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.

Rob's scribble and more

Firstly, Rob did did a "scribble project" (he loves to draw) and they posted it on the website along with some personal information about us. Please check it out: Scribble Project. I was very touched by it.

Last Saturday was my niece's wedding and we had so much fun. Of course, I missed dancing (way too painful and too risky if someone bumped into me) so I kind of moved a bit in my chair. It was on the beach and lovely, the temperature and sky were perfect and some seagulls quietly attended. My sister is a very private person and doesn't want anything written or pictures posted about her. I respect that so instead I will post a picture of Rob and I attendees. I had this dress altered and it was still too big. My weight seems to have stabilized now but I am down about 40 pounds from the winter and had lost 30 pounds the previous year. Having to give away most of my clothes. I had saved some clothes from about 20 years ago that were expensive. They now fit me but are so out of style (shoulder pads etc.) that I will end up giving those away too.

I saw my cardiologist in NJ and he said I looked great. I was somewhat disappointed that my heart still has problems and that we won't know until December how much the repair helped and if the main issue is really gone. I go on the 22nd back to Philadelphia to see the surgeon again. On the 28th I have a lot of tests to undergo to determine if I can handle some cardiac rehab. My incision is much less painful than it was but the muscles going across my chest and into my shoulders are still hurting. I am now permitted to drive short distances locally but it is painful and only done if I have no alternative. I am moving about, breathing and functioning better than I was a few weeks ago. They tell me it will be late December before I have recovered. I am so very grateful for the improvements in breathing alone.

Weather has changed. Yesterday started out at 80 and temperatures dropped twenty degrees in a few short hours. It's really cool out today. Duffy with his two coats of fur is in heaven! Nothing makes him happier than a cool breeze blowing throw that luxurious coat.

I'm going to take it easy today as I had company yesterday and had to go for a chest x ray. Been a busy week with lab tests and the paperwork that never ends.

It's a weekend and that means Rob will be home with me for a few days. :) Have a great weekend and just think the new crop of apples will soon be here.

Labor Day Weekend

Labor Day weekend stirs a lot of emotions for me. September third is the day my one grandfather died. (He had been misdiagnosed with pneumonia and when it hadn't cleared up in two weeks they discovered he had stage 4 lung cancer and he was gone a few days later.) It was also the birthday of my first love, my teenage love, whose heart I broke. He died ten years ago but I still remember him and our three years together. He taught me what it was like to feel truly loved. Labor Day weekend many years ago was a day spent waiting for my son to be hospitalized for a bone marrow and on September 4 we learned he had leukemia but it would take several more days to find out what kind. I can still remember the physical feelings I experienced when they said those words and I fell into a chair in utter shock. I am so grateful that he survived it, that we got through the three and a half years of chemo he needed and that over the years he has learned to let a lot of anger go. It's hard to lose your junior year of high school and return your senior year when you feel you no longer fit in. It's hard when the time comes to try to return to what was your normal life before.

Today Rob and I slept in until almost 8 a.m. Normally the dog will not permit this. I took a shower while Rob made his first cup of tea and then I made a list of things that needed to be done. He got dressed and bolted out the door to begin the shopping. He went to Staples and got ink for our printer, went to the supermarket and got several bags of groceries, then on to the Home Depot where he got a new shower nozzle. This one can be hand held and will be a big plus when Duffy needs to be shampooed. Our old one was a water saver that felt like you were being teased as opposed to having a real shower. Hope this is better for that purpose. Rob came home and installed the shower head, dumped and washed the litter box, weeded the flower garden, had lunch and read. Now he is taking a much needed nap. I hope he can find time over the next three days to kick back and relax. Our lives have been so hectic over the past few months........
Yesterday I got a call where I had to regive all my information from my previous jobs. I realized I was about to bounce a check (having finally balanced my checking statement) and called my Mom to run me to the bank for a quick deposit. After doing that I took her out to breakfast and I took her to Costco to get gas (she isn't a member). We went into a candle store for a few minutes so I could pick up a gift I needed and then home again. I can't shut car doors due to the weight so I feel like a child being placed into the car. When we arrived home there had been several messages left from my medical providers. It seems they all knew my health insurance was cancelled as of August 31st. I explained that I had secondary insurance which was now primary. They told me that they were told it was not and I needed to get this straightened out. The company who furnishes my oxygen wanted to be able to verify right away that I would be covered. I was so exhausted and frustrated. Less than six weeks after the surgery I have to go through all this? I had called the insurance company on Monday and explained all this to them and faxed over what they requested that very day. I called them again and "Monique" advised me that I would need to hold while she investigated. I was put on hold and after about half an hour I hung up. NEVER once did she come back on the line. That is considered call abandonment where I have worked and grounds for firing. I called back and got the person I had spoken to before on Monday. She had not received the fax I sent, told me to resend it and she would call to confirm she had it as soon as she got it. An hour went by and I sent it again.....after another hour passed I called again and got Susan. Susan apologized and explained it takes them 48 hours to receive faxes (thanks for all the bs Sadie) and that she would call my old insurance company and have them verify on the phone and she would update the record herself. I was surprised: someone who had intelligence AND initiative unlike the other two reps. I held on about ten minutes and Susan came back on the line telling me she had all the information necessary and would update the system. She then asked if I wanted her to call the providers and verify my coverage to them. Impressive! I told her I would take care of that and thanks her for her help. So about six hours later this was finally resolved.
As soon as my new information was entered a different provider called me to let me know that it was all updated. I'm just thankful that my brain was working well enough to handle all this. It hurts after I hold the phone for too long. Good thing physical therapy is covered....I might need some.
Have a great Labor Day weekend!

Anniversary

Today is our ninth anniversary. I met Rob two and a half years earlier. I had been so unhappy with my former spouse that Rob was actually afraid to propose thinking I might not take another chance. Emotionally I was still healing and it took time to release some of the things that I had to in order to move on. I had envisioned myself being alone for the rest of my life. I would have a dog and lots of family members but I really felt that a husband was not something necessary for my happiness. About that time I met Rob. He was fun and patient and everything that I would have wanted in a man but I was not going to let myself get caught in that again. No way! I told Rob this on our first date and he told me marriage was not something he was interested in so we were both at ease. That's so funny looking back. On our first date it was like we had known each other for years. I was never so comfortable with anyone on a date and he made me laugh. I had forgotten how to laugh. Some two and a half years later we got married in an intimate ceremony of about forty. Our song was "Come Rain or Come Shine". We had both been listening to that song one day and blurted out at the same time "This would make a great wedding song!" Sometimes we actually complete each other's sentences. I swear that he can read my mind at times!

When most people take vows they don't think it through. Sickness? When you're young and invincible who can imagine that? Just two years later Rob went through my first open heart surgery with me. About six months later he went through two surgeries with me for breast cancer. Now, a month ago he went through the second heart surgery. It's a lot. He has never complained one time. I have apologized for having to ask him to get things/do things for me and he tells me that I have no reason to do that. He does everything with devotion and caring.

Sometimes I think that I might have been too afraid to have taken a chance on Rob. I would have missed out on so much. I am so grateful for Rob and his love. I wish everyone would be loved like this because it's what gets you through the really hard times. Thanks to my friend Diana who encouraged me to make my own decision but gently reminded me that love might not come again. Rob (like me) is not perfect but he is perfect for me.

The Weekend

The newscasters really felt Irene was going to do some rather heavy damage here. Thankfully, little was done except for some people losing power (most already have it restored) and some road flooding. I realize that if your road is one that is flooding and cutting you off from getting to the next town, it is anything but a minor nuisance. One neighbor lost a tree but we did okay. The rain and wind was strong Saturday evening and I slept through the night for a change. Normally the sound of rain hitting the windows keeps me awake.
Rob and I had someone come in on Friday and put a pull down door and attic stairs in for us. Since we don't have a basement we rely on our attic to hold holiday decorations and such. The contractor did a marvelous job and the stairs are metal and sturdier than the wood ones. I have not been in my attic since my first heart surgery as I could no longer pull myself into the attic. This will be a great help to Rob and I. The downside was this was in a walk in closet and we had to remove the clothes. I wasn't able to carry more than two hangers at a time so my Mom came and did a lot of moving my clothes. Some of my clothes are twenty years old! I always used to buy quality things and take good care of them so they are still in great shape, although now that I can fit in them again most of them are "out of style". Although I buy more classic than fad clothing, shoulder pads? Oh no, I forgot how badly they looked. I filled three bags for donating. Trust me, there is plenty left! My clothes vary in sizes. I have a wedding September 10th and my dressier dresses are all too big and would need alterations. I am debating between two of them. They are both black but one is an empire style with a hot pink bow/ribbon and the other is piped in a lime green but has a full skirt. While I can get the top altered on the later I cannot get the skirt taken in. I've already had the bodice taken in.
Each day finds me with a little more mobility and a little less pain. The nights can be troublesome as I move in my sleep and that can wake me up. The pain meds or Tylenol have worn off and getting out of bed is tricky to get some more.I can keep them on my nighttable but need more water anyway.
I am doing so well. More later.

Staples out: 31

Yesterday I finally got my 31 staples removed. The top by my neck and the bottom really hurt. Hard to believe they were in there a month! First surgery they only leave them two weeks but a "redo" takes longer to heal. My scar is hot pink and long. YIKES. Good thing I am not vain. I have a wedding in two weeks and there is nothing I can wear that will camoflauge it. I am also worrying about clothes rubbing on it. Still cannot drive for two to four more weeks but I don't think I would have stamina anyway to shop so that's okay.

I posted a comment answering all the comments on the previous post. I love your comments and good wishes. People have offered to send meals and other generous things. I don't have much of an appetite and it hurts to do most things that require use of my arms. I have to be careful now that the staples are out, the incision isn't 100% healed yet. I'm not allowed to cook and I think that is the thing I miss the most. I love to cook and bake. The Fall is coming and there will be lots of time to bake. We just have to get through the hurricane first this weekend.

And the beats go on.............

The past few days have been really tough for me. The more I do, the more pain I experience. I am not really supposed to be doing anything but when I am home alone I make myself toast or tea and even that hurts. Moving hurts.

I have so many things that I simply must take care of. My employer fired me and my health insurance ends August 31. I had to get onto my husband's at that time. That meant checking to see that all my doctors accept his insurance. Good news on that front: two that were out of network on my insurance will be IN network on his. Problem is I had met ALL my deductibles under my insurance and will now have to meet them on his. My income has ended and I am not eligible for unemployment. My short term disability is exhausted. Thankfully, I had inherited a few thousand dollars about a year ago and held onto it and am using that now to subsidize our bills. Thank God I didn't run out and do something extravagant with it.

My days are rather quiet here. I take a few cat naps throughout the day. During the day I try to take Tylenol only then the stronger pain med to sleep. Some nights I cannot get comfortable and just can't sleep. Yesterday I was laying in my recliner when it began to vibrate. My windows shook like a huge wind was coming. The cat stood up on the sofa like what is going on? I then felt the sofa which was also vibrating and I thought perhaps a jet had crashed. Put on the tv and quickly learned it had been an earthquake. Interesting. Things just get stranger and stranger.
I am supposed to get my staples out tomorrow. There are 31 and very irritating and have been in almost a month. I want them out but it will be painful because of the sensitive area they are in. I don't look forward to that part. On Friday a man is coming to put pull down stairs on my attic door. That way Rob can access the attic without all the ordeal of carrying a ladder upstairs etc. which is not safe anyway. This Christmas will be so much easier as we keep our prelit tree and all up there. I sense Fall in the area. It's always been my favorite season. So glad I will be here to enjoy it. The doctor said I am "resilient". Two time cancer survivor, two time open heart surgery survivor with two mechanical heart valves. Yes, I think that is the word for me. It will only get better from here. The future's so bright I gotta wear shades. :) My only goal for the future is to get my health back and I feel it coming.

Finally a posting

Dear Friends,
Thank you for all the emails, cards etc that I received from you all showing your concern. Judith HeartSong made me a card that is a work of art, so lovely. The first few days were going swimmingly (under those circumstances) but then they told me that the surgery had caused me to have "heart block". Never heard of that but I had an auxiliary pacemaker which was doing all the work. The surgery I had can traumatize the heart through the swelling especially and leave you with this condition permanently. They thought I would need a pacemaker before leaving the hospital. The initial surgery was very difficult but the surgeon believes it will be successful. It will take six months to know for certain. After a few more days the heart block seemed to have resolved itself and they were able to turn the pacemaker to back up only with an alarm set. We were all thinking that we had escaped another surgery for me and were thrilled. Over the next few days I developed some slowing down of the heart rhythm and they once again became concerned. Just when they thought I was out of the woods totally I had a "pause" in the heart. My heart stopped beating for over five seconds and I was rushed into ICU to be closely monitored. I was conscious the entire time and it was unpleasant, feeling like I was fighting to remain conscious. Rob was allowed to spend the night in ICU with me and I was so relieved about that. I knew if it happened again I would be shocked and I did not look forward to that. My heart straightened itself out and two days later I was released to the step down unit once more. I am home finally.
I am tired and in pain. Imagine having a sternum that was broken not once but twice, wired together and a swollen heart that was removed from your chest, had a piece sawed out of it, replaced with a mechanical piece. I also received a bypass to replace a radiation damaged piece of my coronary artery.
Does it sound like I am complaining? I'm not. When I realized I had survived the surgery, tears of joy ran down my face. More time with those I love. I know that the next few months ahead will be tough but I am hoping and praying to hear late December that my heart is functioning well. Regardless, this was a surgery I had to have. I was in heart failure and it was the only possible fix.
Will write more soon. Thanks for keeping me in your thoughts and prayers. I was counting on you and you didn't let me down.
:)

nelles update

hi everyone, Rob here. two weeks today still in hospital,

returned to ICU early Saturday morning. complications being addressed, hopefully return to step-down unit sometime today. surgery went well. thank you all for your emails, comments and prayers. ill post more details when i get home.

Random Thoughts

Yesterday was a grueling day. It began with a trip to two banks and a pharmacy. It was 107 outside with poor air quality. My lungs were not happy. I came home and began the arduous task of filing for social security disability. My company's long term disability carrier told me that I had to and if I didn't they would be deducting the amount from what I would get. Apparently, if you are out of work a year you are entitled to this. Besides, there is no guarantee that the surgery will eliminate the other issues, although I am optomistic about it. We shall see. It took me literally hours to find dates of hospitalizations, addresses of doctors and they asked for lists of tests done. Their system didn't allow for over twenty CT scans done in the past two years. I felt they had plenty to work with anyway.

I am on a low sodium diet with strong diuretics to keep the fluid off. This has lead to some real constipation issues. I was in a lot of discomfort last evening.

I am dealing with some friends who have real issues too. They want to lean on me about their issues and it's hard to be sympathetic sometimes. Many people create their own problems and think they are much more difficult than mine. I would love to have them walk a mile in my shoes.

I came across a poem I love. I love ee cummings. I love Rob.

i carry your heart with me(i carry it in my heart) i am never without it(anywhere i go you go my dear;and whatever is done

by only me is your doing,my darling)

i fear

no fate(for you are my fate(for you are my fate,my sweet)i want

no world(for beautiful you are my world,my true)

and it's you who are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud)

and the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Sleepless in Englishtown

Today was really a rough one for me. It started out well with the new mattress and box spring being delivered and the recliner. I was expecting a friend to come for the afternoon. I had just made up the new bed when the phone rang. It was my employer. They made an administrative decision to let me go. Although I felt this was a possibility it was shocking to hear. I actually broke down and cried on the phone. While I can Cobra my health insurance, Rob was on my dental and as of August 1 we won't have dental until we can sign up with his company for the next year. I also loose my life insurance. What I don't understand is why they didn't let me know sooner. This call put me on an emotional roller coaster.

My first feeling was shock and disappointment. In October I would have been there four years. The first two years my attendance was stellar and so was my job performance. In July 2009 the health issues began and I was out on disability several times but always made it back within the short term disability period. This time, I couldn't. Next came a wave of anger at the doctor who had been my cardiologist for about eight years. He failed to find the problem and the fluid back up from the heart was keeping my lungs wet and causing me frequent bouts of pneumonia as well as leg swelling and I was exhausted for much of that time. In hindsight I am amazed I was able to work at all. Most days I came home from work and ate something, then went to bed. I went to the doctor so many times with swollen legs and even when he saw that I was on oxygen all the time and so short of breath he told me it couldn't be the heart. How wrong he was. Now I have lost income for two years, lost health (my lungs will never be the same), and now my job. I can't explain how he laughed when I made inquries about all these issues. My lung doctor repeatedly said she thought it was my heart and he just shrugged off anything she had to say. In the end it was she who was right.
Tomorrow my mother wants to take me and my sister-in-law to Lancaster for the day. A diversion from all that is happening. Not sure I am up to it. I can't even sleep tonight and there is a heatwave here in the NorthEast. Going to be 95 again tomorrow and over 100 Friday.
I am moving forward. Next week will be so difficult for me but I have to keep telling myself that I have to do this. Without the surgery the heart failure will overtake me and my existence will be miserable fighting fluid overload. I want to get through this and move onto a better place, where I am once again living.
This is so hard on those who love me and I hate that they are having to go through this with me. Please keep us in your thoughts and prayers. I won't be online after Monday, July 25 but surgery is 27th.

Retail Therapy

Last week my Mother got a check for life insurance from my father. It was a small policy and she decided to divide it amongst her five children. I thought that was nice but of course, it's difficult to enjoy receiving money under these circumstances. You feel guilty yet grateful.

Rob and I have had many things we have needed for a long time. Our favorite chair (a chair and a half) with the wonderful old world upholstery is worn out. The cushions are crushed and it would be so costly to replace them, it would make no sense to do it. Also, we are in a smaller house now and it's too big for the place we want to put it in. Yesterday we bought a much needed recliner. The cardiologists have wanted me to elevate my feet for years and suggested one. I always hated how large and bulky they were and yesterday I found one that was just normal chair size and would work for us. We bought it. Then we wandered over to the carpets and found a lovely new rug for the room so we ordered it. I love it. We then made our way to the bedding department and treated ourselves to a very good mattress and boxspring. It's very firm which is what both of us need for our back issues. The chair and sleep set will be delivered Tuesday. The rug will be shipped within the next few weeks. We then went to LongHorn for lunch. They have a salad I love there, the Sonoma chicken salad. After savoring our lunch, we went to the mall and I got a screen protector put on my replacement phone. I also got a better case for this one. It felt so good to have money and shop without worrying about bills coming later. I spoiled myself. We came home and had a nice relaxing evening. The surgery date approaches. I have yet to have my claim approved and the company tells me neither my employer nor doctors have submitted paperwork and that is my responsibility. I am not sure if I can get this all taken care of before I am admitted into the hospital July 25th. Trying not to sweat all this stuff. I am in such good physical condition, compared to where I was six months ago. I pray that in a few more months I will be getting stronger and better each day.

Hot....Hot...Hot

It's going to be a sweltering 95 today. I wonder what it will be in Florida since we are in the NORTHeast. On Monday my mother-in-law is taking her other son, and our niece to DisneyWorld. They have never been before and I remember when I went many years ago in July and knew I would never do that again. This is why Fall is my favorite season.

In my last post I mentioned reuniting with a friend and since then I received an email and later a phone call from our third friend. I am so happy. Believe me, I need all the joy I can find right now. My mother is feeling sorry for herself. Understandable because she lost her husband of 60 years just four months ago and doesn't know how to go on without him. My Dad made all the decisions. She has five children who would all advise her differently what to do. Two family members have had some differences and involved others and she gets pulled into it all.

On the bright spot my sister gave a wonderful shower for her oldest daughter on Saturday. It was in a nice restaurant and beautifully done. This niece is my Godchild and I got her the Emeril cookware on her list. Wow! The prices of the gifts are overwhelming compared to my original wedding shower so many years ago. (When I married Rob my matron of honor lived in another state and I didn't have a shower but since I had a house full of stuff, I didn't need one.) My niece got a Dyson vacumn and beautiful comforter sets, everyday dishes at $100 a place setting and china. On the way home my Mom said "to think that I received tea towels mostly as gifts." Different world back then. It was a joy to see her so happy and her sister who will be her maid of honor. I am hoping and praying I will be up to the wedding early September. Even if I am in a wheelchair because I can't walk far or huffing on an oxygen tank, I plan to be there. This is a picture of me with the bride to be. I scrunched over to put my head on her shoulder. I had a great summer dress but it was so cold there I had to have a sweater on the entire time (haven't replaced sweaters and they are all too big.) Have to wash the floor because my mother's pastor wants to come visit me and pray with me today. Yesterday I was short of breath again but I think it's because of the air quality and extreme heat. Stay cool everyone.

A Gratifying Tuesday

Yesterday I did something that was long overdue. I went and made things right with a friend that I love very much. When I was having my last heart surgery this friend was supposed to go out with myself and another friend and at the last minute her then boyfriend called and insisted she see him that night. (She just jumped through hoops for this guy and they are now broken up.) I was so hurt. Later when I came home from the hospital and she called I wouldn't take her calls. That year she sent me flowers on my birthday and I sent her a note thanking her for them but telling her I was so disappointed in her as a friend. Now that I am older and wiser I like to think of a quote I once read "Stroke it don't erase it." A few years ago I began to think of all the times this friend WAS there for me, and there were plenty. We met when our children had leukemia in a support group. I was in her home the last weeks of her daughter's life and there for her afterwards. That's what hurt me so badly. I now realize this: she made a mistake. A friendship shouldn't be lost because of a mistake. So I have thought about her hundreds of times. Yesterday I was out running errands and I got detoured and found myself in front of her development. It was karma and I knew it was the right time. I rang her bell and she opened the door. We both stood there hugging and crying for a long time. Then she invited me in and we sat down at her kitchen table (as we have for twenty years) and had coffee. There is not much as gratifying as a visit with an old friend. No one else understands what I went through with my son. She was part of it. She was always wonderful to him and like me, he loved her daughter. I explained to her that I made a mistake and she said "Don't explain. You're here and back in my life. That's enough." She then called her friend to tell her and she was thrilled also. I am now trying to reunite a third friend of ours. I have mailed her a letter this morning. Let's hope soon the three of us will be together again. One of the best times of my life was when they took me to Atlantic City for my 40th. The following day they had a surprise party for me as well.

Poor Air Quality but Beautiful Out

For two days they have warned of the air quality. It has been beautiful and sunny though. In the evening it's been cool enough to enjoy the patio a bit. For me I love the patio and watching the bird feeder and bird bath. Our next door neighbor has ducks and some of the tiny babies keep wandering into our yard. Rob leads them back (they follow him like he is the Pied Piper) and I even got a few pictures of him holding one. They make so much noise for their tiny bodies. Our pets are intrigued by them. They are contained in our fenced in portion of our yard so no threat to them.

I have had so many phone calls from the Univ. of Penn. Hospital. They pay attention to the smallest details. I should be admitted a few days before the surgery as I will need to go off of the Coumadin but instead be put on Heparin.
For those of you who are latecomers to my blog, I have had this surgery previously, with my aortic valve. It's a big surgery and the normal procedure is for them to cut through the sternum and wire it back together. Some people say it is not very painful and others find it to be very painful. It seems that more people who receive tissues valves (such as bovine or porsine) have an easier time of it. I have a mechanical valve and will be receiving another. I ran into some complications with my last surgery and I ended up in CICU for over a week. (I had been told that I would be in the hospital for a week total.) After I left ICU I spent another ten days in a step down unit. I experienced hallucinations after being given a sleeping pill and ripped out all my ivs. I was confused and when their was a power failure and I was on a ventilator I became so panic stricken. It's not just the physical that you deal with. I do believe I am going to the best place and will be using top notch doctors. The doctor who will be performing my surgery performs heart and lung transplants. He is prepared to deal with problems.

I continue to do very well with breathing. For the first time in months I am able to leave my house without an oxygen tank and it is indescribable the joy I feel when I just walk across a parking lot without gasping for breath. I swear that I will never.....never ever....take breathing for granted again.

Feeling Joyous and Grateful

I am hopeful, oh so hopeful today. My wonderful pulmonologist, Dr. Gilbert, did my pulmonary function tests and they were greatly improved. Numbers such as 43% changed to 80%! I don't know who was happier the doctor or me. She had to fax a note to my employer today. I won't be able to return to work until winter. Once I have the surgery which wouldn't take place before July's end, it will be along recovery, including cardiac rehab. I am so hoping that my company will allow me to be on long term disability until that time. Financially, it won't be much at all but what is my life worth? Certainly worth more than the money I would earn if I worked but watched my health steadily decline. There is a window of time a diseased valve can be replaced but once things happen that would make the surgery unlikely to have a good outcome, that option is gone. I cannot wait. This is a big surgery. I will go into the details at another time but they will be doing two or three things at once. What I have is serious, but there is a "fix" to at least make it much better if not fix it altogether. The people in the doctor's office were surprised when they saw me. In the past month I have lost 24 pounds. Most of that was fluid that had accumulated because of the heart problem. About seven pounds came out in the chest tube and the rest has slowly come off with medication. I had to buy new clothes which has been fun except that my short term disability money has been exhausted. No pay unless I get approved for long term. Even so, that will be a fraction of what I made. Over the past two years we have lost so much income and had so much medical expense. Thankfully, I have had some money put away for medical emergencies such as this. We'll get by and what good is money if you don't have your health anyway?

Even though I am facing another heart surgery (and it's scary) I am so thankful that I live in a place where I have this option. I am so thankful that Dr. Gilbert went the extra mile and brought in cardiologists so we finally learned what the real problem was. The glass isn't half full, today it is brimming with hope. :)

The Waiting Game

I am still waiting on the final word of whether or not the doctors in Philadelphia will proceed with the surgery. My last set of lung functions tests (taken while I had so much fluid in me) were discouraging and they want to see better results. Sometime in the next few weeks I must have those tests redone. I am also getting yet another CT scan with contrast to clarify something else they found. Today I am down about twenty pounds from where I was a month ago. I now weigh about sixty-five pounds less than I did when I had my heart surgery seven years ago. That is without any surgery or diet pills, just lost the weight, particulary over the last twenty months by not eating. Some of it was fluid.

This morning I got up early and went grocery shopping. I am trying to eat a diet of mainly vegetables and proteins with some dairy. Eating little bread, low carbs and low sodium. I just bought an ice cone machine so I can make them and have them with sugar free blue raspberry flavored "syrup". It seems that syrup should be thick and instead it has the consistency of water but is flavorful. I also went to a local farm and bought three hanging baskets. My yard seemed naked. I won't be doing a lot of planting I have in the past. While I am breathing much better, bending over is a bad position for my lungs.

Yesterday was my first Father's Day without my Dad and I dreaded it. We bought a nice wreath for his grave that had a ribbon that said "Dad".
Tomorrow I go to the cardiologist here. I now have duplicated doctors in Penn. Sometimes I have to put myself on autopilot to do what I must. If I begin thinking of all that could happen it's overwhelming. One day at a time.

Home Again (Finally)

I was admitted to Univ of Penn Hospital on June 8th and was discharged last night about 5:30 p.m. I wanted to sprint my way out the door but Rob insisted I leave in a wheelchair as it was a hike to the parking garage. He was so right!

I had the cardiac catherization on both sides and another procedure done which I won't go into. I was awake for the entire nearly two hour ordeal, but the staff was wonderful and comforting throughout. I was given lidocaine at the sites where the incisions were made and a mild drug to relax me. The doctor spoke with me immediately, confirming what we thought to be so. My mitral valve was damaged with the infection in 2009 and now meets criteria to replace it. It is causing the pulmonary artery to have high pressure and my body is making a lot of fluid to compensate. Most of the fluid removed was already being replaced. They gave me some great drugs to get about ten pounds of fluid or more off of me. I feel wonderful again (except for soreness and fatigue.) Now a team at that hospital has to examine my hospital records to see how to proceed. My lungs must be determined to be able to stand a surgery if necessary. There is no point in trying to make one thing better if in turn another organ will be injured. Whatever they advise me to do, I will do.
One very disconcerting thing that happened was on Sunday morning. My roommate (whose lung was filled with fluid) passed away. I was talking to her a few minutes earlier. They rushed me out of the room into a private room. I think I went into shock and the rest of the day I was just barely functioning. I was so happy to come home. I keep thinking of that dear woman though and feeling that perhaps I should have done something more to help her. I kept reassuring her that when I was full of fluid I was in the same distress. They tell me she might have had something more wrong with her.
Well, I am beat. I went to the local hospital for a blood test, made phone calls all day and made a run to Target after getting my oxygen delivery.
Time to relax now. All in all it was a great day to be alive today. Thank you God.

Update from Rob

As you may know Nelle has been struggling with some health issues. On Tuesday she was admitted to the Hospital at the University of Pennsylvania.
She has asked me to let you all know that the procedure went well and she expects to be home. Sunday.
Thanks for all your good thoughts and prayers, they are much appreciated.

Rob

Lend a Helping Hand (if you can)

There is a cancer blog that I found via way of Susan's blog. She had a link to help you this woman who needs to raise funds to go for cancer treatment. If you can help her that would be great! Jeanne can really use a donation to help her get the treatment she needs. Please check her blog out and think about whether or not you might be able to help.

Waiting for my call from Univ of Penn Hospital telling me to come. I am going to be admitted today with the procedure tomorrow, Thursday. Nervous but eager to have it done with and know exactly where I stand as far as repairs or future surgery. Please keep me in your good thoughts and prayers and I will post when I can, most likely not before Saturday. Stay cool in this heat wave!

Now For Something Completely Different

It's been awhile since I made a blogging post that wasn't about my current health issues. I just read my friend Cynthia's entry and it got me thinking about forgiveness. When I was younger it angered me when people told me I needed to forgive others. Being raised with Christian values, this was a great source of conflict. I always felt this righteous indignation and for some reason that seemed to give me strength. Then I clung to the belief that forgiveness would only be granted if I received a request for it (even then I had difficulty granting it.) I began reading books and watching therapists on television who spoke about forgiveness. I began to realize that there were times I needed to ask forgiveness and never had. Oprah talked about how forgiveness was actually good for yourself. I began to see the other side of the coin. I began to think of things that had been done to me. One of the best examples was a childhood friend I used to have. I called her when I had cancer. She had a baby girl about a year younger than my son and I asked if she could watch my son some of the times I went for radiation treatment, maybe once a week. When I began to explain to her about the cancer she cut me off and abruptly said "I have to go. This is too depressing and I can't be your friend or help you." I heard her hang up. I sat there in shock and disbelief. I had known her at time for about twelve years. I carried this hurt for the next twenty something years. I was actually afraid to ask other friends for help for fear I would lose their friendship too. About twenty years later she called out of the blue acting like this had never happened. Over time, although it was never asked for, I forgave her. About five years after that she stopped speaking to me again one day, no explanation was ever given but I heard that she was upset with me because of a comment I made regarding her daughter's wedding we had attended. It was a buffet and our table was never called. Other tables were going up for seconds and I went over to the table and told them our table had been skipped. By that time there was nothing left but salad. It was very disappointing. Looking back, I have to laugh at this. I realize now that she has major problems that have nothing to do with me. I forgive her again, not for her (because she doesn't care) but for myself. We are all flawed individuals. Myself included. In life, it's just so ridiculous for someone to end a friendship over such petty things. REAL friendships endure those things. I think more than anything, I have realized that we use the word "friend" too often to describe an acquaintance. If someone hasn't been in your home in years (when they have been everywhere else they have wanted to be), is never avaialable when you need them, or never makes time to stay in touch they're just not really a good friend. In life we have so few really good friends. Ironically, so often the friends who are never there are the very ones who tell you over and over that they will be. I have learned not to count on people. In the end, I count on myself and if anyone else is there for me it's a bonus.

What we have here is a failure to communicate....

Good night! I have waited home for three days to get everything squared away with Univ. of Penn. The doctor's secretary has been trying to set it up but she had no medical knowledge and was not able to answer ANY questions (although she was a lovely person.) My doctor didn't give the doctor ALL the information from the report and there is something that I think might deter him from proceeding. Yesterday I spoke with his nurse who assured me she would get the answers for me. Still waiting. I did take my cell phone and go out and have a pedicure and lunch (salad with avocado and a freshly made balsamic vinegar dressing that was yummy.) I felt pampered. It was a good day. So I still wait for the answers to a few questions but for right now it looks as though I will be admitted June 8th with the procedure on June 9th. The mere thought of this makes me feel faint. A girl's gotta do what she has to do and I have to do this. My back is so achey where the chest tube was. It's badly bruised. Give me a minute to get a little cheese for that whine. Baby Bel. :)

It was GORGEOUS today. Sunny with a breeze and high was just under 80. WE might have dinner on the patio. It needs a little cleaning first. I have to have meals on the patio in this weather, especially anything on the grill. The other night Rob made the most delicious peppers on the grill. Cutting carbs from my diet was not nearly as difficult as following a low sodium diet. It's in everything. The only way to avoid it is to make everything fresh or frozen vegetables. I love tomato sauce and that is loaded. Trying to find some with low sodium but so far no luck. There has to be a market for this. I love Hebrew National 99% fat free franks but they are way over the top. I don't know if I will ever enjoy a grilled dog again. Maybe an occassional bite. Eating out is even more problematic since they don't give sodium information on menus. When watching the cooking shows they are so liberal with the salt. I do use sea salt but still I am so restricted.

Have I mentioned lately what a wonderful spouse Rob is? Yes, like me, he is not perfect but he tries. He has been giving me my evening belly shots. They hurt and I hate them. It's easier for someone else to do it. Rob gets along great with my son. He doesn't try to parent him but gently explains at times why I do things. My son worries about me like a mother hen. He wants me to follow his rigid vegan diet (which doesn't include fish, eggs or dairy.) I try to explain we all have to do what is right for us and respect the choices others make for themselves. He wants me to drink coconut milk. If I'm having coconut milk I want a pina colada not cereal!

I'm here and I'm doing okay. This will pass and I will get through it. After all, I am bionic.

Home Again

I am home once again. On Tuesday I must call the heart doctor at Univ. of Penn. to get a quick appointment. Then I must go there with my records (including DVDS showing the procedures I had done) and he will render his opinion. This is doctor is an expert in this field. I have a valve that was infected in the Fall of 2009 and it's damaged and now the pressure in it is high. The fluid was a result of that and the fluid pushed that up higher and higher until the three litres in total were removed. Now the pressure is lower but the problem must be fixed so that I don't end up in the same predicament again. I won't go into all the details here, there are other things as well to deal with.

They believe if they can find and treat the reason for the pulmonary hypertension it will stop. If not, I will have to deal with the same issues over and over again and I will never be free from oxygen.

I am currently breathing much better....I only need oxygen when I am excerting myself. Today I have been able to do some light cleaning, even bending over and been alright. To go to a neighbor's I did need the portable unit but was able to breathe well with it, unlike before where even with the oxygen I had real problems. I am in a much better place right now than I have been. All my hope is that the doctor I meet there will know what the best course is for this. I might need a cardiac catherization to determine whether or not a surgery is needed. He may decide not to do that since my mechanical valve but pose a problem in doing that. I will keep you posted. I have been here before, faced with what might be a large surgery that I really didn't want but knew I had to have. I got through it once and if necessary, I plan to get through it again. I'm a tough old broad. lol