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

[sfbaygirl]

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!

[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!

[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...

[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.  

[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.

[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!

[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

[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...

[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]

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]

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.

[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

[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.

[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!!!

[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......

[orleans]

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

[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!

[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!
;)

[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

[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!

[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

[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

[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!

[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.