Thanks for showing me how to find people easier after they sign my guestbook. I think you are correct that I carry with me what happened to my son and the last month dealing with this severe diagnosis that turned out to be wrong. We have had so many problems with small town hospitals and this is the final straw. We will no longer go to any hospital in this area and will travel the one hour to a larger one.
The first ECHO looked like it was underwater compared to the second opinion ECHO. I am going to write a letter and get a copy of the actual pictures in order to show them how badly they were done. To diagnose enlarged heart, torn chordae, and aneurysm on a patient who has mild mitral and tricuspid regurgitation makes one think they are a ticking time bomb.
Thanks again for your kind words and taking the time to talk to me.
On August 25, 2010...
Hi Fran. I remember reading in your journal that both of your lungs required removal of the fluid. When they did my first procedure, I was told that there was fluid on the right lung as well, but not as much. Now, yesterday, at my surgeon's office, I was told there was no fluid on the right so I can only hope that the Lasix helped me get rid of that. I'm feeling better today than I have in a couple of weeks so I'm enjoying it & hoping it stays! I hope you are feeling good today too - Joy
On August 23, 2010...
Hi Fran,
I saw your post to Ricki and wanted to let you know that I was told again by the cardioloist again just today that I will now have to premedicate with 2 grams of amoxicillian (or other antibiotic) 1 hour before EVERY dental procedure for the rest of my life, routine dental cleanings included! Please check with your own doctor before your next dental appointment!!
Kellie
On August 21, 2010...
Fran,
I loved your journal entry and your guestbook entry to Kimberly. I wasn't a weepy person before this surgery, but I have cried so much from what I've read on here. I am of Northern European ilk and it's not how we do it. That has changed for me. I can't figure out if it's the surgery or belonging to this site. Maybe both? Maybe just belonging to this site with people I know have my back and know where I've been. I hope I'm invited to the reunion. I will be there :).
I will root for the Celtics this season, even though it goes against my upbringing, because I know you will be happy if they win.
Love from Cali,
Amanda F.
On August 21, 2010...
I forgot to mention in my entry that it was amazing you used the word hope. That word is everywhere in my house. I 'collect' it I guess you would say. There is not a room you go in that you don't see it:) I figured it's the last thing we have when we are feeling there is nothing left.
Have a great weekend!
Kimberly
On August 21, 2010...
Hi Fran. The Lori B. article was in the Funerals and Memorials section of the paper, but was separate from the obituaries, maybe because it was written by a staff member rather than her family. The death notice was separate & very brief. Both appeared just this morning. I saw it first in the paper that we subscribe to (we're some of the few who still read a paper), then went to the site & entered her last name in the search engine.
Feeling better & coughing less after the fluid removal but my cardiologist wants me to go back to my surgeon for further treatment, maybe with steroids. Says the fluid build-up is "recurrent". So, I have an appointment there next Tuesday. I'll detail what I find out in my 5 week update - following your wise advice on evaluating my progress one week at a time.
Hope you are doing well - take care, Joy
On August 20, 2010...
Dear Fran,
What I wrote to Duane applies to you as well . . . you have articulated much of what I have been thinking this week about Lori and Kimberly. I have been at a loss for words all week.
Thank you.
Ricki
On August 20, 2010...
Fran,
Both yours and Duane's note were wonderful. It has been such a sad week, as I feel like I lost a close friend. Even months after my surgery I talk with my family about people on HVJ and what is happening. It was so sad to read of Lori's journey, and the loss of her life this week. I feel the same empathy for what Kimberly is having to live through, and hope her recovery improves.
It is such a funny world that some of us move through this so easily, while others struggle for similar results. I think it is important to continue to encourage and be positive, even as we are in pain for our HVJ family.
Thank you for sharing your thoughts,
Mark
Keller, TX
On August 20, 2010...
Hi Fran
That was beautiful Fran. While we grieve for Lori's loss we must also remember to keep Kimberly in our prayers and thoughts as well. We are all so vulnerable when it comes to our health.
Cheryl, Ontario
On August 20, 2010...
Fran,
Beautifully said....how inspiring to show how Lori's death gave Kimberly a renewed faith to continue on. I hope you know how inspiring you have been to everyone on this site. It is especially needed in this stressful time.
God Bless,
Theresa C.
On August 19, 2010...
Fran,
Wanted to check in with you on this terrible and sad day. I have been going through the past days worrying and praying for Lori, praying for a miracle, and not able to share my pain with anybody but the friends I have on this site. It was so hard to read the last few posts from Lori's family. We have lost one of the good ones.
xxoo,
Amanda
On August 19, 2010...
Hi Fran
Thinking of you this day as we gather to give condolences and prayers for Lori and her family. I am so very sad that this beautiful family is having to endure such grief. Sometimes life just sucks.
Cheryl, Ontario
On August 19, 2010...
Fran,
Just wanted to feel connected to a fellow hvj..I feel so sad for Lori B. and her family. It really drives home how lucky we are. I know prayers can move mountains, but I guess God wanted her home with him. She certainly had lots of people who loved her and prayers from all over the world. She sounded like an amazing person....thanks for listening. If we lived close...we could all gather and pray for the family...but we do not so we will do it together on this site.
God bless,
Theresa C.
On August 19, 2010...
Hi Fran,
I certainly don't feel like posting anything to my journal as I feel like any news of mine is insignificant compared to Lori B's. I'm sick with worry and have been holding a round-the-clock vigil for her. I know you feel the same. I watched her journal entries from the beginning as she was near in age and had mitral valve like me. I hate that we haven't heard anything.
I did want to ask you about a-fib and how you control it. I have suffered from it on occasion but haven't had it since the surgery until today. It lasts for about 20 minutes but my heart races then it skips then it goes back to normal. I do experience great anxiety from it. What is it like for you?
Again, this is minor as my heart and prayers are with Lori.
Amanda
On August 18, 2010...
Hi, Fran--Blessings to you, too. Aren't we the lucky ones! I'm a noodle lady, too and am so amazed at how many ways you can use that simple piece of plastic. Thanks for all your good wishes and they're coming back to you.
Hugs,
Bev
On August 18, 2010...
Hi Fran. Yes, my surgery was at the Austin Heart Hospital where Lori's was. Her surgeon is my surgeon's partner. The two of them have the most experience in their group. It's just unbelievable that this has gone so wrong for her.
"Pinched" is a good way to describe the way my lung felt. It was as if, each time I took a deep breath, I could feel the air going into areas I'd not used before. The procedure was relatively painless. The only pain came from the shots he gave me to deaden the area where he poked the catheter in. I didn't care much for the poke - I felt like it was going to make me deflate or something. Still, I was glad to be able to get a good breath after so it was well worth it.
Hope you continue to feel better & better each day. Take care, Joy
On August 17, 2010...
Congrats Fran! I just love rehab and will be very sad when I reach graduation. But, at the same time, realize that its just another chapter I can put to rest. I'm going to try and continue with the excercise afterwards, as well.
All my best,
Diana
On August 15, 2010...
Fran,
Way to go....so happy for you. Congratulations on your graduation. Thank you for the email address...I will keep in touch and let you know if I come down that way....would love to see you. I did not get a chance to check out the development yet...been without a computer for a little bit....lightening strike...all is well though.
Talk soon,
Theresa C.
On August 15, 2010...
Fran,
Congrats to you on continuing to progress through your recovery so well. For each one of us it is a little bit different, and everyone has a different clock or calendar that we work towards full recovery on. You have done an excellent job of understanding your clock, and keeping the light at the end of this tunnel as your goal.
Keep up the good work in your recovery, and all that you do on HVJ to helop others as well.
Brst regards,
Mark
Keller, TX
On August 14, 2010...
Fran,
Congratulations!!! You are truly an inspiration and I appeciate all your words of encouragement that you posted in my guestbook! Now its time for you to reap the benefits of your new valves and enjoy life to the fullest! Best wishes and take care.
Kellie
On August 14, 2010...
I am so HAPPY to hear that you have finished rehab successfully!!! In about two months you will be on your way on your celebration trip to see the kids. Would love to hear all about it. Love,Shirley
On August 14, 2010...
Hi Fran,
Congrats on the rehab. You're probably ready to be a Laker fan now that you are toned and in shape.
Keep up the good work!
xxoo,
Amanda
On August 14, 2010...
Congratulations, noodle lady! Another milestone. The water aerobics classes here are the most popular of all the classes - kinder to the joints. Thanks for the note in my guestbook. I'm feeling better after just one day of the Lasix so I'm hopeful that will take care of it. Coughing less too. I wondered what my glitch would be & guess I got my answer. Take care & have a nice rest of the weekend - Joy
On August 14, 2010...
Fran, Congratulations!
I hope this doesn't mean you'll stop posting or responding to the journal? Heck you are my biggest fan! I haven't posted much myself lately and I'm am still working on the weight loss, finished my second week of rehab and just finished moving about a quarter dump truck load of topsoil by hand. I wanted to take my new heart valve for a spin. I can't believe what a difference it made.
So here's to you Fran. Best of luck and enjoy life!
Tom Schrage
On August 14, 2010...
Congratulations, Fran. Glad to hear you've "graduated" and doing fine.
Best wishes,
Barbara (from Boston)
On August 14, 2010...
Congratulations Fran! Another accomplishment! Keep up the good work and enjoy your status as a noodle lady. (I used to do water aerobics and I loved it.)
Enjoy your good health!
Ricki
On August 11, 2010...
Hi Fran. It does get somewhat cooler here at night, but it's still too hot for me. I'm a wimp, what can I say? As it gets closer to late Sept, or Oct, it will be great outdoor walking weather. We're fortunate to have that indoor walking track here. Gives me an air conditioned option. Take care, Joy
On August 4, 2010...
Hi Fran. Thanks for sharing your experience - it's reassuring to know I'm not the only one who got so worn out from just a shower. I always appreciate your advice & the time you take to encourage me on. Thanks so much, Joy
On August 3, 2010...
Fran,
Thank you for your kind words...I would love to meet you...You never know as I previously wrote you..my husband is almost ready to retire and we contemplate a possible move to Florida. We have a condo in North Myrtle Beach and I love it there also, but Florida is where my husband always wanted to go. We will see..it really depends where my daughter ends up when she completes her masters degree at the end of this year.
I am keeping up with my exercise at home so far, although not as much as you state we should do. I conditioned myself to go on the treadmill or exercise bike at the same time I had it scheduled at rehab...that way I keep the routine going. It has worked so far. I have inquired about joining Gold's Gym, but I do not know if I want the commitment of joining for a full year. I also use weights a few times a week. Glad you enjoy rehab it was such a great experience for me.
Talk soon,
Theresa C.
On August 3, 2010...
Hi Fran,
Thank you for the post. I was told I had to use the spirometer for 4 times a day, 10 times each time, for 10 days following discharge from the hospital. Of course, if I start feeling congested or winded, I'll pick it back up. I just cannot believe its been 2 weeks ago already... seems like a lifetime ago.
God bless,
Kellie
On August 1, 2010...
Hi Fran,
Just wanted to say what a great picture of you with Duane. You both look great and are lucky to have had the opportunity to meet each other. Hope all is going well with you
Theresa Callanan
On July 31, 2010...
Hi Fran,
Nice pics of you and Duane with your mates. You look fantastic. It must be nice to meet a fellow HVJ in person I imagine. If I'm ever in Florida, I will look you up.
I thought of you yesterday. I had my first cardiac rehab session and it was so wonderful. I was really nervous going in because I do get a lot of PVC's and all I could imagine was them freaking out when they saw the monitor. Well, it didn't happen like that. The nurses weren't impressed and instead were so encouraging telling me how great my vitals were. So you were right, it's going to make such a difference for me.
Hope all is going well in Florida and you are staying cool this summer.
Amanda
On July 29, 2010...
Thanks, Fran. I may get one of those wedges if the no-nap strategy doesn't pan out - thanks for the idea. Sandy from Albuquerque has also recommended a natural sleep aid called NatureMade Sleep that I might try too. What seems to be working the last 2 days is to substitute a relaxation tape for a nap. There's a yoga practice called Yoga Nidra that is essentially a relaxation exercise. It's designed to relax you on one level, then another, then another ..... All the while you are awake but at the end you feel refreshed. I have to say, I don't feel refreshed after naps - I feel groggy. So, anyway, I've been practicing Yoga Nidra for the last 2 days & have slept much better at night. Hope that holds up!
As for the chaffeuring - no complaints. I will be glad to get the approval to drive again though. You're so right about Pete & I'm glad you have one of your own. We are fortunate ladies, aren't we?
I'd seen your suggestion to others to take recovery one week at a time & have taken it to heart. Week to week progress should be more pronounced than day to day. Great advice - thanks!
Take care, Joy
On July 27, 2010...
hi fran,thank you for your words of encoraggement it ment so much to me,i hope you are doing greater as the day goes by,am a little bit scary at times but i think that is normal.again thank you,
On July 26, 2010...
Hi, Fran! Thanks for leaving me a message. I am still down on my weight...and the doctor and nurses don't have any explanation for it. I AM eating...that's the first question they ask. I doubled up on meals...2 breakfasts, 2 dinners, snacks at night...I get up a pound or two and promptly lose the weight right away. Today on my scale (a doctor's scale), I was 97 1/2! I went into the hospital at 104...came out at 104...but have been losing ever since. At first I was concerned, but my doctor says I won't end up on a feeding tube.
Also, another unexplained complication I have is a rapid heart beat. No one, even my doctor, has given me a straight answer as to why I have this. It runs between 80 to over 100 beats per minute, WAY higher than before the operation. I AM concerned about this problem...if the rate doesn't go down soon, I am going to get a second opinion.
Glad to hear you are doing well!! You have been through SO MUCH. Keep up your very positive attitude. SHANNON SMITH
On July 26, 2010...
Hi Fran. Thanks for visiting my guestbook while I was in the hospital. I'm not tech-savy enough to have had a laptop or iPad with me, but I think Pete kept everyone as up to date as he could. He also printed out the posts & brought them to me. Right after I read your last note, I went & got my spirometer & did my 10 rounds. Take care, Joy
On July 22, 2010...
Hello, Fran. It is every bit as hot and muggy here as it is in FL. We usually might have one week where we get a couple of 100 degree days but this year, it is practically every other week. It is hard on us heart patients who are trying to keep our exercise going because it just saps your strength. I do think I was lucky,though,that the crisis time for my condition happened last winter when I would go out and have trouble breathing, but at least I could do it. If it happened now, I would not be able to set foot outside my front door. With my "fixed" heart, it is difficult enough. I need to go get my coumoudin level checked either this week or next, and I just have not been able to make myself go out in this heat to go do it. Well, next week is supposed to be "better"-only the low 90s. The INR has been holding steady since May, so I hope it still is. Your experience, though, shows me that we can never take it for granted. We have to stay on top of it.
I wanted to write you this week to tell you about something very meaningful that has come about since I posted my first journal and you responded so kindly with some advice about coping with the problems I still have and how my friends might see them. You suggested I tell one friend what I was going through, but I found that having said the truth once, it was a lot easier to do again! And you were right that the guilt and anger I was feeling was really my problem, not theirs. I had underestimated them. Nobody was thinking that my continuing issues were my fault! And the person who took care of me after the surgery, even though she is now dealing with a cancer in her family that might make her more stressed out, said that she would be there for me anytime. Another one will be there when she can't, and if neceassary, her parents would open their home to me anytime. I still wish of course that I will be able to be the independent person I always have been, and that this heart will just get its act together, but that is different from the anguish of feeling alone and that this was somehow my fault. I waited until this past Sunday, which was my 48th birthday, when I had a natural opening to broach subjects like this, but I thought about what you said many times during those weeks, and as time went by, I just came to know you were right.
There was one more response I found especially helpful, from Cheryl in Ontario. I love her line, we are not perfect, but we are fixed. I used it over and over when I was talking with my friends. No, I am not perfect. My heart still has its problems, but I am definitely fixed from the situation I was in when this crisis hit. I can work, and I can do what I need to do to take of myself, and if I tire more easily than most people, well I will try to rest more. Besides, in this weather, everyone is pretty much in the same boat with me for a while-nobody has any energy or can do much in 100 degrees!
Thank you, Fran, for all your care and oncern and for your good advice, too. Stay cool, Theresa
On July 21, 2010...
Hi Fran,
Its amazing to me how the body takes care of itself and heal in such a short amount of time. Crazy!!!! I'm feeling stronger each and every day. Seems like once you go over that hump, then its all good after that. I'm still experiencing a good amount of discomfort along the top of my incision. Doctor said it could be a while before that goes away. Really had a good amount last night, but I think between the weather here, raining off and on, and the moving around at rehab, has things a bit more tender. But, all in all, I'm feeling terrific. I'm finding I can go up and down stairs with little effort now and no more out of breath or chest pain or feeling faint. Very exciting! Its been a while since I felt like this and I'm just in awe with the whole process. Got to love modern medicine.
Diana
On July 20, 2010...
Hi Fran,
My sister said that I can stay as long as I need to. She lives alone and will be wonderful to me. What you said about the walking around convinced my husband that the RV would not work for recovery. I am grateful for all your information. I can't wait to meet Dr. Gillinov.
On July 19, 2010...
Hello Fran -
First of all I could kiss you for saying I don't look that big. Even though the camera adds ten pounds I AM that big and then some. I came out of the hospital at 365 pounds. Think of tree trunk when it comes to my build - I am average height by most standards (5" 9") but BIG I am.
The good news is I am down to 345.5 this morning and continue to maintain a 1200 calorie per day diet. My immediate goal is to get back to what I weighed in High School and then evaluate my situation.
Thanks for your support.
Tommy
On July 18, 2010...
Thanks for the quick answers. It is my mitral valve and tricuspid (minor) and I have pulmonary hypertension. The reason I wanted to know about the drive and steps is because my husband and I stay in an RV for 5-1/2 months in Clinton, Ohion. It is roomy but it has steps inside to the bathroom (5th wheel) and steps to get outside. My sister wants me to stay with her which is what I want, but my husband is fussing saying I don't want him to take care of me after the surgery. I told him it was more about having no steps (she has none)and a place to walk which the RV does not have. So any info you have which will convince him would be greatly appreciated. Linda Stah
On July 18, 2010...
Hi Fran,
Glad to hear you are doing great! I hope you don't mind if I pick your brain for a while. SInce you have the same doctor as I, I thought you could tell me where your husband stayed while you were in the hospital. Also, are you able to climb stairs when you first get out of the hospital; how far can you walk at first; how long after your discharge before you were able to ride in a car for any length of time (over 1 hour).
Thanks for the info. Linda Stahl
On July 18, 2010...
Dear Fran,
Thank you for the words of encouragement and support. Unfortunately I will not have anyone to post for me while I am in the hospital. I will update everyone here as soon as I am able.
I am so glad to hear that things are progressing so nicely for you in your recovery. You are a remarkable person and I am so glad to have met you through this site.
Take care,
Kellie (MD)
On July 16, 2010...
Hi Fran - thanks for the note. Yes, not flying to Cleveland will make for an easier commute. The hospital is about 35 miles from our house. Pete will be able to go home daily which will, I think, be easier on him too. When he was in for some surgery a several years ago, I went home in the evenings. That first evening, I was soooo tired. I don't think anything could have awakened me. So, I expect it will be the same for him that first night. Thanks again for the kind words & support. Take care, Joy
On July 14, 2010...
Fran,
I just wanted to say hi...hope all is going well. My in-laws live in Florida, but come up to NJ for the summer to get away from the humidity and visit family. My husband wants to retire to Florida, and we are at the point where we will be making big decisions in the next year. I know it is crazy, but I would actually miss the seasons. Crazy because when we have a major snowstorm...I like everyone else am wishing for warm weather. We are having a heat wave in NJ this summer and were on water restrictions until this week where an odd/even system goes into effect. All the lawns are brown from lack of rain. In fact, we finally got rain yesterday. Glad to hear you are enjoying rehab and things are so much better for you.
Theresa C.
Oh and by the way..you are right I was the one having dinner in Nyc at the start of my journal entries!
On July 13, 2010...
Hi Fran,
Thanks so much for checking in with me. Glad to hear you're doing well with the cardio rehab and are feeling better and stronger all the time.
I'm doing really well, although I must confess that I've been kind of a slacker with my cardio rehab. My goal is to go there 3 times a week, but I seem to be averaging around 2 times per week. If I was a good patient who stuck with the regimen I would be finished with it by now. Oh well...I'm hanging in there, and I really do feel the positive results of the cardio workout, in terms of energy, strength and endurance.
The irregular heartbeats are still with me and maybe they always will be. My cardiologist said I am not in a-fib, but I have some crazy pvc's going on. The docs and nurses say they're not worried about my irregular beats at this point.
Still getting used to Coumadin -- my INR seems to have stabilized (3.3 my last reading). I have not purchased one of the home monitoring machines yet. I was told by the nurse at the Coumadin clinic that they run around $3,000 in price, unless my insurance picks up the cost. I haven't yet looked into whether my plan would cover all or part of the costs. I think I've heard that Medicare would pay for the machine, but I won't be eligible for that for a couple of more years. So, for now I'll keep going to the lab every couple of weeks or so.
Overall, I feel much better physically since my surgery -- Didn't realize how much my condition was sapping my energy! Emotionally, I'm getting over feeling fragile. I don't really know how to explain it, except that I'm still getting used to life after heart surgery, and there are ups and downs. But I feel incredibly lucky to be cared about by so many people, including you, dear Fran!
We'll keep on tickin',
Susan
On July 13, 2010...
Fran,
Thanks for the post on my Guestbook. Yeah, there's basically been no update. I go in for my next echo and cardiologist appt in Nov. I really don't have any symptoms, I feel as good as I ever have. My workouts are still the same, if not even better. I'm trying to mentally prepare myself for surgery, especially if the doctors think I need it next year. A lot of people in their journals say that it is not as bad as they thought it would be. I've never had surgery before, so I really have no clue what my pain tolerance is or how I will respond physically and mentally. There's just some anxiety with trying to imagine what it will be like waking up and the first couple weeks being completely different than what I'm used to. I think I'm most worried about that breathing tube. Thanks for checking in with me. I'm sure I'll post in November for sure.
Patrick in STL
On July 9, 2010...
Fran,
Just had to write you a quick note and thank you for all your support while anticipating my son, Danny's, surgery. You are right; he is doing better than I could ever have anticipated. I am so grateful. I'm so appreciative for all the good advice and support I have received from everyone on this site. I'm so glad to hear you continue to improve weekly. My prayers are with you and your family for your continued good health. Mary James
On July 9, 2010...
Good Morning Fran - The Man Cave Sign sign is about 2 inches high and 18 inches long. I'll take a picture of it and add it to my photo section after I mount it above the doorway.
Ah yes - walking and the heat. Fortunately we own property behind our house and I've been walking in our back field. I'm supposed to be walking 3 times per day 15 minutes each time. So depending on the position of the sun I'm walking in the shade of our trees. It's almost a nature walk. Early morning and after sunset are good times - it is the mid-day walk that is the most intense. A break in the weather with thunder storms is predicted today so that will help.
Thanks for keeping up with my rantings.
Tom Schrage
On July 8, 2010...
Hi Fran,
Thanks for clearing that up - sorry, if I seem to have upset you in some way - nothing like that was intended!...
Glad to hear about your constant progress and wishing you only the Best!
The first ECHO looked like it was underwater compared to the second opinion ECHO. I am going to write a letter and get a copy of the actual pictures in order to show them how badly they were done. To diagnose enlarged heart, torn chordae, and aneurysm on a patient who has mild mitral and tricuspid regurgitation makes one think they are a ticking time bomb.
Thanks again for your kind words and taking the time to talk to me.