Aa
Finally My Big Appointment
So... finally I got to see my treating hepatologist.
I left home this morning and decided to take the bus, instead of walking to the hospital... I am almost at the bus stop and the bus is arriving. I start running after the bus, drop my rock crystal pendant twice pick it up twice and the bus leaves in front of my nose... A§§hole...driver... I am in no shape to run at the moment and he did that to me... sukker ... I'm gonna be late, if I wait for the next bus. And I wanted to be there 15 minutes early, to be relaxed...
So I stop a cab. I get to the hospital and take out the little pink card with my name and app. date out and.... I arrived one hour early. I had noted the wrong time in my calendar. 11:15 instead of 11:45.
So I go upstairs and tell the nurses that I'm there, but waaaay too early. I see one of the treating hepatologists is in the room and she chuckles (I recognized her from a photo I've seen) Everyone seems to be in good spirits there. We have a laugh about me being so eager to treat that I even come one hour early. A nurse asks me to take place in the waiting room. We'll call you soon. So I think they'll call me when my appointment is. 3 minutes later a woman comes and calls me. It's the other treating hepatologist.
On our way in to her office she asks me if I prefer to do this in English or Danish. I said I don't mind and she continues in English... very thoughtful of her. We had a great meeting, she came with all the basic stuff she HAS to inform me about and then we got to the real stuff.
She answered each and every question I asked and we discussed treatment and talked about studies etc. She was positive about the outcome of the treatment, as they have over 80% success rate for geno 3 and that is why they follow SOC with treating geno 3.
I start TX on August 19, our wedding anniversary! Definitely a good omen! :-)
So here it is, they treat weight based and my weight swings between 56 and 58:
24 weeks with 180 peg and 800 riba (she does not want to up my dose in the beginning, nor predose riba)
CBC baseline (on the morning before injection1) and every 4 weeks, if I don't have any problems along the way
Appointments every 4 weeks (1 week after the blood draw)
PCR baseline (on the morning before injection1) and at 4 weeks, 12 weeks, 24 weeks,
She said that they do not usually prolongue treatment, as so far studies have not really had a notable percentage of better chance for SVR for geno 3. I asked twice about this, as I was a bit disappointed. What if I don't RVR?
When I mentioned to her that I am partially black American, she said that since that is the case, she WILL consider prolonging treatment if I don't RVR. (She said it is a pity that there has not been done enough research on that matter, as in some other diseases. If they would know what gene it was that causes lesser success rates, one could test the patient and predict from that gene. It is impossible to know, if I inherited my mom's or my dad's gene in that regard.)
Rescue drugs... yes to procrit/eprex but they prefer to do slight pegasys reduction to 135mcg than giving Neupo in case the whites go down. I guess I'm gonna be stocking up on shitake mushrooms :-) just in case
She also okayed my supplements. She okayed me taking vitamin K for my low coagulation factor and 25 mg iron, as my hemo, ferritin, transferring etc.. has been slightly descending over the past 4 months or so. She is monitoring this closely already pre tx, to see if these are helping. All these are in mid range, so nothing not normal, just the tendency. All my bloods are in normal range, except my coagulation factor is low and that's why I could not have a biopsy... High risk of hemorrhage.
So now I am really happy. I know everything I wanted to know and I am in good hands.
Yes, maybe I would have liked to have an extra PCR at 8 weeks, but lets see when the time comes... It's already great that they will take an extra baseline PCR, I just had one done on June 13.
On my way out I made the appointment with the nurse and said goodbye and thanked them. And of course I had to get all mushy. I said that I had waited sooo long for this day and it was a bit overwhelming... I hate when those tears of joy just come and attack me... But that's me...
So on the 19th I will go in to the vampires first, get all the instructions and contact numbers etc from the nurse, go home take my morning Riba (I'll have it for brunch that day) celebrate our wedding anniversary at home nice and cozy and take my shot .... YAY
Without all your help, I would have never been able to get this far, with this confidence and knowledge.
I love you all and thanks for always being there with so much compassion, love, support and humor.
Marcia
I left home this morning and decided to take the bus, instead of walking to the hospital... I am almost at the bus stop and the bus is arriving. I start running after the bus, drop my rock crystal pendant twice pick it up twice and the bus leaves in front of my nose... A§§hole...driver... I am in no shape to run at the moment and he did that to me... sukker ... I'm gonna be late, if I wait for the next bus. And I wanted to be there 15 minutes early, to be relaxed...
So I stop a cab. I get to the hospital and take out the little pink card with my name and app. date out and.... I arrived one hour early. I had noted the wrong time in my calendar. 11:15 instead of 11:45.
So I go upstairs and tell the nurses that I'm there, but waaaay too early. I see one of the treating hepatologists is in the room and she chuckles (I recognized her from a photo I've seen) Everyone seems to be in good spirits there. We have a laugh about me being so eager to treat that I even come one hour early. A nurse asks me to take place in the waiting room. We'll call you soon. So I think they'll call me when my appointment is. 3 minutes later a woman comes and calls me. It's the other treating hepatologist.
On our way in to her office she asks me if I prefer to do this in English or Danish. I said I don't mind and she continues in English... very thoughtful of her. We had a great meeting, she came with all the basic stuff she HAS to inform me about and then we got to the real stuff.
She answered each and every question I asked and we discussed treatment and talked about studies etc. She was positive about the outcome of the treatment, as they have over 80% success rate for geno 3 and that is why they follow SOC with treating geno 3.
I start TX on August 19, our wedding anniversary! Definitely a good omen! :-)
So here it is, they treat weight based and my weight swings between 56 and 58:
24 weeks with 180 peg and 800 riba (she does not want to up my dose in the beginning, nor predose riba)
CBC baseline (on the morning before injection1) and every 4 weeks, if I don't have any problems along the way
Appointments every 4 weeks (1 week after the blood draw)
PCR baseline (on the morning before injection1) and at 4 weeks, 12 weeks, 24 weeks,
She said that they do not usually prolongue treatment, as so far studies have not really had a notable percentage of better chance for SVR for geno 3. I asked twice about this, as I was a bit disappointed. What if I don't RVR?
When I mentioned to her that I am partially black American, she said that since that is the case, she WILL consider prolonging treatment if I don't RVR. (She said it is a pity that there has not been done enough research on that matter, as in some other diseases. If they would know what gene it was that causes lesser success rates, one could test the patient and predict from that gene. It is impossible to know, if I inherited my mom's or my dad's gene in that regard.)
Rescue drugs... yes to procrit/eprex but they prefer to do slight pegasys reduction to 135mcg than giving Neupo in case the whites go down. I guess I'm gonna be stocking up on shitake mushrooms :-) just in case
She also okayed my supplements. She okayed me taking vitamin K for my low coagulation factor and 25 mg iron, as my hemo, ferritin, transferring etc.. has been slightly descending over the past 4 months or so. She is monitoring this closely already pre tx, to see if these are helping. All these are in mid range, so nothing not normal, just the tendency. All my bloods are in normal range, except my coagulation factor is low and that's why I could not have a biopsy... High risk of hemorrhage.
So now I am really happy. I know everything I wanted to know and I am in good hands.
Yes, maybe I would have liked to have an extra PCR at 8 weeks, but lets see when the time comes... It's already great that they will take an extra baseline PCR, I just had one done on June 13.
On my way out I made the appointment with the nurse and said goodbye and thanked them. And of course I had to get all mushy. I said that I had waited sooo long for this day and it was a bit overwhelming... I hate when those tears of joy just come and attack me... But that's me...
So on the 19th I will go in to the vampires first, get all the instructions and contact numbers etc from the nurse, go home take my morning Riba (I'll have it for brunch that day) celebrate our wedding anniversary at home nice and cozy and take my shot .... YAY
Without all your help, I would have never been able to get this far, with this confidence and knowledge.
I love you all and thanks for always being there with so much compassion, love, support and humor.
Marcia
Best wishes to you. It sounds like your doctor half a world away is saying much the same as mine. A reduction in Peg dosage is often a better course than Neupogen especially late in TX. Sounds like you have it all together and are well prepared. I'll pray for the best outcome for you.
Brent
Brent
Good luck to you, Marcia...you're off to a great start. I understand being excited about starting treatment, something very positive about getting this show on the road and moving forward. That attitude of yours will carry you well throughout the ups and downs of treatment. Success to you!
Trish
Trish
Thanks for posting that again and explaining it to me further.... especially the part with the saturated fat... (I always kind of get stuck on the word 'aggregation', kind of go blank about the meaning, maybe because it kind of reminds me of aggravation) :-)
What you posted applies to nonvegetarians...
*Lactovegetarians have altered platelet linoleic and arachidonic acid concentrations in comparison with nonvegetarians.*
Could you please explain how this one relates to the literature you posted, as that is what I am... a lactovegetarian...So I wonder if we metabolize foods in a different way, or if this can be applied to lactovegetarians.
I'm sorry, if I might seem a bit dense, but I am kind of brain fogged since yesterday again. And I don't seem to be able to make sense of it.
I must say that I am a total fan of Virgin Coconut Oil and ONLY cook with it, but in the last month, I have somehow not used as much of it as I usually do. Go figure... maybe that is the culprit...
Thank you soooo much for pointing that out to me. I was already planing to have a table spoon of it with my riba twice a day. Maybe I should already start now doing this. It's also great in smoothies.
VCO is a saturated fat, but a 'good' one. It doesn't up your cholesterol, BUT is actually said to lower it. So I don't know how that would fit in the cholesterol theory. My cholesterol level is 4 SI Units, which is the equivalent to 154.44 in the units you use in the US. So it is in the medium range, I believe.
Thanks for the link... very interesting... It looks like it might not really apply to me though, as I am a 3a... I wonder if it has to do with ca 70% of us 3ers having viral steatosis.
*Thus, having higher LDL or cholesterol levels prior to treatment might indicate a good outcome only for patients with genotype 1 or 2, not for patients infected with genotype 3. This could be a result of alteration in beta-lipoprotein metabolism induced by genotype 3a by interfering with the synthesis of cholesterol in hepatocytes.[21] Although the pretreatment LDL and cholesterol levels were low in patients with genotype 3, those who achieved sustained viral response seemed to have comparatively higher LDL and cholesterol levels than those who did not. The same analysis could not be done for EVR and ETR as our data were biased toward responders, and an analysis with a larger cohort of genotype 3 patients would be needed to further evaluate this in future studies.*
But I will up my cheese intake... for eating it with the riba breakfast.
I went out to have a delicious ice cream a few weeks ago and I could only eat about 8 spoons and had to throw it out. But who knows, as many people say that their taste changes on tx, I might become the junk food nut instead of the organic vegetarian health food nut. If I can find organic junk... :-)
I hope that my post made sense.
Marcia
What you posted applies to nonvegetarians...
*Lactovegetarians have altered platelet linoleic and arachidonic acid concentrations in comparison with nonvegetarians.*
Could you please explain how this one relates to the literature you posted, as that is what I am... a lactovegetarian...So I wonder if we metabolize foods in a different way, or if this can be applied to lactovegetarians.
I'm sorry, if I might seem a bit dense, but I am kind of brain fogged since yesterday again. And I don't seem to be able to make sense of it.
I must say that I am a total fan of Virgin Coconut Oil and ONLY cook with it, but in the last month, I have somehow not used as much of it as I usually do. Go figure... maybe that is the culprit...
Thank you soooo much for pointing that out to me. I was already planing to have a table spoon of it with my riba twice a day. Maybe I should already start now doing this. It's also great in smoothies.
VCO is a saturated fat, but a 'good' one. It doesn't up your cholesterol, BUT is actually said to lower it. So I don't know how that would fit in the cholesterol theory. My cholesterol level is 4 SI Units, which is the equivalent to 154.44 in the units you use in the US. So it is in the medium range, I believe.
Thanks for the link... very interesting... It looks like it might not really apply to me though, as I am a 3a... I wonder if it has to do with ca 70% of us 3ers having viral steatosis.
*Thus, having higher LDL or cholesterol levels prior to treatment might indicate a good outcome only for patients with genotype 1 or 2, not for patients infected with genotype 3. This could be a result of alteration in beta-lipoprotein metabolism induced by genotype 3a by interfering with the synthesis of cholesterol in hepatocytes.[21] Although the pretreatment LDL and cholesterol levels were low in patients with genotype 3, those who achieved sustained viral response seemed to have comparatively higher LDL and cholesterol levels than those who did not. The same analysis could not be done for EVR and ETR as our data were biased toward responders, and an analysis with a larger cohort of genotype 3 patients would be needed to further evaluate this in future studies.*
But I will up my cheese intake... for eating it with the riba breakfast.
I went out to have a delicious ice cream a few weeks ago and I could only eat about 8 spoons and had to throw it out. But who knows, as many people say that their taste changes on tx, I might become the junk food nut instead of the organic vegetarian health food nut. If I can find organic junk... :-)
I hope that my post made sense.
Marcia
Waking up this morning reading your posts... It brought tears to my eyes. I'm touched, love you all.
Marcia
Marcia
Sorry I took so long to respond to this. I have not had regular internet access lately.
Best of luck to you in your treatment. You are very well informed and able to connect emotionally with people and I am sure that will make live much easier for you during treatment.
I want to thank you for all the support you have given me while I was treating. I hope I can do the same for you.
Best of luck,
Eric
Best of luck to you in your treatment. You are very well informed and able to connect emotionally with people and I am sure that will make live much easier for you during treatment.
I want to thank you for all the support you have given me while I was treating. I hope I can do the same for you.
Best of luck,
Eric
I was looking for you in anticipation to your dr visit. Whew finally the big day is coming. We're all here for you. You've done your homework girl and when the tears of joy start to become tears of "what the heck did i get into!" we're here for you
Hugs
ladybuglola
Hugs
ladybuglola
Yeah I'm not suggesting you get a biopsy, just thought I'd pass that clotting info on to you. If you have a low cholesterol level, and specifically a low LDL level (which is very common in vegetarians and is obviously usually a good thing). who knows, that might explain your marginally low clotting factor? Take a look again at what it says:
"Nonvegetarians show changes in platelet function when saturated fatty acids are decreased and P:S ratios are increased platelet aggregation to thromboxane and clot ting activity of platelets is decreased...Saturated fatty acids increase thrombin aggregation and platelet function can be decreased by altering diets....Platelet composition and functional changes can be induced by dietary fat modifications. Saturated fatty acids are most highly associated with the changes in platelet aggregation to thrombin and platelet clotting activity."
So if this source is to be believed, it sounds like if you increased your saturated fat intake, you very possibly could increase your clotting factor. And as I'm sure you already know, you don't have to eat meat in order to get saturated fat into your diet. Coconut oil/milk and macadamia nuts are just a few delicious sources. And of course the objective wouldn't be to permanently raise the level of "bad" fats, but just temporarily elevate them to get clotting where you want it and then when the increased clotting factor is no longer needed, return to the healthier diet that's lower in saturated fats.
Another tangential matter pertaining to saturated fat that you might be interested in, is that patients who have a high pre-tx cholesterol level, and specifically elevated LDL level, were shown to have a very significant edge in achieving their SVR when compared to those with lower pre-tx cholesterol levels. I actually employed this strategy during my own treatment by eating a bunch of fatty food just prior to and during most of my treatment. I was wolfing down pizza, ice cream, whole milk, hamburgers, fried clams, etc. My cholesterol shot way up and stayed that way pretty much all during my treatment. I can't know if it played any role in my SVR-ing, but based on the strongly suggestive evidence spelled out in this study's data, you never know! Here's the link if you're interested in reading it:
http://www.natap.org/2006/HCV/080806_02.htm
"Nonvegetarians show changes in platelet function when saturated fatty acids are decreased and P:S ratios are increased platelet aggregation to thromboxane and clot ting activity of platelets is decreased...Saturated fatty acids increase thrombin aggregation and platelet function can be decreased by altering diets....Platelet composition and functional changes can be induced by dietary fat modifications. Saturated fatty acids are most highly associated with the changes in platelet aggregation to thrombin and platelet clotting activity."
So if this source is to be believed, it sounds like if you increased your saturated fat intake, you very possibly could increase your clotting factor. And as I'm sure you already know, you don't have to eat meat in order to get saturated fat into your diet. Coconut oil/milk and macadamia nuts are just a few delicious sources. And of course the objective wouldn't be to permanently raise the level of "bad" fats, but just temporarily elevate them to get clotting where you want it and then when the increased clotting factor is no longer needed, return to the healthier diet that's lower in saturated fats.
Another tangential matter pertaining to saturated fat that you might be interested in, is that patients who have a high pre-tx cholesterol level, and specifically elevated LDL level, were shown to have a very significant edge in achieving their SVR when compared to those with lower pre-tx cholesterol levels. I actually employed this strategy during my own treatment by eating a bunch of fatty food just prior to and during most of my treatment. I was wolfing down pizza, ice cream, whole milk, hamburgers, fried clams, etc. My cholesterol shot way up and stayed that way pretty much all during my treatment. I can't know if it played any role in my SVR-ing, but based on the strongly suggestive evidence spelled out in this study's data, you never know! Here's the link if you're interested in reading it:
http://www.natap.org/2006/HCV/080806_02.htm
Good luck Marcia!
Your appt. with the doc sounded great!
I hope all goes well and you ride through the tx smoothly
with few bumps in the road. (We'll get that bus driver later!)
enigma
Your appt. with the doc sounded great!
I hope all goes well and you ride through the tx smoothly
with few bumps in the road. (We'll get that bus driver later!)
enigma
Yup the anniversary date is a good sign. Good odds and sounds like a good doc and you are good to go.
It's all good! We'll stay tuned.
Foo
Interesting platelet info mremeet!
It's all good! We'll stay tuned.
Foo
Interesting platelet info mremeet!
Good luck Marcia.Sounds like your ducks are all lined up.Isobella's said, her ducks are quackin.
God Bless,
Tammy
God Bless,
Tammy
Marcia,
You were def. went there prepared and ready to start. Best of luck to you. May your sides be minimal.... I am sure you will do fine.
and you always have us to whine to!
peace
rita
You were def. went there prepared and ready to start. Best of luck to you. May your sides be minimal.... I am sure you will do fine.
and you always have us to whine to!
peace
rita
Yeah, in 2 months I'll be crying tears of pain and desperation instead of tears of joy.... :-)
I'll be crying on your shoulder or shooting you with the biopsy gun... LOL ... Let's take a day at a time. For now I'm still happy....
The clotting problem.... i don't know how big a problem it really is, as one of them was still in the normal range and the other one was just a little bit off. It was just too risky to poke the liver with that gun.
I have noticed that things have gotten better since I take the vit K.... I know it as a fact.... I won't get into details, female matters...
Yes, I am vegetarian.... am I'm not going to start eating meat again....It doesn't seem that my clotting problem is platelet related, as my platelets are fine.
Anyway, I will get into this discussion again with my doc in two weeks.
Marcia
I'll be crying on your shoulder or shooting you with the biopsy gun... LOL ... Let's take a day at a time. For now I'm still happy....
The clotting problem.... i don't know how big a problem it really is, as one of them was still in the normal range and the other one was just a little bit off. It was just too risky to poke the liver with that gun.
I have noticed that things have gotten better since I take the vit K.... I know it as a fact.... I won't get into details, female matters...
Yes, I am vegetarian.... am I'm not going to start eating meat again....It doesn't seem that my clotting problem is platelet related, as my platelets are fine.
Anyway, I will get into this discussion again with my doc in two weeks.
Marcia
Elaine, thank you for caring for me, even when you are going trough the most difficult time in your life. You are so full of love and compassion, may you be rewarded thousandfold!
Marcia
Marcia
You go girl, I really admire your enthusiasm. But I think your enthusiasm will be bit more tempered in another 2 months or so. ;-) Although I'm sure you'll do fine. And another thing I forgot to mention in your other post that you mentioned your low clotting factor. From what I've heard low clotting factors can sometimes be partially caused by a vegetarian diet. And if rcall you either are vegetarian or largely adhere to a veggy diet? Apparently the fat in meat helps the blood platelets glop up together, which I suppose shouldn't be surprising. Here's an excerpt from one link:
http://www.bhj.org/books/diets/chap2.htm
"Lactovegetarians have altered platelet linoleic and arachidonic acid concentrations in comparison with nonvegetarians. Vegans and vegetarians do not differ in serum thromboxane or prostacyclin levels or platelet aggregation. Nonvegetarians show changes in platelet function when saturated fatty acids are decreased and P: S ratios are increased platelet aggregation to thromboxane and clot ting activity of platelets is decreased and response to adenosine diphosphate aggregation is enhanced. Saturated fatty acids increase thrombin aggregation and platelet function can be decreased by altering diets.
Platelets are important in clotting and in the development of the arterial thrombi that underlie most 'heart attacks' due to acute myocardial infarctions. They may also modulate coronary artery disease independently of factors such as smoking, blood pressure and genetics. Platelet composition and functional changes can be induced by dietary fat modifications. Saturated fatty acids are most highly associated with the changes in platelet aggregation to thrombin and platelet clotting activity. One of the theories is that, by decreasing saturated fatty acids as in the vegetarian diet, platelet aggregation and blood clotting changes predisposing to thrombosis will decrease.
Also clotting of a blood vessel depends on the blood fluidity known as "Blood Rheology". Possibly vegetarians have a better than average blood fluidity and this puts them at a lower risk of suffering coronary artery disease."
http://www.bhj.org/books/diets/chap2.htm
"Lactovegetarians have altered platelet linoleic and arachidonic acid concentrations in comparison with nonvegetarians. Vegans and vegetarians do not differ in serum thromboxane or prostacyclin levels or platelet aggregation. Nonvegetarians show changes in platelet function when saturated fatty acids are decreased and P: S ratios are increased platelet aggregation to thromboxane and clot ting activity of platelets is decreased and response to adenosine diphosphate aggregation is enhanced. Saturated fatty acids increase thrombin aggregation and platelet function can be decreased by altering diets.
Platelets are important in clotting and in the development of the arterial thrombi that underlie most 'heart attacks' due to acute myocardial infarctions. They may also modulate coronary artery disease independently of factors such as smoking, blood pressure and genetics. Platelet composition and functional changes can be induced by dietary fat modifications. Saturated fatty acids are most highly associated with the changes in platelet aggregation to thrombin and platelet clotting activity. One of the theories is that, by decreasing saturated fatty acids as in the vegetarian diet, platelet aggregation and blood clotting changes predisposing to thrombosis will decrease.
Also clotting of a blood vessel depends on the blood fluidity known as "Blood Rheology". Possibly vegetarians have a better than average blood fluidity and this puts them at a lower risk of suffering coronary artery disease."
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