Today is Monday. Today is the day Don goes in for his weekly blood test, but this Monday is very special. You see today is the day that he is having blood drawn for his 12 week Viral Load test. This test is going to tell us how well he IS responding to his chemotherapy!
...and just so you know our prayers are working...that nasty rash that has been driving him crazy...IT IS GOING AWAY!
Monday, March 30, 2009
More Family News..
Just in case you have never met...let me introduce you to my oldest daughter - Emily! Emily is married to a wonderful man, Daren who is serving our country in the Air Force. They have 2 adorable kiddos named Madison and Trestin. Guess what? They are also looking for their very first home in AZ.!!!
Taking advantage of the market, just like Joy did, here are some homes they have bid on..
..and this beautiful one! (my favorite!)
I know the economy is bad and that it has been hard on some...but a part of me is really happy that out of this bad economy - both of my girls will be able to afford their very own homes ...and really nice ones too! Is it okay for me to be jealous??? snicker snicker!
Taking advantage of the market, just like Joy did, here are some homes they have bid on..
..and this beautiful one! (my favorite!)
I know the economy is bad and that it has been hard on some...but a part of me is really happy that out of this bad economy - both of my girls will be able to afford their very own homes ...and really nice ones too! Is it okay for me to be jealous??? snicker snicker!
Friday, March 27, 2009
Even More Good News!
Just in case you have never met her...this is our youngest daughter - Joy.
Joy is 25 years old, graduated from college 3 years ago with a double business degree and secured a really good job. Since then she has lived in apartments or condos, with and without room mates. Lots of her belongings were destroyed when the roof of her former apartment collapsed during Hurricane Ike. Well guess what? My baby just bought her first house!
She looked at so many in so many different neighborhoods - it started to confuse me..but when she saw this house, she knew she wanted it.
It was in very good condition for being a foreclosure and since it was a 'short sell' from the bank that owned it, it was very reasonably priced. The only difficulty... the bank took bids from many people before decided which one to accept...
..and her bid won! It has 3 bedrooms, 2.5 baths, all bedrooms are upstairs, and the neighborhood is AMAZING!
Joy is 25 years old, graduated from college 3 years ago with a double business degree and secured a really good job. Since then she has lived in apartments or condos, with and without room mates. Lots of her belongings were destroyed when the roof of her former apartment collapsed during Hurricane Ike. Well guess what? My baby just bought her first house!
She looked at so many in so many different neighborhoods - it started to confuse me..but when she saw this house, she knew she wanted it.
It was in very good condition for being a foreclosure and since it was a 'short sell' from the bank that owned it, it was very reasonably priced. The only difficulty... the bank took bids from many people before decided which one to accept...
..and her bid won! It has 3 bedrooms, 2.5 baths, all bedrooms are upstairs, and the neighborhood is AMAZING!
PRAISE GOD!!- Chapter 29
I am so excited!!! Don's platelet count is going back up..this week by 2,000. It is now up to 58,000 again. I think that means it will level off and he will be able to continue the treatments as long as the tests show it is working for him!
Now, this Saturday (March 28Th) is shot number 12. The following Monday (March 30th) will be the blood test for the Viral Load count and the week after that (April 7th I believe) we will find out if this treatment is killing the Hepatitis Virus!
Now, this Saturday (March 28Th) is shot number 12. The following Monday (March 30th) will be the blood test for the Viral Load count and the week after that (April 7th I believe) we will find out if this treatment is killing the Hepatitis Virus!
Thursday, March 26, 2009
Staff Complications..Chapter 28.
Well - I took every ones advice and called Don's doctor. He had kind of a funny reaction though...kind of a combination of being relieved that Don was not ill and yet I felt as though he was also saying "Is that all?" Don't get me wrong. He did not say that ...it was just a feeling I had.
I told him that on the weeks we had a Tuesday appointment he without one exception had the lab work to review..yet as in this week, here it was Wednesday and the lab work was not even in his office yet. He said that there was no different protocol and that they were at the mercy of the lab. When the results were in, they were automatically faxed over to his office.... His office staff must show him the lab results and he has to sign off on them before they can be faxed over to me. I called and I know the results are there...but do not know what they say. I still do not have my copy of the fax. It is Thursday 4:55 PM.
I told him that on the weeks we had a Tuesday appointment he without one exception had the lab work to review..yet as in this week, here it was Wednesday and the lab work was not even in his office yet. He said that there was no different protocol and that they were at the mercy of the lab. When the results were in, they were automatically faxed over to his office.... His office staff must show him the lab results and he has to sign off on them before they can be faxed over to me. I called and I know the results are there...but do not know what they say. I still do not have my copy of the fax. It is Thursday 4:55 PM.
Wednesday, March 25, 2009
I Need to Vent! - Chapter 27
Now as I have stated in the past, we really like our doctor. His communication skills and intelligence are at the top. His staff is always polite and courteous to us when we are there and when I have to call....every week.. and that is where the problem begins.
You see, Don has a Doctors appointment every other week, usually on Tuesdays. He goes into the clinic though, every Monday to get his blood work done. Every single time Don has an appointment on Tuesday, without one exception, the doctor has the results from the previous days blood work for us to review. So why is it that on the off week, the week where we do not have an appointment, it takes FOREVER for us to get the results? Here it is Wednesday morning and when I called the nurse to see where my copy is, her response is usually the same..."I have not seen it come over the fax yet from the clinic."
This week is especially important because we need to know if his platelet count is still dropping. Add to that the fact that when he had his blood drawn on Monday, after he left the office, the tape came off of his arm holding the cotton ball onto the injection sight. He was walking back to his car and felt something wet. Blood was running down his arm and got all over the sleeve of his shirt.
I think I may need to call his doctor today...what do you think?
Tuesday, March 24, 2009
A Little Down Time - Chapter 26
Sunday afternoon Don was not feeling well at all. I had planned to take Roman, the baby lamb out into the bluebonnets to get some pictures. As badly as Don felt, he really wanted to go with me. We gathered up the camera, tied a cute brass bell around Roman's neck with a light green ribbon and were off.
About 10 miles from our farm there is a small country road with a beautiful old church...with a stunning field of bluebonnets in front of it. The perfect and safe spot for our pictures!
Here we were able to let Roman loose. He was very timid at first.
He loves to play chase though, so when I started to run...
..he followed. We played chase for a long time..
..until my old body could not take it anymore.
We stopped to rest and had a picnic...well Roman did anyway!
Then, even though he did not feel well, Don could not just stand by without joining in the fun..
He started to jog back and forth..
..and as always, Roman followed, calling out to Don...whom might I add he thinks is his Mommy!
When we were walking back to the truck, Don reflected how Roman just revives his spirit.
I just smiled as I nodded in agreement. He is a gift from God. That is for sure!
About 10 miles from our farm there is a small country road with a beautiful old church...with a stunning field of bluebonnets in front of it. The perfect and safe spot for our pictures!
Here we were able to let Roman loose. He was very timid at first.
He loves to play chase though, so when I started to run...
..he followed. We played chase for a long time..
..until my old body could not take it anymore.
We stopped to rest and had a picnic...well Roman did anyway!
Then, even though he did not feel well, Don could not just stand by without joining in the fun..
He started to jog back and forth..
..and as always, Roman followed, calling out to Don...whom might I add he thinks is his Mommy!
When we were walking back to the truck, Don reflected how Roman just revives his spirit.
I just smiled as I nodded in agreement. He is a gift from God. That is for sure!
Monday, March 23, 2009
My Birthday - Chapter 25
Tuesday March 17Th
What were we thinking I thought as we sat in the waiting room of the doctors office? I met Don there as I always did, with my hands full carrying a vase of the most beautiful red roses that he sent to me for my birthday.
"Why did you bring those in with you?" Don asked.
"I am not going to let these beauties fry outside in the car! I love them!" I closed my eyes to smell them again.
We had plans that night to go out to eat at my favorite restaurant, Jasper's. It was a restaurant that we went to for the first time a couple of years ago when we were again dating and trying to restore our marriage...a restaurant that held many special memories for us.
When it was our turn and the doctor entered the exam room, he held Don's folder in his hands. He reconfirmed the date for the Viral Load test and removed the CBC paperwork.
"All your counts are still good. No Nupogen shot needed today since your white blood cell count is 2800." Don smiled. "Your platelet count is down a bit though." he said tracing his finger down the paper.
I froze. This is what I had feared and I bit my lip.
"It is down to 56,000, a drop of 3,000, but it is still in an acceptable range." He read from the lab results.
I knew this was still an acceptable number as he said, but my brain started to grind and I could not help but wonder if it was going to continue to go down and then what? We had already reduced his Interferon down to half a dose. Can we reduce it more? Would that be effective on the disease or might his count still continue to go down?
"Shut up brain...SHUT UP!" I silently told myself. "Today is not the day to think about it and furthermore WHERE IS YOUR FAITH JULIE?" I put it out of my head and let it go.
We got his paperwork for the next lab tests he needed and headed out the door.... and had the most romantic and relaxing dinner ever!
Sunday, March 22, 2009
Viral Load Test Scheduled - Chapter 24
March 10th
A week has passed since my last entry and again we just returned from the doctors office. Don's initial lab tests are still in a good range, but I am concerned. This week his platelet count increased by 1,000. When he first had to cut the Interferon shot down to 1/2 the dose, his platelet count increased by 8,000. The next week it increased by 2,000 and this week, only by 1,000. I cannot help but to be concerned by this. I am scarred it may start to slip backwards again.
It is very difficult, for me at least, to just stay calm, confident ...and patient. Don's 12th Interferon shot is going to be on Saturday, the 28th of March. His next lab is scheduled for the following Monday, the 30th of March. It would take a week after that to get the results back...a grueling week for us I am sure! This was the big Viral Load test that will tell us if the chemotherapy is working or not. Medically he will be classified as either a responder or a non-responder.
A week has passed since my last entry and again we just returned from the doctors office. Don's initial lab tests are still in a good range, but I am concerned. This week his platelet count increased by 1,000. When he first had to cut the Interferon shot down to 1/2 the dose, his platelet count increased by 8,000. The next week it increased by 2,000 and this week, only by 1,000. I cannot help but to be concerned by this. I am scarred it may start to slip backwards again.
It is very difficult, for me at least, to just stay calm, confident ...and patient. Don's 12th Interferon shot is going to be on Saturday, the 28th of March. His next lab is scheduled for the following Monday, the 30th of March. It would take a week after that to get the results back...a grueling week for us I am sure! This was the big Viral Load test that will tell us if the chemotherapy is working or not. Medically he will be classified as either a responder or a non-responder.
Friday, March 20, 2009
Yet Another Week - Chapter 23
As the week progressed, Don's rash got worse. It was increasing in size and spreading from his abdomen, to his chest and around his back. His skin texture was changing. It was not only dry, but almost had a paper like consistency to it. He also experienced restless leg syndrome, a very strange taste in his mouth and dry mouth.
Every new symptom led me back to the Hepatitis web sight to do more research. Reading through other patients experiences and how they dealt with them really helped us. I could at least offer suggestions and as in the dry mouth, buy special tooth paste and mouth washes that helped him. Just knowing that others were going through what he went through was such a comfort to us.
Monday came and went with the normal blood testing. Tuesday came and we found ourselves back in the exam room. Anxious about the "Ominous Numbers", we impatiently waited... With 90,000 being the goal number for his platelet count so he could resume the full dose of Interferon and at least 3,000 was our goal for his white blood cell count. The results:
His white blood cell count went from 2400 to 3000 - yeah!!
His Platelet count went from 56,000 to 58,000. - a long hesitation followed."Well - UP is UP!" I said with a smile on my face.
By reducing the Interferon injection his count initially increased from 48,000 to 56,000 in the first week. The second week did not yield nearly the good increase that we were wishing for...but like I said - Up is UP!!!!
Thursday, March 19, 2009
Numega - Chapter 22
Although relatively new, Numega was a drug tauted as being able to raise a patients platelet count, something previously thought impossible by any drug intervention.
Every day I combed through web sight after web sight reading medical studies about this drug and it's capabilities...and it's side effects. Most of what I read scared me. I knew if this drug could be used on Don, it would likely incapacitate him at least for a while. The possible side effects listed were horrid...but I was not going to leave any stone unturned and at our next appointment, I was armed with a long list of questions about it.
Armed with many questions, again we were sitting in the exam room waiting for our turn. The doctor entered with a smile on his face. He barely said hello before he was telling us that Don was responding to the Nupogen and that his white blood cell count had increased from 1900 to 2400. He also was thrilled to inform us that since the reduction of the Interferon, Don's platelet count had increased to 56,000. Still a far cry from the normal 140,000 but an 8,000 increase in only 1 week was very good news. He told us that when Don reached a count of only 90,000, he could again return to taking the full injection amount. Again, he reiterated that even if that did not happen, he had several patients who were responders to the treatments on only half of a dose. I saw a peaceful calm come over Don's face as his shoulders rolled down a bit.
At the end of each appointment, I felt like it was a question and answer session. I thought sometimes, the poor doctor must get stressed knowing that I usually grilled him about any and all new information I had drudged up over the Internet and this afternoon was no different. I squirmed in my seat until I had the chance to ask him about the drug Numega.
"Yes, I do know about Numega and I have tried it on several of my patients." He responded with a smile. "Hold on just a moment." he said raising his hand as he reached for his cell phone.
Right there in front of us, he called a colleague and conferred again about the drug. The physician he called was an Oncologist, a Cancer Doctor. After a short conversation, he again returned his attention to us.
"Yes, when this drug first came out, I tried it on several of my Hepatitis C patients and it did not significantly improve the platelet count on any of them faster than the Interferon destroyed it. Every patient suffered extreme side effects and the last time I used it, my patient ended up in ICU. His lungs were hemorrhaging. I find it to be too dangerous and with the Hepatitis C patients, it just did not offer any improvement. The physician I just called said that they had not seen any new form of this drug that was working any better."
Although I would have liked to have heard a more positive answer, this whole conversation increased my confidence in our doctor above the already high level we held him. He proved that my questions did not challenge his competence, but only that we were working towards a common goal - to get Don completely well!
Every day I combed through web sight after web sight reading medical studies about this drug and it's capabilities...and it's side effects. Most of what I read scared me. I knew if this drug could be used on Don, it would likely incapacitate him at least for a while. The possible side effects listed were horrid...but I was not going to leave any stone unturned and at our next appointment, I was armed with a long list of questions about it.
Armed with many questions, again we were sitting in the exam room waiting for our turn. The doctor entered with a smile on his face. He barely said hello before he was telling us that Don was responding to the Nupogen and that his white blood cell count had increased from 1900 to 2400. He also was thrilled to inform us that since the reduction of the Interferon, Don's platelet count had increased to 56,000. Still a far cry from the normal 140,000 but an 8,000 increase in only 1 week was very good news. He told us that when Don reached a count of only 90,000, he could again return to taking the full injection amount. Again, he reiterated that even if that did not happen, he had several patients who were responders to the treatments on only half of a dose. I saw a peaceful calm come over Don's face as his shoulders rolled down a bit.
At the end of each appointment, I felt like it was a question and answer session. I thought sometimes, the poor doctor must get stressed knowing that I usually grilled him about any and all new information I had drudged up over the Internet and this afternoon was no different. I squirmed in my seat until I had the chance to ask him about the drug Numega.
"Yes, I do know about Numega and I have tried it on several of my patients." He responded with a smile. "Hold on just a moment." he said raising his hand as he reached for his cell phone.
Right there in front of us, he called a colleague and conferred again about the drug. The physician he called was an Oncologist, a Cancer Doctor. After a short conversation, he again returned his attention to us.
"Yes, when this drug first came out, I tried it on several of my Hepatitis C patients and it did not significantly improve the platelet count on any of them faster than the Interferon destroyed it. Every patient suffered extreme side effects and the last time I used it, my patient ended up in ICU. His lungs were hemorrhaging. I find it to be too dangerous and with the Hepatitis C patients, it just did not offer any improvement. The physician I just called said that they had not seen any new form of this drug that was working any better."
Although I would have liked to have heard a more positive answer, this whole conversation increased my confidence in our doctor above the already high level we held him. He proved that my questions did not challenge his competence, but only that we were working towards a common goal - to get Don completely well!
Wednesday, March 18, 2009
The Forum - Chapter 21
After weeks of appointments filled with bad news, we were starting to get leery of Tuesday afternoons. It was hard to be jovial as we sat in the waiting room now. That previous week I had been doing hours of research on the computer and found a web sight and forum dedicated to people with Hepatitis C.
http://forums.delphiforums.com
This was a place where you could ask qualified medical personnel questions. It was also a great avenue to talk to other patients and their families about their treatments, successes, failures and most of all side effects! It confirmed many things Don suffered with were indeed caused by the medications he was taking. Others offered tried and good advice and suggestions to problems we were having and more than anything - it gave us hope! On this sight I learned about a new drug called Newmega.
http://forums.delphiforums.com
This was a place where you could ask qualified medical personnel questions. It was also a great avenue to talk to other patients and their families about their treatments, successes, failures and most of all side effects! It confirmed many things Don suffered with were indeed caused by the medications he was taking. Others offered tried and good advice and suggestions to problems we were having and more than anything - it gave us hope! On this sight I learned about a new drug called Newmega.
Tuesday, March 17, 2009
Hanging On to Hope - Chapter 20
Just like clockwork, every Monday morning Don went to the clinic to get his blood drawn. With his low platelet count and depending on the skill (or lack) of the technician drawing the blood, sometimes large purple and green bruising would appear on his arms. When I gave him the Interferon injection, I also noticed that he would bleed around the injection sight and for the first time, he complained that he felt it. All of these were symptoms of the low platelet count and the lowered ability his body had to clot his blood.
More statistical information. Normal platelet counts are 140,000 to 400,000. Don's count at the start of treatment was a bit depressed at 113,000. If a platelet count gets into the 30,000 range, the patient is at risk for internal hemorrhage without injury! At this time, the lowest Don's had been counted was 48,000.
By decreasing his Interferon injection amount by 50%, we were hoping that the side effects would decrease. No such luck. Don felt just as ill as he had in the previous weeks. Everything hinged on his platelet count now. If it did not start to raise, the treatments would have to stop.
Not for one moment though has Don even entertained the idea of quitting. He is a real fighter and I am so proud of him!
More statistical information. Normal platelet counts are 140,000 to 400,000. Don's count at the start of treatment was a bit depressed at 113,000. If a platelet count gets into the 30,000 range, the patient is at risk for internal hemorrhage without injury! At this time, the lowest Don's had been counted was 48,000.
By decreasing his Interferon injection amount by 50%, we were hoping that the side effects would decrease. No such luck. Don felt just as ill as he had in the previous weeks. Everything hinged on his platelet count now. If it did not start to raise, the treatments would have to stop.
Not for one moment though has Don even entertained the idea of quitting. He is a real fighter and I am so proud of him!
Monday, March 16, 2009
More Side Effects - Chapter 19
It was not just the big counts that were starting to change in his blood work and body chemistry. Don was now starting to experience several different symptoms and side effects. Getting a full nights sleep was a miracle these days. He started to scratch at himself during the night. When I questioned him about it the next morning, he lifted his t-shirt to show me a rash that started to develop. It was located mainly on his abdomen. He had several dry circular patches that resembled ring worm. From that point on, Don started to wear long sleeve t-shirts to bed. With a low white blood cell count and a lower immunity to infection, the last thing he needed was a compromise in his skin! He used both Extra strength Cortisone for the itching and antibiotic cream. Neither helped much. He could stop himself from scratching when he was awake, but once he fell asleep, his scratching sometimes could be classified as clawing!
Another problem was leg cramps. Not just a tightening of the muscle, but true charlie horses that caused him to vault out of our bed screeching in pain. These became a nightly experience even though he was now eating at least 2 bananas per day.
Discussing these new developments with his doctor yielded some comforting information, even if we did not actually find a complete resolution for them. The rash, which apparently gets much worse with sun exposure is 'affectionately' called Riba-rash. It is a direct side effect from the Ribovirin pills he is taking and is very common.
A simple addition to his normal blood tests showed that although Don's potassium count was normal, his calcium was very low. He is not a fan of milk - or yogurt and does not eat enough cheese to make a dent in this problem either. I thought about calcium pills ...but you have to have vitamin D to metabolize calcium, especially in pill form. Guess what - our bodies manufacture vitamin D...with SUN EXPOSURE. Oh Lord! sun = vitamin D but the sun will make his Riba rash worse. No vitamin D and he will not metabolize the calcium. Is this a catch 22 or what?????
He is now taking Calcium supplements with another form of Vitamin D...not as good as the kind our bodies manufactures - but better than nothing!
Another problem was leg cramps. Not just a tightening of the muscle, but true charlie horses that caused him to vault out of our bed screeching in pain. These became a nightly experience even though he was now eating at least 2 bananas per day.
Discussing these new developments with his doctor yielded some comforting information, even if we did not actually find a complete resolution for them. The rash, which apparently gets much worse with sun exposure is 'affectionately' called Riba-rash. It is a direct side effect from the Ribovirin pills he is taking and is very common.
A simple addition to his normal blood tests showed that although Don's potassium count was normal, his calcium was very low. He is not a fan of milk - or yogurt and does not eat enough cheese to make a dent in this problem either. I thought about calcium pills ...but you have to have vitamin D to metabolize calcium, especially in pill form. Guess what - our bodies manufacture vitamin D...with SUN EXPOSURE. Oh Lord! sun = vitamin D but the sun will make his Riba rash worse. No vitamin D and he will not metabolize the calcium. Is this a catch 22 or what?????
He is now taking Calcium supplements with another form of Vitamin D...not as good as the kind our bodies manufactures - but better than nothing!
Sunday, March 15, 2009
Just a Moment of Peace
No matter how poorly Don may feel - he always wants to feed our baby lamb...who now thinks he is Mommy!
Even Chrissy gets along with Roman.
Even Chrissy gets along with Roman.
Another Punch in the Stomach - Chapter 18
From left to right: A red blood cell, a platelet, and a white blood cell.
Don had a rough week. Not only did the Interferon shot make his body ache, but the addition of the Nupogen shot to increase his white blood cell count, knocked him down even further. He really had to push himself to keep going.
What was becoming his usual schedule continued. Every Monday morning before work he headed over to the clinic to get his blood drawn and every Tuesday we either had an appointment or a telephone consultation about the results. This Tuesday we were going in for a face to face visit.
The ride over. The waiting room. The exam room..it was all starting to feel like da-ja-vu. First the nurse comes in and asked Don to step onto the scale.
She glanced at the dial, looked at his chart and then looked at the scale again."Have you been eating normally?" She inquired.
"Yes, not much has changed." he responded.
"Well, you have lost 10 pounds."
I just sat there and glared at him. In the same time frame, I had managed to gain 3 pounds. "I am gonna steel one of those shots and jab it into my thigh!" I said shaking my head.
The nurse laughed, "I would not recommend that!"
Again we were left alone in silence. Only a moment later the door knob turned downward and the doctor came in.
After exchanging short greetings and pleasantries, he got right down to business.
"Don, your platelet count has dropped way down. In fact it was so low, I made them retest it because I just could not believe it. The first time the count was 48,000 and the second count came back just a bit higher so it was not a mistake." he informed us.
We sat there completely silent. I knew that this could be the kiss of death for his treatment. According to our doctor there was not an injection to raise the platelet count and getting a transfusion was not an ongoing treatment option. If his count continued to go down he could be in serious danger of bleeding internally without cause of injury.
Just to give you a mental graphic....a normal platelet count for someone in perfect health is anywhere from 150,000 to 400,000. When we started treatment, Don's was already depressed to 113,000 which is a common side effect of Hepatitis C. In 5 short weeks of treatment his count went from 113,000 to 48,000. In essence his platelet count was dropping by 13,000 per week! That was frightening!!
His doctor continued, "I have had patients whose count dropped, but it usually happens months into the treatment. This is quite unusual. You will need to continue to have to have CVC's done weekly and as of now, you need to cut your Interferon injections by half. Hopefully by doing that, your platelet count will go back up."
"..and if not?" I asked.
"..then you will have to stop this treatment." he responded solemnly. Raising his voice level to sound more optimistic he continued, "I have had patients who were successful on the half dose treatment though, so don't give up! Do you have any questions?"
Each of us shook our heads. Honestly, I can't say that my brain was in a position to even think of a question at that moment. The doctor nodded his head, shook our hands and left the room. The air felt heavy. I had a lump in my throat and could feel that I was clenching my teeth. I didn't know what to say. I looked straight into Don's eyes and he looked stunned.
"I can't seem to catch a break."
We just held onto each other for the longest time...
Don had a rough week. Not only did the Interferon shot make his body ache, but the addition of the Nupogen shot to increase his white blood cell count, knocked him down even further. He really had to push himself to keep going.
What was becoming his usual schedule continued. Every Monday morning before work he headed over to the clinic to get his blood drawn and every Tuesday we either had an appointment or a telephone consultation about the results. This Tuesday we were going in for a face to face visit.
The ride over. The waiting room. The exam room..it was all starting to feel like da-ja-vu. First the nurse comes in and asked Don to step onto the scale.
She glanced at the dial, looked at his chart and then looked at the scale again."Have you been eating normally?" She inquired.
"Yes, not much has changed." he responded.
"Well, you have lost 10 pounds."
I just sat there and glared at him. In the same time frame, I had managed to gain 3 pounds. "I am gonna steel one of those shots and jab it into my thigh!" I said shaking my head.
The nurse laughed, "I would not recommend that!"
Again we were left alone in silence. Only a moment later the door knob turned downward and the doctor came in.
After exchanging short greetings and pleasantries, he got right down to business.
"Don, your platelet count has dropped way down. In fact it was so low, I made them retest it because I just could not believe it. The first time the count was 48,000 and the second count came back just a bit higher so it was not a mistake." he informed us.
We sat there completely silent. I knew that this could be the kiss of death for his treatment. According to our doctor there was not an injection to raise the platelet count and getting a transfusion was not an ongoing treatment option. If his count continued to go down he could be in serious danger of bleeding internally without cause of injury.
Just to give you a mental graphic....a normal platelet count for someone in perfect health is anywhere from 150,000 to 400,000. When we started treatment, Don's was already depressed to 113,000 which is a common side effect of Hepatitis C. In 5 short weeks of treatment his count went from 113,000 to 48,000. In essence his platelet count was dropping by 13,000 per week! That was frightening!!
His doctor continued, "I have had patients whose count dropped, but it usually happens months into the treatment. This is quite unusual. You will need to continue to have to have CVC's done weekly and as of now, you need to cut your Interferon injections by half. Hopefully by doing that, your platelet count will go back up."
"..and if not?" I asked.
"..then you will have to stop this treatment." he responded solemnly. Raising his voice level to sound more optimistic he continued, "I have had patients who were successful on the half dose treatment though, so don't give up! Do you have any questions?"
Each of us shook our heads. Honestly, I can't say that my brain was in a position to even think of a question at that moment. The doctor nodded his head, shook our hands and left the room. The air felt heavy. I had a lump in my throat and could feel that I was clenching my teeth. I didn't know what to say. I looked straight into Don's eyes and he looked stunned.
"I can't seem to catch a break."
We just held onto each other for the longest time...
Saturday, March 14, 2009
Oh That Sense of Humor of His - Chapter 17
It was the middle of the night. It was warm and I was comfortable. A shift in the bed caused me to open my eyes. Don was sitting up on the side of our bed.
"What is wrong?" I asked.
"Nothing? he whispered. He got up and stated to walk around the bed.
"Where are you going?" I sat up.
"Into the den." he replied.
Waiting for an explanation that it did not seem like I was going to get, I asked, "Why?"
He stood in the doorway and a long silence followed before he answered."I am going to pull my own finger!"
I was so mad at him for making me laugh so hard. It was forever before I could go back to sleep!
Friday, March 13, 2009
The Harsh Reality - Chapter 16
What does this all mean? Really. What are the consequences of having Hepatitis in your body undetected for 30 years? What can we expect? What should we pray for and pray against?
Since Don has cirrhosis his changes of getting liver cancer in his lifetime have increased by 50%. We laughed about his past fear of doctors. For the rest of his life he will be going into see the doctor no less than 2 times a year..and that is just for his liver "check-ups" Right now, he sees him so often, they are almost best friends!
Our biggest goal is to rid his body of the Hepatitis C. That is what is destroying his liver and as long as it is alive inside of him, it is doing damage...now permanent damage. What happens if this treatment does not work and he is a "non-responder"? Well - we will go to more specialists and try treatments that are still in the testing phases...and if it becomes necessary, he will be placed on a liver transplant list.
I know I have said this in the past, but just to reiterate some very important information. The liver is a remarkable organ. If you have an accident or a tumor and you lose part of it, it will literally grow back. The only time this is not true is in the case of cirrhosis. To give you a mental picture, your liver is like a huge filter for your blood and cirrhosis is a lot like chicken wire running through the liver tissue. If the cirrhosis gets bad enough, it inhibits the liver from being able to do its job.
Want to pray? Please pray that Don is a RESPONDER! Pray that the Hepatitis will die inside of him. Pray mostly that God's Will will be done!
Thursday, March 12, 2009
White Blood Cells - Chapter 15
This is a single white blood cell.
"Your white blood cell count has dropped down to 1900. Normal counts would range from 4000 to 11,000, so we are going to give you an injection of a drug called Nupogen. Nupogen will help your bone marrow produce more white blood cells." the doctor told us.
Here we were, right in the middle of flu season, both of us working in very public positions and exposed to many people. Don's immune system was already being taxed to the limit, so the new information advising us that his protection zone was eroding away made me tense.
The doctor told him the nurse would be in to give him the shot and that he needed to return to the clinic next Monday for another CBC (blood test). That blood test would be reviewed at our next Tuesday appointment. He left the room and within minutes the nurse came in with his shot."This is not a booty shot is it?" Don teased with the nurse.Blushing, she said, "No! Roll up your sleeve and remember what arm you are getting this in so next time, we will give it to you in the other arm."
I had read a bit about Nupogen and knew that most people who used it, had good results and their white blood cell counts rebounded fairly well. I also knew however, that there were more negative side effects with this injection than associated with Interferon. I did not share this information with Don.
That night he was quite restless. He rolled and moaned. My heart ached for him. Neither of us slept much and the next morning he was extremely sore. He could not raise his arms above his shoulders and sat on the side of the bed for the longest time with his head down. One of the things I love about our relationship is our love of humor and as strange as it might sound, this was a perfect time for a good laugh.
Don said, "Oh my God! I hurt so bad." with a soft whine in his voice.
With a bit of a sarcastic tone I responded, "Well, I don't know what you were expecting.....of course your joints are sore...YOUR WHITE BLOOD CELLS HAD SEX ALL NIGHT LONG!"
"Your white blood cell count has dropped down to 1900. Normal counts would range from 4000 to 11,000, so we are going to give you an injection of a drug called Nupogen. Nupogen will help your bone marrow produce more white blood cells." the doctor told us.
Here we were, right in the middle of flu season, both of us working in very public positions and exposed to many people. Don's immune system was already being taxed to the limit, so the new information advising us that his protection zone was eroding away made me tense.
The doctor told him the nurse would be in to give him the shot and that he needed to return to the clinic next Monday for another CBC (blood test). That blood test would be reviewed at our next Tuesday appointment. He left the room and within minutes the nurse came in with his shot."This is not a booty shot is it?" Don teased with the nurse.Blushing, she said, "No! Roll up your sleeve and remember what arm you are getting this in so next time, we will give it to you in the other arm."
I had read a bit about Nupogen and knew that most people who used it, had good results and their white blood cell counts rebounded fairly well. I also knew however, that there were more negative side effects with this injection than associated with Interferon. I did not share this information with Don.
That night he was quite restless. He rolled and moaned. My heart ached for him. Neither of us slept much and the next morning he was extremely sore. He could not raise his arms above his shoulders and sat on the side of the bed for the longest time with his head down. One of the things I love about our relationship is our love of humor and as strange as it might sound, this was a perfect time for a good laugh.
Don said, "Oh my God! I hurt so bad." with a soft whine in his voice.
With a bit of a sarcastic tone I responded, "Well, I don't know what you were expecting.....of course your joints are sore...YOUR WHITE BLOOD CELLS HAD SEX ALL NIGHT LONG!"
Wednesday, March 11, 2009
Antidepressant's - Chapter 14
We were forced to wait until Don's doctor returned to get the antidepressants he so desperately needed. During this time I was able to consult with some of my friends who I knew had taken them and their answers to my questions were as varied as they were. Some found the drugs worked within hours, while others did not notice a difference for about 3 days. Either way, we knew help was coming and that alone was comforting. Don was now 3 weeks into his treatment.
The day prior to our appointment, he picked up the prescription called in by his doctor. I do not think he had left the pharmacy before he took the first dose and before the day was over he felt a general feeling of wellness and comfort. I was so thankful. He also had to get his blood drawn at the clinic that day.
The next day...Waiting in the waiting room was frustrating for me. I had an underlying anger and a need to tell the doctor what we had gone through in his absence. Between Don and I, there is no contest...I am the 'Louder One' and while I did not want to say anything that would embarrass him, but something needed to be said.
When we were called into the exam room, it was not me, but rather Don and his physician who carried out this conversation. I was just an observer. Thankfully, both men have kind and understanding demeanor's and all was settled and reconciled in minutes. That was a good thing too because we were about to learn of a new hurtle in our quest for a cure...
The day prior to our appointment, he picked up the prescription called in by his doctor. I do not think he had left the pharmacy before he took the first dose and before the day was over he felt a general feeling of wellness and comfort. I was so thankful. He also had to get his blood drawn at the clinic that day.
The next day...Waiting in the waiting room was frustrating for me. I had an underlying anger and a need to tell the doctor what we had gone through in his absence. Between Don and I, there is no contest...I am the 'Louder One' and while I did not want to say anything that would embarrass him, but something needed to be said.
When we were called into the exam room, it was not me, but rather Don and his physician who carried out this conversation. I was just an observer. Thankfully, both men have kind and understanding demeanor's and all was settled and reconciled in minutes. That was a good thing too because we were about to learn of a new hurtle in our quest for a cure...
Tuesday, March 10, 2009
We Interrupt This Blog Story....
..to show you pictures of our first baby lamb - Roman.
Sadly, Roman's Mommy would not feed him..
..so he is currently living in a crate inside our house.
..and being fed by us...EVERY 4 TO 6 HOURS...
Sadly, Roman's Mommy would not feed him..
..so he is currently living in a crate inside our house.
..and being fed by us...EVERY 4 TO 6 HOURS...
Where is Everyone? - Chapter 13
Before I get started with today's chapter, I wanted to introduce you to some of my family. This is my middle brother Tom and his wife Adelaide. Tom is the Neurologist in the next part of the story.
This is my oldest brother James.
..and this is my Dad (holding his Great Grand Daughter)
The next day, Don called the doctors office. The secretary informed him that his doctor had a family emergency and he would be out of town for an entire week. We later found out that 'out of town' meant "out of the country!" There was no way he could be reached. Don explained to them what our doctor told us about the antidepressants and all we had to do was call and request them. The secretary put him on hold. When she came back she informed him that the on call doctor would not prescribe Don any medications without first seeing him....but because he was taking over all the other doctors appointments, the first available time was not going to be for another 6 days!
"How stupid is that!" I screamed... "Your doctor will be back in town in another 8 days and your appointment is the day after that! Not only that - but this makes us a week late for what was suppose to be your first check up."
"I know, I know." Don retorted..."Do you think your Dad or your brother could help me?"
My Father is a retired Neurosurgeon and my middle brother, the one he was referring to is a practicing Neurologist. I placed a call to both. Oddly enough, neither was home, so I left them each a message asking them to call back very soon.
That day turned into night and then into the next day. I did not hear from either of them. I again called and again only got answering machines. I hung up.
Don was really struggling. He would vent to me about situations that bothered him, but when he did so, it seemed to make him even more aggravated. Another day passed and by now Don was not even realizing how curt his tone of voice was, even to me.
"Maybe Tom and Dad went out of town together and no one told me?" I offered up as a weak explanation.
I tried to contact my eldest brother and Joy to see if either of them knew more. James was not available either. Joy told me she had James' cell number though and sent him a text message. Within the hour we found out that James and Dad were out of town together and would not be back for almost 2 weeks. No one seemed to know where Tom and his wife were. I felt very desperate and was so angry with them for not telling me!
This is my oldest brother James.
..and this is my Dad (holding his Great Grand Daughter)
The next day, Don called the doctors office. The secretary informed him that his doctor had a family emergency and he would be out of town for an entire week. We later found out that 'out of town' meant "out of the country!" There was no way he could be reached. Don explained to them what our doctor told us about the antidepressants and all we had to do was call and request them. The secretary put him on hold. When she came back she informed him that the on call doctor would not prescribe Don any medications without first seeing him....but because he was taking over all the other doctors appointments, the first available time was not going to be for another 6 days!
"How stupid is that!" I screamed... "Your doctor will be back in town in another 8 days and your appointment is the day after that! Not only that - but this makes us a week late for what was suppose to be your first check up."
"I know, I know." Don retorted..."Do you think your Dad or your brother could help me?"
My Father is a retired Neurosurgeon and my middle brother, the one he was referring to is a practicing Neurologist. I placed a call to both. Oddly enough, neither was home, so I left them each a message asking them to call back very soon.
That day turned into night and then into the next day. I did not hear from either of them. I again called and again only got answering machines. I hung up.
Don was really struggling. He would vent to me about situations that bothered him, but when he did so, it seemed to make him even more aggravated. Another day passed and by now Don was not even realizing how curt his tone of voice was, even to me.
"Maybe Tom and Dad went out of town together and no one told me?" I offered up as a weak explanation.
I tried to contact my eldest brother and Joy to see if either of them knew more. James was not available either. Joy told me she had James' cell number though and sent him a text message. Within the hour we found out that James and Dad were out of town together and would not be back for almost 2 weeks. No one seemed to know where Tom and his wife were. I felt very desperate and was so angry with them for not telling me!
Monday, March 9, 2009
Trouble Brewing - Chapter 12
Don's typical work week went as follows:
Monday - late shift - 11:30AM - Close
Tuesday - off
Wednesday - late shift
Thursday - bell to bell
Friday - late shift
Saturday - bell to bell
Sunday - off
Since he took his injection on Saturday night, working Mondays was hard on him. He usually ear marked most of Tuesday's to get more rest. I started to fall into a relaxed state, believing that we were going to breeze through this. His symptoms were mild compared to what I had read about and the only thing I had noticed was that he was quiet. I dismissed this to him being tired.
Week one rolled into two. It was not until he started telling me about strange feelings of anger, sometimes cropping up out of no where, that I became concerned.
"I don't act like this Julie. I slammed some papers down on my desk when some sales people overwhelmed me and I noticed one of the other managers was starring at me when that happened. I feel very short tempered and sometimes depressed."
He had such concern in his face when he told me this. I knew he had not wanted to use antidepressants if he did not need them, but it was clear to us both, the medications were interfering with his normal mental psyche.
"We were told that this is common Don." I responded. "Call the doctor tomorrow and get him to call in a prescription. You also need to make a 2 week appointment with him and go in and get your first blood work done."
He nodded in agreement.
Sunday, March 8, 2009
The Day After - Chapter 11
We both slept all night and I truly believe that the stress from the anticipation had worn us both completely out. We had already verbally agreed that on that particular Sunday, and any and every Sunday that followed during his treatment, would hereby be known as "Movie Day" Other than making sure all of our farm animals were safe and fed, we decided not to make any demands on ourselves and vowed not to feel guilty about it either!
I am a morning person, so at first it was very difficult for me not to get up and get into something. I tried to wait until our inside dog was belligerent about being let outside before we got out of bed. She has become our Sunday alarm clock. Once the animals were all fed, Don would retreat back to bed. I learned to follow. It became easier as the time went on!
I tried not to be obvious, but I was taking mental notes as to what seemed to become a routine. Don usually slept until sometime between 11-12. We would get something to eat, decide what movie we wanted to watch and where we wanted to watch it and unless a farm chore was demanding our attention, that is when our Movie Day began.
By 2pm Don would have fallen into a deep sleep again and every Sunday around 3 he would tell me he was starting to feel poorly. His joints and muscles would ache and he ran a low grade fever. His appetite though did not suffer, which was a good thing. Many patients on Interferon suffer from nausea so badly they have a hard time eating. After sleeping much of the day, he still had no trouble sleeping through that first night. I was so relieved....
I am a morning person, so at first it was very difficult for me not to get up and get into something. I tried to wait until our inside dog was belligerent about being let outside before we got out of bed. She has become our Sunday alarm clock. Once the animals were all fed, Don would retreat back to bed. I learned to follow. It became easier as the time went on!
I tried not to be obvious, but I was taking mental notes as to what seemed to become a routine. Don usually slept until sometime between 11-12. We would get something to eat, decide what movie we wanted to watch and where we wanted to watch it and unless a farm chore was demanding our attention, that is when our Movie Day began.
By 2pm Don would have fallen into a deep sleep again and every Sunday around 3 he would tell me he was starting to feel poorly. His joints and muscles would ache and he ran a low grade fever. His appetite though did not suffer, which was a good thing. Many patients on Interferon suffer from nausea so badly they have a hard time eating. After sleeping much of the day, he still had no trouble sleeping through that first night. I was so relieved....
Saturday, March 7, 2009
The First Shot - Chapter 10
Don awoke early. Every Saturday he works a shift called 'bell to bell'. Basically it is open to close at the car dealership. He is one of the hardest working people I have ever met and just because he was ill, I knew it would take much more than this to stop him. Along with this determination, he did not want anyone else to know what was going on. Normally a private person, this disease not only carried with it a stigma, but he did not want to be pitied either. He took his first 3 Ribavirin pills with his coffee and out the door he flew.
I checked with him throughout the day and all seemed to be fine. With the research I had done, I knew it was going to be the injection, not the pills that would possibly make him ill. I had everything prepared for when he got home. He had already made me promise that I would give him the shots. Although my former career was as a Surgical Technologist and I had assisted in surgeries from amputations to heart bypasses without incident, the simple thought of giving my beloved husband an injection in the stomach made me feel light headed. I almost had to recite it as an act in a play. Foremost, I did not want him to realize I was nervous.
When I heard him drive up, I went outside to greet him. I did not want him to feel like I was being pushy, but I was relieved when he told me he wanted to take the shot right away and get it over with. I could not have agreed more! We walked upstairs and as he was getting undressed, I prepared the injection.
"Can we do it in the bedroom?" I called out.
"I guess." he said as he stuck his head in the doorway.
It took me a few moments. I retrieved the medicine out of the refrigerator. Carefully took the preloaded syringe out of the box and removed the rubber stopper. The sterilized needle had to be removed from its packaging and placed firmly onto the syringe. I grabbed the alcohol swab and stood there for a moment longer taking a deep breath.
Smiling I walked into the bedroom and sort of carelessly plopped myself down onto the side of our bed.
"Come on over here." I told him."He walked over in front of me and lifted up his t-shirt.
"Where?" he asked.
I positioned him standing right in front of me and told him where I was going to inject him.
He responded with a stiff, "OK." taking a deep breath.
The needle was very short and delicate. I rubbed a small spot with the alcohol pad, pinched his skin a bit and pushed the needle in. I glanced up at his face as I started to inject the Interferon. At the same second I removed the needle, I leaned forward and kissed the sight. I leaned back and smiled saying, "All done! Did it sting?"
"No." he said with relief in his voice. "I didn't even feel it."
"See how good I am!" I responded with a raised eyebrow and a smirk on my face.
Little did he know that my hands were shaking and I was only a second away from passing out!
Friday, March 6, 2009
Medication Delay - Chapter 9
As the New Year approached, we broke out a bottle on Non-alcoholic wine our daughter Joy bought for us. We are not big partiers, so if I remember correctly we were both out cold way before the clock struck 12. Don had been fighting off a sinus infection and now since he was not allowed to take many over the counter medications, it seemed like it was taking longer than normal to get rid of it.
The next morning he struggled to get going. As usual, the never ending car business did not give him the holiday off he so badly needed. It was obvious that he was sick...too sick to start the Hepatitis medications that weekend. He was now running a fever. No matter! The workaholic in him kept going and out the door he went.... That night I approached him about the medications. He easily agreed with me. The start date had to be changed to the next Saturday night, the 10Th of January.
The next morning he struggled to get going. As usual, the never ending car business did not give him the holiday off he so badly needed. It was obvious that he was sick...too sick to start the Hepatitis medications that weekend. He was now running a fever. No matter! The workaholic in him kept going and out the door he went.... That night I approached him about the medications. He easily agreed with me. The start date had to be changed to the next Saturday night, the 10Th of January.
Thursday, March 5, 2009
Getting the Medication - Chapter 8
The days flew by. About mid December I decided it was time to fill Don's prescription. I knew the injections had to be refrigerated, so I chose a day that I was off of work to go to the Walmart pharmacy. That, after all was convenient and where we got all of our other medications.
I dropped off the paper prescriptions and went about my shopping, returning 40 minutes later. After waiting in line, the sales girl took my name, looked onto her computer screen and hesitated a few seconds. She lowered her voice and directed me to the consultation window to speak to the pharmacist. Concerned, I did as she asked. The pharmacist gave me back the papers and advised me that they did not carry the specific medications Don needed. Responding to a confused look on my face she said,
"These injections and pills cost $2700.00 for one months dose!"
I was dumbfounded and speechless. The only thing I managed to get out of my mouth was the words Thank you.
I returned to my car and continued to drive. The next pharmacy I came to was CVS. I was given the exact same response. This time I asked the pharmacist if she knew where I could possibly get these medications. She lowered her head and in almost a whisper she replied, "Try the 24 hour Walgreens down the street."
I was so appreciative of this advice and continued the journey. When I arrived at Walgreens, approached the counter and gave them the prescriptions, the pharmacist came over to assist me.
"Do you carry this medication, because no other pharmacy I have been to does and I am getting scared!" I blurted out to her.
"Yes Ma'am, we do. I can fill this for you now, but I do need to give you my card so that you can call us before you need a refill. This medicine is so expensive that you will need to call and order it."
"Thank you!" I replied.
I milled around the store until they called me back to pick it up. "Sorry it took so long. We had to call your insurance company and get a special approval to fill this." the sales girl said.
My eyes widened as she continued, "They approved it for 12 months." she said as she nodded at me. "That will be thirty dollars"
Walking back to my car, clutching the bag I repeated to myself, "I love my insurance, I love my insurance, I love my insurance...."
I dropped off the paper prescriptions and went about my shopping, returning 40 minutes later. After waiting in line, the sales girl took my name, looked onto her computer screen and hesitated a few seconds. She lowered her voice and directed me to the consultation window to speak to the pharmacist. Concerned, I did as she asked. The pharmacist gave me back the papers and advised me that they did not carry the specific medications Don needed. Responding to a confused look on my face she said,
"These injections and pills cost $2700.00 for one months dose!"
I was dumbfounded and speechless. The only thing I managed to get out of my mouth was the words Thank you.
I returned to my car and continued to drive. The next pharmacy I came to was CVS. I was given the exact same response. This time I asked the pharmacist if she knew where I could possibly get these medications. She lowered her head and in almost a whisper she replied, "Try the 24 hour Walgreens down the street."
I was so appreciative of this advice and continued the journey. When I arrived at Walgreens, approached the counter and gave them the prescriptions, the pharmacist came over to assist me.
"Do you carry this medication, because no other pharmacy I have been to does and I am getting scared!" I blurted out to her.
"Yes Ma'am, we do. I can fill this for you now, but I do need to give you my card so that you can call us before you need a refill. This medicine is so expensive that you will need to call and order it."
"Thank you!" I replied.
I milled around the store until they called me back to pick it up. "Sorry it took so long. We had to call your insurance company and get a special approval to fill this." the sales girl said.
My eyes widened as she continued, "They approved it for 12 months." she said as she nodded at me. "That will be thirty dollars"
Walking back to my car, clutching the bag I repeated to myself, "I love my insurance, I love my insurance, I love my insurance...."
Wednesday, March 4, 2009
Getting Through the Holidays - Chapter 7
Little was said between Don and I for the next few weeks about the diagnosis and treatment. We put it behind us and focused on all of the fun of the holidays. It was easy to do too. After all, Don did not look or act ill. The date was set though. We both knew that on January 3rd, he would get his first injection of Interferon and start the regiment of pills. He made it clear to me and to his doctor that he wanted all information and calls to come to me instead of him.
The basic plan was that Don would continue on as normal. He had no intention of taking disability, but was glad that we had a policy in place, just in case it ever came to that. At this time, he did not want anyone, other than our closest family and friends to know what was going on. I reluctantly agreed.
I could not however, stop researching daily about this disease, the treatments, complications and possible side effects. The internet can be as much a friend as an enemy though...as one of the first sights I happened upon was a list of celebrities who had circummed to Hepatitis C. From that moment on, I concentrated only on accredited sights, leaving the B.S. behind me.
The basic plan was that Don would continue on as normal. He had no intention of taking disability, but was glad that we had a policy in place, just in case it ever came to that. At this time, he did not want anyone, other than our closest family and friends to know what was going on. I reluctantly agreed.
I could not however, stop researching daily about this disease, the treatments, complications and possible side effects. The internet can be as much a friend as an enemy though...as one of the first sights I happened upon was a list of celebrities who had circummed to Hepatitis C. From that moment on, I concentrated only on accredited sights, leaving the B.S. behind me.
Tuesday, March 3, 2009
The Results - Chapter 6
Our appointment was the next Tuesday - exactly 7 days past the biopsy date. We sat in the waiting room for our name to be called for what seemed to be an eternity. Don could not sit still.
When our name was called, we were escorted into the exam room. The nurse came in after us and asked Don how he had been feeling.
"Good, good." he said anxiously.
She put the cuff around his arm and took his blood pressure.
"Humm, it's high." she said with a bit of a frown.
Don and I just locked eyes and smiled. We were thinking the same thing - white coat syndrome!
I like the fact that we never have to wait too long before the doctor comes in to the exam room once they get us in. He walked in with a smile on his face and extended his hand first to me and then to Don. He made some small talk about the economy and then asked how it was affecting Don's work. I started to squirm around in my seat. I had pen and paper ready to take notes and was growing ever impatient. At the second that I thought I might scream - the doctor finally got down to business and opened up Don's chart.
He asked Don how the biopsy went and if he endured any further pain. Don gave the quick one word answer "No."
He turned to me and asked, "He is not drinking any alcohol, is he?"
"Not a drop!" I replied.
"Good! I am not going to try and save your liver if you are going to do anything that will damage it." he responded and dropped his head back down into the paperwork.
"Well, I do see from the test that you are in the early stages of cirrhosis." Don's eyes were locked onto the doctor and mine were on Don. He shuddered a bit and his mouth opened slightly in the silence that followed. The doctor continued to thumb though the paperwork and started to speak again.
"I want you to try the drug treatment though. You are not so far along that it might not work for you. The presence of cirrhosis makes it harder to cure the Hepatitis C, but not impossible. There is about a 50-50 chance. Are you familiar with the treatment?"
Don told him of a friend he works with who had genotype 2 Hep.C and had just completed the 24 week treatment with complete success. The doctor nodded.
"You will need to be on the 48 week therapy of drugs which will consist of..." he looked again down at the paperwork, "how much do you weigh?"
Don responded "215?"
"Okay." Doctor continued, "You will get 6 Ribovirin pills per day, 3 taken in the morning and 3 at night and 1 injection of Interferon in the abdomen per week. I usually recommend that you take the shot before your days off until you see how your body responds to it. It makes most of my patients feel like they have the flu. Some patients carry on much the same as they always have and I have others who have had to go on disability." He paused. "I know we are close to the holidays. Do you want to start now, or wait until January?"
"Wait until January. I will take the injection the first Saturday night in January." Don responded.
"I will need to see you for an office visit and blood work after you have been on the medication for 2 weeks. We will be monitoring your white blood cell count and your platelet count. If your white blood cell count goes down, we can give you an injection to get it back up. If however, your platelet count goes down too low, we may have to stop the treatment. There is no shot that will increase the platelets. Many of my patients need to go on antidepressants when they start these meds. If you feel like you need this, just call and I will prescribe them for you."
He then turned to me smiling and said, "Sometimes the men will not be honest with me, so I will also ask you if you think he needs the antidepressants too!"
I frantically scribbled notes to myself with numbers and names of things long lost in my memory from back in college. Not normally a fan of antidepressants either, I set my mind to be totally open to this idea for him. Anything that could make the journey easier on us was a positive!
The minute the doctor left the room, both Don and I stood up and just hugged each other. We reassured each other that although this was not the best news that we were hoping for, it was certainly not the worst either!
When our name was called, we were escorted into the exam room. The nurse came in after us and asked Don how he had been feeling.
"Good, good." he said anxiously.
She put the cuff around his arm and took his blood pressure.
"Humm, it's high." she said with a bit of a frown.
Don and I just locked eyes and smiled. We were thinking the same thing - white coat syndrome!
I like the fact that we never have to wait too long before the doctor comes in to the exam room once they get us in. He walked in with a smile on his face and extended his hand first to me and then to Don. He made some small talk about the economy and then asked how it was affecting Don's work. I started to squirm around in my seat. I had pen and paper ready to take notes and was growing ever impatient. At the second that I thought I might scream - the doctor finally got down to business and opened up Don's chart.
He asked Don how the biopsy went and if he endured any further pain. Don gave the quick one word answer "No."
He turned to me and asked, "He is not drinking any alcohol, is he?"
"Not a drop!" I replied.
"Good! I am not going to try and save your liver if you are going to do anything that will damage it." he responded and dropped his head back down into the paperwork.
"Well, I do see from the test that you are in the early stages of cirrhosis." Don's eyes were locked onto the doctor and mine were on Don. He shuddered a bit and his mouth opened slightly in the silence that followed. The doctor continued to thumb though the paperwork and started to speak again.
"I want you to try the drug treatment though. You are not so far along that it might not work for you. The presence of cirrhosis makes it harder to cure the Hepatitis C, but not impossible. There is about a 50-50 chance. Are you familiar with the treatment?"
Don told him of a friend he works with who had genotype 2 Hep.C and had just completed the 24 week treatment with complete success. The doctor nodded.
"You will need to be on the 48 week therapy of drugs which will consist of..." he looked again down at the paperwork, "how much do you weigh?"
Don responded "215?"
"Okay." Doctor continued, "You will get 6 Ribovirin pills per day, 3 taken in the morning and 3 at night and 1 injection of Interferon in the abdomen per week. I usually recommend that you take the shot before your days off until you see how your body responds to it. It makes most of my patients feel like they have the flu. Some patients carry on much the same as they always have and I have others who have had to go on disability." He paused. "I know we are close to the holidays. Do you want to start now, or wait until January?"
"Wait until January. I will take the injection the first Saturday night in January." Don responded.
"I will need to see you for an office visit and blood work after you have been on the medication for 2 weeks. We will be monitoring your white blood cell count and your platelet count. If your white blood cell count goes down, we can give you an injection to get it back up. If however, your platelet count goes down too low, we may have to stop the treatment. There is no shot that will increase the platelets. Many of my patients need to go on antidepressants when they start these meds. If you feel like you need this, just call and I will prescribe them for you."
He then turned to me smiling and said, "Sometimes the men will not be honest with me, so I will also ask you if you think he needs the antidepressants too!"
I frantically scribbled notes to myself with numbers and names of things long lost in my memory from back in college. Not normally a fan of antidepressants either, I set my mind to be totally open to this idea for him. Anything that could make the journey easier on us was a positive!
The minute the doctor left the room, both Don and I stood up and just hugged each other. We reassured each other that although this was not the best news that we were hoping for, it was certainly not the worst either!
Monday, March 2, 2009
Waiting for the Biopsy Results - Chapter 5
I realized by some of your sweet comments that you think I am telling this in real time. All of these things have already happened. It is just easier for me to type it out in small segments because so much has happened in such a small amount of time. I will try and type something every day and when I get to the point of what we are going through in the present - I will advise you all. I am so humbled by all of your sincere responses!
The liver biopsy was relatively painless for Don. He did experience some typical pain under his shoulder blade that evening and the following day, but he returned to work on Wednesday. He had not told many people at his work about this and was glad he did not miss a day and have to give an excuse.
In the week that followed, we did not speak much about it and just impatiently waited for our next doctors appointment. It was a agonizing 7 days later. The results could be anything from devastating to a huge relief. It was from this biopsy we would learn if his liver was still healthy, had fibrosis, or if he had cirrhosis. If he was diagnosed with cirrhosis and it was in the later stages, Don might not even be a candidate for the drug treatment.
The liver is a remarkable organ. It can in most cases literally grow back and regenerate itself if injured. The only time this is not true is in the case of cirrhosis.
The liver biopsy was relatively painless for Don. He did experience some typical pain under his shoulder blade that evening and the following day, but he returned to work on Wednesday. He had not told many people at his work about this and was glad he did not miss a day and have to give an excuse.
In the week that followed, we did not speak much about it and just impatiently waited for our next doctors appointment. It was a agonizing 7 days later. The results could be anything from devastating to a huge relief. It was from this biopsy we would learn if his liver was still healthy, had fibrosis, or if he had cirrhosis. If he was diagnosed with cirrhosis and it was in the later stages, Don might not even be a candidate for the drug treatment.
The liver is a remarkable organ. It can in most cases literally grow back and regenerate itself if injured. The only time this is not true is in the case of cirrhosis.
Sunday, March 1, 2009
The Biopsy - Chapter 4
It was a Tuesday, Don's regular day off from work. We arrived at the outpatient center by 11:00AM. Don was noticeably nervous. We waited for about 10 minutes in the waiting room until they called his name. I was allowed to go back with him. We entered a room where Don was given a gown to change into. The nurse came into the room and took yet another blood sample. They had to check his platelet count prior to this procedure being done.
Normal platelet count is 140,000 to 400,000. Don's tested at 113,000 that day. That was lower than normal, but not so low that they were going to put off the biopsy.
Another nurse started an IV on Don and shortly thereafter, came to take him back. He was left outside the treatment room and had to wait until the previous patient was done. After several minutes, the door opened and they wheeled a woman out. She was half conscience and moaning LOUDLY. Don later told me, it took all the courage he could muster to stay on that gurney!
Once in the treatment room, he was given a dose of Versed, a drug that calms the patient and lowers the blood pressure. It can also cause some temporary amnesia. It worked and he did relax. Don was moved into the MRI machine. Once the MRI was complete and the exact route for the biopsy was decided upon, the doctor entered the room. He had Don turn onto his left side and lay very still. As soon as it started, it was done. They bandaged the sight, rolled him over onto his right side and brought him back to me in a hospital room. He had to lay on this side for over 4 hours. The nurse came and checked the biopsy sight for bleeding or seepage. That looked good and we were allowed to go home.
It would be another week before we would know the results.
Normal platelet count is 140,000 to 400,000. Don's tested at 113,000 that day. That was lower than normal, but not so low that they were going to put off the biopsy.
Another nurse started an IV on Don and shortly thereafter, came to take him back. He was left outside the treatment room and had to wait until the previous patient was done. After several minutes, the door opened and they wheeled a woman out. She was half conscience and moaning LOUDLY. Don later told me, it took all the courage he could muster to stay on that gurney!
Once in the treatment room, he was given a dose of Versed, a drug that calms the patient and lowers the blood pressure. It can also cause some temporary amnesia. It worked and he did relax. Don was moved into the MRI machine. Once the MRI was complete and the exact route for the biopsy was decided upon, the doctor entered the room. He had Don turn onto his left side and lay very still. As soon as it started, it was done. They bandaged the sight, rolled him over onto his right side and brought him back to me in a hospital room. He had to lay on this side for over 4 hours. The nurse came and checked the biopsy sight for bleeding or seepage. That looked good and we were allowed to go home.
It would be another week before we would know the results.
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