Thursday, December 29, 2011


I have to rant for a bit. If you don't like ranting just skip this entry. I have posted on my FB that I have pulmonary hypertension. Anyone who has any interest in knowing what is going on with me could look it up through google. You quickly learn a few things. #1 It is incurable. #2 There are nine drugs used to treat it. (Some require a central line put in to use as they can only be given intravenously. Most of those also require you have a pump to push the medicine through 24/7) #3 You have good days and bad days. Now, having said those simple things why do people either a. act like you are dying soon or b. act like there is nothing wrong with you or c. act like you will overcome it completely. I am a realist. I don't plan to die in the immediate future. I plan to try drugs, I have started the first one nearly three weeks ago. There are days I feel like I have an incurable disease. There are days I feel okay enough to do some things. I will never feel healthy or energetic as a normal person would. This week one friend (who I believed was having some wine early in the day) called and cried about what a loss she would suffer as I was the greatest friend. To be honest, this annoyed me but didn't upset me in any other way. It annoyed me more when a friend I sent a letter to just ignored it. No phone call but yet another FB message wishing me well, in a generic sense. One of my friends I have made who also has PH (so cute they call each other PHriends) advised me I need some new friends. She said you need support and the people who can't offer you that don't really care about you. I think she was right.

Monday, December 26, 2011

Another Disappointing Christmas

It's been so many years since I loved Christmas.....I guess when you aren't a child, or no long have a long child something in the excitement gets lost. This year, like so many before it was a huge disappointment. It actually started weeks ago. A sister-in-law decided she no longer wanted to exchange gifts. This is someone whose income is multiple times what mine is and gets everything she wants all year long. She no longer felt she wanted to buy us gifts or receive things that she didn't want. She told me that she was going to do this with the entire family and not attend my brother's Christmas Eve family gathering and gift exchange. After she told me that she said "Is that okay with you?" How do you answer something like that, if you say that it's not okay and you want to exchange you are trying to make her do something she doesn't want to. Besides she said she wasn't going to my brothers so I didn't think it would be so bad. About a week later she informed my sister of the same thing. That night she was at my brother's and guess what? She didn't tell them she wasn't exchanging gifts and she had a nice pile of gifts for them. When we arrived she had made sure she arrived early and was in the kitchen away from the others when they arrived. I was really hurt and felt mislead. While this may seem trite please remember this is a year where my father died, where I was hospitalized four times, had the heart surgery and received the news that my condition was not curable. NOT a good year to put it mildly. I tried to focus on the my loving sister-in-law who was the hostess. I cried when I got home for hours but then tried to let it go. I knew Christmas Day they would not be at my mother's. I arrived at my mother's (with a seven pound hot ham and casserole dish of sweet potatoes) and they were no where near ready to eat. My mother is very disorganized and nothing in her kitchen is in the same location twice. We never could locate the turkey lifters and my sister struggled to get a twenty pound turkey out of the oven with a fork and pancake turner. Needless to say, it fell apart. We sat down to dinner and things didn't taste right or well to me. I was freezing as well. After dinner my sister and I were sitting in the living room talking. The back door into the family room/kitchen area opened and I heard someone coughing their head off. They sounded very ill and I realized it was my sister-in-law bringing over my mother's gifts. I felt anxious as her coughing sounded like bronchitis or worse. Around that time my brother started a fire in the wood stove and a horrible smelling smoke filled the downstairs. At that point I knew I had to leave. Rob had run home to feed the animals dinner and I called him and told him to get right back and pick me up. He found me waiting outside wrapped in a blanket. When I grabbed my purse from the room the cougher was in she said something like "Where are you going?" I answered "No where near you." She then snapped to my brother "We're leaving." How thoughtful after contaminating my eighty year old mother and her home with her germs and filling her house with smoke, they were ready to leave. When I got home I was so cold I shook for hours. As the night progressed I felt worse and during the night I began vommitting. I will not be planning to go to my mother's house again. She knows where I live and can come here. My sister feels I am not up to entertaining here but trust me, it's a lot better than what happened to me yesterday. My stomach is touchy today but not like last night. Next year I want to skip it altogether.

Thursday, December 22, 2011

The Stockings Were Hung Sans Chimney

Sometimes I really, really, really miss my old house. In particular the large dining room where I had family meals and my fireplace. Oh how I loved the cozy fireplace. It burned wood for many years and the last few years I lived there I had it converted to gas. That was pure heaven. The logs, though ceramic, looked like oak and the warmth was amazing. At Christmas time I loved to hang our stockings from it. We are those nutty type people who have stockings for each pet as well, even birds. The stockings always held gifts as well as candy and smaller items. They still do. I had a huge tree back then. We had grown many of them on the back acre of our property. While it bothered me to cut them down I was glad I did when a neighbor who later moved in behind us cut down about eight huge blue spruces that had been planted for that purpose. He thought it blocked his view to our garden. I was so outraged but it was too late to be rectified. What really infuriated me was that this man from Long Island never bothered asking us where the property ended and we had paid the surveyor several hundred dollars to sink concrete markers should we ever need to show someone. Had he just ASKED those trees would still be there. He left them on OUR property after cutting them down to rot. But I our newer, smaller home there is no place for a fireplace at all. It's completely open. The kitchen wall over the sink has a huge opening into the living room so you can communicate with someone there. While I like the openness of it, you lose wall space. Our TV could only go on one wall. The other wall has a huge bay window. It's really tough placing things, especially a Christmas tree. We always put it in front of the window. We have a slim tree and it fits nicely. My tree does not have a theme, as some do. My tree has ornaments that were made by my son when little, or given by friends many years ago. Some break and new ones are constantly added. It's a tree of memories. This year two new ornaments were added. One in memory of my beloved Grandmother and the other in memory of my beloved Dad. How my grandmother loved Christmas! She started baking a month in advance. She did so wearing an apron with Santa popping out of the chimney. She made one for herself, one for her mother (who was in her late 70s at the time but still baking!) and a small smock type one for me. I have mine. It has been laundered so many times it has a small hole in it. It's one of my treasures. That and the paper mache' Santa that my son made me. This has been a rough week. My mother has cried day and night on and off most of it. Sometimes I cry with her. We have been to the cemetery twice. No Dad there carving the meat at the head of the table. He hadn't been able to do that the last year and a half either. We could never please Dad with gifts, he enjoyed giving them but not getting them. I miss him so much. I bought these small ornaments with a place for a picture. On the outside they say "Forever in our Hearts" and I put Dad's picture in them. On the back I used a label maker and printed out a message that my sister and brothers will read when they take them out: " We were blessed. We had a father who loved us." It's my way of honoring him. My father was not perfect. He made bad decisions sometimes and he yelled to excess at times. I have some of his faults and some of his attributes. We both are quick to forgive. When I read some of the horrible things that some parents do to their children it makes my blood boil. All children deserve to be loved and kept safe. Since my Dad is gone I feel less safe somehow. Silly perhaps, I am an adult. While a part of me will be sad on Christmas Eve and day, I will do the best I can to enjoy the moments. I know it's what my father would have wanted me to do. I can still hear his voice in my head "Oh babe, it's not that bad." You're right Dad. No matter how bad it seems I know there are others who have it so much worse. I will always fight for a good outcome because you taught me to hang in there when the going got tough. Thank you Daddy. I love you and always will.

Friday, December 16, 2011

It's Beginning to Look a Lot Like Christmas

We got the tree up! Rob put it up Wednesday night and I decorated it in short sports of effort on Thursday. When he came home it had all the ornaments and garland on it. I was also baking sugar cookies and he helped me. I make the same sugar cookie recipe all the time. I have cookie cutters for vaious holidays and it's a standard. I get requests for them. This year I did colored sugar for some but frosted and decorated others. I should have taken pictures before putting them in the tins. We decorated them with white or red frosting and the Wilton bags with tips. My angels were very pretty with tiny decorations that look like pearls. So yummy.

I was supposed to go to rehab today but just couldn't as my legs were in so much pain (a known drug side effect.) I was up for hours during the night. Rob called about 11 a.m. saying he felt ill and was on his way home from work. Right now our gifts are purchased, tree is trimmed and cookies are baked so we can relax a bit. I am giving fewer gifts this year. Does anyone else feel annoyed, as I do, when you see commercials where they are giving diamond jewelery or a new car? PLEASE!!! In this economy where some people have no jobs it's just wrong to imply you are not a good spouse if you are not giving a gift like this. I cannot imagine how materialistic some of the kids who view these from birth will be. Because I am home and get bored (or don't feel well enough to do anything other than watch tv) I have watched some of the Housewives of shows....some of these women are unbelievable. A man presents a ring to his wife and she can't thank him until she adds up the diamonds and tries to estimate the carats. I actually wonder are they kicking this up a knotch or two for the camera? I hope so. They attend/host charity events that are a joke. Not that much money seems to be made and the focus is on what they are wearing or eating and gossiping about those not there. When it comes to their affairs the sky is the limit. One group was critical of another member because she doesn't work and has three nannies and other help. I have to wonder what would happen if they had a real problem to deal with (well at least not one they created.)
My sister is coming Thursday. That leaves us three days to visit and shop before the Christmas Eve celebration at my brother's house. They always have everyone and a huge spread of snacks and desserts. I'm doing a Christmas dinner with ham, with my sous chef's help. :)
Hope the sun is shining in your little part of the world today.

Wednesday, December 14, 2011

The Adcirca is here!

I got the approval and my drug arrived today. At 3 p.m. I took my first dose. If you want to know more about that check the new blog with the link in my last entry.

Rob and I went out last night and I had a drink. I will only be allowed to have 4 ozs. of wine once a week from here on. The alcohol affects blood pressure and so do the meds so they discourage drinking. We went to Chili's and a got a snack. Also went the mall and splurged on a new down comforter. I tried to be more economical and get a down alternative but it didn't compare. I got a Macy's coupon and it was only $50 more to get the real down and well worth it! We had ordered a red duvet cover a few weeks ago but when I got out our cold comforter it was in bad shape. Besides, they know make them much bigger and there won't need to be a tug of war while we are both sleeping! It's hard enough to sleep with a Cpap mask on without trying to get my fair share of the comforter.

Today I went to rehab and then came home but was exhausted. I changed the sheets on the bed and managed to get the new comforter into the duvet. I still have cookie dough waiting to be made into fun shapes and decorated. We have yet to put our tree up and Rob is out now picking up a few groceries and looking for some things he wants with Chistmas money from my Mom.
That's about all the news for now. Supposed to rain tomorrow and maybe I can get Rob just to get the tree down and together. I have all day tomorrow to decorate it and work on the cookies. Hopefully I will have a good day.
Hope you will too.

Sunday, December 11, 2011

Pulmonary Hypertension Blog

I didn't start out with the idea that this blog would be dealing with my illnesses. It was just a place to write my ideas and stay in touch with some of my friends. Since I have so much to say about the subject and I find there is little in the way of support for other patients who have this (it is called an orphan drug because of it's rarity there are few organizations who support it and the costs of the drugs are great.)
If you want to follow my journey with the PH the new blog link is:
I will be posting here as well but not going into the details that I will there.

Saturday, December 10, 2011

As Tom Petty Said "The Waiting is the Hardest Part"

I am still waiting to hear that my insurance company approved the medicine for me. Since this is an "orphan disease" with few patients, the cost of the meds are astronomical. The one I am trying to get would be about $1600.00 per month. I have no idea what my copay will be for the drug. There is ONE charity that helps people and the drug company will help with the copay but no more than $800.00 per year. If my copay were a thousand dollars that would be used the first month. There is limited resources here and I am eager to know what the copay will be. I do know that I will not wipe us out financially for a drug that might not even work. I am not sleeping well and at times feel overwhelmed. I continue with the cardiac rehab although at times I have to stop or slow down. Rob has been working all the overtime he can get. It gets dark early now and it seems the days are very long. Somedays are not so bad and others are terrible. This goes with this disease. I hope to be better once on the medicine. They tell me it will be easier to move around then. I still have some post surgical pain and the rehab is not helping. Some nights I have to take a pain pill or I won't sleep at all.
My Christmas tree is not up. I keep going back and forth as to whether it is worth the trouble. I do have lit wreaths and garland Rob put up outside and some decorations here and there. I can't find my merry. I hate uncertainty.
I have most of my gifts bought and wrapped and cards were mailed. I'm going through the motions. I went to a support group meeting that was supposed to be a holiday party. I heard the word fatal so many times I felt dizzy. The speaker was a wonderful doctor who knows my doctor and told me I was in good hands. My sister and brother both called to have lengthy conversations and I visited my middle brother Friday with his wife and grown children. It was wonderful. Life goes on no matter what the circumstances are and I keep telling myself that I beat cancer twice, survived two heart surgeries and pneumonias where I was critical. I have to rise to the challenge and get this under control. Hopefully they will keep finding drugs to buy time until they discover the cure.

Friday, December 02, 2011

Back to Philly and Another Doctor

Yesterday I was called back to Philly to see the pulmonary hypertension expert. It was a lengthy visit as I had to do a six minute fast walk to test oxygen level and he reviewed my recent echo and information from my catherization. We already knew I had this condition but he confirmed it. Sadly, this is not "curable" but we can hope to manage it with some meds. Most people don't know what PH is and what causes it. Most people think it's blood pressure related, which it isn't. There are a few different causes of it. Mine is secondary (meaning it was caused by another condition) and was caused by my mitral valve which was recently repaired. The hope was that when the valve was fixed the other condition would significantly improve if not totally be eliminated. Apparently, because the valve was bad for so long it has caused permanent damage. The bad valve was putting so much pressure on the lungs that the arteries in them became smaller. As a result of that, pressure built in my heart to many times what it should have been. Now that the valve has been fixed it's trying to pump properly but the lungs won't allow the blood in and the pressure in the heart remains too high. This causes the right part of my heart to be dysfunctional. The drugs that the doctor uses will open the arteries, dilate them and lower the pressure as well as make me have more energy and feel better. The insurance company has to approve the drugs which are rather expensive. It should take about a week before I know how much the insurance will pay and what my part will be. I have no choice but to use them, my heart cannot withstand the pressure for a long period of time. I am glad there is a treatment but I will feel better when I hear the numbers have gone down. This is a rare condition and I wish I could find a support group in the area but it's not likely.
At least I know now what is wrong, why I have been so ill and perhaps how to fix it. Progress. This means many more trips to Philly but when it's your life on the line, you do what you must.