When I start a new medicine I try to avoid reading the side effects. Once I have what I think is one I pull out the information and check it. I have been having insomnia, many nights I am only getting four hours sleep and I am exhausted. Saturday night I was in bed asleep at ten p.m. and I slept until after seven a.m. on Sunday. It is almost 4 a.m. and I have not been to sleep yet, although I have been trying since midnight. My eyes are so fatigued. Sleep disturbances are a side effect for me.
Last Monday I saw my cardiologist. Remember in addition to the PH I have some heart issues. My EKG had changed and shown some problem. He discussed the possibilities and told me that he wanted a chemical stress test done as soon as they could obtain insurance approval for it. I haven't been given a date yet. My tachycardia is very bad right now also. When I have trouble sleeping this makes things much worse. I can hear the mechanical valves and the tachycardia distracts me from relaxing as I would like to. I am often reminded of Edgar Allen Poe's "The Taletell Heart." To say I am discouraged would be an understatement. I have medical bills coming in daily and I don't seem any better off than I was. I have times I wonder if they can actually help me. I am battling heart and lung problems, not just one or the other. I have been battling the old insurance company who didn't pay for several of my pulmonary rehab visits. The provider is insisting I pay. I did an appeal which was denied and have now filed a complaint with the insurance board for the state of New Jersey. I already paid her over $500.00 and she wants over $200 more from me. She doesn't care that her phone calls upset me either. It seems my days recently are spent dealing with this and other bills. I had three arrive in Saturday's mail.
Well, that's the latest news around here. I hope things will be better and I have some good news for my next post. Until I know the results from the stress test I will be concerned.
Monday, August 13, 2012
Tuesday, July 24, 2012
Revatio At Last You Are Mine!
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.
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.
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.
Saturday, June 23, 2012
Moving Right Along
I found out that there were some cells in my fluid they removed that should not have been there. UGH. I have to have another CT scan on Monday. If there is more fluid now (or later) I need to have it removed and biopsied. Since I have a history of lymphoma this will have to be watched as the cells were inflammatory lymph cells. I am not going to sweat this. The lung doctor feels it could be as a result of all the trauma my body went through last year. Hard to believe that eleven months ago I was just home from the hospital after respiratory failure and waiting to have yet another heart surgery late July. I've come so far.
Most of my PH friends are at a convention in Florida. How I wish I could be there. Some of them had a hard time getting oxygen delivery squared away. I didn't have the money to go and honestly, I couldn't handle the stress at this time of the travel and worries about oxygen. I have been dealing nonstop with medical issues and bills here. I kid you not, practially every spare penny goes for medical expenses. We just got done refinancing our home to lower our mortgage payment. The difference will make our car payment. We have also reduced our bundle package services to save $70 per month. Every bit helps.
Most of my PH friends are at a convention in Florida. How I wish I could be there. Some of them had a hard time getting oxygen delivery squared away. I didn't have the money to go and honestly, I couldn't handle the stress at this time of the travel and worries about oxygen. I have been dealing nonstop with medical issues and bills here. I kid you not, practially every spare penny goes for medical expenses. We just got done refinancing our home to lower our mortgage payment. The difference will make our car payment. We have also reduced our bundle package services to save $70 per month. Every bit helps.
Sunday, May 27, 2012
A Local Girl
There was a story on our local news about a little girl with pulmonary hypertension. If you want to watch the video click here. It is so sad when you know a young child has had to deal with this. While I struggle now I was pretty healthy up until about twenty years old. I cannot imagine how hard it is to be a sick child. Especially if you have healthy siblings running around. I thought they did a great job of explaining what pulmonary hypertension was in the video.
The weather has been very bad humidity wise. It was 85 yesterday and I struggled when I left the house. I think the temperature doesn't help but primarily it's from the humidity.
The weather has been very bad humidity wise. It was 85 yesterday and I struggled when I left the house. I think the temperature doesn't help but primarily it's from the humidity.
Thursday, May 17, 2012
Fluid Gone (at least for awhile)
On Friday I had my procedure, the thoracentesis where they removed the fluid which ended up being about one litre. Ironically, this hurt more than the first time they did it. Not as much as the last time though, when I ended up with a chest tube.
I came home quite sore and kind of took it easy for the weekend. On Sunday my son came over. We went to the mall to replace his broken cell phone and picked up cake to take to my mother's. I came home and tried to take it easy but by now my right hand was hurting, particularly around my thumb. When they had the needle in my back I was required to grab onto a hospital table and hold tight. I think that injured it somehow. Yesterday I had to go see a doctor who told me to put ice on it and take some antiinflamatories. While I was waiting for the lung procedure I had to go off of my coumadin. This means that I must have shots of Lovenox in my belly to keep my blood thin (only works for about twelve hours like heparin.) I had to not have it Friday morning and begin again Friday evening. My belly looks horrible. It's one gigantic bruise and some huge lumps which are painful. Yesterday my INR was 2.5 which means I got to stop the painful, expensive shots. YES!!! I was thrilled.
Even though they removed the fluid I am somewhat breathless. I had my oxygen tank refilled today. At night when I put on my mask and feel the oxygen going through my cpap mask it is pure heaven. The machine also adds moisture.
My entire family (mother, brother and his wife, sister and her "friend" are going to my mother's vacation house which is a town my other brother and his family live in. I was asked to come but a. oxygen would be a problem and b. there wasn't going to be enough room. It kind of depresses me that life goes on. I am left out of many things and no one seems to even think how that makes me feel. I went to Bed, Bath, and Beyond for new sheets today and I saw these people running and having it so easy and I thought how they will never know how I feel. I wouldn't wish this on anyone. Somedays I have a lot of spunk and can push through but when you have several bad days in a row it's really hard.
I came home quite sore and kind of took it easy for the weekend. On Sunday my son came over. We went to the mall to replace his broken cell phone and picked up cake to take to my mother's. I came home and tried to take it easy but by now my right hand was hurting, particularly around my thumb. When they had the needle in my back I was required to grab onto a hospital table and hold tight. I think that injured it somehow. Yesterday I had to go see a doctor who told me to put ice on it and take some antiinflamatories. While I was waiting for the lung procedure I had to go off of my coumadin. This means that I must have shots of Lovenox in my belly to keep my blood thin (only works for about twelve hours like heparin.) I had to not have it Friday morning and begin again Friday evening. My belly looks horrible. It's one gigantic bruise and some huge lumps which are painful. Yesterday my INR was 2.5 which means I got to stop the painful, expensive shots. YES!!! I was thrilled.
Even though they removed the fluid I am somewhat breathless. I had my oxygen tank refilled today. At night when I put on my mask and feel the oxygen going through my cpap mask it is pure heaven. The machine also adds moisture.
My entire family (mother, brother and his wife, sister and her "friend" are going to my mother's vacation house which is a town my other brother and his family live in. I was asked to come but a. oxygen would be a problem and b. there wasn't going to be enough room. It kind of depresses me that life goes on. I am left out of many things and no one seems to even think how that makes me feel. I went to Bed, Bath, and Beyond for new sheets today and I saw these people running and having it so easy and I thought how they will never know how I feel. I wouldn't wish this on anyone. Somedays I have a lot of spunk and can push through but when you have several bad days in a row it's really hard.
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