On Friday my new drug, revatio, was delivered. I got two doses in that day and have been taking three doses a day since then. It's hard to judge if it is working any better because it's been so very hot here. Today it's supposed to reach 94. When I go outside it's difficult to walk at all. Easier WITH the portable oxygen tank, yes but still not easy. I have been in a funk lately and over the weekend Rob took me to Joe's Crab Shack to cheer me up. The crab legs were delish but I have never had a whole lobster before and when I saw it's eyes I coudn't eat it. I brought it home and my neighbor enjoyed it. I had enough to eat with the 4 shrimp, two crab legs (from a Queen crab) two boiled potatoes and an ear of corn. It was my belated birthday meal I hadn't had.
I have been so busy trying to get requalified to my long term disability for another six months. My SSDI payment is very low and this subsidizes it. Even with it, I only get 50% of what I made working. Without it I get less than 20% of what I made working. As prices steadily increase for EVERYTHING it's so difficult to get by on less. I had recieved some insurance money from my father's passing which was a tremendous help last year. That was a one time thing though. I don't mean to keep bringing up money but when I just saw my last bill for my U Penn visit it was really high. MY cost was over $400.00 for the ONE visit. Insurance paid about six thousand.
Today is Tuesday and that means our PH Chat in the afternoon which I really enjoy. I look forward to Tuesday afternoons, especially when it's too hot to be doing much of anyhing else. Stay cool.
Tuesday, July 24, 2012
Thursday, July 19, 2012
Patience is Not One of My Virtues
My birthday ended up being somewhat of a disaster. I won't go into the specifics here but trust me, it was my worst ever. I ended up spending the day in bed pretty much.
On the PH front things are not going well. After my last visit where my doctor seemed happy that my heart was looking more normal and functioning somewhat better I had been encouraged. He got my labs back and things changed. I haven't seen him to discuss it but apparently things didn't look so good there. He decided nearly two weeks ago to change my medicine and have me stop the old one. For one thing, he thinks the old one was causing me to take on fluid. I didn't need help for that, trust me. The doses of diuretics cause problems themselves and the last thing I need is another "lung tap." Trying to change the medicine has not gone smoothly. Not at all. The pharmaceutical company (remember these drugs come from specialty pharmacies and your insurance dictates which one you must use) has really made if difficult for me. As they say "The road to hell was paved with good intentions." Originally my insurance company said my copay would be $450.00 per month. The pharmacy told me to contact Pfizer about drug assistance as I could not afford the copay. I did, and they had my doctor fax over a ton of paperwork to them. I waited a week until they called me and said that my insurance said my copay would be under $100.00 which means they could not help me, although financially I did qualify for assistance. They advised me to call their OTHER line for a card which would only charge me $4.00 per month. I did that and waited...and waited.....and waited. I kept calling the pharmacy back asking when I would receive my new drug. They told me I had to wait to see what assistance pfizer would give me and they needed a number off the card before they could ship the drug. After half a dozen calls to the $4 COPAY line and not receiving a card, I finally spoke to a PERSON. Each time I had called I had to leave information that was recorded but never spoke to a person. I hate set ups like this. I applaud Pfizer for helping patients but their system caused a lot of stress and a complete lack of communication. The person I spoke with told me that it would take four to six weeks to get the card and then I had to call and register the number on the card. I called the speciality pharmacy back and now they were closed. I have waited weeks for this drug which hasn't even been shipped yet because no one seemed to understand this card or anything about it. Now I will be forced for at least ONE month to pay the full copay which honestly will be difficult. I have to call that pharmacy this morning and explain I need this medication YESTERDAY. If they give me any problem, I am calling my doctor directly to call them.
As though that were not enough stress, my INR was bad. This shows how thin your blood is. When you have two artificial heart valves it is crucial to keep your blood thin so it avoids making clots which can be fatal or cause a stroke or heart attack. When I went for my check up they were so upset to see how low my number was, I was put back on Lovenox shots which are given in the belly and are very painful. They are also very expensive. I have been getting them this week and this morning I go for a recheck to see if I can get off them. I've had many people say "Well I take insulin shots in the belly and it's no big deal." I have had those and they are no big deal.....this drug burns like you have been stung by a wasp. Then you get horrific bruising all over your belly and look like you were beaten with a bat. I have knots and soreness in my belly.
Well, time to get dressed and get my bed made. I have to be at the cardiologist at 8:30 this morning to see how the blood is going. I am so tired having only slept about 5 hours. I will nap later today.
On the PH front things are not going well. After my last visit where my doctor seemed happy that my heart was looking more normal and functioning somewhat better I had been encouraged. He got my labs back and things changed. I haven't seen him to discuss it but apparently things didn't look so good there. He decided nearly two weeks ago to change my medicine and have me stop the old one. For one thing, he thinks the old one was causing me to take on fluid. I didn't need help for that, trust me. The doses of diuretics cause problems themselves and the last thing I need is another "lung tap." Trying to change the medicine has not gone smoothly. Not at all. The pharmaceutical company (remember these drugs come from specialty pharmacies and your insurance dictates which one you must use) has really made if difficult for me. As they say "The road to hell was paved with good intentions." Originally my insurance company said my copay would be $450.00 per month. The pharmacy told me to contact Pfizer about drug assistance as I could not afford the copay. I did, and they had my doctor fax over a ton of paperwork to them. I waited a week until they called me and said that my insurance said my copay would be under $100.00 which means they could not help me, although financially I did qualify for assistance. They advised me to call their OTHER line for a card which would only charge me $4.00 per month. I did that and waited...and waited.....and waited. I kept calling the pharmacy back asking when I would receive my new drug. They told me I had to wait to see what assistance pfizer would give me and they needed a number off the card before they could ship the drug. After half a dozen calls to the $4 COPAY line and not receiving a card, I finally spoke to a PERSON. Each time I had called I had to leave information that was recorded but never spoke to a person. I hate set ups like this. I applaud Pfizer for helping patients but their system caused a lot of stress and a complete lack of communication. The person I spoke with told me that it would take four to six weeks to get the card and then I had to call and register the number on the card. I called the speciality pharmacy back and now they were closed. I have waited weeks for this drug which hasn't even been shipped yet because no one seemed to understand this card or anything about it. Now I will be forced for at least ONE month to pay the full copay which honestly will be difficult. I have to call that pharmacy this morning and explain I need this medication YESTERDAY. If they give me any problem, I am calling my doctor directly to call them.
As though that were not enough stress, my INR was bad. This shows how thin your blood is. When you have two artificial heart valves it is crucial to keep your blood thin so it avoids making clots which can be fatal or cause a stroke or heart attack. When I went for my check up they were so upset to see how low my number was, I was put back on Lovenox shots which are given in the belly and are very painful. They are also very expensive. I have been getting them this week and this morning I go for a recheck to see if I can get off them. I've had many people say "Well I take insulin shots in the belly and it's no big deal." I have had those and they are no big deal.....this drug burns like you have been stung by a wasp. Then you get horrific bruising all over your belly and look like you were beaten with a bat. I have knots and soreness in my belly.
Well, time to get dressed and get my bed made. I have to be at the cardiologist at 8:30 this morning to see how the blood is going. I am so tired having only slept about 5 hours. I will nap later today.
Sunday, July 1, 2012
Birthday Countdown.....
A week from today is my birthday. I'm so excited. Why? Because I made it to another one. Yea!!!! Every year since my cancer diagnosis at 23 has been a huge victory for me. I don't take life or anything for granted.
I went for my other CT scan and it showed no fluid. That was good....except they found two enlarged lymph nodes. (they had found one at U Penn last year.) Since I have a history of lymph gland cancer this is going to have to be monitored. My lung doctor said not to be panicked by this as my body has been through a lot of trauma and it could be some kind of virus or low grade infection. I am counting on that and honestly, not worrying much about it. There have been other times they thought I might have something and it was worrying for nothing. For me, the focus is getting those PH numbers down. My heart has improved which is why I am not mass producing the fluid right now. It has shrunk (it was very enlarged) and the third leaking valve is leaking less. Yes, I have yet another leaking valve. While I was on the operating table they tested it and it wasn't leaking but it slowly began to leak due to the heart failure and enlarged size. So, I will be focusing on the good and improved and hoping for things to get even better.
There is nothing I really want for my birthday. Just a great cake. Rob usually gets me a strawberry shortcake. Not just any strawberry shortcake but from a fabulous bakery. I love strawberry and we had it as the filling in our wedding cake. Lately I have been craving lemon. Maybe something with lemon. We'll see.
Stay cool. We are in another heatwave. A bad storm Friday night left many without electricity, including my family in the Maryland area. Hoping it comes back soon for them.
I went for my other CT scan and it showed no fluid. That was good....except they found two enlarged lymph nodes. (they had found one at U Penn last year.) Since I have a history of lymph gland cancer this is going to have to be monitored. My lung doctor said not to be panicked by this as my body has been through a lot of trauma and it could be some kind of virus or low grade infection. I am counting on that and honestly, not worrying much about it. There have been other times they thought I might have something and it was worrying for nothing. For me, the focus is getting those PH numbers down. My heart has improved which is why I am not mass producing the fluid right now. It has shrunk (it was very enlarged) and the third leaking valve is leaking less. Yes, I have yet another leaking valve. While I was on the operating table they tested it and it wasn't leaking but it slowly began to leak due to the heart failure and enlarged size. So, I will be focusing on the good and improved and hoping for things to get even better.
There is nothing I really want for my birthday. Just a great cake. Rob usually gets me a strawberry shortcake. Not just any strawberry shortcake but from a fabulous bakery. I love strawberry and we had it as the filling in our wedding cake. Lately I have been craving lemon. Maybe something with lemon. We'll see.
Stay cool. We are in another heatwave. A bad storm Friday night left many without electricity, including my family in the Maryland area. Hoping it comes back soon for them.
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