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Treatment

Feb 17, 2014 - 111 comments

At 8pm 2/16/14 I started my quest to kill this insidious virus that has been running free since 1974-75 busily turning my health blood infused liver into a solid chunk of overdried pemmican where blood flow is suppressed and fibrous bridges and walls impede the journey of cleansing toxins from my body. I picture something like the mucinex commercial where the virus are all sitting around playing cards and smoking cigars in their foul smelling cavernous home when suddenly, tonight a vaguely noxious canister of death was released into their den. I see them stopping, feeling something isn't quite right as they stare at each other. Well, you little bastards,something isn't quite right for you any longer. I am stopping your breeding program as of tonight and soon you are going to be on the run.

Although I was expecting something awful to happen to me, perhaps instant flu, the war has started tamely enough with no ill effects. The shot was surprisingly easy after the dire warnings from my nurse contact that I needed in person schooling. Honestly, it couldn't have been simpler. I know it takes two weeks to become fully loaded with the antiviral stew of medicines, but so far, so good. I'm excited that I can win this battle.


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by hrsepwrguy, Feb 17, 2014
Wishing you all the best with treatment and congrats on finally getting started, love the mucinex analogy.

Have a great day
K



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by pooh55811, Feb 17, 2014
Congratulations on starting treatment. Wishing you a smooth treatment and SVR as the prize.  

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by mzkity, Feb 17, 2014
Good for you M!!!! LMAO at the Mucinex!!!

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by Advocate1955, Feb 17, 2014
Congratulations mckansas on starting your journey to ridding your body of Hep C!  We are all pulling for you!
Advocate1955

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by mckansas, Feb 18, 2014
OK, first annoying side effect showing up. Nothing serious, just diarrhea and constant intestinal gurgling. Otherwise all is well. Go Sovaldi/Ribavirin,Peg-Interferon!

Will get blood test on 27th and see where I'm at. Looking forward to a good report as soon as results come back.

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by ejoli, Feb 18, 2014
      Wishing you the best!    -Libby

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by Advocate1955, Feb 19, 2014
Yay for you mckansas!  So happy you're not having bad side effects!  :)

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by nan535, Feb 19, 2014
I loved reading the scene you painted with your words. I have often thought similar thoughts as I watch my husband struggle year after year with this insidious virus and its effects.  Here's to that canister of death to that Hep C virus spreading throughout the world...

Wishing you an easy and successful treatment.

Nan

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by mckansas, Feb 21, 2014
Overwhelming fatigue taking a grip and now raised welts on my knees and back that itch like crazy. Coconut oil my old friend.

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by Advocate1955, Feb 21, 2014
My hubby used to take a prescription antihistamine for the itching.  He used Eucerin right after his shower, and then we had a topical cream that we put on the welts.  Some of them blistered, and we put tea tree oil on those.  Drink lots of water.

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by pooh55811, Feb 23, 2014
I used Hydroxyzine for the rash and itching. It is prescription. It worked wonders. Got everything under control.

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by Advocate1955, Feb 23, 2014
Yes, Hydroxyzine.  That's it Pooh.  I couldn't remember the name.  It's a pill.  He also used Triamcinolone ointment.
Advocate1955

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by mckansas, Feb 23, 2014
The coconut oil is doing the trick so far.  If it doesn't contain it I will inquire.  Mainly overwhelming fatigue right now.

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by ejoli, Feb 24, 2014
Yes, that is one of the major problems...or it was for me.  Fatigue!!!  Just sleep when you can. I sleep during the day a lot. I don't go to sleep at night until about 4 or 5 am.  
                    Hang in there!!!    -Libby

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by mckansas, Mar 03, 2014
CBC back and platelets at 50, not bad but totsl neutrophils are .85 which worrIes them.  They're either going to decrease my Peg-Interferon or have me take another weekly shot of something. Will know tomorrow.  

My daughter has an awful cold and sore throat and unfortunately woke up today with crusty eyes,  slight sore throat and difficulty breathing. Smeared mentholatum (sp?) under nose and on chest.  Woke up later and coughed up some yellow phlegm. Good thing I have the pneumonia shot. Hope it holds steady.

Back spasms and joint pain have been worse this last week. Ten weeks left. Yeah!

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by bluebird305, Mar 03, 2014
I may not have understood everything you said, but it is great that you are being treated .  I for one think you are going to be okey because you are to stubborn to let it get the best of you. I am sure you will have your days, but overall you will overcome.  I am rooting for you.  Keep on trucking baby.  Blue  Hi everybody

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by mckansas, Mar 03, 2014
Thanks Blue! Slept most of day away and feeling better.

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by Advocate1955, Mar 05, 2014
Hi mckansas.  Sorry to read that you are neutrophils are down.  This is not unusual and is a side effect of Interferon.  When my hubby was doing his second treatment, it involved daily injections of a variety of Interferon called Consensus Interferon.  His neutrophils dropped down too, and they had him take weekly injections of Neupogen.  It was no big deal, just another weekly injection.
He was a bit susceptible to infections at that time, and if I recall correctly he developed an infection around one of the rashy areas (from treatment), and had to go on antibiotics to treat it.  So just be aware that your immune system is suppressed and it is easier to catch things and harder to fight them.  Hang in there.  You can do this!
Advocate1955

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by ejoli, Mar 13, 2014
Mindy,               What about your hemoglobin?   You have to watch that. It can drop pretty quick and it makes you tired!  But you aren't on interferon are you...you should check it out on your next cbc . It shouldn't drop under 10 and you will start feeling bad as it drops.   Pulling for you !    -Libby

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by mckansas, Mar 13, 2014
Yep I'm on interferon.  Just got new set of blood test trsting fire some new stuff, waiting. So very tired.

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by mckansas, Mar 13, 2014
Latest blood test show negligible potassium, RBC 47 & total neutrophils now at .65. Starting me on neupogen and told me to start taking my potassium prescription like I'm supposed to.  My gut is pretty sensitive to anything these days.

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by ejoli, Mar 13, 2014
  Sorry Mindy,    I had to take neupogen through most of my last tx.  One shot a week at least two days away from the Interferon.   It worked really fast and I never had any side from it.    You hang in there!    -Libby

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by mckansas, Mar 13, 2014
Any increase in energy would be welcome.  

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by mckansas, Mar 14, 2014
So basically this war is being fought on a physical level and I've never experienced such overwhelming fatigue that couldn't be cured by a good nap. I can't nap enough. I am at the point where I force myself after an unending series spent mostly in bed to push myself in to a 4.8 mile dog walk I previously did every other day. Yesterday I forced nyself out to clear sticks and volunteer trees from behind the garage due to a notice from the city regarding non enclosed area maintenance. Since I live within a 1000 ft of the river we are not wanting for vegetation. Anyway,  the point is, I am just so damn tired on this medication.  Whew! Also, there is the nausea thing, gastrointestinal issues, back spasmsand achy joints,  but the pain from abdomen area seems to be improving.  So I look upon that as one of my goals from treatment is to put an end to that constant throbbing pain in my abdomen and ribs from hep c. The nausea and gastrointestinal issues are, well, distressing.

Starting weeek 5 on Sunday, I can't believe how focused you get on dates, thank goodness only 12 weeks of this treatment,  so short for those of you who went the 48 weeks, all I can say is, HOW THE HELL DID YOU DO IT??? An entire year of feeling worse and worse is too much in light of the fact you're already suffering Hep C symptoms. I definitely wouldn't have made it, only 7 more weeks, I'll make it and I'll win. What

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by ejoli, Mar 14, 2014
Yes, you'll make it and WIN!   Still wonder about your red blood cells??? That usually causes overwhelming fatigue.  I'm sorry that you are feeling so lousy....Seven more weeks!  You are over half way!                -Libby


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by mckansas, Mar 15, 2014
Well my RBC are 47, low but manageable I guess. I'm usually around 60.

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by Advocate1955, Mar 17, 2014
I hope the Neupogen helps, so that you are able to fight off infections that come your way.
When my husband was very anemic on treatment #2 (concensus interferon, which was daily injections + a higher dose of ribavirin), they put him on Procrit, another injection to help bring up his rbc.
It is a daily fight, getting through one day at a time, and then pushing on to the next day.  The fatigue was overwhelming for my husband too.  I only encouraged him to get up and take short walks outside, nothing heavy, because his rbc was just too low, and he was too anemic.  I was afraid he would pass out or fall down if he did too much.
Listen to your body.
Advocate1955

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by mckansas, Mar 23, 2014
My neutrophils weed back up to .9 Thursday so I'm holding off until this weeks blood test. I'm feeling a little better,  confused and tired.  Cramping from no potassium but again pills are slowly helping. My hepa says I'm an interesting case seeing as how I've got cirrhosis I should be much sicker but I've responded well to diet and medication for HE. He'd like to use me for a test case regarding whether people can actually regenerate the liver when it's as far gone as mine. He said he'd expected to see all sorts of continuing degradation and a MELD that increased.  I'm very happy regarding this news said I had followed the diet recommendations, craved vanilla yogurt right now with treatment.  He said that's great.  He'd like to do another biopsy in a couple of years if I kick the virus and continue as stable as I have been.  The key is attaining SVR after all is said and done but again he said since I'm treatment naive he expects the best. So...good news! I'd like to add I think it's also due to the fact I exercise, smoked weed and never drank that much.

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by Advocate1955, Mar 23, 2014
Awesome news mckansas!  See what a great job you've done?  You rock.
Advocate1955

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by pooh55811, Mar 23, 2014
Excellent news, McKansas. Wishing you SVR.

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by mzkity, Mar 23, 2014
Oh wow, this is wonderful news. You should be so very proud of yourself! Sounds like your doctor is. Your doing great mckansas! I'm so happy for you!!!!    

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by mckansas, Mar 26, 2014
Nearly 100% check virus free after a few weeks on sovaldi/riba/Peg-Interferon treatment so no big deal everyone.  It's whether you sustain this effect a couple of months later. That's the key. So don't get all excited when you are virus free two weeks into treatment.  It's a non informational blood test that most hepas don't bother with. Wait for the end of treatment and a free months later and then rejoice if you're virus free. Unless you're into cheap thrills.

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by mckansas, Mar 27, 2014
complain of are muscle aches/body aches. You WBC count was 1.0, ANC count was 0.38 and Hemoglobin was 9.9 so I'm taking the Neupogen.

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by ejoli, Mar 27, 2014
So sorry that you are feeling rotten.... Watch that Hemoglobin also. My Dr. started me on Procrit once I was under 10.
                         Keep on hanging on!    -Libby

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by mckansas, Mar 27, 2014
Neupogen. I injected itv went Completely fatigued then shortness of breath.  Felt better in about five minutes but went to bed and slept bbc 3"- hours!

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by mzkity, Mar 28, 2014
That's good, you can always use the rest! :)

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by mckansas, Mar 28, 2014
That's all I do is rest, I swear:)

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by mckansas, Apr 01, 2014
Thanks to my friends! I hope to travel west sometime soon and the anticipation has raised my hopeful outlook on all things! Pay it forward when you can!!!!!

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by Advocate1955, Apr 02, 2014
Rest is always good.  Your body is fighting the virus and the drugs take their toll.  Rest.
Advocate1955

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by mckansas, Apr 02, 2014
Im euphoric regarding the kindness shown me.

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by Advocate1955, Apr 03, 2014
Euphoria while treating?  Hmmm....I don't remember my hubby having that side effect.
Advocate1955

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by mckansas, Apr 03, 2014
Ha ha

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by mckansas, Apr 04, 2014
Latest labs; Your absolute neutrophil count came up to 0.73 and your white blood cell count came up to 1.2 but both are still low enough that you should take another Neupogen injection this week. You should have labs repeated again next week for Week 8- that is the big set of labs (CBC, CMP, and TSH).  The Ribavirin can cause your hemoglobin to decrease  which can in turn cause shortness of breath. We don’t like to decrease this medication if we don’t have to but sometimes we need to based on symptoms patients are having.  Are you short of breath at rest or is it just with activity?

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by Advocate1955, Apr 04, 2014
Shortness of breath is not uncommon when people who are treating become a little anemic.  Did they check your red blood cells?  If it were me, I wouldn't say too much about the shortness of breath, because you don't want them to lower your Ribavirin, if at all possible.

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by mckansas, Apr 07, 2014
Suffering difficulty breathing after last Neupogen shot. I have all the side effects. I was breathless climbing stairs before but now have to sleep propped up. Fever, aches, blotches, can't breathe. Screw that drug. Five weeks left.

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by mckansas, Apr 09, 2014
This is the sucky part of treatment. No energy & no good will give me energy. Just nausea, pain, breathing difficulties and general malaise. Four weeks, 3 1/2 days left!!! No more neupogen. I am not recovering from last shot.

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by Advocate1955, Apr 10, 2014
You are doing super mckansas.  Take it one day at a time.  You can do this.  You shall kill the beast!

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by mzkity, Apr 10, 2014
Hang on! Easy for me to say, huh! The stairs are killer!

Four weeks!! Your doing great!   You'll be so happy to be virus free!!

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by mckansas, Apr 10, 2014
It's the breathlessness n

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by Advocate1955, Apr 10, 2014
Yep, my hubby got pretty anemic on treatment #2, and he was pretty breathless.  I had to walk backwards so he could keep up with me.

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by mckansas, Apr 10, 2014
Thanks for that vision.  I feel like I'm swimming in gelatin with hardly any ooommmph to cough out lungs.

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by Advocate1955, Apr 12, 2014
That's anemia.  When do you do your next labs?

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by mckansas, Apr 12, 2014
I was running a fever of 101.5, vomiting, still trying to clear lungs, yellow phlegm today. I did labs Thursday and continue to drop in all markers. I feel horrible. I agReed take Neupogen on Sunday within an hour of taking Peg-Interferon. Just feel so ill.

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by Advocate1955, Apr 12, 2014
The Neup should help.  Sounds like in addition to anemia you are neutropenic and fighting an infection.  If you haven't already talked to your hepa's office, you should probably give them a call and let them know that you're running a fever and have yellow phlegm.  You may need an antibiotic.  Try to lay low, drink water, and avoid contact with people who may be sick until you hear back from your doc.  Sounds like you might have bronchitis or pneumonia or something?

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by mckansas, Apr 12, 2014
My general doc xrayed my chest Thursday but it wasn't until today I had yellow infected phlegm.can they give you an antibiotic?  

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by mckansas, Apr 12, 2014
Not you me. Ha ha

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by Advocate1955, Apr 12, 2014
Yes, my husband developed a skin infection when he was on treatment a couple of years ago and they had to prescribe an antibiotic.  Sometimes there are specific antibiotics that they might not be able to use depending upon the treatment, but with a fever and yellow phlegm, sounds like an infection that will need antibiotics.  Call the hepa on call at your transplant center.  At least that's what I would do.  Your immune system is suppressed right now, and it's harder for your body to fight infections.


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by mckansas, Apr 12, 2014
I'm so stubborn I'm waiting until Monday unless it gets worse. I'm drinking my herbal teas and hanging in there.  

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by mckansas, Apr 14, 2014
I feel better today. I DID NOT take the Neupogen shot, but I did LIE that I did. I will see what this Thursday's blood test says. I do feel a ton better, thought I was getting pneumonia when phlegm went from white bubbly to dark yellow and thick. That stopped late yesterday and today my temp is normal. Maybe peg-interferon makes me feel better. 3 SHOTS LEFT!!!

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by Advocate1955, Apr 14, 2014
Maybe it was just viral.
Glad you're feeling better!

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by mckansas, Apr 15, 2014
I'm glad also as s I heard there was a  respiratory virus floating aeound.

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by mckansas, Apr 18, 2014
Low hemoglobin and ANC & WBC higher but no Neupogen ahot needed and I'm justified for not taking shot.  I ate eggs instead. Doc lowered my Ribavirin to 2-2X day and 90 cc's of Peg-Interferon instead of 180. Should do better now.

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by Advocate1955, Apr 19, 2014
Treatment is hard.  I'm glad you're past this bump in the road.  Hang in there.

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by mckansas, Apr 27, 2014
Shot 11 today. Oniv more after that and it can't come too soon. We, that are being treated now are their hard core cases who couldn't withstand the 48 week or failed before or like me have cirrhosis and it was dangerous to treat. I try to remind myself of this since around week 8 everything has been downhill. Anemia, breathlessness, fatigue, confusion, fevers, cramps, rash, sensitive scalp. bone pain, muscle pain, now a huge sore on my tongue. Yesterday my fever spiked to 102.7. Just the constant flu is very wearing, not to mention the other effects. I couldn't have made it much further and in fact feel like giving up right now, but only two weeks left. I'm thinking those Mucinex green guys that are smoking cigars and gambling inside my liver are putting up quite the fight. They don't want to go out, but they will die.

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by hepc4Sandi, Apr 30, 2014
Hang in the mckansas, my last shot was on April 25, and I have 1 day left, and these last 2 weeks have been the hardest. It was just the thought that yes, only 2 weeks to go that has gotten me through this. Hopefully we will feel much better in short order. Hang in there!

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by mckansas, May 01, 2014
I hope so. This is killing me. I'm keeping my eye on the calendar!

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by timothy141, May 01, 2014
Sounds like you have had a very rough road, sorry to hear that! There is not much I can add to the feed back you have gotten already. Only from what I have experienced, and lord knows it was a journey for me too. Things have definitely gotten better for me. From posts I have read here and other places most people due recover from treatment... so in one week no more shots for you, and you will start the process of healing. After completing 48 weeks of treatment and being 28 weeks post I count hoe many times I wanted it to just end, but I did not quit and the rewards, slow in coming. NOT LAUGHING A BIT are well worth the battle.
Congratulations to for will power and strength to get through this hell, knowing some of your history before treatment I am amazed at your desire to keep fighting. You truly are a fighter.
Keep up the good fight Dragonslayer.
Tim

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by mckansas, May 01, 2014
Thanks for the encouragement cause I feel like hell.  I couldn't have done the 48 weeks or it would have killed me.  At least they lowered my riba and peg as the anemia is killing me.  I am going to make it somehow.  I was  so good for 8 weeks tho just the last few have been so puking and tiring.  One more shOt!  Dragonslayer! I like that. SVR for us.

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by timothy141, May 01, 2014
Yep I did SVR, waiting for those test results was the worst. Of course I still haven't seen Dr.Prince... couldn't  wait any longer went and picked the results up myself. Every time I called the office all the nurse could/would tell me, "If there is a problem the doctor will call. Even knowing that I was going crazy, so two weeks after my ultra sound and blood draw. I went got proof I was SVR.
If my memory servers me correctly.... and it does because I have kept a journal other than the one on MH. Anyway it was between weeks 8 and 12 I got real sick and did really ever start feeling half way descent until week 27 after my last shot. And now everyday well almost everyday I can see just a little more hope, peep in my step and desire to start the day. All those had been taken from me. I became very despondent and had no joy. But all that is returning. No I am not saying I have recovered 100% but the way I feel I call it a close 60%.
Dragonslayer's yep that's what we are to be sure, some of the most committed people I have ever met. Reminds me of the movie 300 lol. Even my computers name is Dragonslayer.
Hope you have a good night, I am here just a whole less vocal
Tim  

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by Dee1956, May 02, 2014
Hi there, I am so very sorry for what you have been experiencing, I can empathize, sympathize etc.  I remember being breathless.  When I called the doctor telling them I could not catch my breath, they told me to lay down.  I hope you are not trying to over do anything.  It is really easy to over do when every movement leaves you breathless. Please keep the doctor informed.
I am thinking of you praying for you.
Hang in there, it is almost over.  
I understand how hard it is, I did 24 weeks I don't think I could have managed 48.  I was blessed to get the doctor I did who said it would work in 24 or not, he was not subjecting my body to 48   Once it was over I realized I was stronger than I ever thought I could be.
I am thinking of you praying for you.
Hang in there, it is almost over.  We are all rooting for you my dear.

Bless you
Dee

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by Advocate1955, May 03, 2014
Would your doctor be willing to prescribe Procrit to build your red blood cells a bit?
Advocate1955

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by mckansas, May 03, 2014
Nope Neupogen or nuttin' honey. Ha ha. One week left. My hemoglobin is .75 my anc is1.1  I'm'a mess.  But one more week! !!!

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by Advocate1955, May 03, 2014
The Neup helps your WBC, but the Procrit would help your RBC.  Your hgb is pretty low (not unusual or unexpected while treating).  Rest, walk carefully, don't fall.

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by mckansas, May 03, 2014
I fell twice day before yesterday.  I'm not driving at least.  I have a rash that won't stop even with the lotion they prescribed.  My tongue is blistered.  I hate this treatment crap. I vomit if I don't take my anti nausea.  I get leg cramps that are killing.  I get in the shower hot water. . I take potassium and eat bananas.

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by mckansas, May 03, 2014
I still bounce tho.  My friends do the heavy work.  I just sit cause they know I need the cash.

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by mckansas, May 04, 2014
Last shot today! Can you tell I'm excited? Looking forward to feeling better, walking and biking again.

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by Advocate1955, May 04, 2014
Woo hoo! So glad today is your last shot mckansas!  You probably have 7 days of pills left and then all done, right?
Congratulations to you!
Advocate1955

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by mckansas, May 04, 2014
Yes!!!

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by mzkity, May 05, 2014
Yippee!!! :-)

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by Dee1956, May 05, 2014
So  so happy for you!  You did it! Sit down, stop that falling :)

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by mckansas, May 10, 2014
Going to feel better soon, I hope.

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by Dee1956, May 10, 2014
Tes!!1 You will feel better, it just takes time, try to continue to drink water.
I was just stopping by to say hello :)  I am thinking of you

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by mckansas, May 12, 2014
Well, treatment is over, reality back and they turned off my water today for lack of $56. If anyone wants to contribute to the City of Wichita so I can have water until I get my disability check on the 21st I would appreciate it. It's one thing after another. I've ignored my tags since I can't drive and waiting until next week, but the water people caught me by surprise with $14 to my name until next week. My kids don't get paid until next Friday either and we concentrated on electric and gas this time. This *****. Got to find a friend I can get some water from.

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by mzkity, May 12, 2014
Oh dear! I'll try

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by mckansas, May 12, 2014
If you could call them at 316-265-1300, account # 840527-5548 and pay by atm card or debit card or credit card that would be so great. I hate asking but the water is going to be tough for a week and half.

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by mckansas, May 12, 2014
I paid them $350 btw on Friday, but too late to get credit until today. They still said I needed $56 more dollars to turn it on.

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by mckansas, May 13, 2014
What a day.  Tires me out but gonna have water by 4pm today!

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by Advocate1955, May 13, 2014
Wow, mckansas, sorry to hear this.  I didn't see this yesterday.  I'm glad to hear your water will be on today.
You need to rest and get well.  It will take a couple of months for you to feel better, and maybe up to six months for you to really clear all the treatment drugs, but you will feel better.
Advocate1955

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by mckansas, May 13, 2014
Thanks advocate!  I did more yesterday than I have in a week. Rough day that will end in a shower I hope.

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by mckansas, May 23, 2014
The pesky rash endures but anemia is recovering. Walked three miles this week, something I thought I'd never do again as wrapped up in feeling ****** as I was.  Now to wait for August & results of this hell I went thru.

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by mzkity, May 24, 2014
Great!!!  Just don't overdue it. Don't expect to much, your still pretty tanked up with drugs.

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by mckansas, May 24, 2014
I definitely am filled with poison & flushing with as much water as I can. It seemed to affect my kidneys also. That anemia kicks your butt. It's hard to explain just how ****** you feel when on those drugs.

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by Dee1956, May 24, 2014
Hi there, glad to hear you are feeling a bit better, Kity is right, be careful. I know for me that I would begin to feel better then do something extra and would have a set back, very frustrating.  My thoughts are with you, take care, Dee

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by Dee1956, May 25, 2014
I wanted to say I agree with you. No one can understand how hard it is unless they have been through it.
Take care, Dee

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by mckansas, Jun 17, 2014
Updating end of treatment progress, I feel better but still have the rash, mild yet still hanging on and making me scratch like crazy if I don't put on the cream and I either have insomnia or total fatigue sleeping all the time. The pain in my abdomen is still there, thought it would go away but that and muscle cramps still are part of my life. Maybe it's the cirrhosis. I don't know but grateful the treatment is over and hoping for good results in another couple of months.
I would like to work again, but my memory is so crappy I can barely get passed interview questions since I forget what they asked before I finish answering the question and then wonder what the hell I'm talking about. So I guess my memory hasn't returned either, ha. I'll just have to be content to slowly get better.

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by pooh55811, Jun 17, 2014
I wish you felt better. Hopefully, you will gradually feel better as the days go by. I really hope this treatment worked for you. Keep us posted.

Wishing you SVR!

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by mzkity, Jun 18, 2014
Hey good to hear from you! At least your posting. Did you ever take the Atarax (sp) for your itching? It does calm you down so you don't claw yourself in your sleep. Lol!!

Me to...Wishing you SVR    



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by mckansas, Jun 18, 2014
The doc have me some kind of cream not sure of the name.  I do claw myself, ha ha.

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by mckansas, Jun 29, 2014
So many people talk about the leg cramps they experience on treatment and yes, they are horrible. My potassium was extremely low so I was prescribed potassium for relief.  The cramps are so bad they make you cry and I am so happy I have completed treatment and they thankfully have gone away.  Eat foods rich in potassium also as that helps.  I still am so fatigued and now after treatment I'm losing a lot of hair. Hopefully I won't go bald as a latent result from the treatment.

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by mckansas, Jul 09, 2014
My hemoglobin is low again and ammonia is high,  Been getting lots of pain around ribs and lower back.  I guess I'm suffering from lingering affects of treatment but going to hepatologist next week.  Maybe he'll have some solutions as increased lactulose isn't helping.  Perhaps it's the stress. At least my rash finally loosened it's grip.

I'm financially knackered this month,  further slide due to disability and gap in available work for kids living with me.  Lost my car to reposession, got far behind on cell phone and nearly list it Monday but managed to save it,  now the internet went off this morning and the cell phones are under threat again on friday.  So tired of this fight. The hep c/cirrhosis doesn't help with energy and disability pays out once a month and if your bills are due the week before tough luck for you. My daughter got a delay in the start of a new job until August so she is giving plasma and searching for other work to tide us over.  Sorry to complain but it's been a tough ride to the bottom being on disability. I was hoping to feel so much better after treatment that maybe I could get a job but that isn't happening anytime soon. If I could just get my energy back instead of being so fatigued maybe I'd have a better outlook.

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by ejoli, Jul 11, 2014
  Oh Mindy,  that sounds horrible!  Yes the disability isn't much....I think you will feel better soon.  Are you still drinking a lot of water?    This heat doesn't help much.....

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by mckansas, Jul 11, 2014
Drinking a lot of water but you're right,  The heat is awful.I go back to ku med next week so maybe he'll have an idea of when I might feel better again. I would like to try and work.  I'm hanging on to the house with a tight grip as that would be the worst.

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by timothy141, Jul 12, 2014
Sorry to hear you are having such a rough go of it still! I have come along ways and there was a time I felt much the same as you have described. I really haven't a clue how MJ and myself have been able to "keep the lights on" but some how something always seems to work out, and at times that might be at the last moment just before the crash, but it happens. I am thankful to say, being almost 9 months post treatment I have really begun to feel qusa-normal. And although I hope your rebound is quicker than that, there is progress in everyday. It may not feel like it, but I thank God that I can remember the discomforts but I no longer feel them so much, they have become but a distant memory most of the time. And that is my hope for you, that soon you too will be moving forward and what is now will be past.    
Tim & MJ

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by mckansas, Jul 12, 2014
Thanks Tim, I needed that.

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by timothy141, Jul 12, 2014
You are quite welcome, we are praying for you.


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by Advocate1955, Jul 13, 2014
Hi mckansas,
Sorry I haven't posted in a while.  It's been a rough summer.
So glad that you finished treatment, and so glad to hear that you are slowly recovering.  You should start feeling well by about 4-6 weeks after end of treatment.  By about 3 months after treatment you should be feeling fairly well recovered from treatment.  Six months after end of treatment the drugs should have cleared your system, although it appears that some people do have some lasting problems with effects of treatment.  My husband has been through three treatments and he has not had any lasting effects of any of them.
However, Cirrhosis continues to take it's toll because it's already present.  You will still experience some of the effects of Cirrhosis (fatigue, lowered liver function, increased ammonia/HE, leg cramps, prone to infections, etc.).  You will still need to see your hepatologist regularly to manage all of the effects of your ESLD to stay as healthy as you can for as long as you can.
You are an inspiration.  You have come so far in learning about ESLD and Hep C, accepting your disease, fighting it, pushing through, and surviving.  Everyone on our forum should read your story and celebrate you.  Treating your Hep C is a major achievement, now it can no longer damage your liver.  Be very liver friendly, and follow your hepatologist's orders.
Let us know when you're having an immediate problem, like paying for prescriptions, keeping the lights on, and keeping the water on, or buying groceries.  Maybe we can somehow pool together and chip in to help get you through these rough times.  The last thing you need on your mind, when you're trying to recover from treatment and manage ESLD, is to worry about having the lights turned out or the water shut off.
We are all here to help each other.
Advocate1955

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by mckansas, Jul 13, 2014
Thanks Advocate! It had been rough facing this disease and the loss of my former hard working self.  I've had higher expectations in thinking I could jump back into work after treatment since I still feel the same and now worry I haven't cleared the disease at all.  I guess my liver just doesn't process and kick out the poison in a rapid manner like I anticipated.  Losing my hair doesn't help much either. If I make it thru air conditioner season without losing the power I'll be grateful. That and my phone. If the kids could afford their own phone that would help. Things will get better eventually I hope as their job prospects for work are better than mine at this rate. My daughter starts a new nanny job in August and my oldest took the test at the post office and was offered a job in August also so things should look up in 3-4 weeks if all goes well.  I have a garden so we're eating off it right now and that's a help. Tomato and cucumber sandwiches are healthy and tasty.

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by bluebird305, Jul 16, 2014
Hi everyone.  I have finally been approved for treatment with 400mg sovaldi and 300 ribavirin. a day.  I will be getting pills on thursday.  I am scared because I am worried about it causing other problems with my kidneys and blood. I must say after reading Mindy's post I instantly became more grateful that I am not in the same position as she.  I really cant believe that she is showing that kind of strength.  It is like that saying "you never know how strong you are, until being strong is the only choice you have".  Mindy.  I am sorry about all of the losses, like your car especially. That's a biggie. I totally agree with advocate.  If there is any way of helping I would.  My heart goes out to you and all others in the same position.  AND GIRL, if you want to **** and moan, by all means do it.  that is a big part of a support forum to allow others to share their pain and get some relief under such serious conditions.  

Wish I had a green thumb, but I am not allowed to grow food where I live.  Okey SO TIRED  Goodnight all and bless you   Blue

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by mckansas, Jul 16, 2014
So glad you're getting the medication.  Good fight put up by your doc. It's going to be tough but I know you can do it and get cleared. I would just like to feel better for more than a day at a time and possibly go back to work. But we'll see. To bad the publishers clearing house van doesn't pull up and deliverer me relief for my money problems but like I said I've got a house at least and I'm going  to hang on.

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by mckansas, Jul 17, 2014
Got my ultrasound today and it showed two enlarged veins in my liver so have to go in for an endoscopy. Said my pain in abdomen around rib cage could be caused by hairline cracks in ribs from liver pushing against them. Getting a bone density scan also. He went ahead and checked viral load as he said if it's negative there is only about a 1% chance it will recur at 12 weeks post treatment. He also said interferon kills your hair so hair loss will stop as soon as it finally clears my boxy. So I'll know if I have SVR in a week. Can't wait but worried now about varices. Oh well, good trip otherwise.

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by Advocate1955, Jul 18, 2014
So glad you are finding out about the enlarged veins now though.  There are medications that can control the portal hypertension and prevent other problems related to varices.  Glad you and your doc are being proactive.  Best wishes for UND/SVR!  Praying for you.
Advocate1955

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