Aa
3 months post tx
Hey Cyber Buddies,
Been struggling with severe Tendonitis since February or so, and have not been able to check in much ever since. Please know that I have not forgotten you though. This Hep C Community forum helped me, helped me, helped me, every step of the way through 24 weeks of tx with VIC. It was my intention to send all of my 'friends' a note, but alas, I have not been able to, and yesterday, I tripped and fell hard on my already sore arm :o(
My doc didn't need me to do the 3 month post labs, and honestly, I have been too busy catching up at work anyway. So, I promise to post my 6 months labs in late September. In the meantime....I want to have a summary of experiences, so please add as much or as little as you want on the following and I will type more on mine (in a journal entry) when my arm gets better:
PRE-TX:
The worst anxiety is.......the fear of the unknown. The exhale came 2 days after the 1st injection for me.
1. Who do you tell? The big question. The answer is different for everyone. Many say tell no one, while others say tell them you will be going through private long term medical treatment.
DURING TX
1. What did you learn about yourself, your eating habits, your medication tolerance?
2. Were you able to continue working?
3. Were you able to take off if you needed too?
4. Did you have side effects the whole time?
POST TX:
1. How did you feel physically and mentally the week after you finished?
2. Do you view anything differently now that you have been through tx?
3. How long did it take to get your energy back?
4. How are you feeling now?
Okay, arm hurts and that's all I can think of at the moment. Please post comments that you think will help others on their journey. I realize that newer drugs may make this all moot.....but, I also have learned that not everyone has insurance that will cover anything. So I wonder how soon the SOCs plus VIC & INV will be around.
Blessings to all. If ya need me, please send me a private message.
Bee :0)
Been struggling with severe Tendonitis since February or so, and have not been able to check in much ever since. Please know that I have not forgotten you though. This Hep C Community forum helped me, helped me, helped me, every step of the way through 24 weeks of tx with VIC. It was my intention to send all of my 'friends' a note, but alas, I have not been able to, and yesterday, I tripped and fell hard on my already sore arm :o(
My doc didn't need me to do the 3 month post labs, and honestly, I have been too busy catching up at work anyway. So, I promise to post my 6 months labs in late September. In the meantime....I want to have a summary of experiences, so please add as much or as little as you want on the following and I will type more on mine (in a journal entry) when my arm gets better:
PRE-TX:
The worst anxiety is.......the fear of the unknown. The exhale came 2 days after the 1st injection for me.
1. Who do you tell? The big question. The answer is different for everyone. Many say tell no one, while others say tell them you will be going through private long term medical treatment.
DURING TX
1. What did you learn about yourself, your eating habits, your medication tolerance?
2. Were you able to continue working?
3. Were you able to take off if you needed too?
4. Did you have side effects the whole time?
POST TX:
1. How did you feel physically and mentally the week after you finished?
2. Do you view anything differently now that you have been through tx?
3. How long did it take to get your energy back?
4. How are you feeling now?
Okay, arm hurts and that's all I can think of at the moment. Please post comments that you think will help others on their journey. I realize that newer drugs may make this all moot.....but, I also have learned that not everyone has insurance that will cover anything. So I wonder how soon the SOCs plus VIC & INV will be around.
Blessings to all. If ya need me, please send me a private message.
Bee :0)
Best Answer
Hi Billy,
150-200 toe touches a night? WOW! I'm gonna have to try that because I want my flexibility back. Have you told your docs or a Dermatologist about the darkening skin tone? I have not heard that on cheeks before and find that interesting. I did hear about dark pigment around the eyes being a vitamin deficiancy (in this one person I used to know). Glad you are continuing to get stronger and stronger.
Be well my friend,
Bee
150-200 toe touches a night? WOW! I'm gonna have to try that because I want my flexibility back. Have you told your docs or a Dermatologist about the darkening skin tone? I have not heard that on cheeks before and find that interesting. I did hear about dark pigment around the eyes being a vitamin deficiancy (in this one person I used to know). Glad you are continuing to get stronger and stronger.
Be well my friend,
Bee
Hi Jasmine,
WOW. That is some awesome, profound insight. Thank you so much for sharing your story. I am saddened to hear about your family & friend losses, and also about you carrying most of tx burden alone. The disability issue and no leave left, what a nightmare.
Happy that things are looking up for you. You are strong, beautiful and deserving of the good things to come.
Blessings,
Bee
WOW. That is some awesome, profound insight. Thank you so much for sharing your story. I am saddened to hear about your family & friend losses, and also about you carrying most of tx burden alone. The disability issue and no leave left, what a nightmare.
Happy that things are looking up for you. You are strong, beautiful and deserving of the good things to come.
Blessings,
Bee
i think it takes some time to get the joints and tendons feeling normal...i use to touch my toes 150 to 200 times most nights...now bending down and stretching is something i just started working on and i'm bad...i think another few months and it will be fine....a post tx side i'm noticing lately is my face is getting very dark...mostly on my cheeks...i always got pretty dark in the sun but this is even darker...i look like a raccoon after wearing sunglasses...nice to see ya bee....billy
Well said, thank you for posting this.
I love what you wrote. I feel the same way about the people on here. All have been so kind and taken the time to lift me up like no one else has ever done (except hubby) I feel so blessed to have found this forum. I do not think I could have treated with out everyone here. While I lost my biological family members I found new ones here.
The sinus infection and bronchitis I could have done with out but I will pick myself up and start over :)
Sorry Bee, I need to get on this. very soon
The sinus infection and bronchitis I could have done with out but I will pick myself up and start over :)
Sorry Bee, I need to get on this. very soon
Hey you! Great UND news for you!! I am praying the best for you.
And OrphanedHawk -- I hear ya. We all have to learn to breathe again because tx is/was a hard journey to wrap your head around, I am definitely set on taking care of all of me -- spiritual, physical, mental, emotional and oddly enough -- nutritional too.
And OrphanedHawk -- I hear ya. We all have to learn to breathe again because tx is/was a hard journey to wrap your head around, I am definitely set on taking care of all of me -- spiritual, physical, mental, emotional and oddly enough -- nutritional too.
nice to hear from you bee. I am not yet post tx. Still in tx and its my wk 30. Got a vl result from NP yesterday and I am still UND. I thank God very much for that. I have more 18 months to go but I may extend to 60 weeks or 72 just to make sure virus doesn't come back only if my GI agrees.
I have you in my prayers and I know your svr is already there waiting for you.
Stay blessed !!!!!!
I have you in my prayers and I know your svr is already there waiting for you.
Stay blessed !!!!!!
After reading your posts I recall that when I saw the masseuse about my tight belly, I broke down sobbing.
She said, I'd lost my balance. She was so right. After that I began going to the garden, quietly being in nature, touching the trees while breathing deeply.
This treatment affects more than just our bodies.
We need time to reconnect to ourselves.
She said, I'd lost my balance. She was so right. After that I began going to the garden, quietly being in nature, touching the trees while breathing deeply.
This treatment affects more than just our bodies.
We need time to reconnect to ourselves.
Hi Belle! Wow. We have had similar experiences, post tx in particular. I've been struggling with sadness and depression. I have always loved naps but found myself taking them more and more in that last month of tx. So of course, that threw off my sleep cycles and I already had Insomnia from the meds. So sorry to hear the strain this has put on you, through other life issues. Your posts always helped me, so I pray you continue to feel stronger. Do a 15-20 walk for a warm up, and then do your workout. That's what makes me sweat.
Hugs,
Bee
Hugs,
Bee
bee, hi there. haven't heard from you in a long while.
pre-tx - i told everyone. i didn't want people to hear about it 2nd. hand. i had a lot of positive support.
during tx - i learned that i needed better eating habits. if i snacked i did not do as well. ate a lot of yogurt and fruit. my appetite wasn't always there and food didn't always taste the same to me.
i worked 3 days/weekly (as usual) and still did cardio classes 3x/week (but low impact) i never needed felt the need to take off.
i had mild sx the whole time but got worse the last 3 weeks. i had less energy and napped more.
post tx - i felt somewhat relieved but expected to feel more energy.
life seems a little better but i still feel somewhat down (little depressed)
i stopped napping after a week. my EOT was may 29th and today was the 1st time i went surfing with my son. it has been 2 years since i've surfed. i pretty tired right now. i am 62 and it's not as easy anymore.
my sx have been low energy (hgb is 12). i had stomach bloating for a few weeks. and finally i'm a little depressed. i've had this before tx. i need to work out enough to sweat. i haven't worked out hard for a year. it's getting a little easier. working out or surfing helps with depression for me. oh, i've been nurse maid for my husband because he had shoulder surgery. so it's been a difficult last 3 months with him not working. my son is helping us moneywise. it's hard to live on 1 income. we've had to cut back on lots of things. he'll be working again in 2 weeks, so things will get better. i really need a vacation in the sierra's. we love to fish for trout. need to clear my head.
i go back to the dr. at the end of august for my 12 week labs. i hope i'm still UND.
take care of yourself.
p.s. i could not have done tx without my supportive husband and sons and my wonderful cyber family. belle
pre-tx - i told everyone. i didn't want people to hear about it 2nd. hand. i had a lot of positive support.
during tx - i learned that i needed better eating habits. if i snacked i did not do as well. ate a lot of yogurt and fruit. my appetite wasn't always there and food didn't always taste the same to me.
i worked 3 days/weekly (as usual) and still did cardio classes 3x/week (but low impact) i never needed felt the need to take off.
i had mild sx the whole time but got worse the last 3 weeks. i had less energy and napped more.
post tx - i felt somewhat relieved but expected to feel more energy.
life seems a little better but i still feel somewhat down (little depressed)
i stopped napping after a week. my EOT was may 29th and today was the 1st time i went surfing with my son. it has been 2 years since i've surfed. i pretty tired right now. i am 62 and it's not as easy anymore.
my sx have been low energy (hgb is 12). i had stomach bloating for a few weeks. and finally i'm a little depressed. i've had this before tx. i need to work out enough to sweat. i haven't worked out hard for a year. it's getting a little easier. working out or surfing helps with depression for me. oh, i've been nurse maid for my husband because he had shoulder surgery. so it's been a difficult last 3 months with him not working. my son is helping us moneywise. it's hard to live on 1 income. we've had to cut back on lots of things. he'll be working again in 2 weeks, so things will get better. i really need a vacation in the sierra's. we love to fish for trout. need to clear my head.
i go back to the dr. at the end of august for my 12 week labs. i hope i'm still UND.
take care of yourself.
p.s. i could not have done tx without my supportive husband and sons and my wonderful cyber family. belle
Hey OH! Thanks so much for your input. Easy to follow. Thanks for Post tx question #5. That's important stuff to know too.
NYgirl -- Amen! Thanks :0) Hope to touch base with you soon.
Tx meds excellerated and magnified some pre-existing stuff, so my full recovery has been delayed. I am about 80 percent better still. Still a blessing, considering I didn't know if I would make it to EOT.
Keep those comments coming! Thanks. Bee :)
NYgirl -- Amen! Thanks :0) Hope to touch base with you soon.
Tx meds excellerated and magnified some pre-existing stuff, so my full recovery has been delayed. I am about 80 percent better still. Still a blessing, considering I didn't know if I would make it to EOT.
Keep those comments coming! Thanks. Bee :)
Bee Im at work and dont have time to answer the survey but I wanted to say BEE BLESSED. Praying your tendonitis gets better!!!!!!!!!!!!!!!!!!!!!!!!
Okay, this is kind of fun~
PRE-TX:
1. Who do you tell? The big question. The answer is different for everyone. Many say tell no one, while others say tell them you will be going through private long term medical treatment.
( No problem for me, I told everyone except for my mom. Mom's in her 90s and can't remember anything anyway)
DURING TX
1. What did you learn about yourself, your eating habits, your medication tolerance?
( I learned my evil twin was lurking below the surface. Having done tx once before, and knowing I have a low tolerance to meds, the other question are moot, for me.)
2. Were you able to continue working?
( Is taking a walk and lying around occassionally doodling work ? I don't know how anyone can work and do tx.)
3. Were you able to take off if you needed too?
4. Did you have side effects the whole time?
( Yes but they varied.)
POST TX:
1. How did you feel physically and mentally the week after you finished?
( Relieved, then exhausted from finally not having to fight anymore.)
2. Do you view anything differently now that you have been through tx?
( Sure, life looks brighter :)
3. How long did it take to get your energy back?
( It slowly rebounded. I think after 3 weeks or so, I stopped taking naps.)
4. How are you feeling now?
( As Tony the Tiger would say Grrreeeaaat !)
There are a few complaints I have but none are tx related.
I'd add one more question:
5. Did you have any post tx side effects ?
( Yes, first a headache for about a week, my angular chillitis got worse, then I had some digestive issues. I was still grumpy for a few weeks.)
All in all, I'd say it took close to 12 weeks to feel all of the affects had gone.
PRE-TX:
1. Who do you tell? The big question. The answer is different for everyone. Many say tell no one, while others say tell them you will be going through private long term medical treatment.
( No problem for me, I told everyone except for my mom. Mom's in her 90s and can't remember anything anyway)
DURING TX
1. What did you learn about yourself, your eating habits, your medication tolerance?
( I learned my evil twin was lurking below the surface. Having done tx once before, and knowing I have a low tolerance to meds, the other question are moot, for me.)
2. Were you able to continue working?
( Is taking a walk and lying around occassionally doodling work ? I don't know how anyone can work and do tx.)
3. Were you able to take off if you needed too?
4. Did you have side effects the whole time?
( Yes but they varied.)
POST TX:
1. How did you feel physically and mentally the week after you finished?
( Relieved, then exhausted from finally not having to fight anymore.)
2. Do you view anything differently now that you have been through tx?
( Sure, life looks brighter :)
3. How long did it take to get your energy back?
( It slowly rebounded. I think after 3 weeks or so, I stopped taking naps.)
4. How are you feeling now?
( As Tony the Tiger would say Grrreeeaaat !)
There are a few complaints I have but none are tx related.
I'd add one more question:
5. Did you have any post tx side effects ?
( Yes, first a headache for about a week, my angular chillitis got worse, then I had some digestive issues. I was still grumpy for a few weeks.)
All in all, I'd say it took close to 12 weeks to feel all of the affects had gone.
Will, Idyllic & Dee -- Hi!! Thanks guys. I think 3 months post IS standard. My doc just seems confident that I will still be cleared @ 6 months, so he said I could skip the 3 months. Given that I am super busy, along with several other medical issues right now, I opted to skip it too.
The tendon this is my fault, non-tx related.......with the exception of being on MedHelp every day, all day during at least half of tx :)
The tendon this is my fault, non-tx related.......with the exception of being on MedHelp every day, all day during at least half of tx :)
Hey there, I just wanted to say hello, as soon as I get my thoughts together I will answer your questions
I can't remember when you finished tx however others I know have had tendon problems and they improved with time. I hope you are one of them. I have also had problems with tendons, elbow, wrist/thumb and it is getting better at 5 months post.
I will be back to answer all
My best to you dear Bee
Love Dee
I can't remember when you finished tx however others I know have had tendon problems and they improved with time. I hope you are one of them. I have also had problems with tendons, elbow, wrist/thumb and it is getting better at 5 months post.
I will be back to answer all
My best to you dear Bee
Love Dee
So are the EOT three months labs not a standard thing? In other words perhaps just the six month lab result is the only one required to establish SVR? Probably a reason many Drs offer the opportunity for three months labs is that the patient would drive them crazy otherwise!
I am no where near EOT but I bet a lot of the responses to your questions would be interesting.
PS: That photo with your cat and the raft you made out of Victrelis bottles is hilarious :)
I am no where near EOT but I bet a lot of the responses to your questions would be interesting.
PS: That photo with your cat and the raft you made out of Victrelis bottles is hilarious :)
Good to see you again Bee. Look forward to hearing about your SVR in 3 months ..
Stay well..
~Will
Stay well..
~Will
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Pre tx
Who do you tell? I told my husband and son. I opted not to tell my parents, my mother has health issues and this would worry her. I decided not to add extra stress to her life. I told my sister. My cousin was at that time fighting leukemia and on high doses of chemo. After talking to me about how I was feeling and then talking to my cous, my sister had a siezure. Underlying condition but brought on by stress. Decided it was best not to discuss with family. Glad I did not as other serious issues popped up with the family this last year. My family loves me and would worry, it is what it is, I would feel like crud for a while but would not die. I lost my cousin and a close friend of the family by two months post tx. Both had been hospitalized on high doses of chemo and lost their battles. I am glad I did not burden everyone with my complaints which were minor in comparison. I found the support i needed here on this forum.
I did not tell people at work. I was so sick of every physician assistant, lab tech, docs, nurse, clerks, etc. All asking, how did you get hep c? I did not want to deal with that at work. I should have told my boss and a few others though that I was on chemo, that i did not want to discuss details as it was private, and asked for lighter duty for a while. Think people thought I was going a bit nuts with stress and a bit dim witted towards the end. Would have been better all around if they knew it was temporary and chemo induced, not them or work.
How do you prepare? Stop spending money, buckle down. Get as much in savings as possible to help you through, just in case. Read up on fmla and disability.
During tx
What did I learn?
I learned that there are more people suffering out there then what is visible on the surface. More than I realized. I learned there is often more below the surface (there is often something else). I learned that complete strangers, in mass numbers, across all walks of life, would reach out to each other and lift each other up with an amazing amount of love and caring, in some cases heroes quietly saving lives (this forum).
I learned that it is ok sometimes not to be strong and push through and just slow down and take care of yourself. Needing to take care of myself and not being able to do the work or do things i used to does not make me a weak person.
Were you able to take off when you needed?
I should have had an upfront discussion with my doc on fmla and disability paperwork. I should have insisted on paperwork stating on an as needed basis from the beginning. I tried to push through and when I finally could not do it anymore the doc told me I was too close and would not fill in the paperwork. Try telling that to your boss when you have non leave left and need to stop working.
Post tx
How did I feel the week after tx?
Relieved to be done but felt like in had been hit by a Mack truck.
Do I view anything differently post tx?
I see beauty in the world again and find joy in each day again, even in working. I feel that life is too fragile and time with my loved ones is precious. No one knows what tomorrow brings for any of us so cherish the moments each day.
When did I start to get my energy back?
After two weeks i started improving a little more each week. By 6 weeks I had decent energy. By 12, I was hiking again and fog was mostly gone. OH is right about taking time to reconnect. Yoga and once my muscles recovered a couple of therapeutic massages were also helpful.
How do I feel now?
I am on my 3rd or 4th round of bronchitis since tx. And yet I still feel awesome in comparison. Keep away from sick people and public transportation r crowded areas post tx. Your immunity is slow to recover.
You would think I feel awful but actually no. The bronchitis will pass. I have been enjoying life again. I seem to have less issues than prior to tx in general (excluding the bronchitis episodes of course). My digestive system seems to be working. Swelling seems to be better. I have a positive outlook and more energy. Happy! Stopped taking the Prozac a couple weeks back. And still happy. Life is good.