ONE never knows what will happen tomorrow! Today at 1:02 CDT an earthquake 4.4 in scale shook this area of Oz! Amazing! It lasted 5 to 10 seconds, but was impressing as the entire house was shaking! Center was 43 miles southwest of Wichita.
I tend to be very sensitive to motion, and flicked on the Weather Channel to see what they were reporting. Their first airing of the news was 20 minutes after the event!
We were just discussing last night that with October the odds of a tornado occurring had decreased!
October 1, 2014 - Signs of Strength and Life - Two Months Af
Journal posted on October 1, 2014
Two weeks ago, before my Grand Autumn's first birthday, I called my cardiologist's office to see if I could get my weight limit raised from 10 pounds to 20 pounds. When the nurse asked me if there was a particular reason, I explained that I estimated that was approximately what my granddaughter weighed. The message that was phoned back was, "Of Course!" I loved it!
This week for the first time since before my valve surgery, I sent Jeremiah and Elizabeth a particular sort of text message. With several days left in the week, it asked if they were planning a "Date Night" this weekend. Date Night is one of my favorite times because I go over and get to see Elizabeth and Jeremiah, then Autumn and I have some special time to ourselves. When she lets me know she needs sleep, I ready her for bed with whatever is the current routine and put her down in her crib for the night. Without question, it is one of my favorite things to do.
If the "Kids", who realistically are fine young adults, stay out late, I may just sleep over. (I text Elizabeth once the occasion has been confirmed, often suggesting that she and Jeremiah might want to head out early -- and sometimes I ask if this is a sleep over occasion.) For all of us, it is, as my sister Beth would say, A Win-Win. We all are going to have a delightful evening! They know that family is my first commitment, and I have on a few occasions dashed over on short notice when the plans for Autumn's care during the day have somehow required a change.
Jeremiah is pulling a double shift at the Fire Station this weekend, working both Friday and Saturday nights. Elizabeth asked (another text!) if I might be available Sunday evening. Of Course!!! What could I possibly be doing that I would not move to another time so I could see all of them and stay with Autumn?!?
I am thrilled that I am well enough (and they are confident that I am well enough) to enjoy the first Date Night of Autumn's second year of life! My spirit is lifted with the mere anticipation of such a time!
One evening last year, Elizabeth let me know when I arrived that Autumn was having a pretty bad day. I reminded her that I had spent time with cranky and/or uncomfortable (like teething) babies before, and never had one pinned me to the mat! Elizabeth knows that one of those babies was her, and she gives a sweet smile and a nod. I knew that although this was the first time Elizabeth let me know Autumn had a rough day, it would not be the last. And I am still as enthused to spend the evening as if she were her usual happy, chirpy, little spitfire self!
Yes, family in action! Another very longed for sign of improving health has come!
My best to each of you. Please be kind to yourselves. Give yourselves a break. Rest when your body is telling you to, and may your sleep be comfortable and undisturbed. Thinking of you all and praying that tomorrow each of you will be further along the road to the good health you desire.
Once again I count my blessings, and they lead me first and foremost to my family - the family I grew up with, the family Jim and I have been blessed with, and last but not least, my Heart Family.
Two of my sisters, Patty and Beth, came from Omaha and Phoenix, respectively, this past week and left just this morning. Their love and the sacrificial giving of their time and talents speak so powerfully of the compassion and caring they have as they worked past the point of tired to give me so much more help than I could ever have expected or asked for.
We celebrated and toasted to the family we grew up with on what would have been Mom's 90th birthday, sharing memories of her and our Dad and sister Sue, all of whom now live on in Heaven. And we gratefully thanked God for the love and memories we share, as well as those we are now making.
Both of them spoke of the gift of my successful surgery and recovery thus far, seeing the changes in more ways than I had realized. I know that I have my family with Jim and our Heart Family, among others, to thank for so much love, prayers, and support as well as sharing of wisdom through these times. Bless you all!
We worked on taxes, where Beth is the expert, and organizing more of the disarray of our home from four years of illness, five major surgeries, and the lack of energy that takes such a toll. Patty is truly an expert in Organizational Management, and while this is a much smaller field than the areas she usually is working on, she used her talent to take four years of papers and books and notebooks and statements and even the main computer - and the results are like magic! I can actually sit in my desk chair and work at my desk, which actually does have a wooden top - lost in all that had gone on.
Beth guided the completion of taxes I had only been able to start preparing. I have carried the weight of them around since we realized we would have to file an extension in April. What a tremendous relief to see Jim leave to FedEx the small business tax preparations to the accountant this morning, and to know that all of the rest of our personal taxes are well organized and much closer to completion in the hands of Beth, who has graciously been our main accountant for decades. We will truly miss her as she winds down her business, but she has been a wise and competent counselor for decades, and we are blessed.
Time was made to enjoy one another and for Great Aunt Beth to meet and get to know our Grand Autumn Grace as we all shared in a big party with the big family of both Jeremiah and Elizabeth and their many close friends Saturday afternoon.
Autumn was glowing in the pink with red and white tutu that her Momma and Grandma made for her. She wore some flowers in her hair, had on a white top made for the day, with a large pink 1 appliqued on it as well as her name across the front. Finishing it off were first white lace leggings and later bring pink pants and sparkling bright pink shoes! She dug into the cake made for her by her Aunt Kristin and Grandma - it was white cake with very bright pink icing. We laughed and clapped, and sang to her as she demolished the lovely cake. (Top and tutu had been removed for this activity.)
My phone was acting up but Great Aunt Patty, with four Grands of her own already, took some amazing photos, and I will post them here and let you know as soon as that can be accomplished. After packages and playtime we all feasted on a lovely buffet of a very large and delicious cake in the shape of a 1, meticulously made and decorated by Aunt Kristin with help from her mom, Grandma to Autumn, as well as watermelon, fruits, cucumber sandwiches shaped into butterflies, and butterfly shaped cheese and crackers, dips, and many other delicious nibblings. To wash it down there was raspberry lemonade or Sangria or ice cold water.
It was a beautiful afternoon. And the big blue eyes of Autumn taking it all in, with grandparents, aunts, uncles, and many friends in attendance had to be a stimulus overload for our little one year old. She took it in stride despite missing her naps for the day! Finally Autumn and parents waved goodbye to everyone.
We three sisters made a short stop at my house before heading out for a glass of wine and a little bit of protein at a lovely spot in the outdoor courtyard of a local restaurant on the edge of a good sized pond and waterfall gracing the scene and live music.
This was one of my favorite parts of the visit, a time for relaxing and memories shared and toasting to all that had been accomplished just in these very days, remembering our families, the grace of God, the bonds that will forever hold us together, the joy and delight as our little Child of God, Autumn, turned one, the rest of our children and Grands, and the tremendous improvement in health for me and the accomplishments of Patty as she has worked endlessly on plans and steps to rebuild the home she and Cliff lost to a tornado in May.
Yes, the many gracious words, prayers, and acts of our Heart Family made a definite impact that was recognized. This was, in my memory, the best time of loving and laughing and joy I have participated in in these last four years. I was able, with all of the work either behind us or in process, to really relax and FEEL GOOD! What a relief to be washed in love and not feel like the world is swirling or food ingested might not stay down or with a headache pounding. Laughter is so good for the soul.
There are so many people who have contributed to getting me to the point of improving health that I am living today. I believe you all know who you are, and ask that God pour blessings on each of you!
Yesterday we had a very light breakfast and dug into the rest of the work as only the Farley (my maiden name) family can do. Despite all of the work, the coordination came pretty naturally and there was plenty of laughter and loving teasing going on.
We had a wonderful afternoon break when Elizabeth and Autumn came over to visit. We had a fun time in the front room. I am so grateful to Elizabeth for going out of her way. She knew I was hoping there would be time for Great Aunt Beth to better get to know Autumn, whom Beth had just met the day before. Autumn never disappoints, and was soon playing and laughing, sharing a book and playing with some small toys (including Snow White and the Seven Dwarfs) Granna (that's me!) keeps at her house! Autumn hugged the big Pooh Bear her Momma had left when marriage meant downsizing a bit, enjoyed two new sipper cups from T & G, and learned that Aunt Beth knows where the crackers are stashed. It was a comfortable, relaxing time, with Autumn claiming center stage.
Jim came home from a break in his call at around 7, and we were all starving. Jim acted as the provider and facilitator as dinner was ordered, picked up, set out, and enjoyed by all four of us in the large front room, now even cleaner than it had been. It was a great dinner well deserved by the workers of the day. Easy talk flowed and laughter was interspersed when people stopped eating long enough to say anything. Another great day!
This morning I am basking in the afterglow of seeing and spending time with so many people I dearly love, and also in the fact that I am not under pressure to accomplish more than I believe I can in the time left. A huge piece is that I am not hurting physically to a degree that reminds me of my health. I pray that God allows me some time from the trials of life to complete the work my sisters so efficiently have in process, and to enjoy my family and friends and the pleasures of life, walking and reading and being out on the front swing enjoying Jim's flowers. They may seem like simple things, but they are a huge turnaround from the past four years. I will continue to be, as much as possible and much more than has recently been possible, a realistic optimist, seeking the small miracles God grants us every day and living in Joy.
I know I am greatly blessed, and I again ask God to bless each of you who have been a part of it all.
I love this Heart Family and know that many of the friendships I have made thanks to it will carry on in the years to come. Who could ask for more?
Prayers and best wishes for KAY PATE and her medical team as she undergoes surgery and the first hours of her recovery tomorrow. Kay, know that prayer will continue for you throughout the days to come. Please have someone post for you so we know how you are doing if that is workable for you. But most of all, know that you will be fine and the entire Heart Family is with you! Ginger
Just checking in. I am doing fine. Only lost my composure once today when a call from accountant caught me by surprise. Tells me how very much I am concerned about getting the tax work done. I spent an incredible number of hours on it in the first three months of the year, but am just not finding everything that was accomplished. It is most likely in a computer file somewhere, but now I really am wondering where.
And wee little Grand Autumn is one year old in two days. I want unrushed time to wrap and be there and celebrate. And two of my sisters come to town the next day and I do not want them to feel like they have to do much with the tax work or about the house situation. But I have too many physical and fatigue issues right now to whip everything together before they arrive.
I really had anticipated having the whole summer to pull it all together, but adding in the need for building information, making connections, plans for, and accomplishing heart valve surgery and starting recovery has wiped that out. My sisters are smart women. I know they will understand, but for some reason that does not seem sufficient for me.
But no question I am going to be celebrating this beautiful Child of God who has been such a blessing to all of our family. She is such a beautiful little thing, strong in every way, very advanced in what she is able to do and adds new things every day. In their back yard is a gym set with a plastic swing and slide. She just last week was getting introduced to the plastic slide. She is long and not encumbered by baby fat -- her strength is amazing. So she just has learned to walk and already can carry things. And when taken to the top of the slide and set free to slide down, this little Spitfire got to the bottom and immediately turned around and climbed back up from the bottom of the slide to have another ride down! I found that amazing. She loves to go outside. It does not matter if it is out back for swing and slide or out front for a brisk stroller ride. I promise you I will get some more up to date pictures, because the ones on this website do not allow one to grasp the delightful personality of this child. It is not a surprise that unless tired or hurting she is always happy. Her Momma and Daddy make it a happy family and Autumn has been given encouragement to do what she can. She is pretty adept with a spoon - in either hand - and loves to feed herself, from Cheerios and bits of fruit and veggies to cheese and, yes, an entire container of Greek yogurt. The yogurt in the end covers a sufficient part of her face to make it look like she has been made up around the mouth like a clown. She handles her own sipper cup and, in the past week or so, has been refusing a bottle of Momma's milk before nap. Several of us have had the pleasure of sitting with her in the rocker in her room to give her a bottle only to have her loudly express her displeasure and point to her crib. She is ready for her nap! What a character! This first year has been so much fun that I cannot imagine the next year being less of a delight!
So Happy First Birthday Autumn on Wednesday from your very devoted Granna.
And as for the rest of you, may your days be filled with the wonder and joy as seen through the eyes of a child!
I pray for you comfort and rest, a healthier day each day than the one before, and that we all remember to just let go of the little things that we often allow to plague us, Live in peace, dear friends. Love and hugs, Ginger (Proud to be Autumn Grace's Granna!)
The weekend is thankfully here, and that means to me that there will be someone here to lift heavy things at least for a time and to have company (My husband, Jim). My initial foray into reconstructing where I left off in taxes in March was a total episode in frustration yesterday. At 5 PM I deserted it for other things. Back at it after posting this morning... Please pray for good things!
Autumn's First Birthday is Wednesday, so everything is here but there is wrapping to be done. This is a joyful way to spend time.
My computer upgrade and the app upgrades made in the past two days are a mixed bag. Phone upgraded successfully. App I use daily says it updated fine, but is giving me a dark brown screen. Yuck! Have sent e-mail for help. Tracker I sync to my computer on a regular basis to measure activity will not sync. I started it in early June and it is telling me it has not been synced for 14 days, although I did sync it. No clue why something would work for months, then have problems. Another thing to figure out in my spare time.
Feeling pretty okay. Just a little achy at incision site and around right side. My FP checked to make sure the stuff on the right side was all muscle, then told me it was going to be with me for a while. We both think it is from stretching during valve surgery some areas that had been over stretched two years ago during my breast cancer surgeries. Such a delight!
Looking forward to the arrival of two of my sisters (Omaha and Phoenix) on Thursday. We have not been together since my surgery or even since the tornado demolished Patty and her husband's home on Mother's Day. And Saturday would have been our Mom's 90th Birthday. She died of breast cancer at the age of 56, but she was an incredible woman, fun, capable, intelligent, athletic, great sense of humor, a nurturer full of compassion who worked tirelessly to help make others' lives better. I am proud to be her daughter, and know those years with her were a real blessing. So as Autumn has her One Year Birthday Party on Saturday, we will be celebrating the gift of our Mom, too!
Hope each of you have a great weekend and week to come. Prayers and positive thoughts for each of you receiving new valves this week. Remembering that each person on this site who is post-op had a successful surgery and is now healthier and has a better quality of life should be an encouragement to you!
Taxes Catching Up -- May be a bit quiet for a few weeks
Journal posted on September 19, 2014
Just so you know, I was having serious problems with double vision from the head injury and vertigo problems early this year when it was time to work on filing for taxes, and the information we needed in the way of 1099s came in very late. Then all the heart stuff began. The result is that I am going to have to really hit the tax stuff these next two weeks in order to meet the October 15 deadline, so if I am a bit quiet for a while you will know why!
I am looking forward to my Grand's first birthday. Autumn turns one year old on the 24th, and it is just amazing to think of all she has done to grow and learn in the past year. I am very proud of her parents, Elizabeth and Jeremiah, as they have not just enveloped her with love, but also worked hard to stimulate her to do new things and things for herself. She does fairly well with a spoon, is walking and carrying things while mobile, loves books, and knows that her "baby" doll need occasional hugs and feeding. She has brought a lot of joy into all of our lives, so this will be quite a celebration. So far it seems to be shaping up into lots of pink and butterflies as her Momma and Grandma have gotten creative! Very fun!
I am hoping my son will help me get pictures out of my camera so I can post some in my photos here!
Love to all and every hope that each day you are making progress and feeling better and more comfortable. If you are post-op, all you need to do is look back to the beginning to measure how far you have indeed come! Blessings!
Today I had an appointment with my new FP (Family Practice) doctor. I actually had already seen her for a few small things before the valve surgery, but this was the first longer appointment post-op. It was hard to contemplate having my former FP retire after seeing her for over 35 years, but I had no question in my mind that she more than deserved to retire. And as it turns out, since she has more free time, I have actually seen more of her since her retirement, as we can now do more to nurture our friendship.
When I went in to see my new FP today, it confirmed what I believed from my first short visits. She is very personable, thorough, and smart. And she took time to review my log of Date - BP - HR - weight. But first she told me how great I am looking. (Anyone would be pleased to hear that!) she had a Nurse Practitioner student with her, so there was a bit more explaining than might otherwise have occurred.
I had put together a list of my questions/concerns as well as comments from my cardiologist 3 weeks ago. As she looked through my log of data, she came over to explain that some of my blood pressures were too low, and should be addressed. (I had asked the cardio the same 3 weeks earlier.). But what my FP said was that her concern, particularly in light of my brain injury, was whether my BP was high enough to be getting reasonable oxygenation of my brain. Then she took some time to explain to the student that BPs in my range could cause ischemia in the brain, and how to calculate that from the BPs logged.
I told my FP that I had been hoping to cut the dose of my beta blocker, and the comments my cardio said in regard to the metoprolol.
Then my FP very kindly explained to the student how much I know about meds and why. My FP then turned to me and said she thought I would be fine on half the current dose, and she was surprised I had not already done it. (I explained that even if I think something should be changed, I do not do it without my doctor's permission.). So my FP said we will cut the dose and give it a trial to see if the vertigo lessens over time. To say I was thrilled is an understatement. So will start that with tonight's dose and see if there is improvement with the vertigo. Yes!
And she also had some lab drawn to see where I was on recovering from the post-op anemia (another item on my list). I am delighted.
And having a student there meant that there would be some double checking of things like lung and heart sounds, but I am a strong believer in education, so that sort of thing does not bother me.
The other comment was how well my incision is healing. I think it's looking good, too. The tremendous sensitivity I had with it earlier is resolving, probably a combination of time and the light gel I massage into it twice a day.
Love to you all and prayers for healing and comfort - that you sleep well and each day be healthier than the day before,
Glad to be able to say that I managed to receeve a short respite from the vertigo. Two whole days without that grungy feeling. And yes, it's coming back today but I am hoping it won't get to the levels I experienced this past week.
Blessings to all and hope you find each day that you are closer to the health you are striving for!
I am very appreciative of those of you who responded to inform me better about your experiences with metoprolol after surgery and how various cardiologists have advised you. I am still having vertigo that is bad enough that although my cardiologist has given me permission to drive, I know that I cannot safely drive with this much vertigo. Most of you know that I had a traumatic brain injury years ago, the effects of which still flare up from time to time. One of those components is vertigo.
In March, with an aortic valve that was not just severely, but critically stenotic, vertigo I had not had problems with for many, many months began occurring again. One of the things I really was looking forward to post-op was potentially going back to the rare episodes of vertigo of short duration.
I had an appointment with my cardiologist two weeks ago and took in my log of blood pressures and heart rates. I really thought he would address the question I had on the list I handed him as to possibly changing the metoprolol in some way - dose reduction, hold off with low blood pressure, etc. He did not.
I was scheduled to start cardiac rehab at the end of this week, but fail to see how I will manage that when every day I have vertigo when I wake up that remains all day, killing any appetite as well as any desire to even move around. If I cannot drive to cardiac rehab, how can I be expected to participate.
I feel stuck -- like between a rock and a hard place or in a Catch 22. I do not want to wait months until I no longer have to be on metoprolol before doing cardiac rehab.
And while I am usually a fairly decent problem solver, I do not see this resolving in the short term.
Some of the members of my Heart Family include: Terrie S, Olga, M in Cornwall, Julia, Anne Shannon, MZ AKA Tony C-P, Kels, Mia, Gigi, Eleanor, Michael Meyer, Lynn Q, Meredith B, Mike Culpepper, Lynn, Bob O, Rebecca, Susan Smith, Adam, Ted Johnson, Colette, jeffo, Clare Auten, Steven H (Popeye), Deb Z, James (Mike) and Tammy, and Vicky.
I apologize for those of you whose names I missed, but you know who you are!
I want to just take an opportunity to say what a privilege it is to journey with each of you, to pray with and for you, encourage each other, share experiences and knowledge, laugh together, tell stories, show off family, give and receive advice, teach and learn together, and experience and share where ever our journeys may take us. I look forward to the future with you!
May you continue to be blessed, to be healthier with each passing day, and to enjoy this incredible thing we call LIFE!
Hi Heart Family and friends!
I am still a little frustrated with the changes of the website, and while I appreciate the Founder taking some of them and really handling them, there are a few things I will just "air":
1. I am finding way more often than I would like that a post I may have spent 45 minutes writing does not get posted. This does not encourage further participation, but instead, frustrates. If I follow all instructions, where are the posts???
2. I used to have a much easier time following what was going on with the people in the community who by now feel like family to me. I am saddened that this is more of a trial.
3. I am frankly UPSET that more than the first two lines of a new post of mine is getting put in "MY NEWS" and sent to EVERYONE!!! If this does not change, and change soon, I am planning to either only make abbreviated posts or, as a last resort, stop using the site altogether.
I have to say that I am saddened that the "intimacy", "Privacy", unique posting on either My Journal or Person's Guestbook, is now out for anyone on the site to read.
I have benefited so much from this site. I know that I have friends spread out all over the United States who check my personal (or I thought it was personal) journal to keep abreast of what is happening with me but for whatever reason do not have time, comfort level, or have concerns about interrupting me when I am possibly sleeping or such, and have found this a great means of obtaining information when they have time. This includes people from my own family who live states away, my church, dear friends from high school and college and past co-workers, as well as others.
And I can attest to the incredible encouragement, love, and importantly - personal experience shared - to educate each other and take away the fear of the looming unknown and replace it with the power of truth and knowledge.
I went through my guest book today and was again blessed by all of the love, prayers, encouragement, and offered personal information that have come from nearly fifty different people or families. How amazing is that?!? It is not something I want to lose.
So I PLEA that the total posting in MY NEWS become an opt in feature, or that perhaps it reverts back to only a few lines from new journal postings as it was before.
The "OLD" method maintained much more privacy, but allowed the community to find new people or those who were having problems and head their direction with help.
IF YOU AGREE with me, Please let those who run this website that has felt so much like home know of your feelings.
I am very sad regarding the current situation, but maintain hope that consideration of privacy issues be addressed. If I want everyone to know something, I will go to each of their guestbooks and tell them so, or if it is important enough, ask the webmasters to make a post on a particular topic.
I have met wonderful people on this website, many of whom I love and intend to stay in contact with for the rest of my life. And if I have to find other ways to do that, then I will.
Talking to Jim this morning I realized that this is one month out for me! Yes, I am so glad it is done! And it seems as though every day is a little bit better than the one before. No longer wearing so many bruises that my skin tone is indistinguishable, and some achiness. Trying to get by on Tylenol when I need something, but most often the time of need is when trying to sleep. I guess whatever has been done that day has caught up with me by then and I am still enough to feel it.
I start Cardiac Rehab in less than two weeks, which will be good for me. I appreciate the remarks from Adam on out as to how valuable that can be. Not too busy of a week this week, hopefully.
Wish each of you a happy Labor Day! I doubt if many on this site have not tasted the toil, dedication, commitment, and satisfaction of a job well done. So my congratulations to each of you!
I have a Mini Z, as Tony C-P, would call it, but the incision the one most irritating part of the surgery that seeks my attention. With no scab, its edges remind me of the newness of the scar with nearly every move. I know Adam recommends the Invisible Shield for full sternotomies, but am aware that not everyone has one and something is needed for my shorter but very electric zapping new scar.
So two nights ago I was trying to figure out an easy, inexpensive way to go to sleep without its constant reminders. And this is what I found that works for me.
I took a couple gauze pads and folded them length-wise so they would cover my incision site completely. Then with the most talented hands in the house, had my husband, Jim, tape it into place with some micropore tape. He gave it a little slack so if it shifted a little, it was not going to send me to the ceiling. And in the first 24 hours it took a shape that contours well with my anatomy. (Any tape is probably okay, but I have had enough adhesive lately and this is much gentler and less nerve rattling to take on and off.)
Can't say how long I will keep it, but it reminds me of how over 35 years ago we figured out that my post-mastectomy Mom tolerated everything better with one of Dad's T-shirts on before anything else, bra included, that she wore. Maybe it will help you, too...
Love to all and prayers that you feel better each day on this Journey of the Heart.
I have worn it for two full days and nights now, removing just for washing, and suddenly my nerve-exciting incision is not a reminder anymore.
Some of us cannot really walk around topless, but this has solved my problem. Even moving in my sleep it no longer wakes me up. The times I notice it during the day are when I see it or go to change it.
Yesterday had "Close Out" session with PT and did not let him make me do anything, so am still working at getting back to where I was before he was here last Saturday.
Did notice one thing that can be done to reduce strain when doing something and can a tightening or pressure in the area of one's neck. Tip your head so your chin is down in front. Then the back of the neck is stretched and there is less likelihood of straining rest of neck. I don't know about the rest of you, but my neck has been feeling strained since surgery. I was told it was from the positioning they use.
My thanks and apologies to Adam. I think the man could be a plate juggler with all the sticks in the air and nothing crashing down! Adam very helpfully posted my profile pick when I could not get it to go. To do this, he had to change the password. I missed his e-mail telling me so, but he still caught up with me and it is good to feel like I am back in the HVS world again!
As for me, I was doing a lot better until I had my second home health PT visit. Between the bilateral mastectomy 2 years ago and the need to go through the sternum, I have "old" pain stirred back up and on top of the new pain. I was off pain meds for three days before that afternoon hour Saturday. I canceled PT for today. He also had me do a lot of arm maneuvering after reminding me not to reach, stretch, etc. So tell me, what is wrong with this picture? Just before he left he walked me long enough in a small circular area that my vertigo kicked in. Reminded me on his way out to stay in chair till it passes, then to get up slowly. Duh! I waited until he was gone, locked up, made it to bed with working phone and knew I was at least safe. All of the chest stuff locked up within 2 hours of his leaving. So I am resting and trying to let what was damaged heal.
Start Cardiac Rehab on September 12 (6 weeks after surgery) and intend for the current problems activated by PT to be gone by then.
Lost the last of my scabs from chest tubes today and have drainage, so cleaned with hydrogen peroxide and put bandaid on so air can get in.
Now I am trying to make do with Tylenol unless I wake in pain at night.
I am not having trouble getting around, but no driving yet. Fine. I know I need the rest.
KEY POINT: IF SOMEONE IN "AUTHORITY" TELLS YOU TO DO SOMETHING THAT YOU HAVE BEEN TOLD NOT TO, DON'T DO IT. i LOST THREE DAYS BECAUSE I THOUGHT PT KNEW WHAT HE WAS DOING. BEWARE OF THOSE WHO DO NOT LISTEN OR SAY ONE THING THEN DO ANOTHER. SPEAK UP. THE PAIN YOU STOP MAY BE YOUR OWN!
Terrie S Dismissed late on Aug 25, 2014 - Will Post Later
Journal posted on August 26, 2014
Terrie was dismissed some time yesterday and still have a 2 hours ride home! She has some pain problems that went unrecognized by the staff her entire stay, and is much better off at home. She and Gary are working on accomodating, so please keep both in your prayers and know they send their love for the entire Heart Family.
Terrie's one the Loose August 22, 2014 -- Website Observati
Journal posted on August 22, 2014
Delighted that Terrie is up and moving around. Those first steps are hard ones, but we know that they are really giant steps. Terrie, our thoughts and prayers continue to be with you - and your precious Gary!
Observations on website changes from today: I am still saddened to see so many responses written in earnest for other Heart Family Members' messages and postings seem to have disappear. This is a nice, clean look, but if it is at the sake of losing so much valuable information, I would go back any day.
When an response is posted, the name of the person posting is not automatically entered, so please give thought to putting your name at the end of responses so we know who needs info, has a brilliant thought or anything else.
Today I tried again to put in a Profile Photo. That gray outline is not what I had indicated. I received no error messages, so will give it another try when it is not so late.
Ginger - still experimenting with changed website. Perhaps an explanation of changes and how to handle them is order from Adam and the Webmasters???
Missing Responses as a Result of Website Changes ??? Retrie
Journal posted on August 22, 2014
I had answered every guestbook posting in my guestbook, but find I am rewriting them. Since I am still left with a 10 pound weight limit (which is good considering how my arms and chest feel), this leaves me standing where my laptop is parked when I am not normally using.
Adam, Webmasters, etc. -- Are you able to retrieve those posts from earlier today.
My apologies to all, but you demonstrated, at least from my point of view, that adequate pain control is not a subject to be taken lightly or that any of us want to meet, no matter how dark or light the hallway!
Today I have again been reminded that we have had several in our midst who have had less than optimal pain control post-op. This should not occur. The days of biting The Silver Bullet are supposed to be gone!
Both my husband (A general surgeon with compassion and humility - they do exist!) and I are strong believers in making sure those we care for, either through our practices or when helping family and friends through surgeries, etc., receive adequate pain control. The tool kit of pain medications is now big enough that a patient who for whatever reason does not get relief from one medication will find relief with another.
A large part of our belief comes from the role pain can play. We want those we care for to save their strength and energy for adapting to the changes made by the surgery and for healing. As a result, we see unrelieved pain as an unnecessary hinderence in the recovery process.
If one is able, the first thing to do if pain is not being controlled is to hit the call button or speak up - don't wait - and let those responsible for your care know your pain is well past the bearable point. There are many steps that can be taken here, including increasing the dose, increasing the frequency of the medication, switching to another medication, or adding on an "adjunct" or helper medication, among others.
But before surgery, one thing that is not well known or taught is to make your family, friends, whomever may be with you, a part of your team. Have a discussion, which can be done together at one short sitting or on a one-on-one basis, with people who will be there with you. THEY KNOW YOU far better than the health care personnel do. Let them know that you want their help during the hospital and recovery process. You are essentially giving them permission or empowering them to speak on your behalf.
I had a time early in my head/brain injury when I was in severe pain and the words coming out of my mouth were not what I was trying to say. I was fortunate that even though this was 25 years ago, I had people with me, some of them health care professionals themselves, who knew me well enough to be able to tell just from my facial expressions that I was in significant pain. They contacted those in charge of my care and made sure I got adequate pain relief, and fast. I will always be grateful for that.
With often times a lower number of nurses and aides per patient than was once common, the potential of this sort of thing to occur is more likely. A person needs NO MEDICAL BACKGROUND to advocate for a patient. The skills required are a knowledge of the patient, preferably on a personal level, an ability to communicate with the patient, and a commitment to communicate with the health care staff on the patient's behalf. Some times this is as trivial sounding as letting the staff know there are no towels in the room. But more often the greater need is when a patient has discomfort that is not being attended to or not adequately being attended to.
We have at least two members of our community in the last month who have not received adequate pain control. If you flip to the "My Guestbook" part of my own journal, you can read the discussion Eleanor and I have been having about getting adequate pain control. Eleanor's post-op experience was with no real pain relief to speak of. And it was not because the staff was not trying.
So I am writing this so you can arm yourself and your family/friends in the event this sort of thing should occur to you. THE FIRST THING TO REMEMBER IS THAT THERE IS NO NEED FOR ANY PATIENT TO SUFFER FROM INADEQUATE PAIN CONTROL IN THIS DAY AND AGE. Knowing this and and being willing to communicate with the health care staff are the only requirements. No medical background is needed.
All afternoon I have been concerned that yet another member of our community may be heading down the road to suffering unnecessarily because of pain that is not being treated adequately. I ask you to please read the post that Gary put up about the full day in the ICU, written on behalf of his wife, Terrie S. Gary is doing a magnificent job of advocating for his beloved wife.
I ask that you read that post and then post a sentence or two that is supportive of Gary in his efforts to help Terrie and also, perhaps, of making him aware of your own experience with pain post-op. The more of us who respond to him, the better equipped and supported he will be if/when Terrie needs his help. And this afternoon it certainly sounded as though that was a possibility.
I wrote a fairly long piece to Gary on Terrie's guestbook, and if you agree or have something else helpful to add, please let him know.
Again, my point is that it is senseless for anyone to writhe in pain post-op or to be afraid they will be placed in that position.
I myself have, with my recent heart valve replacement, now had five (5) major surgeries in the last three years after a long life without a single one. These took place at four different hospitals/medical centers. And I am thankful to be able to say that while none of them were pain-free, for each I received adequate medication to control my pain.
Yes, it should always be this way. But each patient is different in genetic make up, size, experience, pain tolerance, and a variety of other things. So a dose of X size in patient A may be great pain relief, while that may not be true for patient B. And if a health care provider loses sight of this fact and begins to treat everyone as if they are patient A, problems can arise.
I ask you on behalf of the entire Heart Family to give input to this issue so we can empower each other and our families/friends/others and stop completely this senseless but unintended problem with post-op pain control.
Many thanks to each and every one of you, and may your sleep tonight be restorative and your day tomorrow bring you one step closer to the health you seek.
I pray every one in the Heart Family keep Terrie in their prayers today, that her surgery be successful, that if reasonable she is able to have the minimally invasive method rather than the full sternotomy she was told to expect until just this past week, that her dear Gary is comforted as he waits, and that she receive full power to heal and recuperate, along with this Great Heart Family that she is such a big participant, showering others with her love and healthy humor as well as wisdom.
Aside from that, just a short comment about incision care, since I have been getting information recently on the method I use. It works for me and may help you, too. We are all, I believe, told to wash our incisions daily with mild soap and water and pat dry.
What I learned to do in past surgeries is to add just a very small step. Once the incision has a scab and has been washed and rinsed, lay your clean wet warm washcloth on the incision like a warm compress for about five minutes, then pat dry.
The reason to consider doing this is that once the scab formation is complete over the incision, which is quite quickly in most cases, scabs will do as they normally do if left untended. They dry and harden and pull at the edges of the incision, sometimes causing itching and irritation. Laying the warm compress on the area allows the scab to soften, and because of this, the pulling and other results of a hardened scab are alleviated. The softening of the scab allows the edges of the incision to come together in a "more natural" and less traumatic way. The usual result is that the scab drops off sooner, leaving a faster complete closure of the incision.
The two areas where this may not occur are at the edges (beginning and end, it you will) of the incision. The reason these are often the last parts of the scab to drop off is because at these two paints in the incision, the surgeon commonly puts in an extra stitch or similar to anchor the full suture.
I realize I am fortunate to now be part of this community who has had successful surgery and am beginning to recuperate. It so nice to be in one's home with family and friends around. I have learned to be much more thoughtful about where I am reaching, how heavy the item is, how necessary it is that I reach it now, and figuring other ways to get to things.
There is more than one reason to hold one's pillow, whether a heart or something different. Besides the obvious, when holding a pillow to one's chest, the temptation to reach out is diminished, perhaps because one's arms are already across one's chest.
But the lesson has been learned by me through repeated errors, and add up to a night when my arms and the area across my chest remind me I have not paid them their fair consideration. Last night, just over two weeks out, I realized about 1:30 in the morning that the reason I was still awake and quite uncomfortable had all to do with how far I had let my arms wander from my waist during the day. A pain pill with just a little something to protect my stomach were payment for the sleep.
I have been working my way down on the pain medicine ladder, but took one step back last night at a result.
I am curious as to whether others of you have had pain in the area of the armpits? My conjecture is that I may be having more problems than I have heard about because I had bilateral mastectomies with reconstruction two years ago, and perhaps the additional stretching of the already stretched pectoral muscles is making things worse. But whatever the reason, I know that this, too, shall pass with time. It is just a painful reminder for the time being. I have not come up with anything besides pain meds to calm them when at their worst, although some cold packs do help.
One other item I will discuss with my cardiologist is the relatively automatic prescribing of a cardio-selective beta blocker like metoprolol in the post op period. It makes sense to me to lower both heart rate and blood pressure during this period to allow the heart perhaps a little less workload to help with healing. But for myself my blood pressure - which was already in the normal range - is dipping down to 92/53. I know enough to sit on the side of the bed for a bit before standing up, but still feel light headed for much of the day.
Can anyone tell me if there is a general duration that these are prescribed post-op???
I am again celebrating the successful surgeries of so many on this website, including many in the past month. For those of you who are still pre-op, please seriously take this as a sign that heart valve replacement surgery is now a fine art practiced by many, and not something to be frightened by.
While there are potential problems post-op, it appears from the experience on this site that surgeons know what to watch for post-op and have excellent tools, such as medications, to deal with those.
Special thoughts and prayers for each of you getting close to surgery, especially Sister Terrie, just a few days away. May the many prayers enveloping you bring you peace and comfort, and may you give yourself permission to take a break from whatever activity these brains of ours thrust into the spotlight as "must-be-dones". Now is the time to rest and build up some reserve energy, as well as doing whatever soothes your soul and calms your psyche - whether it be meditation, soft music, faith materials, or even time in the hammock. You will be more than happy you did it (or didn't do it!) after surgery.
Blessings one and all and may you find yourselves tomorrow closer to the health goals you strive for.
I am now writing this for a second time because about four paragraphs into it, everything above it disappeared! Frustrating, but my short term memory is thankfully still there when I need it - so a repeat.
I am incredibly grateful for all of those who prayed and encouraged as well as those whose care and expertise allowed me to now be on the healing side of things.
But for those of you still in the PRE Phase, researching, learning about procedures, centers of excellence, valve surgeons, and valve types, you remain in my prayers. Those waiting have, I believe, the hardest part of the job. Please try to remember you are not alone and there continue be growing numbers of us in the POST stages of healing, reacclimating to what a valve replacement means in terms of improved quality of life, and beyond.
For most, and I include myself among them, the biggest negative is fear of the unknown. Knowledge is power. So ask your questions, check the Learning Center, read Journals already posted, watch videos, and the more you learn the more relaxed you will be.
I give special thought to Terrie, who is the first person I really got to know on this site, and for whom surgery is just nine short days away. (The closer one gets, the shorter the days.) For you and all of those in or soon to be in your position, prayers that the rest of the journey is smooth. This is not the time one wants to find a nail in their tire, but remember that even a delay may get you to surgery in better shape than you would have been otherwise.
The best advise I can give you is to be patient. Be patient with yourself and GIVE YOURSELF A BREAK. Because this is when you need it most.
Be patient with your family and friends who despite everything cannot possibly know how you feel because they have never stood where you are standing now.
Be patient with your health care team and medical experts and ask questions about anything you do not understand. It's impossible for them to know what is going through your head.
And once at your surgery destination, do all you can to relax, smile at others (who will smile back and you may see again!), thank those who help you, and try to "go with the flow" -- as each center has their own way and the methods they have found work best for them. If you have special needs, as I did with my head injury, make sure they are known and recognized so they are appropriately dealt with. My example is a general anesthesia protocol that added to the usual steps for anesthesia during surgery.
My incredible family practice physician years before saw this as a problem coming down the pike. She researched herself and consulted with people with expertise in other fields. As a result, I went into my first ever general anesthesia with some additions for my care that did, indeed, make a huge difference in the outcome. And repeatedly did so in the three surgeries that followed in the next six months.
Now, at a major among majors of centers, I was praying the requests I would make would not be glossed over to my detriment. Nothing could have been farther from the truth. Anesthesia was anxious to do anything that had proven favorable in the past, and as I spoke to other anesthesia people and my surgeon, all reinforced their desire to use a tool unknown to them if it would benefit me. I was filled with relief. And use it they did! But even better, I woke up after surgery with the same personality and thinking skills as I had before surgery.
So if there is anything you can provide, even in information that is specific to you and/or your previous experiences, SHARE IT! Never does a person know too much or be so experienced or skilled that there is nothing left for them to learn. And for me, I am grateful to each person who saw the wisdom of what was presented and was willing to add a few steps to the dance.
How incredible to wake up knowing one is POST, but feeling pretty darned good. And Adam's surveys demonstrate this is the most common outcome.
So be your own best advocate. It may mean leaving the dinner to have time to yourself the night before, or thanking someone for being willing to give their take on the subject but politely passing up what is probably less-than-factual information, or giving your surgeon the personal information that only you can share that could make a difference in your outcome.
I am so incredibly grateful to all who have prayed for, taught, and, encouraged me that mere words are insufficient. Please know I give my love to each of you and will continue to be praying for you as we journey along together, no matter how far along the way.
It was a long time ago that I learned that it is not telling a person you will pray for them that is the most powerful thing a we on this earth can do. Rather it is telling that person you will pray for them AND DOING IT! What a difference that has made to me. I know so many are praying, and have been, five times now, filled with an incredible peace and comfort as the hours and minutes to surgery drew near. Five times does not a coincidence make! No, all you have to do is to ask and you will find that the One Above All will listen and will answer.
May each of you reside in His Grace always!
And blessings to Adam who heard the first call and continues to bless the rest of us! This little snowball is larger than a glacier now, and it is beautiful.
Lost Post -- Schedule Adjustment - Home 2 Days Early!
Journal posted on August 8, 2014
I wrote a long and detailed post of the events of the last two days of my hospitalization. I made a few revisions to it, and now, waiting for this dose of pain meds to kick in at two AM several nights after dismissal, I have managed to lose the entire thing.
But as I review what I posted previously, I think you can and will obtain the majority of what I had intended.
So just a few reminders and new pieces of information:
For those of you unfortunate not to have followed the writing of Tony C-P several weeks back, taking the time will save you many misteps. I thank him as we are in the process of doing what he recommended. Tony, You are the Man! And what you shared is essential to anyone who plans to return home, which unless I am deluded, includes the entire Heart Family.
Jim and I had included in our plans what I call padding. These are days available in the event that not all occurs according to "The Average Patient". Yes, we had traveled once 15 years ago for a totally unrelated medical treatment away from home. And at that time we had added to the "average" a number of days of padding.
The extra days - one before the activities/consultations/tests began - and several after anticipated dismissal - allowed us to flex and make sure we did not ever travel in a state of exhaustion. This included exhaustion from the trip to the desired destination as well as after hospital release.
We have yet to regret it. For this particular trip it gave us time to recoup from the dehydration/exhaustion not expected but possible by the time of dismissal. It also gave us time to get additional questions/concerns taken care of before going over 1000 mile to Home Sweet Home.
And in spite of this use of time, we are going home TWO DAYS EARLIER than we had initially planned. We are in much better shape. My sanity has been restored as needed sleep and fluids were restored. I am moving around much better, although I have some areas that are high on the achy scale. I am much more confident that I know what what I need to do to continue to make progress in this journey towards health. I have maps for the next six weeks, including appointments, as well as for the six weeks to follow those.
I have a few conundrums, but anticipate they will be worked through. One if the TEN POUND WEIGHT LIMIT. Depending upon who you are and where you live, this may or may not be a factor for you. First a tip from the Heart Family Pharmacist - while opening many "child proof caps" is well beyond the 10 pound range, a way around this. Place on a table or counter at about thigh high a towel of similar material with some "give". Place bottle one desires to open cap down on towel. With hand(s), press and turn bottom of bottle. It may take a few tries at first, but you will open the bottle using your own weight to do most of the work.
Works like a charm.
My particular conundrum is how to open the front door. The effort to pull the door open is easily over the ten pound weight mark. My current solution is to tell the person coming that I will unlock and de-arm the house so all they need to do is to put a finger down on the latch and push the door in/open. If needed, I can provide verbal help with the recently installed intercom.
I actually expect that this is an oversimplification and other situations will arise, but it is a part of life and I am glad I will be living it and feeling better as time progresses. I love my family dearly and have been blessed by incredible friends, a faith-filled church, and great neighbors; Who in their right mind would not want to go home to them?!?
Again, I wish for each and every one of you extensive blessings and continued improvement in your journey to better health! May God be with you!
There were some tidbits I wanted to pass on to you, and you will see that there are a variety of reasons.
Today, two days after dismissal from the Big House, I had some questions and concerns that had not been addressed.
The first two days out of the hospital were spent mainly in survive and revive mode. I needed to get enough rest and fluids of the right type to actually be in good enough shape to think clearly. Once clear on that, I needed to assess what questions I had that had not been addressed before I left the hospital and, being over 1000 miles away from home, which took priority in getting answers before leaving for home. It was a long walk back to the hospital and too far for me to attempt, so Jim decided a wheelchair from the hospital was an amenable means of transport. Brilliant move.
So this morning at around 10 we headed back to the big house with the intent of getting questions answered.
A number of people throughout their post-op journaling have mentioned back pain. Even Julia was having issues along these line. So before leaving home pre-op, I packed in our electric heating pad. It was invaluable last night. For those who may have missed what happened on our partial day, first full day and two nights, I was in fairly miserable shape upon arrival back at our HAFH (Home Away From Home). I was sleep deprived and dehydrated. While not thinking very clearly as a result, one thing I did was to carefully rehydrate and snooze over three hours in the afternoon both days.
But my state at dismissal did not allow for much beyond my insistence that I was not going to allow further debate of my need for oxygen. I was aiming for the door.
After two days of recouping at HAFH, I knew what questions I felt required answers before eventually heading to the Land of Oz. Several of these had to do with the look and feel of my incision, particularly at the uppermost end. In my own assessment, the uppermost meeting point stuck out from the rest of the ribs when standing or sitting. If lying down, the difference seemed to be much less or unnoticeable.
Jim made a very smart move and first we ended up at the Step Down Unit where I had been the rest of my Big House days. He reasoned that these were people who may recognize us, perhaps even some physicians, who could answer these questions with little or no problem. That did not occur, but we did find a highly intelligent RN who got enough information to verify we had, Indeed, just been dismissed for the unit two days earlier. Once she had understood the #1 question, she stepped down to where we were and did a small series of "try this and cough". When finished she was able to say my experience was in the normal range.
FACT: The resewing of the sternum starts at the bottom and works its was up. The result is extra tissue and inflammed tissue congregate in this upper area. It lasts about 4 to 6 weeks, then generally dissipates. So no worries. I had not heard of it before and the change between sitting and lying made me question whether there was something amiss in the alignment.
She commented that the potential for improper alignment warranted a check for both surgeon and the patient and had there been noticeable grating or the like, appropriate action taken ASAP would lessen any long term problems.
Another thing that both Jim and I have noticed is soreness and aching not immediately next to the sternal wound, but farther out on one or both sides - most often presenting as ache.
Taking a break as I grow weary and less productive.....
Love you all and pray for every good and healthy thing, including rest, comfort, sleep, continued movement toward your health goals and more. Rest easy, my blessed friends, and lean on the Strength that comes only from the One whose children we are!
I suspect you are all aware that I have been yearning to get on line with all of you and to personally let you know how stupendously much I appreciate you, one and all, for being right smack where I needed you through this blithering storm.
The plain (like Oz) truth is that so much has occurred so fast that I'm not sure even I could get it all correct if there was a tape to rewind and watch! And I am not in the least kidding. The attention and care I received here was paramount! I do not think I even ONCE saw a staff member without a smile or grin on their face even at the end of a tough 12 hour shift. These people obviously care about each other, as well as caring for the many extremely ill patients who are constantly being added to the population known as "workload".
There is no way I will be able to update you well, but I once again thank the Father as He entrusted Jim and I with Elizabeth to care for. She was her typical, upbeat, beaming, efficient, and loving self in a totally different environment than what she had previously. And many of you are probably aware that my life this past four years have been much less than a picnic.
(No ice cream in the early stages, Mia, but I suspect that if noted the two helpings of chocolate pudding less than 12 hours post-op would not have met the "Ice chips and sips" regimen I was on at the time!) One never knows until they ask!!!
Things flew by -- the more I think about this, the more it resembles the tornado with its cast of characters poking their heads in and out.
Jim and I were busy every second of the day - so busy in fact that we wrote a working list upon reaching our room after discharge before even getting started!
There was much to do and things that just could not be left out. We had family and friends with whom we had not been in personal contact for longer than even my biggest stretch of the imagination would have allowed. There was, of course, a list to post, then a very long line of names of people (mainly family and friends) to whom we owe so very much, but even short getting a call from us was going to be the best we could do.
Elizabeth is right on the Button (Buttons was my Mom's nickname!) when she said how much had occurred in the flurry of activity that I will probably continue to call "The Flurry" from movement out to the ICU to out of hospital.
It was amazing to be working with such a joyful group of people at every level. They were there with answers, meds, and annoucements as one day suddenly became the next. Often so much occurred within one day that it was hard to keep track of the days. In my imagination, I see page after page of days flying off the calendar in auto mode - no one surely has time to change them.
IMPORTANT: I actually should better emphasize taking the time to catch my breath is a necessary step. Please make a definite period of time as you go from dismissal to arrival "home" once again.
If you are even close to as sleep-deprived as I was, a crash onto anything welcome looking is going to be necessary. As sweet Elizabeth informed you, I did manage to crash into sleep when we got back to our home-away-from-home. Three hours of coma-like sleep was my big role in the first hours out of the Big House! Jim recognized immediately that there were medications I needed to take "now" that were not in our possession. We "team" well and soon decisions had been made as to which meds were most urgent or not available from my Personal Version of Farley Drug (the early family pharmacies on Main Street and, during Board Walk season on the Boardwalk in Asbury Park, New Jersey.)
In no time, taking a well written encouragement from a journal one of you wrote before I went to surgery, Jim had located a pharmacy with branches in our hometown where refills could be obtained. As I drifted into oblivion Jim made his way to said Pharmacy and got home with all needed scripts in hand. He came back to learn I had landed horizontally on the first inviting surface and I had not moved, not at all.
We pulled out the pre-surgical Mini-Farley Drug and made a as-best-as-possible-for-now post-op version. This met the daily core needs, but a separate section was needed for PRN Pain Meds. Thankfully Jim's own work experience made him our instant pro on pain meds.
But here is where another initial mistake later added a STEP I would recommend to you. It was very obvious when core meds were to be taken, but timing of pain meds we had not initially addressed. So for two days (an embarassment), my "Is it time to take another pain med?) came up sporadically. And each time for the first two days that this question arose, the answer was a resounding YES -- Because often a (rather large) gap had lapsed between time of last pain taken and when the followup question was asked.......be careful not to allow yourself to run on adrenaline thinking your pain is adequately treated.
I had left the Big House with major sleep deprivation induced by what I see looking back as a series of errors that occurred amongst long day working nurses, turn over to the next shift, and trying - paramount - to follow the orders and obtain outcomes left in my chart.
I caught this before the fourth in a long line of dominoes fell and was able to stop it, but major damage had already occurred. (In my case it was a large number of orders for laxatives in various shapes and sizes all written on an "as needed" basis to achieve the GOLD AWARD for "Yes, Bowel Movement before Dismissal." It cost me two solid nights of sleep, had me leaving the Big House in a dehydrated state I was fortunate to recognize, and put me on a possibly dangerous trajectory.
Because the entire night of August 4 was spent making ten (YES - TEN) qualifying deposits in the bathroom. (And I was on fall precautions, which were realistic considering my history, were quite appropriate.) At first I rang the nurses, but as time rolled on and frequency increased, the nurse was rarely making it back to my room before I was washing up.
OKAY - TEN in one night ("should have stopped it all") but I was already well fortified by good intent to have a repeat episode the night of the 5th of August - although neither my surgeon nor myself was aware of it.
AND NOTE: My surgeon was willing to let me go home on the morning of the fifth. Sadly, I could not because the "Night the Laxative Took Effect" had been just that night and I was whipped. (I am not sure Jim could have kept me from sliding off the wheelchair that day.)
The evening of the 5th, I saw one of the nurses preparing YET ANOTHER LAXATIVE DOSE! I asked her what she was doing - but this time I knew what her answer would be, and responded with, "The fact that that action occurred here TEN TIMES last night is not sufficient to meet the requirement???" Embarassed look. Paging through notes. Eyes continually getting larger.
A comment: It appeared the dose was not needed. But by then I had already told her I would not take it under any circumstances.
In the rush of activity, if something is occurring with your body, remember that even in your post op state, the first person to realize an activity (mixed in with everything else going on) is spelling trouble ahead MUST stop, ask questions, talk it over, make sure you get a change in behavior. And if you have to, SAY NO!
So yes, the night of August 5th was a repeat of August 6th. (Only with 7 deposits instead of ten).
At that point I sleep deprived times 2 nights, knew why, and was not planning on spending yet another night in the hospital.
SECOND ALMOST EVENT: Before the #1 surgeon could come in the morning of August 6, Five (5) members of his team came in by themselves over a 45 minute period. They did not confer with each other because they did not see each other, nor, looking back, were any notes made.
Doctor 1 - Came in, Looked at my O2 Sats and put on the nasal canulla
Doctor 2 - Came in, Looked at my O2 Sats and took off the nasal canulla
Doctor 3 - Came in, Looked at my O2 Sats and put on the nasal canulla
Doctor 4 - Came in, Looked at my O2 Sats and took off the nasal canulla
When Doctor Second in Command came in, the canulla was back on again. He asked why I had the nasal canulla?
Answer from the general group starting to gather was --- it had been observed that my O2 Sats had been below 90 without using the nasal canulla.
Thankfully, he gave my face a look, and I told him I was not staying one more day because of this. I was more than ready to go home.
He turned to his group and stated, "This patient has been doing very well on room air for the past three days. I don't know who started this, but (as he was taking off my nasal cannula) she does not need this oxygen and is going home! (Look of thrill on my face - repeated later with a hug.)
OKAY - Sorry there is so much here - but two well-intentioned actions on the part of many peers of two groups (in this case nurses and doctors) unwittingly caused a delay in my leaving the hospital when I actually was physically fitter than the day on which I did leave. And I had to recuperate from what they had done over those few short days before I could start my real recuperation.
And although they are clueless about what happened next, I had a second crash - one on the 6th, and one on the 7th. And I made a fool of myself because I was so tired that I was not getting pain relief in time and I was totally confused when I finally got a call through to one friend, then slammed into the wall last night when I was in so much pain Jim had to step in and, watching the agony I was in, had to give me a loading dose to even start to touch one of the most painful nights I have ever had to bear.
Quick summary of learning points:
1. If at anytime during medical treatment (hospital or otherwise), it appears that actions are being taken that are not in your best interest, STOP everything until a reasonable explanation is given or a change is made,
2. EVERYONE makes mistakes. This can be worsened when the one hand does not see what the other hand has done. And if repeated, and repeated, and...
3. Upon dismissal, differentiate between (a) what NOW are your Core or Chronic meds, and (b) those meds that are completing a treatment started in the hospital, and (c) those that are to be taken on as as needed or PRN basis. Have a plan for how each set will be handled.
The final line is that in spite of what I knew and was eventually able to stop, the night of my greatest level of pain was, astonishingly, not in the hospital, but two nights later. And it probably, would not have occurred had I not been so vastly sleep-deprived when dismissed.
Would I go back or recommend this institution again?
ABSOLUTELY. I cannot imagine having the serious medical problems I was admitted with (Not only valve) and getting results that were obtained in most of the institutions of the United States. The care I received in many areas were unique to my situation, my input was duly noted and responded to, and as a result of paying attention to both the treatment team from home, the patient, and the experts at the final institution, I came out with an incredibly great outcome. So much better than I had had in the very best scenario I had envisioned.
Communication is key -- and if any one part "writes off" the input from another part, the potential of Best Case Outcome is less likely to be achieved.
Bless you all for what you have put up with regarding so many questions, concerns, and 17 + pages of posts. I hope that some of that will help others in the future. And I want to continue to be a part of this Great Heart Family. But as I know I, among others, I WILL take care of myself first, because I cannot help another when I am in the midst of a crisis of my own.
Hi Everyone! This is Liz again. :) I know you have all been asking about a more recent update so here it is! (Just took me a bit to figure out how to get on this site again to journal from a computer other than my Moms! And Dad has been busy taking good care of my Mom.) I spoke with my Dad yesterday and he said my Mom and one of her doctor's discussed her leaving that afternoon so by about 2:30 pm after all the dismissal papers and other details she got to leave her hospital room! YAY!! :)) She was dismissed with several new prescriptions to be filled and was scheduled for a final check over with her doctor scheduled for this Friday 8/8. Dad said that after they got back to the hotel that Mom slept from about 2:30 to at least about 5 pm. We had noticed that she has been VERY sleepy since she got out of the ICU. The doctors said that some people are more sensitive to the anesthetics then others and making her more tired than normal. I am hoping soon she will be able to regain some energy to maybe chat a little more with everyone (I'm sure she can't wait!). I am looking forward to seeing them again very soon! :)) Thanks for all your love & care!
They think they'll take Mom's pacemaker wires out today so that's exciting. They are hoping she'll get up and walk a bit more today. She got pretty good rest last night but was still sleepy this morning. She had her first visitors besides Dad & I yesterday so she enjoyed that even though she started falling asleep before they left. I am flying out of Cleveland today but Dad will be here with her until they release her to go. Thanks again for all your prayers and continued support! :)
Mom is doing ok today. Didn't get much sleep last night either as she got an upset stomach. She has been trying to take the least amount of pain medication that may have contributed to her not feeling well last night. Dad and I have been with her all morning. She has been very sleepy and has slept most of the time with the exception of the doctors and nurses that have been in and out of her room frequently. The doctor said they hope to get her last chest tube out this morning as well as a few of the other tubes. Her cardiac rehab therapist came in her room this morning and is hoping to get her up and walking a bit later this afternoon. She did eat a little breakfast this morning between sleeping intermittently. We are hoping that she will be able to get more rest today as she could really use it. We all appreciate your continued thoughts and prayers.
We saw my Mom this morning. She was sitting in a chair next to her hospital bed! They had moved her and she was awake and cheery. :) Much more alert and coherent today. More color to her face as well which was nice to see. She was able to convince the nurse last night to get her some chocolate pudding which she was able to keep down fine. She said she was "starving!" . The doctor came to see her at 6:30am this morning and he thought she was looking really well. He was hopeful that they would be able to get her her own room by mid day today, so we'll see. She said she got some sleep last night but the ICU is a busy place so she didn't get as much as she would have liked. So needless to say, she is very excited about hopefully getting her own room. They don't allow any cell phones on in the ICU, but I'm anticipating that the next post you will see will be coming straight from Mom! ;) She is very excited to be able to communicate with you all soon hopefully! My Dad and I are both very pleased that she is doing as well as she is, we are extremely thankful. Bless you all for all your love, care, support and encouragement for my Mom. We love you all and are grateful for your aiding to lift her spirits at this difficult time. Please continue to keep her in prayer for healing and recovery. Thank you!
Mom is still in the ICU and will be there at least part of the day tomorrow. We got to spend some time with her this evening and she was much more alert and aware. She seemed much more comfortable then when we had visited earlier in the day. She was telling the nurses family stories and laughing which was nice to see. We are also thankful as it reassures us that her memory is still in good condition and still top notch in spite of all the hardship from the surgery this morning. Her surgeon mentioned that he will be making rounds at 6:30 am tomorrow so we plan to be there in the morning to get his feedback on Mom's current state. So far things seem to be going well. We are SO Thankful! :) They were able to do the less intensive surgery, so that is definitely a Praise! :)
The surgery "Went Well!" said her surgeon! YAY!!!
This is Elizabeth, Ginger's daughter. Just wanted to let everyone here know that has been following my Mom's journey that she is doing well after the major part of the surgery this morning! They are currently finishing up the closing procedures of the surgery and told us that we will be able to see my Mom in the ICU in about 2-3 hours. We are THRILLED to say the least! The surgery prep officially began around 6:45 am, we saw her briefly at about 7:30am then the main part of the procedure began about 9:30 am Eastern time. Thank you all for your thoughts, prayers, support and encouragement!!! I know that it has made a World of difference to my Mother. I will keep you posted as best that I can. We are definitely very much looking forward to physically seeing my Mom here in a few hours! Blessings to you all, Liz
Supposed to be sleeping but just wanted to let you all know how indebted I feel to you, for I know that were it not for all of the prayers, the wisdom, advice, and encouragement and the fellowship I have found on this site I would not be sitting here relaxed and wanting to send my best and my love to all of you.
Looks like M and I are going to do it together tomorrow and Mia - so very proud of you! Glad you are past day 29 on your Count Up to 42!
M, I will be thinking of you and praying for you as the two of us do this together tomorrow. May you lean on God for strength and rely upon Him for comfort, for it is there just for the asking.
Special hugs to Terrie for all the help she has given me!
Sleep tight all and hope you are one step closer to the health you seek tomorrow!
Prayers continue to be answered and we are so thankful for all who are continuing to pray. Today my heart cath results were clean coronary arteries! We are thrilled.
Potentially this opens the way for a shorter procedure by the minimally invasive technique. Because of the traumatic brain injury (TBI) I incurred many years ago, the less time on the heart-lung machine and the shorter the time under general anesthesia the lower the risks of the surgery. Both of these are positive for preventing problems with the TBI being provoked by the surgery.
We are thrilled and grateful for all of you who have prayed and gotten us to this point. Tomorrow I go through Pre-Op and Jim and I will meet with various parts of the surgical team, most importantly anesthesia and the surgery team including my heart valve surgeon. By then we should know in much greater detail. If I am unable to fill you in (these past two days have been exhausting although fruitful) I am hoping our daughter Elizabeth will fill in for me.
Jim has woken me up at least three times tonight as I try to write this and continue to fall asleep, so my apologies.
Bless you, Heart Family, each and every one. Many of you have become precious to me, and I think you know how I feel.
A great saying for our Heart Family:
Wisdom comes not from age
But from knowing your own heart. --Anonymous
Sleep well, stay strong, fear not - for true fear comes only from the unknown,, and this site is an incredible gift where people share their knowledge and experiences and remove needless fear. May each of you be closer to the health you seek tomorrow.
With great love to you all!
I just finished speaking with the office that coordinates heart caths. I am scheduled to arrive for admission and registration at 11:30, then head to the Heart Cath desk.
My best guess is that my cath will not start before noon Eastern Daylight Time. (That's 11 for you Midwestern folk, etc.)
I can eat something light in the morning and take my own meds, I must bring a photo ID (they said bringing my twin was not good enough!) and another adult. Good thing Jim is here because I do not know how I would go about finding an adult who would put up with all of this tomorrow were he not here!
Blessings to each of you!
Oh, and Terrie, I have every intention of being a part of the Skype ice cream extravaganza! I have a spoon ready. They will probably have to pry it out of my hand while taking me into the OR, or maybe they will just wait until I am under anesthesia and catch it!
Love you all and am so honored to be a part of this big Heart Family!
This was a smooth day and we stayed on target and relaxed all day:
We (Jim and I) got up early to be just a little ahead of the crowd for my 11 - Yes ELEVEN - tests, exams, registration, appointments, and more. My favorites were the gal in EKG who said she wished all patients were as relaxed as I was, the gals in CT who commented on how patient I was, and Alex at one of the desks, who was in a pink pin striped dress shirt, navy tie and jacket, and handkerchief to match, who had the biggest smile I have seen on anyone that early in the morning! He had a great smile and we passed by several times after checking in with him. I always said "Hi Alex" and he always responded. To him I am "Mrs. French".
Jim was a trooper and carried all kinds of things, his laptop, my loaded with the appropriate papers purse, and a bag with my robe in it. (Patty, I got so many complements on that robe. It was freezing in there and I was glad to have it.)
We managed to leave with a new wristband and just a mark where the IV port had been taped to me most of the day.
SOOOO DAY 28 on the COUNT UP TO 42 is coming to a calm close.
Tomorrow? Heart cath - please pray for all clear, nothing to make the surgery any longer than it has to be!
I am headed over to ice my Achilles' (tendonitis) with the bags of ice Jim has ready for me! Sure glad the second Achilles' brace was acquired. It does make walking easier. We call tonight to get the time for check in (not the time of procedure) for the heart cath tomorrow, then mess with making sure the alarms are set.
Blessings to all of you dear Members of the Heart Family! Currently among other things I have up on the desk a card that reads, "Wisdom comes not from age but from knowing your own heart"! Thought it was a good thought for us, as we certainly know our hearts in ways most other people do not!
Love, hugs, Butterfly kisses, and whatever else you need to allow you to stay calm and as relaxed as possible, remembering that God has you on this ride for a reason, and His reasons are the best.
May each of you get your rest and be healthier tomorrow than you were today!
Would like you to know that my daughter Elizabeth (AKA Liz) is going to do some posting for me while I am in the hospital. You can see her picture in My Photos.
She is leaving her ten month old as of yesterday daughter, Autumn Grace, to be with her dad and I before surgery and will not be back until after I am out of the ICU.
We are indebted to her husband, Jeremiah, his mom Grandma Sharon, and wee little Autumn for taking care of one another so that Elizabeth can spend the time! Love you all so very much! And thanks to Grandpa Mike for "baching" it while Grandma Sharon is away!
We are so blessed that our family has grown into a wonderful loving blend.
Elizabeth and Autumn were here bringing me soup and a small sandwich tonight so we could eat together., enjoy one another, then Elizabeth (and our little Autumn) helped me check and finish packing that friend Jan B started on Tuesday.
Bless you all, Heart Family, and may you be healthier each day and closer to the goal of your journey and Joy.
Know that prayers are being lifted up on your behalf and I am ever so grateful for being a part of you, getting advice and encouragement and information, and sharing the company and fellowship that can only be found in this special place where those who have gone before and those in "process" and those yet to come share, educate, and encourage one another.
This was again a busy day. One of my former neighbors arrived around 9 this morning and the two of us made a major dent in getting clothing rearranged or into the laundry. Bless Jan's heart, she was here till one!
Not long after Terry arrived with some roast beef sandwiches for lunch. What a delight! My now retired PCP and dear friend brought the really snazzy walker that was initially used by her mother. She knows I have vertigo issues just from the head injury and brilliantly thought to loan the walker. It is deluxe with a seat and a basket. If I feel light headed or something, I can just sit down!
I am a major reader, and while I usually have the pile of books I am currently reading (always at least six) on the floor next to my bed, it occurred to me that leaning down there will not be a smooth move after surgery. So I got online a few days ago and ordered a small three shelved folding bookcase. And if came today.
Before Terry arrived, I opened the top of the box the bookcase came in and slid it across the carpet to the middle of the main room. Then I let it down to the floor slowly and plopped down next to it. The case slid out pretty easily, but I realized it would not be smart to try and move it by myself.
I walked down the hallway into the bedroom and realized my current baskets of books were going to make it difficult to bring the bookcase in. Terry came to my rescue and assessed the situation, slid the basket of books out of the way and - something I cannot do because of its weight - vacuumed before even considering bringing the case in. Fantastic!
Then she brought in the bookcase and pulled out the two sides, and bam, bam, bam, the three shelves dropped into place. Terry checked to make sure the air vent could still freely blow air, put the little wooden plugs over the six screw holes, and TA DAH! Bookcase! Then she helped rearrange baskets so I could sit and fill shelves from the baskets. Perfect! It was great to see her and her timing could not have been better.
Now two baskets are empty thanks to the shelves, and I put them to work elsewhere.
Not too long after my friend Stacy called to say she had a cancellation at the end of the day and was I too tired for her to come by. And she brought a yummy dinner with her. Wow, went from a protein shake to a nice lunch and dinner thanks to good friends. With great company to enjoy it with.
Stacy stayed and talked while I was sorting through papers and a variety of things. I have five options at all times - the box that will be stored, things that need to be kept in the house, trash, recycling, and donation. This is the second evening Stacy has been able to come, and her handsome son, (auburn hair, red beard, bright blue eyes and a killer smile) is a drummer with a scholarship to a local community college. He is a great guy. So in the process of the last few days we have equipped him with pencils, highlighters, pens, locks for his back pack, note pads, and a small variety of things that will help him get started and save his mom some money. I actually had no idea the number of things that had fallen off the nightstand and made themselves at home among books and other things.
I continue to get messages from the medical center where I am having my surgery, and tonight was no exception. All patients take a survey so the docs have an idea of baseline in terms of mood, activities of daily living competency, and general physical condition before the patient arrives. So got that taken care of tonight, but there were people here so late that I was realizing I was not going to make some phone calls as I intended.
But it is so great to have people come by, and the house continues to be a surprise each time they come back! Fun!
I am getting a little luxury time in my day tomorrow. I'm going to get my hair trimmed, then later for a much needed massage. I'm starting to think one every six months is not enough for someone with the mobility issues I have, but they are a bit pricey$$$
So wishing you all a great sleep and praying that your day tomorrow will bring you at least one step closer to better health.
No time for e-mail or FB today...but they will be there tomorrow. Hope you all have a day that brings you Joy!