Don will again start treatment for his Hepatitis C. This will be the third time. The first 2 times he was on an Interferon based drug cocktail that he had to take for an entire year. The second 'cocktail' was so debilitating with side effects, he was unable to work.. but God was so gracious and even though he lost his job, the Lord found him an even better job with less stress!!!
This treatment will be different in many ways. First - no more Interferon!!! Yeah - that means no more shots in his abdomen! It is only a 2 pill a day treatment for 3 months. The only real side effect is it can make him photo sensitive.. burn easily. That will have to be addressed if we get to go to Schlitterbaun with the Grand kids this summer! He should be able to continue working without any issues and he is very happy about that. My hubby is not the kind of guy who will probably ever retire... at least not happily!
Anyway - he had to have a plethera of tests run prior to now and all came out well. His cat scan is clear... well other than enough gall stones to make a nice long necklace for me!! His blood test show that his liver is functioning at an acceptable level and everything else looked pretty good too... by that I do not mean normal for you or I, but normal for his condition. This was great news for us... so we celebrated and went out to eat at the lavishly extravagant restaurant ... Ihop!... ha ha ..
We still have to hammer out the details with the insurance company as the retail cost of these meds is.... are you ready.....???........ One hundered and forty thousand dollars a month.... yes - you read that right... $140,000.00!! I still do not know what our cost will be. We HAD wonderful insurance before - but now the best we could get only covers 80%. Thank you President Obama.
Showing posts with label Hepatitis. Show all posts
Showing posts with label Hepatitis. Show all posts
Thursday, June 26, 2014
Thursday, December 5, 2013
New House News...and Update on Don..
Well - no pictures .. unless you want to see what I have already posted! .. but good news all the same! looks like we will be able to break ground in January!! We have gone from initial drawings, to final drawings, to exterior elevations, to bid set blue prints.
When there is something to take a picture of - I will start posting them.
As for Don..
He will likely be starting treatment yet again (3rd time) in January for his Hepatitis C. The FDA has approved 2 new drugs and from what we were told at our last appointment - they are only 3-4 month treatments, instead of the grueling 12 month programs we have tried in the past. Will keep you updated on this as it unfolds as well.
God Bless you all!!
When there is something to take a picture of - I will start posting them.
As for Don..
He will likely be starting treatment yet again (3rd time) in January for his Hepatitis C. The FDA has approved 2 new drugs and from what we were told at our last appointment - they are only 3-4 month treatments, instead of the grueling 12 month programs we have tried in the past. Will keep you updated on this as it unfolds as well.
God Bless you all!!
Thursday, February 7, 2013
A Difficult Week..
You know how they say that bad things happen in 3's. I do not know where that came from and despite what I am about to share with you... I do not believe it.
Last week was quite difficult for us. It started out with our 4 month post treatment appointment ... where we found out that Don has yet again, relapsed. He is still positive for Hepatitis C. Despite the news, Don went straight back to work after finding out.. I went to the park and walked around and prayed. On my way to the doctors office that morning I told the Lord that no matter what, I trusted Him. My life has been in His hands since my conception and nothing had changed. As I walked through the park, I could feel Him with me.
A few days later we found out that our son-on-law Daren, is going to be deployed for a 6 month tour. Our daughter Emily was understandable ... heartbroken... but she is a strong woman and we will make the best of it, She is going to bring the Grand children down here this summer and we will plan lots of fun things!
and a few days after that, Don called me and told me he was laid off of work... a job he had only had about 6 weeks...
With every incident I made a point to give it all to God. I slept well. I did not find myself in fits of worry or frowning... and after the initial shock - all was calm. I have had this overwhelming feeling of comfort... of being really loved.
..and about losing his job.. well before the day was over, he had an interview with a new company and he starts his new job tomorrow!
Last week was quite difficult for us. It started out with our 4 month post treatment appointment ... where we found out that Don has yet again, relapsed. He is still positive for Hepatitis C. Despite the news, Don went straight back to work after finding out.. I went to the park and walked around and prayed. On my way to the doctors office that morning I told the Lord that no matter what, I trusted Him. My life has been in His hands since my conception and nothing had changed. As I walked through the park, I could feel Him with me.
A few days later we found out that our son-on-law Daren, is going to be deployed for a 6 month tour. Our daughter Emily was understandable ... heartbroken... but she is a strong woman and we will make the best of it, She is going to bring the Grand children down here this summer and we will plan lots of fun things!
and a few days after that, Don called me and told me he was laid off of work... a job he had only had about 6 weeks...
With every incident I made a point to give it all to God. I slept well. I did not find myself in fits of worry or frowning... and after the initial shock - all was calm. I have had this overwhelming feeling of comfort... of being really loved.
..and about losing his job.. well before the day was over, he had an interview with a new company and he starts his new job tomorrow!
Saturday, July 28, 2012
Updates ...
about .. well , everything!
WORKING FROM HOME:
I stared to work from home the day after my training. It was a strange transition and I had computer problems all day. My internet would be fine for aoout 2 hours and then I would get kicked off and not be able to reconnect sometimes for an hour!. All that off time has to be paid back and I was a nervous wreck! I cried once and when I finally took some time for lunch, I took a hot bath trying to calm myself down!
Well after many calls to my help desk and the pnone company, early this week a major defect was discovered in our phone lines and now everthing is great. I love this! I was spending roughly 3 hours a day driving back and forth to work. Now I get a full nights sleep! I watch Joseph Prince every morning. I pray and just feel so much better. If all that was not enough, Don is still on treatment for Hepatitis C. There were so many days where he was really sick and when I left to go to work, I wondered if I should have stayed at home with him. Now that is just not an issue... which brings me to my next Update:
DON'S HEPATITIS C TREATMENT:
Don has a bit less than 8 weeks left for his Hepatitis C treatment. This year seems to have really dragged on a lot slower than the first time he took the year long treatment. With the addition of the new drug added to the cocktail (Incevic) his side effects during the first 3 months were .. well just horrid. He only had to take the Incevic for 3 months. His Hep count has been undetectable since his 1 month check up.. which is outstanding to quote his doctor! Still though, since your blood is in every area of your body, he had to continue the treatment for the full year.
Now, he is lathargic, have extremely depressed White, Red and Platelet counts... Platelets went all the way down to 27,000 (normal is 140,000 to 400,000) which is the lowest ever recorded for him and they did take him off of treatment for 1 week...BUT, Glory Be - we can see the light at the end of the tunnel! He sleeps seemingly 18-20 hours a day and when he is not sleeping, he has little energy to do much. I am thrilled to say that when this is all over, normalcy should return!~
He will have doctors appointments after the treatment obviously, but it is the one at the 6 month mark that we anxiuosly await. At 6 months with a undetectable Hepatitis C count, he is deemed completely healed. His cirrhosised liver at that point could even improve in both function and texture. We have our eyes set on the prize... and that is it!
RIDING ASIDE:
I think most of you who read this blog, also go over to the Riding Aside blog. If not, here is a short quip about that. When Don started his treatment, we decided that we would do anything possible to keep me very involved with the horses. Many marrriages fail when one partner has to go through Hep. C treatments. It is not only physically demanding, but also emotionally. It is MANDATORY that the patients take anti-depressants during treatment.
With my training, it gives me 1 day a week and an occasional horse show that takes me away from the world of doctors, diagnosis, injections and such. Also, since I am quite a physical person, at this time when my husband cannot accompany me in many physical venues, this and taking Zumba classes has solved my restlessness.
I have now taught 3 of my own horses how to work in a sidesaddle and 2 horses that reside at Bluebommet Farm. This is my passion ~ given to my by God!! I am working towards showing Sport, my 5 gaited Saddlebred in the World Championship horse show in August 2013. This event, whether I place or not, will make a pin point in history as there is (so far) no record of a woman who has ridden sidesaddle in the 5 gaited classes at the American Saddlebred World Championship show!
ME PERSONALLY:
Zumba
Like I mentioned above, I started to take Zumba exercise classes with my youngest daughter Joy. I LOVE it!! I now do it twice a week and would love to find another class so I can up that to 3X a week. I will say however, I went to a class at another location recently and it was not very fun at all. It really depends on who the teacher is!
Weight Loss
My initial motive for taking Zumba was to continue to lose the 15 pounds I had gained since my hysterectory. One of my girl friends introduced me to the Dukan diet and when I read about it, I knew it was something I could stick with. That is where my weight loss journey began. I weighed in at 140 when I started and now weigh 131. 6 more pounds to go! I lost about 5 pounds and then kind of plateaued.. until I started this class. Then the weight started coming off again.
Hormones
I am still taking the bio-identical hormones, via cream on my forearms 2 X a day. It is wonderful in the aspect that it stopped the muscle deterioration (sign of internal muscle deterioration is peeing when you sneeze hard or cough!), stopped the hot flashes and night sweats and Don says I am nicer! ha ha.. I'll trust him on that one. I sleep better and although my sex drive has not returned to 100%.. well - at least I have one now!
On the down side, I forget to use it even though I keep it in my bedside table! I have heard about getting an implant that would deliver the hormones at a more consistent rate. I have not looked into that yet. E-mail me if you want more information about this. It is hell to suffer with menapause symptoms! juliesize at yahoo
THE FARM:
Chickens
Last year we sadly had a masacure of our chickens. All but 1 were killed. It is so tempting to let them out to free range, which is what we were doing, that on one of those occasions a predator came in. It was sad. We brought the one lone hen into the barn to live until we were ready to introduce her to some new baby chicks we purchased .. get this ... through the mail! We ordered 20 pullots (sp??) baby girl chicks. The reason we ordered 20 was because we did not think 20 would survive shipping.. but they did. We now have 10 Barred Rock hens and 10 Columbian Rock hens that are just now starting to lay.... OH MY GOSH - what are we going to do with all these eggs when they start laying in full force! I love eggs and because I only eat egg whites, I do go through quite a few of them on my own... but up to 20 a day??? Going to have to hang a sign outside that says Eggs For Sale!
Horses
The only real new horse news is that we sent Brittany (Sport's Mother) back to Stoney (Sport's Father) to be bred. It was a last minute decision, but because the stallion owner was here and offered to haul her back for free as a part of the deal, we sent her to Tennessee. Nothing happening yet.. but hopefully they can tease her into heat one last time this season and we can get a full sibling to the best horse I have ever ever ever bred!
Sheep
We had 3 baby sheep this year...and 2 were a set of twins! Twin sheep are not normally rare for sheep.. unless you are talking about the breed we have, so it was a big exciting deal for us! On the down side, every one of our babies was a ram lamb. We need all ewe lambs next year to make up for this year!
THE FARM:
Close to our heart is the development of this farm. We replaced much of our wood fencing with black improved PVC type fencing and it is just beautiful! We put in an additional outdoor arena and left a large open area for a covered riding arena. We rean electricity to the back of the farm which cost a pretty penny that we were not expecting and planted lots of Red Shummard Oak trees down what will be the road to the back. Still to go is the actual road, a well and to continue on with the house plans. Not sure if the house will proceed the riding arena or the other way around. I do dream of opening up a Sidesaddle Riding School for girls calls ... can you guess... Riding Aside! But then again, I so want a real home. I love our barn-house, but envisioned it only as a transition point into a home large enough for my family to be comfortable in when they come to visit.
Ahh - I will just do my best not to get into the way of any blessings that the Lord has for us and it shall all come to pass!!!
**I know this is a lot to read.. but I have seriously neglected this blog. Maybe now that things are settling down with my work, other things will start to line up as well!
WORKING FROM HOME:
I stared to work from home the day after my training. It was a strange transition and I had computer problems all day. My internet would be fine for aoout 2 hours and then I would get kicked off and not be able to reconnect sometimes for an hour!. All that off time has to be paid back and I was a nervous wreck! I cried once and when I finally took some time for lunch, I took a hot bath trying to calm myself down!
Well after many calls to my help desk and the pnone company, early this week a major defect was discovered in our phone lines and now everthing is great. I love this! I was spending roughly 3 hours a day driving back and forth to work. Now I get a full nights sleep! I watch Joseph Prince every morning. I pray and just feel so much better. If all that was not enough, Don is still on treatment for Hepatitis C. There were so many days where he was really sick and when I left to go to work, I wondered if I should have stayed at home with him. Now that is just not an issue... which brings me to my next Update:
DON'S HEPATITIS C TREATMENT:
Don has a bit less than 8 weeks left for his Hepatitis C treatment. This year seems to have really dragged on a lot slower than the first time he took the year long treatment. With the addition of the new drug added to the cocktail (Incevic) his side effects during the first 3 months were .. well just horrid. He only had to take the Incevic for 3 months. His Hep count has been undetectable since his 1 month check up.. which is outstanding to quote his doctor! Still though, since your blood is in every area of your body, he had to continue the treatment for the full year.
Now, he is lathargic, have extremely depressed White, Red and Platelet counts... Platelets went all the way down to 27,000 (normal is 140,000 to 400,000) which is the lowest ever recorded for him and they did take him off of treatment for 1 week...BUT, Glory Be - we can see the light at the end of the tunnel! He sleeps seemingly 18-20 hours a day and when he is not sleeping, he has little energy to do much. I am thrilled to say that when this is all over, normalcy should return!~
He will have doctors appointments after the treatment obviously, but it is the one at the 6 month mark that we anxiuosly await. At 6 months with a undetectable Hepatitis C count, he is deemed completely healed. His cirrhosised liver at that point could even improve in both function and texture. We have our eyes set on the prize... and that is it!
RIDING ASIDE:
I think most of you who read this blog, also go over to the Riding Aside blog. If not, here is a short quip about that. When Don started his treatment, we decided that we would do anything possible to keep me very involved with the horses. Many marrriages fail when one partner has to go through Hep. C treatments. It is not only physically demanding, but also emotionally. It is MANDATORY that the patients take anti-depressants during treatment.
With my training, it gives me 1 day a week and an occasional horse show that takes me away from the world of doctors, diagnosis, injections and such. Also, since I am quite a physical person, at this time when my husband cannot accompany me in many physical venues, this and taking Zumba classes has solved my restlessness.
I have now taught 3 of my own horses how to work in a sidesaddle and 2 horses that reside at Bluebommet Farm. This is my passion ~ given to my by God!! I am working towards showing Sport, my 5 gaited Saddlebred in the World Championship horse show in August 2013. This event, whether I place or not, will make a pin point in history as there is (so far) no record of a woman who has ridden sidesaddle in the 5 gaited classes at the American Saddlebred World Championship show!
ME PERSONALLY:
Zumba
Like I mentioned above, I started to take Zumba exercise classes with my youngest daughter Joy. I LOVE it!! I now do it twice a week and would love to find another class so I can up that to 3X a week. I will say however, I went to a class at another location recently and it was not very fun at all. It really depends on who the teacher is!
Weight Loss
My initial motive for taking Zumba was to continue to lose the 15 pounds I had gained since my hysterectory. One of my girl friends introduced me to the Dukan diet and when I read about it, I knew it was something I could stick with. That is where my weight loss journey began. I weighed in at 140 when I started and now weigh 131. 6 more pounds to go! I lost about 5 pounds and then kind of plateaued.. until I started this class. Then the weight started coming off again.
Hormones
I am still taking the bio-identical hormones, via cream on my forearms 2 X a day. It is wonderful in the aspect that it stopped the muscle deterioration (sign of internal muscle deterioration is peeing when you sneeze hard or cough!), stopped the hot flashes and night sweats and Don says I am nicer! ha ha.. I'll trust him on that one. I sleep better and although my sex drive has not returned to 100%.. well - at least I have one now!
On the down side, I forget to use it even though I keep it in my bedside table! I have heard about getting an implant that would deliver the hormones at a more consistent rate. I have not looked into that yet. E-mail me if you want more information about this. It is hell to suffer with menapause symptoms! juliesize at yahoo
THE FARM:
Chickens
Last year we sadly had a masacure of our chickens. All but 1 were killed. It is so tempting to let them out to free range, which is what we were doing, that on one of those occasions a predator came in. It was sad. We brought the one lone hen into the barn to live until we were ready to introduce her to some new baby chicks we purchased .. get this ... through the mail! We ordered 20 pullots (sp??) baby girl chicks. The reason we ordered 20 was because we did not think 20 would survive shipping.. but they did. We now have 10 Barred Rock hens and 10 Columbian Rock hens that are just now starting to lay.... OH MY GOSH - what are we going to do with all these eggs when they start laying in full force! I love eggs and because I only eat egg whites, I do go through quite a few of them on my own... but up to 20 a day??? Going to have to hang a sign outside that says Eggs For Sale!
Horses
The only real new horse news is that we sent Brittany (Sport's Mother) back to Stoney (Sport's Father) to be bred. It was a last minute decision, but because the stallion owner was here and offered to haul her back for free as a part of the deal, we sent her to Tennessee. Nothing happening yet.. but hopefully they can tease her into heat one last time this season and we can get a full sibling to the best horse I have ever ever ever bred!
Sheep
We had 3 baby sheep this year...and 2 were a set of twins! Twin sheep are not normally rare for sheep.. unless you are talking about the breed we have, so it was a big exciting deal for us! On the down side, every one of our babies was a ram lamb. We need all ewe lambs next year to make up for this year!
THE FARM:
Close to our heart is the development of this farm. We replaced much of our wood fencing with black improved PVC type fencing and it is just beautiful! We put in an additional outdoor arena and left a large open area for a covered riding arena. We rean electricity to the back of the farm which cost a pretty penny that we were not expecting and planted lots of Red Shummard Oak trees down what will be the road to the back. Still to go is the actual road, a well and to continue on with the house plans. Not sure if the house will proceed the riding arena or the other way around. I do dream of opening up a Sidesaddle Riding School for girls calls ... can you guess... Riding Aside! But then again, I so want a real home. I love our barn-house, but envisioned it only as a transition point into a home large enough for my family to be comfortable in when they come to visit.
Ahh - I will just do my best not to get into the way of any blessings that the Lord has for us and it shall all come to pass!!!
**I know this is a lot to read.. but I have seriously neglected this blog. Maybe now that things are settling down with my work, other things will start to line up as well!
Saturday, June 16, 2012
Venting..
Don has an abcessed tooth. It is not as simple as it sounds. The meds he is on have been hard on his teeth. Since his platelet count is so low, he cannot have an extraction done in the dentists office. He has to be checked into a hospital and have 1 or 2 platelet transfusions prior to the extraction, have an IV of antibiotics and spend the night to make sure the bleeding is completely stopped before returning home. This also cannot be done in a regional hospital, but must be done in the Medical Center in Houston. After our apointment with the liver doctor, we had to go and see a dental surgeon. He gave Don 3 prescriptions and we made arrangements to go to the hospital. I thought we were all set to get it taken care of until we found out the bad news.... our insurance company denied the claim prior to the surgery. I was more than angry. A dentist will not touch Don and the hospital will not allow us to check in unless the insurance will cover it...so here my poor husband sits with an abcessed tooth, wigged out on medication. To top it off, for some reason, Don is now running a fever. I do not know if it is separate or something having to do with the tooth - but he has been in a bad way all weekend. Don had his blood work done again recently and again his platelets dropped - now down to 32,000. Now I understand why he has been getting nose bleeds almost daily. The dental surgeons office is fighting for us. They are sending the blood work back to the insurance company as reason for this needing to be done in the hospital and not as a simple dentist office procedure. Please keep Don in your prayers.
Tuesday, June 12, 2012
Zumba..
..was amazingly fun!! Can't wait to go back. Next class is on Thursday night but Don has to go into the hospital for a molar extraction. His platelets are so low that he has to have a transfusion before and after the extraction as well as an antibiotic IV. He has to stay over night to make sure he clots up. We should be home on Friday.
Thank you Joy for staying at the farm and taking care of ALLLLLL of the animals!
Thursday, January 5, 2012
Belated Happy New Year!
Thank you for your well wishes. I am feeling much better now!Also wanted to give an update on Don. He is only 1 week away from completing a drug called Incevic. Incevic is one of three drug therapies he is on for the treatment of Hepatitis C. While he must continue to take the Interferon and Ribiviron for an additional 9 months, the omission of Incevic should help him to feel better. He now tells me that if he had known how severe the side effects were from the 3 drug combination, he does not know if he could have faced it... as the side effects have been HORRID...much to gruesome to describe! Please continue to lift him up in prayer! HUGS!!
Tuesday, December 20, 2011
Great News!
Don's platelet count rose a whopping 17,000 up to 43,000!!! He is now back on the full dose of Interferon!!
Thank You Jesus!!!
Thank You Jesus!!!
Tuesday, December 13, 2011
Don's Platelet Count..
went up by 3,000 to 34,000. Thank You Jesus!!! While it is not the big jump I was praying for, we are going in the right direction! Tonight he will take a 3/4 dose of his injection and we will repeat the blood work next Monday.
Monday, December 12, 2011
Blood Work..
..being drawn again today.. We will find out tomorrow if the reduction in medication allowed his platelet count to increase. I just know it has and that he can return to the full dose!
Tuesday, December 6, 2011
A Bit of a Scare..
Don had an appointment yesterday with one of his Hepatologist's. While we were there, the doctor told us that his platelet level had dropped to a dangerously low count of 26,000. Normal is 140,000. WE WERE SHOCKED! A level in the very low 20 thousands can result in unprovoked internal hemorrhaging..and even to a person who is not educated in the medical field can figure out what that could mean..
One of three things were going to happen:
1. His count rises significantly and he will be allowed to stay on the full dose of Hepatitis C treatment.
2. His count stays the same or goes up or down just a little and they will tell him to reduce the amount of medication..
3. or his count drops significantly and they will take him off of the treatment and we would have gone through all of this for nothing..
He was sent to have blood work done again that day and instructed NOT to take his injection that night; instead to wait for the results and following instructions. It was a grueling wait until 1PM CST today before I could call and get the information. I just sat at my desk and TRIED to do my work..
The clock w a s s o o o o s l o o o w w w w ....
I went out to my car, where it was warm private and quiet. I stopped and got very quiet before the Lord and whispered, "I know that all things work for good for those who love the Lord.. and I do love you.. and I know how much You love me.. so here it goes.."
I picked up the phone and called the doctors office. the receptionist answered and knew exactly who I was. Was that a good thing, I thought to myself? She placed me on hold in order to get the nurse in charge of Don's case to give us the information. What seemed to be an eternity went by as I sat there.. on hold. The car was warming up to an almost uncomfortable temperature before she came onto the line.
"Mrs. Size?"
"Yes" - I answered very quickly.
"Hi. I am Margaret, the nurse in charge of your husbands case." she said very politely.
I wanted to scream - WHO CARES - JUST GIVE ME THE RESULTS!
If that was not bad enough, I had to wait while she signed onto the computer. I could her her clicking away as she spoke of our chilly weather. My heart was racing.
"Hummm, it looks like his platelet count is at 31,000 as of yesterday." she offered.
"Oh", I responded. "Then that is wonderful.. that is 5000 more than the last count! So, he can continue taking his full dose of medicine - right?"
"No Ma'am. Please tell him not to take his injection until I speak with his doctor and I get back with you."
* * * * * * * * *
We just heard that the platelet increase was not enough to stay on the full dose. He will be reduced to 1/2 dose and must go back for blood work again late this week.
Please keep Don in your prayers!!
One of three things were going to happen:
1. His count rises significantly and he will be allowed to stay on the full dose of Hepatitis C treatment.
2. His count stays the same or goes up or down just a little and they will tell him to reduce the amount of medication..
3. or his count drops significantly and they will take him off of the treatment and we would have gone through all of this for nothing..
He was sent to have blood work done again that day and instructed NOT to take his injection that night; instead to wait for the results and following instructions. It was a grueling wait until 1PM CST today before I could call and get the information. I just sat at my desk and TRIED to do my work..
The clock w a s s o o o o s l o o o w w w w ....
I went out to my car, where it was warm private and quiet. I stopped and got very quiet before the Lord and whispered, "I know that all things work for good for those who love the Lord.. and I do love you.. and I know how much You love me.. so here it goes.."
I picked up the phone and called the doctors office. the receptionist answered and knew exactly who I was. Was that a good thing, I thought to myself? She placed me on hold in order to get the nurse in charge of Don's case to give us the information. What seemed to be an eternity went by as I sat there.. on hold. The car was warming up to an almost uncomfortable temperature before she came onto the line.
"Mrs. Size?"
"Yes" - I answered very quickly.
"Hi. I am Margaret, the nurse in charge of your husbands case." she said very politely.
I wanted to scream - WHO CARES - JUST GIVE ME THE RESULTS!
If that was not bad enough, I had to wait while she signed onto the computer. I could her her clicking away as she spoke of our chilly weather. My heart was racing.
"Hummm, it looks like his platelet count is at 31,000 as of yesterday." she offered.
"Oh", I responded. "Then that is wonderful.. that is 5000 more than the last count! So, he can continue taking his full dose of medicine - right?"
"No Ma'am. Please tell him not to take his injection until I speak with his doctor and I get back with you."
* * * * * * * * *
We just heard that the platelet increase was not enough to stay on the full dose. He will be reduced to 1/2 dose and must go back for blood work again late this week.
Please keep Don in your prayers!!
Wednesday, November 9, 2011
BEST NEWS EVER!
We just returned from the doctors and the blood work drawn at 2 weeks after he started treatment is ALREADY showing -0- count for the Hepatitis C!!!!! ZERO!!
That does not mean that Don gets to stop his meds though. Since this virus is in his blood and your blood saturates every single part of your body, they have to make sure that every single little last Hep.C cell is dead and gone so that it will not reproduce...but in the doctor's words... for Don to have gone from a count of over 100,000 to 0 in just 2 weeks - especially for the fact that it took him 5 months to get to zero count the last time he was treated... "is just remarkable!"
As for the lower back pain, although it could be a small kidney stone, it is more likely muscle spasms...just another lovely side effect from the meds.
Woooo Hoooo... We are so thrilled to get this behind us!!!
That does not mean that Don gets to stop his meds though. Since this virus is in his blood and your blood saturates every single part of your body, they have to make sure that every single little last Hep.C cell is dead and gone so that it will not reproduce...but in the doctor's words... for Don to have gone from a count of over 100,000 to 0 in just 2 weeks - especially for the fact that it took him 5 months to get to zero count the last time he was treated... "is just remarkable!"
As for the lower back pain, although it could be a small kidney stone, it is more likely muscle spasms...just another lovely side effect from the meds.
Woooo Hoooo... We are so thrilled to get this behind us!!!
Monday, October 31, 2011
What a Wonderful Blessing!
..or maybe I should say BLESSINGS! First of all it is Don's Birthday today.
HAPPY BIRTHDAY SWEETIE!!
Secondly, today is Don's last day at work as he will be taking medical leave to complete this year of Hepatitis C treatment and it has been making his body very tired.
..and last but certainly not least, Don and I have depended more and more on Bible Studies through our Satellite TV and although there are many good preachers, we really fell in love with Pastor Joseph Prince. He not only preaches about New Testament Grace of Jesus, but because he is proficient in both Hebrew, the language the Old Testament was first written in, and Greek, which is the language the New Testament was first written in, he is gifted with a wonderful way of opening up the true meaning of the scriptures. I can honestly say that I have never listened to one of his sermons without learning something!
Anyway, for the first time, Pastor Prince came to the United States to preach and you guessed it - he came to Houston, a mere 75 miles away for us. Some friends packed the car with us and off we went for the Sunday morning service. As expected, the Pastor delivered yet another eye (and heart!) opening sermon that touched us all. As it was coming to a close though and we were praying, I was praying for something completely different and all of a sudden it was like a movie started in my mind. I saw a completely cirrhosised liver transform into a beautiful healthy one! I KNEW the message was from God. It felt completely tangible .. like something I could actually hold on to!! I now have a renewed sense of hope and faith that Don is going to get well.
Thank you Lord.. that you care so much not only to touch Don's body... but to touch and settle my restless mind!!
HAPPY BIRTHDAY SWEETIE!!
Secondly, today is Don's last day at work as he will be taking medical leave to complete this year of Hepatitis C treatment and it has been making his body very tired.
..and last but certainly not least, Don and I have depended more and more on Bible Studies through our Satellite TV and although there are many good preachers, we really fell in love with Pastor Joseph Prince. He not only preaches about New Testament Grace of Jesus, but because he is proficient in both Hebrew, the language the Old Testament was first written in, and Greek, which is the language the New Testament was first written in, he is gifted with a wonderful way of opening up the true meaning of the scriptures. I can honestly say that I have never listened to one of his sermons without learning something!
Anyway, for the first time, Pastor Prince came to the United States to preach and you guessed it - he came to Houston, a mere 75 miles away for us. Some friends packed the car with us and off we went for the Sunday morning service. As expected, the Pastor delivered yet another eye (and heart!) opening sermon that touched us all. As it was coming to a close though and we were praying, I was praying for something completely different and all of a sudden it was like a movie started in my mind. I saw a completely cirrhosised liver transform into a beautiful healthy one! I KNEW the message was from God. It felt completely tangible .. like something I could actually hold on to!! I now have a renewed sense of hope and faith that Don is going to get well.
Thank you Lord.. that you care so much not only to touch Don's body... but to touch and settle my restless mind!!
Friday, October 14, 2011
Doctor's Appointment..
Yesterday we had a 9:30am appointment....ALL THE WAY DOWN TO PEARLAND! No sleepy in for us!
Anyway - we told the doctor that Don started his medication and what happened on Sunday. He told us that since Don had diarrhea that whole day and was running a fever, it was likely he was quite dehydrated. Dehydration in a patient such as Don can be very very dangerous. It caused ammonia type gasses to build up in his brain and therefore - confusion and grogginess. He wrote us out yet another drug prescription (this one $1000.00 a month if the insurance does not cover it!) and told Don to start drinking 110 OZ. of water every day! 110 oz??? I think that is about what the horses drink!!! We are going to have to move the poor boys bed right into the bathroom~!
On the good side..
1. GOD RULES!!!
2. Keeping him hydrated can avert any more episodes like the one we just went through.
3. It will likely only be a threat right after Don takes his injection on Saturday night - so we know when to really watch for it.
4. Don has disability insurance through his work.
5. By Wednesday Don was completely back to normal!
On the down side..
1. If it happens again, it can be so bad that Don may not know where he is.
2. He should look into taking medical leave from his job.
3. We are waiting to find out if disability kicks in 3 or 6 months after he is off.
Anyway - we told the doctor that Don started his medication and what happened on Sunday. He told us that since Don had diarrhea that whole day and was running a fever, it was likely he was quite dehydrated. Dehydration in a patient such as Don can be very very dangerous. It caused ammonia type gasses to build up in his brain and therefore - confusion and grogginess. He wrote us out yet another drug prescription (this one $1000.00 a month if the insurance does not cover it!) and told Don to start drinking 110 OZ. of water every day! 110 oz??? I think that is about what the horses drink!!! We are going to have to move the poor boys bed right into the bathroom~!
On the good side..
1. GOD RULES!!!
2. Keeping him hydrated can avert any more episodes like the one we just went through.
3. It will likely only be a threat right after Don takes his injection on Saturday night - so we know when to really watch for it.
4. Don has disability insurance through his work.
5. By Wednesday Don was completely back to normal!
On the down side..
1. If it happens again, it can be so bad that Don may not know where he is.
2. He should look into taking medical leave from his job.
3. We are waiting to find out if disability kicks in 3 or 6 months after he is off.
Wednesday, October 12, 2011
Don Started His Treatment..
..last Saturday night with a handful of pills and an injection into his abdomen. I was not there with him. We discussed it at length. His medicine did not show up in time for him to be able to start it the weekend before...and I had been training for a horse show for months - which obviously and painfully for me, fell on this last weekend. Don was insistent about me going. I knew he had given himself shots the last time he took the treatment.. but I still wanted to be there with him. There is something very personal and sacred about it. I cannot explain that ..
We kept in constant contact over the phone. I spoke with him right after he had administered the shot and he said it was so unnatural... like throwing a dart at yourself! We both laughed. Don has a great sense of humor.
My last class was late Sunday afternoon. It took more time to get packed up and on the road, but we were on our way by 5:30PM. Shortly after we headed out, I spoke to Don. He sounded horrible.. groggy.. off balance.. and very very tired. I let him go and told him I would call when I was close to home.
Three hours later I called ... no answer. I called several more times within the next 30 minutes and still no answer. I could tell by the long beep of our machine that none of my messages had been retrieved either. I felt uncomfortable.
I rolled into the driveway around 9:20PM. The gate was closed. No extra outside lights were on. I pulled the truck and horse trailer into our drive and got out, leaving the horses in the trailer, to go and check on Don. I opened our front door and was met by the stench of a cat liter box that needed cleaning badly. I then noticed that the dogs, who had just raced out the door between my legs, had had an accident on the floor.
I did not remove my boots. I dropped my keys on the ledge and ran to the back of the house. Don was laying there with the phone right beside his head. He looked very ill. I leaned down over him and (I won't lie) I was relieved to feel his breath on my face. I touched his chest and said his name. Raising my voice, I again said his name. He only slightly opened his eyes to meet mine without saying a word.
"Are you okay?" I asked.
Nodding he said,"Every muscle and bone in my body aches Julie. I forgot how horrible this medicine really is."
He slowly rose up into a sitting position. I sat beside him for a few minutes and told him how scared I was.
It is going to be a long year. Please remember Don in your prayers.
We kept in constant contact over the phone. I spoke with him right after he had administered the shot and he said it was so unnatural... like throwing a dart at yourself! We both laughed. Don has a great sense of humor.
My last class was late Sunday afternoon. It took more time to get packed up and on the road, but we were on our way by 5:30PM. Shortly after we headed out, I spoke to Don. He sounded horrible.. groggy.. off balance.. and very very tired. I let him go and told him I would call when I was close to home.
Three hours later I called ... no answer. I called several more times within the next 30 minutes and still no answer. I could tell by the long beep of our machine that none of my messages had been retrieved either. I felt uncomfortable.
I rolled into the driveway around 9:20PM. The gate was closed. No extra outside lights were on. I pulled the truck and horse trailer into our drive and got out, leaving the horses in the trailer, to go and check on Don. I opened our front door and was met by the stench of a cat liter box that needed cleaning badly. I then noticed that the dogs, who had just raced out the door between my legs, had had an accident on the floor.
I did not remove my boots. I dropped my keys on the ledge and ran to the back of the house. Don was laying there with the phone right beside his head. He looked very ill. I leaned down over him and (I won't lie) I was relieved to feel his breath on my face. I touched his chest and said his name. Raising my voice, I again said his name. He only slightly opened his eyes to meet mine without saying a word.
"Are you okay?" I asked.
Nodding he said,"Every muscle and bone in my body aches Julie. I forgot how horrible this medicine really is."
He slowly rose up into a sitting position. I sat beside him for a few minutes and told him how scared I was.
It is going to be a long year. Please remember Don in your prayers.
Saturday, October 1, 2011
God Worked Another Miracle!!
Our health insurance company is in a contract dispute with Walgreen's. After our last doctor's appointment, we knew Don's new medicine was going to be called in and ordered. It will be shipped directly to our house once a month. Last Thursday I stared to get e-mails from Walgreen's telling me that the insurance company was not going to pay for the medicine and that all together (3 prescriptions) were going to cost us over $23,000.00 a month! Chump change - huh...
I know better than to fret. I have walked down this road with God before ... and He fixes it every single time. This was no exception. Out of the blue, the pharmacist called me at work to tell me that not only was she personally working on this case... but that she was also trying to reduce our co-pay for the meds all the way down to .... are you ready??
..are you really ready to hear this???
I mean - it is so awesome....
Okay - okay....
for $5.00!!!!! From over $23,000.00 a month ...to $5.00.
Now - I don't know about you... but I think THAT SMELLS LIKE GOD!!!!
I know better than to fret. I have walked down this road with God before ... and He fixes it every single time. This was no exception. Out of the blue, the pharmacist called me at work to tell me that not only was she personally working on this case... but that she was also trying to reduce our co-pay for the meds all the way down to .... are you ready??
..are you really ready to hear this???
I mean - it is so awesome....
Okay - okay....
for $5.00!!!!! From over $23,000.00 a month ...to $5.00.
Now - I don't know about you... but I think THAT SMELLS LIKE GOD!!!!
Friday, September 23, 2011
Today's Appointment..
..was long but encouraging. We took a class on a new drug Don will be taking to fight off his Hepatitis C. It raises the cure rate to 75-80% which is really substantial. Our appointment was scheduled for 10:45. We arrived about 3 minutes past and as usual, the waiting room was packed. Almost 45 minutes later, we were called into an exam room. I was thinking it would be held in a class room .. maybe with other patients. I was wrong.
Once in the exam room, we were handed a large stack of papers to both read and fill out. Not only was this basic drug information, but a slew of questionnaires about how he was currently feeling.. both physically and emotionally. One thing I can always count on from Don is having a positive attitude. In fact, looking back, I can only recall one time where he had a look of defeat on his face. That was the day we found out he had relapsed. That information sucked the oxygen right out of his lungs. It was not long though before he was back to being his jovial self...
It took us a good 30 minutes to both read and fill out all of the paperwork and it was then that one of the doctors came in to talk to us about it all. The previous medicine Don was on (interferon/ribavirn) only killed the Hepatitis C virus. The additional drug (? can't remember what it is called) stops the Hepatitis C from reproducing. For this reason, he will only take the new drug for 3 months along with the old drugs... and then continue the old drugs for an additional 9 months.
The list of side effects is daunting to say the least. Don suffered so the last time he was treated, it is hard for me to imagine not only him doing it all over again, but now along with even more torturous symptoms. One drug must be administered via an abdominal injection, another, in pill form must be taken every morning and night and yet another must be taken STRICTLY every 8 hours and must be consumed with food containing 20 grams of fat. If he goes longer than 1 hour past the scheduled time to take this last medicine, he misses the window...YES - it is that strict. For this reason, they have given him an alarm to carry with him EVERYWHERE. He will have to have weekly blood work done keeping a close eyes on his white, red and platelet counts. These drugs effect all of them. Please pray for him. We are looking to start the medicine on the 08 October. IF the drugs come next week, we will start them on the first of October, but that is highly unlikely since they are going to be mailed to us monthly.
Once in the exam room, we were handed a large stack of papers to both read and fill out. Not only was this basic drug information, but a slew of questionnaires about how he was currently feeling.. both physically and emotionally. One thing I can always count on from Don is having a positive attitude. In fact, looking back, I can only recall one time where he had a look of defeat on his face. That was the day we found out he had relapsed. That information sucked the oxygen right out of his lungs. It was not long though before he was back to being his jovial self...
It took us a good 30 minutes to both read and fill out all of the paperwork and it was then that one of the doctors came in to talk to us about it all. The previous medicine Don was on (interferon/ribavirn) only killed the Hepatitis C virus. The additional drug (? can't remember what it is called) stops the Hepatitis C from reproducing. For this reason, he will only take the new drug for 3 months along with the old drugs... and then continue the old drugs for an additional 9 months.
The list of side effects is daunting to say the least. Don suffered so the last time he was treated, it is hard for me to imagine not only him doing it all over again, but now along with even more torturous symptoms. One drug must be administered via an abdominal injection, another, in pill form must be taken every morning and night and yet another must be taken STRICTLY every 8 hours and must be consumed with food containing 20 grams of fat. If he goes longer than 1 hour past the scheduled time to take this last medicine, he misses the window...YES - it is that strict. For this reason, they have given him an alarm to carry with him EVERYWHERE. He will have to have weekly blood work done keeping a close eyes on his white, red and platelet counts. These drugs effect all of them. Please pray for him. We are looking to start the medicine on the 08 October. IF the drugs come next week, we will start them on the first of October, but that is highly unlikely since they are going to be mailed to us monthly.
Wednesday, September 21, 2011
Getting Closer..
..to the date when Don can start his Hepatitis C treatment... or should I say our second try and new drug combo to treat it! We went to an appointment Monday. The doctor advised that he needed to see am Ophthalmologist to have a through eye exam since one of the MANY complications of the drugs was (gulp) retina detachment! We knew that Don had a retina tear and that was a concern... Were they now, after everything we have been through, going to tell us he was ineligible for the new drug treatment?
After seeing the Ophthalmologist, we were advised that the retina tear was as a result of an old injury and should not get any worse! The final say-so comes from the Liver doctor though and we will again see him this Friday when we return to the office for our class about Victrelis - the newly approved Hepatitis C drug.
I may be being overly optimistic here, but I think Don will start the new medicine in Early October. He will be on it for 12 months.
After seeing the Ophthalmologist, we were advised that the retina tear was as a result of an old injury and should not get any worse! The final say-so comes from the Liver doctor though and we will again see him this Friday when we return to the office for our class about Victrelis - the newly approved Hepatitis C drug.
I may be being overly optimistic here, but I think Don will start the new medicine in Early October. He will be on it for 12 months.
Friday, September 2, 2011
Back to Square One?
Well after an entire lunch time spent on the phone yesterday with the doctors offices, it seems they have completely changed their minds and are not going to do any kind of surgery on Don, deeming it to risky. Sure wish they could have told us that 3 months ago! Instead he is scheduled for 1 more doctors office appointment on the 19th of September and then on the 23rd we are going to the Victrelis class.
Victrelis is the new drug he will be taking along with the old "cocktail" of drugs. It was recently approved by the FDA and increases the chance of cure from Hepatitis C from 50 to 70%. Sadly it has it's own list of obscene side effects.. so much so that the company that manufactures the drug requires the recipients to take this class before they are allowed to use the medicine! I am concerned that it will scare Don. Please continue to pray for him.
This is what we know about the drug:
Blood problems. VICTRELIS can affect your bone marrow and cause low red blood cell, and low white blood cell, counts. In some people, these blood counts may fall to dangerously low levels. If your blood cell counts become very low, you can get anemia or infections.
The most common side effects of VICTRELIS in combination with peginterferon alfa and
ribavirin include:
• tiredness
• nausea
• headache
• change in taste
(the above list is from the drug company) What they fail to say is that with the distorted blood counts come a massive amount of side effects .. such as unimaginable muscle cramps, horrible bruising and unprovoked bleeding (nose, gums, rectal). Mood swings, excessively dry skin and dry mouth, hair loss, muscle mass loss, mental clarity... and that is just some of what we went through last time. He will be on this drug combination for 12 months.
The following information may be of interest to someone who has Hepatitis C and will start treatment soon.
Victrelis (boceprevir) is a protease inhibitor indicated for the treatment of chronic hepatitis C. The drug recently approved (May, 2011) by the Federal Drug Administration (FDA). Victrelis must not be used as a single therapy and should only be used in combination with peginterferon alfa and ribavirin in adult patients with liver disease.
Victrelis is available in 200 mg capsules. The dose of Victrelis is 800 mg (four 200-mg capsules) three times daily (every 7-9 hours) with a meal or light snack (use only in combination with perinterferon alfa and ribavirin (see other drug center information sites for use of these drugs); dosages may vary based on the patient's condition. Victrelis may not interact well with certain antibiotics, antidepressants, calcium channel blockers, and certain gout medications
Victrelis is the new drug he will be taking along with the old "cocktail" of drugs. It was recently approved by the FDA and increases the chance of cure from Hepatitis C from 50 to 70%. Sadly it has it's own list of obscene side effects.. so much so that the company that manufactures the drug requires the recipients to take this class before they are allowed to use the medicine! I am concerned that it will scare Don. Please continue to pray for him.
This is what we know about the drug:
Blood problems. VICTRELIS can affect your bone marrow and cause low red blood cell, and low white blood cell, counts. In some people, these blood counts may fall to dangerously low levels. If your blood cell counts become very low, you can get anemia or infections.
The most common side effects of VICTRELIS in combination with peginterferon alfa and
ribavirin include:
• tiredness
• nausea
• headache
• change in taste
(the above list is from the drug company) What they fail to say is that with the distorted blood counts come a massive amount of side effects .. such as unimaginable muscle cramps, horrible bruising and unprovoked bleeding (nose, gums, rectal). Mood swings, excessively dry skin and dry mouth, hair loss, muscle mass loss, mental clarity... and that is just some of what we went through last time. He will be on this drug combination for 12 months.
The following information may be of interest to someone who has Hepatitis C and will start treatment soon.
Victrelis (boceprevir) is a protease inhibitor indicated for the treatment of chronic hepatitis C. The drug recently approved (May, 2011) by the Federal Drug Administration (FDA). Victrelis must not be used as a single therapy and should only be used in combination with peginterferon alfa and ribavirin in adult patients with liver disease.
Victrelis is available in 200 mg capsules. The dose of Victrelis is 800 mg (four 200-mg capsules) three times daily (every 7-9 hours) with a meal or light snack (use only in combination with perinterferon alfa and ribavirin (see other drug center information sites for use of these drugs); dosages may vary based on the patient's condition. Victrelis may not interact well with certain antibiotics, antidepressants, calcium channel blockers, and certain gout medications
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