Bueller....Bueller

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.

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.

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 digress.......in 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.

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.

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.

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:
http://underphpressure.blogspot.com
I will be posting here as well but not going into the details that I will there.
Peace.

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.

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.

Thanksgiving Eve

Thanksgiving causes me to reflect on just how much I have be be grateful for. When I was a teen I despised my parents much of the time. They were so strict and I felt that I was a wild bird who wanted to fly but all they could do was clip my wings. They were hard on me. When I screwed up I didn't get a sympathetic lecture on how everyone screws up. I got punished. I couldn't wait to get out of their house which is how I ended up marrying someone when I was just 17. The man was a college graduate who owned his own business and was highly intelligent. My father was relieved that I would have security. It blinded him to the fact that I was not mature enough to make a decision like that. It blinded him to the parts of the man's past that he lied about (which included his age.) Shortly after the marriage I called my Dad and asked him if I could move back home. He said no, that I would adjust. I did a lot of crazy things that year trying to cope with my feelings. It has only been in recent years that I realize my Dad couldn't understand how I felt. He once told me that love was a feeling but at a point it became a decision. Many years later you wouldn't have those feelings and you would have to honor your decision. He was really upset when I got divorced and he refused to help me in any way. He said some hurtful things at times and I just left telling him that I didn't want to hear it. I understand now that he was very worried about my health issues and financial future. He wanted me to be able to get anything I needed (not wanted but needed.) After he met and came to know Rob he learned to love him and sometimes he would just do very nice things for me. He finally got it. I am so grateful for the time that Dad and I finally understood each other. I forgive him for the times he failed me, as he forgave me for the same. This will be our first Thanksgiving without him and it's hard.

I am so grateful for my son. He battled leukemia at 16 for three and a half years. He is okay now. He is a mother hen calling me once or twice daily to check in on me. At times it gets on my nerves but there is nothing like having a child show they love you. He is also very verbal about that. He is a kind, caring and generous person.

I am most grateful for Rob. He uses every day he gets off work getting me to doctor's appointments or hospital admissions. He's the one who sees me when I fall apart and gently picks up the pieces. He is always empathetic and helps me in whatever ways he can. That to me is love. Always putting the needs of another over your own. I feel badly at times so whenever I can I try to spoil him a little. There is nothing I could ever do to repay Rob for all he has done for me. When you become ill you lose most of your friends. They just call less and less and back away. I few a few people who have hung in there with me but it's Rob who I truly count on. When I was younger I thought that my friends were more important than family. My view on that has changed a bit. They share the loss of a parent with you and your history. My siblings matter much more to me now than they used to, especially my sister. She will be here tomorrow with my mother, son, husband and I. Dad's presence will be missed but he is at peace. That's another thing I am grateful for. His death softened my mother and we are in a much better place than we have been in before.

I am also so grateful for the wonderful doctors who have gone the extra mile for me this year: Dr. Gilbert, Dr. Hirshfeld and Dr. Gopal and even a few others. Without the intervention of Dr. Gilbert who met me when I was in critical condition, I wouldn't still be here. I battle on for more Thanksgivings, more Christmases and more times just to feel loved. Life is so wonderful. Each day is a new adventure, a chance to meet a new friend and to remember those from the past. I wish I could give everyone I know a cup of gratitude. Happy Thanksgiving from our home to yours.

Rob, myself and Tom at a wedding Sept. 2011

These are the people that keep me keeping on

The Saga Continues

On Monday I went back to Philly to see the cardiologist there. I also had an echo done. Without going into a lot of details the bottom line is that I still have pulmonary hypertension. It's hardly improved as a result of the surgery (although thankfully the valves are working perfectly.) The doctors and I had hoped that was the cause. Sadly, it wasn't and the problem persists. My heart will not be able to sustain the pressure without something happening ( I could not bring myself to ask just what might happen. That is so unlike me but I could tell by the doctor's demeanor that this was very serious.) As a result of the echo results, I need another heart catherization. I need a cardiologist brought on board (number 3) who knows all about the drugs used to get the pressure down and hopefully manage the problem. To say I'm depressed is an understatement. It's all I can do to drag myself out of bed and to cardiac rehab. I also have a small amount of fluid IN my right lung. Usually it is outside of the lung. This means if I come in contact with bacteria of certain types it might become pneumonia. I am trying to veg out and not let this overtake my thoughts.

I am having my mother, sister and son here with us for Thanksgiving. I am insisting that I do this because I welcome the distraction. The doctors office just called and wanted to schedule the procedure but I told them that the doctor first had to decide if he wanted me in the hospital when the new drugs are administered or it would be a one day procedure. In any event, the artery is cut and you have to be really low key for weeks. Not sure if I will be able to continue with cardiac rehab then.

That's just the news. It's rainy and dismal here today as it was yesterday. Just what I needed. I just need a few days to process all of this and get myself back to the place where I normally am knowing that I have overcome many obstacles in the past. I'm tough but that doesn't mean I don't have fears and feelings. I will get through this.

Too Much Going On

I don't know where to begin. The past two weeks have been filled with going to cardiac rehab when I am able to, doctor visits, lab visits and a three night home sleep test. The stomach/intestinal issues that started two weeks ago are still with me unfortunately. I have not had a meal or anything other than bland food since then. The stomach medicine works well in controlling the acid that was out of control prior to me taking it. Much better than previcid. If I feel nausea I have the Zofran which I have to take. My lung doctor had told me I would be hearing from a company which would be sending me a three night sleep study. This is a result of the surgery and weight loss possibly eliminating or lessening my sleep apnea. I sleep with a machine every night for it. Oxygen is bled into the machine and I get quality sleep. Losing over thirty pounds and/or heart surgery can change the severity of the apnea so a new test was necessary to determine what setting the machine should be on. Normally one goes to a sleep center (which I did last Fall.) Mine was like a nice hotel room and other than them constantly waking me to have me try different masks, it wasn't a bad experience. The home test takes three nights and if you have to go to the bathroom you have to release yourself from the machine. You are sleeping with something under your nose yet partially covering your mouth, a tube around your center and a finger oxygen monitor. You are closely tethered to the electrical unit and if you move the wrong way it talks to you which wakes you up. Not an ideal way to sleep. I was so ill Saturday night that I had to give up but then I managed to do it Sunday night. They need you to sleep at least four hours per night for the test. Today UPS is slated to come pick the box up and return it to the company. I have accumulated so many pieces of medical equipment the past two years. A huge liquid oxygen unit sits in my living room.

Last week I learned that an acquaintance from many years ago (a former pastor) had a valve replacement surgery. He was doing well and left the hospital and passed away last week. Rob lost an elderly aunt and my neighbor's mother (who lives with her) lost her partner of twenty-five years. My grandmother always said you lose people in threes.

There is much going on with trying to figure out our finances here. Rob is working a lot of overtime these days. Losing an income is hard. Had I been fired I would have been able to get unemployment for up to two years but because I am unable to work physically, I'm not eligible. I am trying to straighten up today. Trying to think of something for Rob for dinner. Something I have here. Time to search the freezer I guess.
Have a good week.

Tummy Troubles

This past week has been dealing with stomach/intestinal issues. On Monday I went to rehab but came home not feeling well. I had Chinese food for dinner and by eleven p.m. thought I had a stomach virus. I spent hours that night in the bathroom with the food fleeing in all directions.
On Tuesday I woke up feeling queasy still and had a light meal of toast and tea. For dinner I had jello and I was okay that night. Wednesday I woke up again feeling queasy and in fact had to cancel rehab. They ask you not to come if you are sick as you shouldn't be pushing yourself and for the safety of their other clients (patients.) Another day of light fare and by eleven p.m. I was once again on the bathroom floor becoming violently ill. I rested Thursday but had to be home for an oxygen delivery so couldn't go to the doctor that day. On Friday I finally made it there where they prescribed zofran. I didn't know it came in pills. They put me on it for 48 hours to see if it's just the residual stomach virus and now gastroenteritis due to the irritation. I hope that's all it is. The zofran makes you (or at least me) lightheaded if I move around and sleepy.
I was okay Friday and Saturday nights with the med. With any luck, it's now over but I have never been so violently ill before. If I get sick again they will have to run tests to make sure it's not something serious. I have a kidney doctor who is managing my fluid and meds and found that I have a kidney with many large cysts in it. I am so hoping this has nothing to do with that.
Other than that.....things have been good. We went out to dinner with my family on Thursday night. (I managed to pick and eat a spoon of this and bite of pasta.) The stone is in and just lovely. We had the dog groomed and he looks so handsome. He actually enjoys it! He has seen the same groomer for years who has always realized he is a shy animal and she is so gentle. They pulled out the remains of his winter coat, the under coat. Being in air conditioning all summer he didn't lose most of it and we had to keep brushing him.
Rob is doing some jobs around the house today. Small things but things that just had to be done. We got a surprise of several inches of snow yesterday! It's starting to melt now. Snow before Halloween sure feels strange. I am expecting about 100 or more treaters and I have the goods ready for them. I love Halloween but since my decorations have been up three weeks I will be glad to pack them away on Tuesday. I still need to switch out my summer/winter clothes. Maybe I'll start that today. Oh poor Rob.

Updates

Yesterday I saw my lung doctor. I took her a beautiful flower arrangement that the florist let me pick the flowers for. Flowers always cheer me and she loved them. It just happened to be her anniversary too. She said my lungs sounded clear yesterday and was happy with my chest x ray. Baby steps. I have to have a new mask for the Cpap as the weight loss has effected everything. I will also have another sleep apnea test to see if that was altered as well.

Today was my third day at rehab. I am so tired when I come home but they work me. I didn't check the treadmill and it was on a 6 incline and I did my five minutes on it. At some point they told me to slow it down as I was working too hard. Since I was only going 1.4 miles an hour this was puzzling until the nurse figured out the incline thing.

The weather has been bad with all the rain. Wednesday there were high winds and after coming home from rehab I sat down to rest. I heard a loud noise and went to see what had happened. The umbrella was out of the patio table and the glass from the table top was shattered and everywhere. I had to wait for Rob to get home to clean it up (of course he worked overtime that evening.) The next day my mother came with a shop vac and we vacumned up the little pieces you just couldn't get with the broom.

My Dad's stone is in but at the place. The cemetery hasn't poured the foundation yet. Thursday will be his birthday and we are having a family gathering and going out to dinner. I think my mother is doing a little better. Today she went to lunch with one friend and then later went to someone else's house to see her dining room and take home the pumpkin bread Helen made her. We all need friends. Speaking of which, some of my friends (and former coworkers) want to come and see me. I have really missed a few of them. Something to look forward to.

Cardiac Rehab

I had my first cardiac rehab session yesterday. It left me exhausted. While it may sound easy to those in shape, trust me, I am anything but. For over two years I was so filled with fluid and breathless I couldn't even go shopping. My muscles went on vacation. Yesterday they had me on a treadmill (flat and slow) for five minutes and I was starting to breathe heavily when it was time to stop. I then went on another machine called a Nustep for five minutes then a hand bicycle type of thing for five minutes. I also did warm up and cool down excercises. They had a cardiologist come check me out although I was monitored constantly by a portable monitor and a nurse was with me. The doctor said that I had to take it really slow as my surgery was only two months ago and it was a huge surgery. My heart is beating fast and they aren't sure if that's because it is so deconditioned. If so, this will help that. If not, I will probably need a medication. I came home absolutely exhausted and I am going to be doing this three times a week for several months. Hope I can make it.
They warned me to expect fatigue for 4 to 6 weeks. Glad that should be ending before Thanksgiving. Then hopefully, I will begin to feel stronger.

I have read several blogs today but was not able to comment. (Terre and Missie) When I signed in with my google account, it refused to recognize it saying I was not authorized to access the page. Then I tried my other google account just to be sure and it did the same thing, same message. Not sure why.

At last....Autumn :)

Oh how I love the fall and always have. I am in my element and the peak of my being in the fall. I anticipate the cool mornings when one needs a sweater and the crispness of the new crop of apples which have been locally grown. I become giddy selecting the Halloween candy that I know will delight all the neighborhood goblins (I usually have over a hundred) and I never give the cheap stuff noone wants. I remember the joys of growing up in a subdivision where we had hundreds of houses to trick or treat at. What fun. I miss being able to take my child out or to get a costume. Most of his costumes were made by a previous neighbor for her children and they were wonderful. They got passed on to my niece, Julie. I get so excited as the night approaches although I do get worn out keeping a barking dog under control while dispensing treats. The dog has a little cape he wears that says "King of the HoundDogs" and is bejeweled. He doesn't mind.

When Halloween is over and the decorations are put away I bring out the Thanksgiving decorations. This includes the salt and pepper turkey shakers that were my grandmothers but she gave to me about forty years ago. There are also some turkey candle holders and carved wooden pumpkins. I cook most Thanksgivings. I love Thanksgiving. It's a day to reflect on so many things and I do. We use the good china and silver and glassware that day. The pies will all be homemade and sometime in the afternoon we will all take a nap. The last few years my sister and I prepared dinner at my mother's because Dad couldn't be moved. This year they can come here again. Dad's birthday is Oct. 27th and he has a beautiful fall wreath on his grave that has a ribbon that says "Dad". We expect his stone to be delivered in the next ten days. Dad will be missed but I am grateful that his suffering is over.

The day after Thanksgiving people begin shopping for Christmas. I shop all year but the day after Thanksgiving is when my Christmas cards get addressed and mailed. They are already purchased. I love Christmas. It's not the gifts (although I do love a good surprise now and again.) It's that people are all in good cheer and showing and giving love. I love the spirit of giving. This year funds will be low and gifts will be more modest (except for my Mom who needs extra TLC right now) but the smallest gifts can be giving with great love. I guess Christmas is winter but fall is the season where we are preparing for it. I love the hustle and bustle of the season. It's also the time I bake lots of cookies. I often have Christmas dinner here too. It's the only time I wish I had a bigger house. When we downsized we have an eat in kitchen but no dining room. The rest of the year we have plenty of room though.

As you drive along and see the leaves think of this as the season of gratitude.

Today, October 14th, marks two years that my grandmother left us. Of all the many wonderful people in my life, my grandmother is at the top of the list. I strive to be like her (although I often fall short.) She lived in a very modest home but anyone who came to her door would receive a wonderful meal which she threw together in minutes. She was a marvelous cook and baker. She could soothe any problem you had by listening intently and trying to find something positive in it. Everyone in her life felt they had a special relationship with her. They did. She gave each person what they needed. When she learned she had breast cancer she didn't tell her family. She refused treatment because of her age and the doctor told her it was not going to advance quickly. The doctor was wrong and by the time she realized how bad it was, there was nothing that could be done to stop it. That was so typical of her not telling us so we wouldn't worry and she was living alone at that time and going through this by herself until she had to tell us. She was SELFLESS.

There was nothing bad that could have been said about her. That's what impressed me so. At her funeral there were only words of how much she had done, helped and loved others. How wonderful was that?

Clara Virginia Wolfe Cosgrave I am so very grateful to have had the priviledge of being your grandchild and your memory will love on in my heart until the day I leave this world and hope to meet you again in another.

I thank God for you.

Getting Set for Rehab

I got my reports from the stress test and echo. To be honest, somethings were great to hear and one was not but I'm not prepared to think about it let alone talk about it now. I have four more months for my heart to heal and I am going to stay positive in my expectations. The tests showed I am strong enough to start cardiac rehab. I had to go one week for the interview (which I did on Monday) and next Monday I have some orientation scheduled where they will have me putting on my electrical wires and actually doing a few minutes of exercise. They watch the monitors the entire time you are exerting yourself to make sure it's not too much. Needless to say, I will be one of the youngest people there. The sessions will be 18 to 36 depending on what the doctor feels is necessary. I wasn't feeling well the day of the interview and came home worrying about it. The nurse who listened to my heart told me she heard a wheeze in my left lung (I had heard it the night before) and I nearly cried. The pneumonias have always started this way. When I got home I was dizzy and just sat when I noticed I was developing a sore throat and suddenly needed to use the bathroom. It must have been a bug. I moved my flu shot which had been scheduled for Tuesday to Friday afternoon instead. My pain situation is better. During the day if I do nothing I am fine. Of course, I need to be moving and doing small things but the pain is tolerable. At night the pain is a bigger problem. Sleeping on my stomach hurts and sleeping on my side hurts. I have no pain if I lay flat on my back but unfortunately it is nearly impossible for me to sleep in this position. My CPAP mask needs replacing but I see the lung doctor in ten days and want to wait for her to see if she can find me a better fitting mask. It now seems too big.

I am starting to look through bins in my garage to see what things I had picked up over the year for Christmas. Each year I pick up things I know someone will like when I find them instead of waiting for the last hectic minute and buying things that they really don't want. My one brother and his wife are not exchanging this year so that's two less gifts to buy. I feel awkward about it but money is tight for me. I have bought some clothing items for my husband and son but need some things that will make their eyes light up.

Each morning I wake up and tear up with gratitude that I am still here. It's been really rough at times but Rob is always here cheering me on. One of my friends I hadn't seen in a long time calls nearly everyday now to check on me or offer to help in anyway she can. I rarely take her up on it but the thoughtfulness of her gesture means so very much. My family has been much more supportive with this surgery too. I have so much to be grateful for. What are you grateful for?

Busy Week

On Wednesday I went for my stress test. In more years than I can count, I was not able to walk on the treadmill and had to have an injection instead. This year they put me on the treadmill itself. I was nervous since I am still recovering from the surgery but they assured me it was safe. They set my target heart rate at 138 and told me I would walk for a minute and they would speed it up and then start an incline and things would get more intense after three minutes. After just two minutes I had hit my target rate. While that may sound good, my heart beats very fast right now. With that my blood pressure rises. They stopped the test and told me that was a baseline to see whether I should go to cardiac rehab. If so, I will have to take it slow to start out with and be closely monitored. Right after that I had an echo done. I am still waiting to hear from the cardiologist about these tests and hope it's sometime soon. He has called me late in the evening, and on weekends. He's a busy man. Yesterday I went to see my kidney specialist who was very pleased. I am down another three pounds and there seems to be no fluid that I am retaining right now. I confessed that I have been eating some salt now because my morning weights show that I am no longer retaining fluid. I am still on the medication to prevent that and I may be on it forever. That's okay as long as I am able to breathe. She thought I looked wonderful and much better than most people who are just 8 weeks post surgery. Everyone says that but my face is so thin now and my neck is a mess. I am thinking I may start wearing scarves with everything! I have some dark scars on my neck from where my swan was sewn in. My chest scar is not straight and still quite dark and much longer than the old one. I refuse to dwell on those things because I can breathe once again. After struggling for breath for the last year this thrills me. I have to remind myself to take slow that my recovery will be four months longer. In the meantime I am reading and keeping busy. I just read The Help. It was a good read. Have a great weekend.

A Surprise Email

Last week we tried to fix my mother's old desk top. Impossible. I spent two shopping trips with her to find a laptop and printer and today she got one. When I moved her AOL email over to Google she found many old emails she hadn 't opened when she was still caring for my Dad. In one was this picture my sister's friend had taken of them the Christmas of 2009. I had forgotten he looked so alert then. This past Christmas he was disconnected from most of Christmas and us with a faraway look. It's been six months since he left us and I still miss him. I still cry when I see pictures and remember how difficult the last two years of his life were. Noone could have convinced him that he would have ended up so helpless. Now he is gone and my mother struggles and living to regret that she didn't want to be bothered with information that we know struggle to find. Their stone has been ordered and should be there for his birthday, Oct. 27th. We are hoping to have a family unveling of the stone followed be a gathering. I can hear my father laughing at that saying "Wow they throw this shindig for you when you can't attend. Is that fair?" My father's death has taught our entire family something: you truly don't know how much you love someone until they are gone. No matter how much you think you know what it will be like, you can't imagine. Time goes on and the freshness of the pain lessens but the void remains. Life goes on and you must too. It's what he would have wanted.

Saturday and Serenity

Today is now Serenity Saturday. We have done all our chores for today (which include a few more hours trying to get a printer to work with my mother's computer), getting photos printed from a flash drive, getting take out lunch and we are home and hoping to relax. Since my visit with the heart surgeon, I feel more relaxed. I am so relieved to know there is no fluid currently in or around my lungs. First time in about two years. My breathing is easier.

I really love having Rob home on weekends. We have known each other twelve years and I still enjoy the ease I feel with him and the way we can finish each other's sentences (which began happening after a few weeks together.) My life has never been easy and I know what it's like to only be able to rely on myself. If I have to do that I can but it's just so much easier with someone who shares it all with me.

Great Report from Surgeon

Yesterday Rob took off work and drove me to Philly so see my heart surgeon. What a wonderful man who took so long to view and point out things on my xray and answer every question we had. Surgeons like this are rare. He told me that I looked great and my heart sounded strong. The xray showed no fluid in my lungs or pleura at this time and I was so happy. (It is too early to be certain that this problem will not reoccur and it will take several months to know.) My sternum is healing enough for me to drive and lift light things. I have some pain still and it's worse in two areas. One was the top of the sternum under the neck. He told me he had cut it all the way up (this wasn't done the first time.) The other pain appears to be a rib injury. He told me he had to open me up much more than the previous surgeon had. He showed me where he had to go to get the mitral valve in. Not only was it in an awkward place but the valve itself was much larger than the first. He also replaced my right coronary artery with a vein from my leg (leaving me a small scar of about two inches.) He did an excellent job. There are still problems and next week I will be undergoing a stress test and another echo. If they are good, I will then be starting a cardiac rehab program to build up my strength.

My mother wants to have a family dinner on my father's birthday. She is really struggling now. This is the problem when a spouse is so dependent on the other. My father did everything: made every decision, paid the bills etc. She has no confidence about doing these things and asks her five kids who all give her different answers, leaving her even more confused. Case in point: her computer. It isn't working properly and she can no longer read her email. We went there yesterday and tried for hours to fix it and her printer. No go. I had her all set to get a laptop which would be so much easier for her since her old pc is upstairs and she spends most of her time downstairs. She began calling my brothers and one told her it was a mistake. Now she doesn't want to do anything feeling she will be making a mistake. It's frustrating to deal with.

It's raining here and rain is forecast for the next few days. Blah. My spirits are good and overall, the pain has lessened from the surgery. I am oh so hopeful that things will continue to improve.