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.