx from these drugs. I am not saying this to scare anyone. I would do it again in a heartbeat, but perhaps not so assured that the drugs weren't that dangerous. Also, I would think long and hard about treating long and hard, if not absolutely necessary. As Jim keeps saying, there are real dangers that can happen from taking these drugs, so just my message to keep up with the health appts, and don't take these drugs lightly.

[Forseegood]

so glad youre better, I think of what you just went through, and I can see how much of a weenie I am about all this, you, and others like you, give me strenth...keep feeling better, and I hope Bug sends those health vibes to one and all, ha ha!

[sfbaygirl]

Hey, I don't think you are a weanie at all! You have little damage to your liver and are taking good care of yourself and getting checked regularly. I know as we are about the same age, I would worry about that a bit, but it's possible that you may never need tx. I haven't read the email you sent about menopause, but one thing that could have been a cause of the colitis is me going on those local hormones a week or so before this all happened. It is one cause of ischemic colitis, along with smoking, viruses, meds etc. I find it really interesting that hormones help keep the virus at bay and we are more susceptable after menopause. I have quit taking those vagifem, although they were good!

I think you are doing well to watch and wait, especially given what I just went through. That txing past 60 worries me though...  Did you get your scan? How was it?

[Forseegood]

I'm a two now..eeek...so no more watch and wait huh? I always said once I go up I'd see about doing things differently...maybe give me a ring soon when you can, and we'll chat...nighty night SFbaygirl...sleep well...

[sailinlady]

I miss a lot on here because I'm only around randomly anymore.  It sounds like you have been through an incredible amount of "stuff".  I am so sorry.  You might want to take a break and give your body time to heal.  

Take care of yourself and know you will be in my thoughts & prayers.

Karen

[sfbaygirl]

Giddyup, Tallahassee, Orleans,Teufelhunden, Wyntre, Rosebud and anyone else I forgot to mention.... especially Deputy Bug!


Thanks for your well wishes! I have been on a pretty rough ride and hope no one else has to go on here. All of these posts have really lifted my spirits, now if I could only not sleep so much! Tator, I agree, it is about time I am back! LOL

[sfbaygirl]

Geez, I didn't know!!!! Was the 2 from the Fibroscan? What was the KPS #? Mine overlapped with one, they seem to be very close. Wow, that must have freaked you out! I will give you a call and we can chat. Sorry to hear this, but you still are NO weanie!

[wyntre9]

Sorry to hear about the change in your stats, 4c.

It's a lot to think about, I know.

Good luck with your decision.

SFG,

this was very sobering;

"realize how these poisons we take for tx can be so, so devastating to us. As NYgirl and others I now have a new autoimmunine disease that I have to deal with for life. We need to really watch our health and have a GOOD, not good, but EXCELLENT doctor taking care of us during tx. It was pretty shocking when all this hit me. Here I was close to 48 weeks and got my teeth kicked in most likely from sx from these drugs. I am not saying this to scare anyone. I would do it again in a heartbeat, but perhaps not so assured that the drugs weren't that dangerous."

thanks for sharing.

[chcnme]

OMG!  Finally!!!!  OMG - I cannot believe what you have been through!!  I don't get by often but when I come I check for two things - (well not just two things but two things right off the bat lately,  and that would be anything on VX 950 and anything on how you might be doing because ...whew - you sounded like you were going through some sh**   when I last read - when you were admitted with the colitis stuff  (and you have been THROUGH IT, girl!!)   I don't know where you and others who get sick as he**  muster whatever it takes to do what you.   I read these notes sometimes in awe - I do - in absolute awe!  I sometimes just sit here reading - in dammit awe (sorry for the mouth - I curse when I'm excited,  and I'm excited to see you back and doing OK!),  but I do try to imagine and wonder how you all do what you do.   I was really really worried about you, and I kept you in my prayers.   So glad you are back.  

About the ?? 60 ??   (lol - you are something else!)  Whatever you decide on that end, you take care of you!

Hi to everyone else while I'm here, and I hope all is going well with everyone.  

[Forseegood]

one point I'll take from you is how sometimes I'll come here and feel so humbled...it helps to put me in perspective...seems like most people around me are so dang "healthy" (not that I begrudge them for it, not at all) but it sometimes makes me feel like such a "sickie" and I think what a tough thing I'm facing, poor little me type of deal...

then I come here and see what real bravery is and I realize how lucky I am that I only have the damage that I've got, and it makes me grateful...I think of Susan and how many times she's treated, and all the people that have done treatment more then once, or extended a long time, and it gives me the idea that I can make it, whatever is facing me, at least it gives me hope...

and that people are kind enough to help me, even though I'm not facing what they have faced, these are the really great things I take away from this board, and other boards like this...it's really humbling...

[sfbaygirl]

Chcmne, my buried newbie! LOL Thanks for thinking of me. I have lots of respect for you and forsee for waiting. That can't be easy either, I think it is pretty brave to do so. I am glad you saw my note about the drugs, I probably posted it too late for many to see it, but I really didn't want to scare anyone away from tx. I just feel we need the best info we can get before we dive into tx. How much damage do we have? Are we having a lot of sx's? What does the excellent dr. say? Can we wait, or should we tx now? Lot's of decisions, not easy for those of us who tx, or those of us that wait. We just really need to be aware for how tx drugs are nothing to fool with, if we can wait for better drugs. You are Forsee must have a hard time waiting, especially around here, with all of us gung ho treaters. I'm glad to see you stick to your guns and dr. about not jumping into tx until necessary.

Thanks Elaine; I am still in the apt. They are painting now...could be a month yet before I get to move back in...that will be a reall joy!