Aa
What next?
Well it gets worse I was having this weird headache it was right where ski googles the pain was my eyebrow and cheek bones, so I called and an appointment with my PCP. When I got there I told her I had a transfusion and it did nothing for my hgb and she said something is wrong. She said I know it's a pain but I want a chest xray and a compltet blood workup. I cams home to frantic voicemails.she said Chris you are to stop taking all asthma meds and I have been in touch with Jen Rogers and Jen talked with Kilby and also pulled me off hep c meds. They think I'm having congestive heart failure. Jen left me a VM also telling me at this point it only for a week until we find out what is inflamed and causing this. I'm sure next week will be full of teat. I am also going to ost later.
Thinking about you tonight and hoping you're feeling much better. Please give us an update when you feel up to it. Blessings to you...
rockymoe
I hope you find out something tomorrow. I am wondering how they diagnosed congestive heart failure. Is she basing that on your hemoglobin not coming up when you had the transfusion? It seems that she would have referred you to a cardiologist immediately if that were the case. How low was your Riba dose before this happened? Maybe it is time to pull off the VIC. It is encouraging to remember that can-do-man had a placebo after week 36 of his Boceprevir trial. He reached SVR -- but he was undetectible shortly after adding the VIC so the situation is not the same. Still, maybe you can salvage tx somehow.
I was looking on the spreadsheet and I don't show what your liver disease is. I know you have treated an awfully lot of times, but how is your liver holding up with all this. What were the results your last bx.
I reread an article in Chest magazine on Hep C and lung implications but have to admit it was all over my head. Last week my doctor did say there was a lot of pnemonitis with interferon treatment. It is mentioned in the article as well.
http://chestjournal.chestpubs.org/content/128/4/2882.full
I also reread an article on understanding anemia -- one of the best I have found. This is not to alarm you, but rather to try to find some reasoning in the doctors' theories. This is what happens in advanced anemia --
http://web2.iadfw.net/uthman/unanemia/unanemia_outline.html
"Heart failure may occur. The cardiac output can increase only up to a certain point. After that, if the heart is called on to deliver even more blood per minute, it fails. When this happens the heart is unable to pump through all the blood presented to it by the veins, causing a buildup in pressure there; the blood then backs up into the capillaries. In this high-pressure environment, fluid from the plasma of the blood begins to seep out of the capillaries into the tissues. When this happens in the peripheral tissues of the body, swelling occurs, a condition referred to as edema. This swelling is seen particularly around the ankles (pedal edema) and over the lower back (sacral edema). When edema occurs in the lungs, the fluid not only causes the thin walls of the alveoli to swell, thus stiffening the lung and making inhaling more difficult, but it also fills up the alveolar sacs themselves, interfering with the exchange of oxygen and carbon dioxide. This is called pulmonary edema, and it is a dire event in the clinical course of the severely anemic patient. Without treatment (or with unskillful treatment) such a condition will quickly lead to the patient's demise. "
I hope that getting off the meds is giving you some relief and I hope you feel like posting tomorrow
bean
I hope you find out something tomorrow. I am wondering how they diagnosed congestive heart failure. Is she basing that on your hemoglobin not coming up when you had the transfusion? It seems that she would have referred you to a cardiologist immediately if that were the case. How low was your Riba dose before this happened? Maybe it is time to pull off the VIC. It is encouraging to remember that can-do-man had a placebo after week 36 of his Boceprevir trial. He reached SVR -- but he was undetectible shortly after adding the VIC so the situation is not the same. Still, maybe you can salvage tx somehow.
I was looking on the spreadsheet and I don't show what your liver disease is. I know you have treated an awfully lot of times, but how is your liver holding up with all this. What were the results your last bx.
I reread an article in Chest magazine on Hep C and lung implications but have to admit it was all over my head. Last week my doctor did say there was a lot of pnemonitis with interferon treatment. It is mentioned in the article as well.
http://chestjournal.chestpubs.org/content/128/4/2882.full
I also reread an article on understanding anemia -- one of the best I have found. This is not to alarm you, but rather to try to find some reasoning in the doctors' theories. This is what happens in advanced anemia --
http://web2.iadfw.net/uthman/unanemia/unanemia_outline.html
"Heart failure may occur. The cardiac output can increase only up to a certain point. After that, if the heart is called on to deliver even more blood per minute, it fails. When this happens the heart is unable to pump through all the blood presented to it by the veins, causing a buildup in pressure there; the blood then backs up into the capillaries. In this high-pressure environment, fluid from the plasma of the blood begins to seep out of the capillaries into the tissues. When this happens in the peripheral tissues of the body, swelling occurs, a condition referred to as edema. This swelling is seen particularly around the ankles (pedal edema) and over the lower back (sacral edema). When edema occurs in the lungs, the fluid not only causes the thin walls of the alveoli to swell, thus stiffening the lung and making inhaling more difficult, but it also fills up the alveolar sacs themselves, interfering with the exchange of oxygen and carbon dioxide. This is called pulmonary edema, and it is a dire event in the clinical course of the severely anemic patient. Without treatment (or with unskillful treatment) such a condition will quickly lead to the patient's demise. "
I hope that getting off the meds is giving you some relief and I hope you feel like posting tomorrow
bean
I'm saying a prayer for you....this anemia is just such a terrible thing! It sounds like you are in good hands though. I will be thinking of u and hoping they can quickly get control of this and have you feeling better soon.
best wishes,
Laura
best wishes,
Laura
I will know more tomorrow.They need to find out what's inflamed first and to get my hgb at a higher level. I have to say my first reaction was well I will just take my hep c drugs anyway, but I do fully trust my Drs. knowledge and if he didn't know what to do he would contact some of the best liver docs in Boston.
I can still use my advair and 1 of my inhalers so hopefully that will keep it under control. It's the anemia causing this. I hope when I start back up on the tx meds I don't start with all the sides again.
Thanks for all the support I will keep everyone posted.
I can still use my advair and 1 of my inhalers so hopefully that will keep it under control. It's the anemia causing this. I hope when I start back up on the tx meds I don't start with all the sides again.
Thanks for all the support I will keep everyone posted.
Well, I have been wondering how you were but certainly didn't expect this. So you have a lot of inflammation around your heart and lungs? What will happen if you stop your asthma medicine? I am really worried about you. Please post when you know more. I don't know what the impact will be of stopping tx for a week. You were not clear at week 12 so I just don't know.
Did you do shot 37?
bean
Did you do shot 37?
bean
Congestive Heart Failure (?!) I wonder if your not responding (at all) to the transfusion & the Procrit was a symptom. That, and the cough maybe. Did the x ray show fluid in your lungs? This is just extraordinary news. I hope this all works out and you are able to post soon and let us know how you are doing. We are with you in spirit!!
i'm sorry for your news. i hope you'll be all right. i'm sending you hugs and prayers. wishing you all the best for things to work out for you. belle
I have to admit I am depressed. I am so thankful I made that appointment. Like I said they will probably be running around for test. I will keep everyone posted. I love my fellow heppers.
i know jennifer and doctor kilby know what their doing.....stay in touch....billy
Oh no, I know how upset you must be. I will be praying for you, and hoping to hear good news from you soon.
You have had a good dose of Victrelis at this point. I am thinking when they start treatment again, they will continue with the SOC, since the PI's have tolerance issues~ make sure you write down all your questions, and ask the Doctors, when you go to your appt. This whole thing is happening so suddenly, you must be in shock. We will hope this is a false alarm xo
You have had a good dose of Victrelis at this point. I am thinking when they start treatment again, they will continue with the SOC, since the PI's have tolerance issues~ make sure you write down all your questions, and ask the Doctors, when you go to your appt. This whole thing is happening so suddenly, you must be in shock. We will hope this is a false alarm xo
Have an Answer?
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.
