Hi to everyone. Although Richard passed his 1 year anniversary as others in the same timeframe, I am going to try and not write in Richard's journal about it and how it is going for him --- he really should be the one to do that, and I think he will - it has just been a crazy month for him and I am sure he will write in it soon.
I am really writing in response to responses from our recent trip to Florida and our visit with Duane and Peggy. I read all of Duane's latest journal and about our trip to see them and it was so great to read it and see the picture of the 4 of us and although we knew and heard alot about what was going on with him when we met him that Thursday night (he had just found out himself only the weekend before) - it is something to see it all in writing. (By the way, It is nice to see Duane has not lost his lengthy novel approach for his wonderful gift of "well-written verbage" and ability to captivate us all (ha-ha)).
We saw wondeful pictures of his children and grandchildren (he loves photography as evidenced by the great picture he took of the 4 of us - (again ha-ha). We had a delightful time and felt as comfortable as if we had known them for years, thanks to Peggy and her great cooking and easy going nature. This heart valve journal is amazing the way it brings people together, isn't it! Dinner was great and the homemade bread and berry pie for dessert were pretty special for a Thursday night after working all day.
I can't say enough about our visit with them. AND it was so nice to read the email that Richard got (he called me in his office this evening when I got home from work to let me see his email from Duane and Penny and Cheryl and Theresa and Fran - at least those are the ones I remember).
I have to confess that life gets busy and consumes me and I tend not to look as much as Richard does at all the journals but when I do I am always so blown away by all of you and all that you share and have been through and frankly for some of you, continue to go through. I know a group all like Richard and Duane are in that one-yearish timeframe and I have come to realize all over again that a year is not that long when it comes to something like this --- it takes a lot of time and it is for some, not without some setbacks and further issues, but it is still an "amazing journey" as I believe Theresa so eloquently put it and in spite of her denying any words of inspiration - she was! Thanks for the emails, I enjoyed them 100% and I know that the trip to meet Duane and Peggy was a good catalyst (we almost got to meet Fran, but she had company and looks like Cheryl was in the area but on short time - next time). Hey,one of these days a group of us could actually meet somewhere between Scotland/Canada/ME/FL - maybe, who knows! All of you all would be welcome to stop by to visit us in ME (the vacationland). Can you even imagine the image of comparing scars (Richard and Duane did).
Love Susan and Richard or a.k.a. Richard's wife, Susan
I thought it was time to report in. A warm and heartfelt hello to our h.v.j friends! I'm not a wordsmith - I'm a carpenter, but I want to send our thoughts and prayers to Lori's family. Susan and I moved Austin up on our too see list and will be seeking out Lori's favorite place to say a prayer for her and her family.
All is well here. I saw my pacemaker expert last Thursday and the results say that I haven’t used the pacemaker since Feb 9th I'm running 100% on my own. The valve job feels good so far? Ever so often something feels off and the brain starts imagining the worst. I believe it was John Lennon said "I've lived through a 1000 tragedies of which a few came true" Last week I had a problem with my vision that I believe some of my fellow h.v.j friends had also. I'll be doing the specialist, neurologist, carotid ultrasound check for clots? The Doctors are still adjusting my meds? They cut my beta blocker from 100 to 50 and added 10 of an ace inhibitor. Then last week my primary took me off the ace because I've been having trouble sleeping since I've been on it. Now we need to watch the blood pressure a little closer. I've also got cleared to go back to work at 100% If there was 100% of work to do. Jobs are coming in just a little slow. But I feel stronger now than before the surgery and can do everything so much easier. Susan and I went to DC for the weekend (with about 500,000 of our close friends!) We walked for miles, went to the museums, china town, Lincoln memorial, and all the other touristy things to do! We even had a race up the subway stairs. I won’t say who won but the foot massage was nice! I try to read the journals as much as possible. To all you h.v.j friends keep God in your heart and keep on ticking and keep in touch.
Richard from Maine
Richard is doing pretty well and continues to improve and continues to have his issues - like most everyone else in this same boat!
He has been having trouble with his eyesight - his focusing in particular and that funny feeling when you feel you can't see right. His head is still definitely not right - and he does still suffer with some memory loss or not being able to focus attention - which is not like him, but hopefully that is getting better as he gets busier. He does have an appointment to see his eye doctor, as it has been very disconcerting to him.
He also has had trouble with the medicaiton they have him on as he has tried to get his cardio doctor to take him off of it. He has a thing about medications and would love to be med free - I think mentally he believes after all he went through with a new cow's valve, a pacemaker - he shouldn't need anything. But from reading so many other journals, that just isn't always the case. The doctor did cut down on his pill but when he did his blood pressure went up when they took it at cardio rehab. Then his cardio doctor put him on another pill. He wasn't happy. His regular doctor told him his blood pressure looked good and if he didn't want to start the new extra pill yet - to wait and see. As Duane said -- isn't it great when doctors don't agree.
Now for the amusing part of how well he is doing! Richard is not a runner and up until yesterday I would have wagered that he never will be. He took his 2 mile walk yesterday morning and then surprised me by taking another 2 mile walk with me last night. Although it is rare that he has ever taken 2 walks in a day (until this operation he had to be hogg-tied to walk), but that isn't the amusing part really. It is that he told me when he took his walk that morning that he actually tried to jog a little. That might not be funny for the average person but Richard has never been a jogger and it was so cute that he tried. I know it sounds like I am making fun of his efforts, well I am, but I am so thrilled he is working hard and is really making efforts at life changes. He went to cardio-rehab this morning and I just talked to him and he said he only did 2 1/2 miles on the treadmill because I "wore him out yesterday." (ha-ha).
Thanks to all who read the journals and continue to inspire with all their updates and heartfelt words.
Richard's Wife, Susan
Hi, to anyone still checking on Richard. I hear some are still checking to see how he is doing. He is heading towards 4 months had another check-up with his cardio doctor last week and although Richard had questions that he feels there aren't enough answers for still, the doctor thought he was doing well. I think Richard feels he learns more about what is or isn't quite right yet from the heart valve journals more than he does the doctors. He still advidly reads them -like when he recently told me he learned about "pump heads" from the journals. He realizes that is what he is OR is it what he has." His memory has not been as sharp - he will forget what he is saying in mid sentence and his mind not "quite where it should be." I will see him kind of staring - which is something he has never done (there's a difference between being deep in thought and just looking blank). He has learned that this can be part of all the recovery process. He IS getting stronger and doing more though every day and does push himself. The doctor has said he can lift up to 40-50 pounds, but must be careful and he will re-evaluate in a couple of months and if he continues to do well he will take him off all restrictions. Obviously he is still healing - especially for heavy physical work.
Today it is very hot up here in the northeast - unusual for this time of the year. Richard said his scare felt itchy and kind of hurting from the heat - still a ways to go on that healing too!
All and all he continues to improve and faithfully doing his rehab and getting "walks" in at home on his own(grat accomplishment for my non-walker type husband). He is pretty determined to honor his health and well-being, that's for sure!
Hope everyone else is doing fine.
Oh yes, he did get a gift recently of the "mended heart bear" with the zipper. It is soo cute and soft and he was showing it off! He said it was OK to have a teddy bear - that Radar in Mash had one (ha-ha).
Richard's wife Susan
Hey everyone it has been a while since I wrote in Richard's journal. I just get busy/tired from the week's work as Richard continues to get better. He said he is going to update once he has his next check up on May 11 with his cardio doctor which will be a solid 3 months. He saw his pacemaker doctor last Thursday and he said that it looked good and that he had not used the pacemaker at all. He is doing his cardio rehab and doing some walking up and down our hilly road which is great. He saw a nutritionist today - so he has been busy. He continues to improve, truly he does, but he still has his days like Sunday through Tuesday of this week when he just hasn't been feeling "up to par" as he puts it - some pains and funny feelings and kind of tired - but today said he feels pretty good. He thinks the not feeling up to par is just his body telling him that he "isn't there yet" and it it going to take time! All and all he is doing great and starting to look stronger. He struggles a little with what he can and can't do and should and shouldn't do, I think - why just ast week, for instance, he wanted to go to CT for the day by himself and then thought better of it because he was a little anxious about making that trip alone - this week he feels more confident about it and is going to go down tomorrow. So you see the progress is often a little up and down, but mostly moving towards the positive for him. I am thankful and happy every day to see progress and appreciate him being around and it is funny how we find such small reasons to have a "toast" and celebrate the little things. On a daily basis I am asked how he is doing and it is great to say that he gets better every day.
Hope everyone else is doing well. I plan to check out some journals myself instead of getting the highlights from Richard as he tells me how everyone is doing.
Richard's Wife, Susan
Hi everyone! I want to thank all of you for the support and prayers . Also a big thanks to Adam for this site and for his book. Susan and I found it to be a great souce of infomation and feed back not to mention the new friends we made .I started rehab last week. Mostly doing cardio (tread mill, steps and so on) I't may be a couple more weeks before I can start on weights! I lost a lot of upper body strength. I feel its going well.I still get some aches and pains mostly when i push myself to hard or do something stupid!The loss or lack of memory is still an issue.Eyesight has been check and has'nt changed in the last year but it seems different to me.I've been trying to keep up with everyones jounals but as you all know as we get closer to a normal routine time is an issue.I'm still waiting for my sense of humor to come back fully. It's been tested a couple of times! I've only been thrown out of one store so far!Who does'nt have a sense of humor? ( the store clerk?) Susan wont take me shopping anymore.I think she lost her sense of humor.It was funny when we got back to the car.I wish all the new hvj folks the best and our prayers are with you all.And for all rest of ya as Adam says KEEP ON TICKING and may God bless. Richard
Hi everyone,
Nice to see journals still going strong. I know the "old timers" who are on the mend are getting busier getting life back to some form of normalcy while new comers are engrossed in what is to come and gleaning what information they can and meeting new people. Fabulous place to get to do that. People often say how difficult it must be not to have anyone for Richard to talk to or know what to expect and I let them know of this grat journal group.
Anyway, Richard continues to improve. His pacdemaker seems to be doing Ok. He did actually walk on our road a little the last couple of days - which he had been avoiding becuse it is quite a bit of uphill type walking. He did OK!
There are little things like - suddently his incision has been bothering him - seems like it hurts him more now than it did the first 6 weeks - I am still assuming it is the chest healing and the bones mending, pulling, pushing etc., that makes him feel the actual incision more. Anyone else have any such reactions regarding incision?
Also, I find his concentration levels or attention span, memory thought process seems to still be suffeirng a little. He will sometimes not remember a thought to finish what he was saying o rseems a little distant or edgy. Again, I say his sense of humor is coming back but certainly not there completely there yet. He is a funny easy going guy but maybe just the operation/anesthia/trauma, if you will, and not being able to work yet and certainly like all of us the shape of the world, economy, housing market, etc., can make one anxious these days! So with all you heart valvers have to go through -life itself gets in the way as well in the recovery process. Still all and all - Spring is here in mixed forms here in New England 70 one day and snow like yeserday morning the next!
Richard continues to improve and will go for his first "cardio interview" next week to see what kind of a program they want to get him on. I think that will help. I have heard from people all over the area that where he is going in Portsmouth, NH is a fabulous place to go.
Nice to keeping hearing form everyone and I hope to catch up on some journal entries today.
Richard's wife, Susan
Happy St. Paddy's Day. Hope all you heart valve patients are behaving yourself today!
Richard continues to improve. Saw his local pacemaker person this week for the first time. She did tell him something I thought a little strange though. She said one of his leads was not the way it usually is. She said normally when you first get the pacemaker that the resistence (the number is higher and then gets lower) but his seemed to be gettng higher and she would check it again next month, although she didn't seem too concerned. Whatever the heck that all means. I swear the darn pacemaker seems to be more of a problem than the entire Mitral Valve surgery!
Richard has not had much energy at all the last 3 or four days (maybe it is the time change). He didn't walk yesterday but he did walk today and he met an "old friend" for lunch. Nice to have friends that still think enough of you after so many years!
Although he knows he is not up to it yet, he wants to work and as the weather gets better it will be hard to keep him from working. He still has his ups and downs (as have many others that I read in their journals) but one day at a time getting better!
Richard's wife, Susan
Richard had his appointment today with his cardiologist and he no longer has to be on the "coumadin." That is such a plus in his recovery process. We had a barrage of questions for him (as Richard was still not "free from doubt and concern" enough from the answers given by his cardio surgeon or pacemaker doctor in Boston).
Again, Richard's main concern is that he doesn't know how he is "supposed to feel" and no one has really ever explained it to his satisfaction. The cardio doctor did not really respond to that and after asking a second time the doctor finally said "you are supposed to feel like you have just gone through major surgery." He told himt hat his ECHO looked good, his heart and lungs sounded good with his stethescope, his report from the pacemaker doctor in Boston looked good. Richard said he still felt funny in his heart sometimes - like it was beating high in his chest almost into his throat and he pointed the various sore and somewhat painful areas. The doctor really thinks most of it is "musculator" and will take time to get better. Boy, haven't you all heard "time" is so often the key here! Richard said he still felt like there were "skips" and doctor said he may always feel some skips (or for qhite a while, anyway). He thought like the surgeon in Boston that Richard worried too much and that it was normal to have some good days and some bad days and he needed time. I brought up that he had mentioned to us that sometimes it has taken people up to a year to feel completely back to normal and that since then we had heard others confirm it through the journals. Although that seems daunting in a way to think that it could take that long, in some ways it at least can take your mind off of expecting to "jump right back into everything" and accept just patiently letting things get better until you just aren't thinking about it! I know that he is getting better, but I also realize more than ever how big and traumatic this really was on him I know so many can relate). I repeat myself in saying again that being in construction he is not a whiner or baby normally - he has had some pretty bad bangs, etc, and never complained. However for anyone this is such a totally new and different and invasive major surgery experience - absolutely filled with what I am going to call, "intense vulnerability." And although I don't think eveyrone fits the mold - I guess depending on what you went through, etc., it is traumatic and I think the worry and sometimes feeling anxious because you don't know what is going on or what to expect; some of the bouts of depression that Adam's book mentions and wondering if you'll ever be the same are pretty normal and can't be denied in this life changing experience.
OHHH, here I go again. I truly intended to be brief with this good news of no coumadin. I have already been "justly chastised" by our very good friend, Dr. Boynton for "talking too much." I stuttered and told him "I just can't help it" and then quickly threw Duane in as being "far worse" (ha-ha).
I am going to force myself to stop now, but will write some mush soon, as
my heart is overwhelmed with love for life and Richard and everyone right now. (see how this can all affect one)?
Thanks for keeping tabs on Richard all!
Richard's wife, Susan
It has been a few days so I am betting some of you have been nervous as to how I did getting the patient into Boston! We made it in - through the heavy traffic and snowy/sleety/rainy weather just fine with no incidents, --- well the only incident was Richard really. It started out with Richard getting right into the front seat as opposed to the assigned back seat. I gave him "the look" and he smugly indicated to me that the doctor was likely going to tell him that he could drive so he thought he would get started by sitting up front in the passenger seat on the way to Boston. I said as long as you have that heart pillow between you and the seatbelt - OK. Funny thing - we get close to Boston and the traffic is bumber to bumper with cars "right there" side by side you - close enough to look right in at you. I see Richard discretely slip the pillow out and put it on the floor (obviously he doesn't want people to see him with a big red heart valve pillow). I once again give him "the look." I proceed to explain that if the pillow doesn't go back up to his chest that I would immediately pull over to the side of the road. The pillow instantly went back up. Whew, I was glad, I did not know how I was going to make that idle threat into a promise and get across 3 lanes of traffic to pull over!! I must say he was the only incident (ha-ha).
He was a little disappointed in the surgeon's visit. The surgeon is a man of few words. He asked how he was feeling and he told him that for the last few days his blood pressure was up (he said it was probably because he was coming in to see him) and when Richard told him
he had not been feeling well, chest hurting, etc.,he just kind of blew it off
and just kept saying he looks like a million bucks. He did tell him that it is normal to "worry too much" and he was likely doing that - as things were "still healing" and there would come a point where he would not even think about it too much. He thought the report looked good - although he did imply again, things were still healing and not back to where they should be yet, but he was getting there. Surgeon said he thought he would be able to get off the coumadin soon - as that the reason for the cow's valve so he wouldn't have to be on it and that he would talk to Richard's cardio doctor in Portsmouth and tell him how he wanted him to be tapered off of it -- let's hope the cardio doctor agrees. He said he could drive, but only "locally" for now as he still needed more time for that incision/chest to heal. He reiterated that because of his profession of construction that he absolutely could not lift, push or pull anything more than 10 pounds until about the 1st of May. He asked if there were any more questions or concerns and Richard said yes there was a big one (he was going to ask about the medications) and the doctor said, Oh sex -Richard interrupted him and said, no
sorry I couldn't wait for you on that one, can you blame me and the doctor looked at me and said no --- Oh boy!! Men.
Anyway, we had lots to celebrate and later
celebrated at a nice restaurant and had about 6 special toasts (he had diet coke, I had a small glass of wine - yes and I did fine driving home). We started the toasts with a toast for life, my birthday, our wedding anniversary, possible sellilng of a house he has had for sale quite a while, his being alive and whatever happens next in our lives!! Was a great day and a wonderful morale booster for us both.
I worked Thurs and Friday and actually was quite tired with being back to the normal routine and Richard took it easy and again, even on Friday felt kind of lousy once again with his chest - new aches and pains, but he did go walking today to the mall.
Great weather here in ME, by the way today.
Thanks to everyone still paying Richard some attention.
Richard's wife Susan
Just thought I would update. Sgt. Susan went back to work on Monday after about 5 weeks. It went well - with all my co-workers asking about Richard and talking all about it with them - they're concern was appreciated. The day went quickly. Richard called me several times and seemed fine. However, when I got home he told me he had not felt all that great all day and he was lonely. I felt kind of bad about that. He continued to not feel that well all evening and this morning was still not feeling well with a headache and his chest bothering him and feeling like his heart rate might not be right (he says he doesn't know how he is supposed to feel to know what is normal and what isn't). His blood pressure was the highest it has been since he has been home from the hospital too. I was ready to have him call his cardiologist to get in there immediately to see him but he wanted to wait. He wanted to go to the mall and get his walk in and he had a light lunch and seems to be feeling better - resting now.
We go into Boston tomorrow (yep, me driving Ms. Daisy into Boston traffic - rush hour at that)! Maybe his blood pressure is up just in anticipation of that alone (ha-ha). He is hoping that the cardio surgeon will give a great post-op assessment, will say he can drive and will give him an idea of how long (or better yet, how short) he will have to remain on coumadin.
That is about it for now. Thanks for your journal entries checking up on him!
Richard's wife, Susan
Hi Everyone,
Well first of all I have to say that ole' sarge didn't do very well getting Richard out walking at all last weekend. On Saturday a good friend Sharon came to visit and brought him dessert and good cheer, by the time she left he was too tired to go to the mall to walk. Sunday our son came for most of the day and again he was too tired to do anything, but he did try to just walk in the driveway but the cold windy air was too much for him. I just don't think he was up to it this weekend even with the lofty goals I had set for him. Monday we did go to the mall for his walk and he was tired and indicating his chest was sore, etc., when we got home.
I said we would get up and get out early this morning before the weather got bad and sure enough this morning he got up and was raring to go after breakfast. We went upstairs and he was to get in the shower right after me and when I got out of the shower, he was fast asleep! I guess he still really needs the rest. We did still go to the mall and he had a good walk and is resting now.
He has had a lot of phone calls and cards and I think he is feeling pretty special these days, although I have always thought he was. I must say that I am getting a little concerned that he is getting to like being chauffeured around as I heard him commenting to someone about it on the phone today - It is not bad enough that I am not only being touted as a sargent but now I have a chauffeur title, I also get to dry his back -- oops! never mind that (ha-ha).
I will comment that everyone who has seen him indicates that he still has that "grey" look which comparatively speaking from what I saw in the hospital he looks wonderful, but I guess they are right. Although I see from here on out nothing but it getting better each day. I know it will take a few more months and he is finally realizing that too and has even said that he has read from other heart valve patients and others that it can take up to a year before one is 100% back to normal - so at least he is aware, but he is strong so I know with lots of hard work like cardio rehab, lifestyle changes, etc., he will improve rapidly - can't wait until he can get some warm sun on that face! - you Floridians, like Duane, have an extra recovery bonus of that warm sun.
PS Richard continues to be appreciative and enjoy all of the journal sign-ins to his guestbook and reads them all! He also continues to really find it helpful, comforting and full of friendly warmth to read everyone else's journals as well.
Richard's wife, Susan
Just an update. First of all, Richard had a pretty bad day on Thursday, he did little more than sit in his chair and lay on the couch almost all day saying that he was feeling pains on the right side of his chest and he looked tired and drawn.
We went to Boston yesterday, Friday, and although I was concerned because he had not felt good the day before, he did well. Even with me driving. If that wasn't enough to get Richard's "heart rate up" nothing is! I did OK getting him there and back in one piece, however.
He saw his pacemaker doctor and he did the tests and took an EKG, etc. One of the tests was pretty strange as he does something with just one of the leads(wires) and not the other one and he told Richard he would feel it - and he did! He said he did not like the feeling - it was like half of his heart beating and not the other half (can't imagine). Doctor said he didn't have to like it because he wouldn't be feeling that all the time and kind of laughed in an effort to reassure him. The tests all went well. He said he was not using the pacemaker right now at all - that it was all his own doing. He said the electrical connections were "still coming back" and it would still take some more time, but it was encouraging because he felt they seemed like they were likely to all come back. He had not had an episode of the A Fib since Feb 9th (as they can do a history back) which he thought was a positive sign, but he said he still could have the problem. He wants him to stay on the coumadin for now for that reason as well as the electrical part of it and he still has the AV block, but feels that is getting better too. He still cannot drive and must still take it easy lifting his arms or anything, for that matter. They still don't know why it happened, but it did. All and all it was a good appointment with him doing well with the pacemaker itself - just more time for the electrical part.
Thursday there were no walks and Friday, due to the Boston trip, there were no walks, however, today I am pushing for him to get a good walk at the mall - yep Sgt. Susan has given her orders, let's hope they are obeyed, although I don't know what I can do if they aren't - I can't even put him on KP duty (ha-ha).
Richard's wife, Susan
PS Richard has been reading the journals and sees others are having such similar problems or reactions, if you will - like not feeling good the same day as him (Duane) with the same issues, etc. It is helpful to know and hear from other HV people and hear the encouraging parts as well.
Hi everyone,
Well, I am taking a moment to look at Richard's responses and as I see my name mentioned in military style several times - ATTEN-HUH!
I thought I would reply. Things are going pretty well and he looks wonderful and not so wonderful all at the same time (if that is possible) and yes, I am trying to make sure Richard does what he is supposed to do "slowly, but surely." It is difficult with a guy like him who is used to being up and "working physically hard." He wants to be better/well "yesterday." I am sure the same sentiments of all his "heart valve buddies."
He truly still has his good days and bad days, but let's face it, he has really only been out of the hospital for a week and a half and all and all it is going well, it just takes time.
I think once he sees the pacemaker doctor and cardio surgeon and finds out what is going on with the pacemaker and what it is really accomplishing and what it isn't - for instance, does he still have the Atrial Fibrilation (A Fib) and how is that really going to affect things. He was advised by his cardio surgeon in the first place to have a cow's valve replacement as he considered him not a good candidate for the mechanical valve (although it would likely last forever) because he would have to be on coumadin the rest of his life and his line of work/bleeding problems were a severe determent. The cow's valve likely won't last forever and now it is possible due to the A Fib he could have to stay on the coumadin forever -- if it doesn't resolve it self, which it very well still may --- we don't know yet as they say he is actually still healing and still has a little fluid around his lungs, etc. Hopefully we will learn more on Friday. It would just be a jip to end up on the coumadin when he got the tissue valve instead of the mechanical one. I know, I know - the alternative that I was so scared of in the hospital is so much worse. He is just patiently waiting to see what happens and what they tell him, bless his heart!
Anyway, I am thanking everyone for continued support, these journal entires are golden.
Thanks,
Richard's wife, Susan
First I would like to thank everyone for their support.It was and is still very comforting to the two of us. I have to say I'm on my way back. Susan keeps reminding me that its only been two weeks + since the surgery and one week since the pacemaker. The pain level is minimal only taking tylenol once sometimes twice a day. I stopped all pain meds the day of my pacemaker install! My cadioligist did an echo cadio gram and said my post op pressure is 6 compaired to 54 two months pre surgery. Took a walk in the driveway (approximately 700ft off the road) did that 3 times not used to the cold! We made the trip to the mall the next day. Walked the mall twice felt good. Sargent Susan is keeping me in check.I know I'd be doing more then I should. I'm ready to start driving etc. Sitting in the back seat of the car is all new territory for me. I could get used to being Ms.Daisy?All things considerd I'm doing and feeling great.And almost ready for the hills of San Francisco. Untill the next blog Thank you all Richard
Richard is doing pretty good, but as they say he will have good days and bad ones it proves to be true. Saturday when he came home I know he was on an adrenelin high to be home. Sunday he did not feel well at all, Monday so so. Today not too bad although his voice is so raspy still and I know he gets tired easily.
The doctor appointments have begun. One this afternoon, one on Thursday, two the week after that and two to Boston towards end on month and the first of March!
Emotionally and physically continue to be the name of the game - and not just him - that sweet wonderful loving man just now had flowers delivered to "me." I thought they were for him, of course, as he got some from the same place yesterday. Well, I just cried and cried and laughed too and we hugged and hugged! The card was priceless and I have a cute little teddy bear with it to keep long after the flowers are gone. Oh, no wonder I am still so crazy about him after all these years! He is worth it all and this is what life is all about. We are blessed.
Thank you again for your continued love and support - there are no words to epxress.
Richard's wife, Susan
Well, guess who finally decided to get home! We got home last night around 5:00. I had to go back out & get prescriptions for him (hated to leave hm for a moment, but his mom and sister were here).
I am sorry I haven't written because I know all the wonderful concerned family, friends and journal central pals have been checking, because a friend told me so and said "you need to at least let everyone know he is home - they have been asking through the journal." Sorry - it was so exciting and scary and exhausting to get home and we are both just so emotionally and physically spent, if you will, that I am just taking the opportunity now. All the heart valve recipients know how emotionally and physically draining it is.
He slept in his recliner last night and me on the couch because he was too nervous to sleep in bed. Tonight the attempt up the stairs & his own bed will be made.
I just want all to know how much we have appreciated your thoughts, prayers and concern - It all made a huge difference.
I hope all the valve/heart folks in recovery are doing fine! I know Richard can't wait to get online to see all the tremendous guestbook entries.
Please know that if you don't hear from me for a few days it is only because I will likely be taking a a break away from the journal as we are both pretty tired and now my attention has to be as me the caregiver in place of the brillant nurses/doctors & lack of machines to guide me -only a thermometer and direction on time when to give pills, take care of his food, watch pain level, etc., along with various other duties - so it is time for me to take on my labor of love.
Life Is Good & there is no place like home.
Ciao for now!
Richard's New Nurse,Susan
No pun intended.
Team of doctors came in this morning about 7:30 (I was showered up and dressed by 6:00am).
The doctors said things looked good and they thought he could go home tomorrow. She said do you want to go home tomorrow -he said he thought he was going home today and she said that his heart (pacemaker) was still adjusting (he had some heart palpitations during the night) and they still needed to get the blood levels (something like that) with the coumadin and betablocker they were giving him leveled out. She said after the bloodwork comes back they can take a look and it is always possible he can leave much later today. But it does look more like tomorrow. I have personally run out of clean clothes. However, they do keep supplying Richard with stylish nice clean johnies. He is mildly disappointed but prefers to be 100% cleared. We are adjusting to our new home. Everyone has been bending over backwards to make him feel comfortable - patient relations brought him up a BWH sticker for his truck window and me a beautiful rose last night. Nurses/PCAs/assistants/etc., all keep wishing him to get to go home! Could be worse, oh yeah - it was!
Talk to you all soon.
Susan
Richard will not be leaving today. He has been told he will be here one more day, a 24 hour period to make sure everything is all set. He should definitely be leaving Friday!
The surgery went well - he has this huge dressing on it and says he hurts from his shoulder down to his wrist.
It turned out to be a very trying ordeal and a very frustrating day for him yesterday. As I may have already said (forgive me if I repeat myself) although he just found out at 9:50am yesterday morning he would have to have the pacemaker they rushed him down there at 10:10am like it was going to be done right away. I think I said he was just about to wash up, etc., and never got to do anything. He laid there on a gurney for almost 5 hours and he was not happy. He found out from one of the head nurses that there was absolutely no reason for him to be left there like that all day when he could have been more comfortable in his room. She suggested that he definitely write a letter to the hospital about it as she felt they did it too often for the convenience of the physician's assistant/physician. Then when they brought him back into his room about 5:30ish - he was just laying there on the gurney while the attendant that brought him up said she could not let him back into bed without a nurse giving instructins and the nurse's assistant and another assistant stood there not knowing exactly what to do. He wanted to sit in the chair after laying down so long and they didn't know if he could. They had to find his nurse to get instructions - she was down the hall and did not even come over but I could hear her saying that he had to go to bed and he could just walk over to the bed. Oh was he furious. The callousness of laying in the pre-op room needlessly and the lack of communication and feeling of ineptness when he got back to his room was his final straw. He said that it "finally broke his spirit." He was frustrated and angry but it was sad to hear him say something like that. He reiterated that last night to the night nurse as well. Who, by the way, was a delightful nurse that I feel began to help him feel better. That and a first- time-since-he's-been-here "good night's sleep" and listening to his ipod with great "soul healing" music (as he said) helped alot. He is doing better this morning - even with the news that he has to stay just one more day. He wants to make sure he feels Ok.
They have to come in and make adjustments to the PM this morning; standard procedure, and making sure the wires inside have adhered the way they should, etc.
He did have some palpitations during the night. 2 Nurses came in at 2:30am and asked him if he was OK. Then again at 3:00 they came in. Guess it isn't considered too big a deal and 24 more hours makes so much sense. They will take off the rest of any wires on the outside of his body today and take off one layer of the huge dressing that he has on the PM and he will get to clean up, etc. Which will all help. He told the doctor that he thought he needed to be fumigated and the doctor said that on the way home I could run him through the car wash (ha-ha).
Umm, I think that is about it for now.
Thanks for all the current journal entries - I got upstairs and try to give Rich a quick synopsis each time I read them!
Susan
The journal entries have been so great to read - I just feel badly that it is me reading them instead of Richard - he is going to enjoy so much reading them when he has the opportunity (and with 3 months recoup - opportunity will be there).
Bonnie - we will definitely want to take some good time together after all this.
Joel - thank you for confirming the fact that the shower will change his life! - you have been there done that and know. It is nice of you to follow his journal.
Norah - thanks for being such a good next door neighbor and friend. Tell Hannah not to worry - he will be all fixed.
Cheryl - You are right on target with the heartbeat thing - that is Exactly! what he has been saying. Now that you see he had to get the pacemaker - it all makes sense! Thank you for following his journal also.
Vicki & Ed (my oldest and dearest friend) who has been through so much with her own husband and knows, believe me! I liked the part about get better physically and forget mentally - boy have I learned that with the ups and downs - your tips are always good and right.
Holly - You are right about pushing out too soon - but I had enough advice to make sure that did not happen - and the nurse manager, etc., even came in to assure he would not be hurried. With the pacemaker - they just have to make sure it is Ok, and he will feel pretty confident on likely leaving tomorrow - since that procedure is not as tricky as the last.
Sharon, ole' teary-eyed buddy - thanks for being there!
Even where I work has been supportive!
My sister and brother and mother-in-law, sons, etc., all have called and called - even my son who is in Belguim right now with phone calls $2. a minute calls --- so the support is all great!
They should be calling me any minute to go back down to the recovery room!
Richard's wife, Susan
Well, guess who ended up after all being told he has to get the pacemaker? As we speak he is in surgery getting the pacemaker put in. I tell you it has been difficult. They wanted to do the 24 hour monitoring to make the decision. I stayed there with him all night and he hardly slept more than an hour and a half - me a little more. We were up before 5:00 am and dressed by 6:00 (well I was) - Richard kept his hospital attire on - he has made quite a fashion statement right along with his bottom hanging out!!
Anyway, one has to wait and wait to talk to the doctor or EP specialist - so he/we didn't want to leave the room - finally doctor comes in about 9:50am and said they decided that he must get the pacemaker - that is the only way as he was monitored and there were quite a few incidences of the heart rhythm going to that below 40 level they had it set at. So he said he would go in today at 3:00. But 10 minutes later the stretcher came and put him on it while they draw blood and do paperwork in the hallway. He goes down and into the same pre-op area he was in the day of surgery for the cath thing. His nurse of that day Diane immediately came over to talk with him and get him settled - she is nice and really teases him. She was leaving in an hour for vacation so Eileen took over. To make a long story short - he waited until just now - 2:40 to go in for surgery. He was not a happy camper and had to get boosted up and moved around on the stretcher bed because he was so miserable. He just met the doctor who is performing the surgery -he seemed nice too, hope he is more good than nice. It is only supposed to take about 40 minutes. About a 4 inch incision and they use a Metro pacer -- I think that is the name of it as this hospital thinks it is the best one available.
Hopefully this time he really really will be ready to start a real recovery process. He wants a shower very badly - hasn't had one since 4:30 am Wednesday a week ago. He is also hungry as he has eaten very little in the entire week. They promised him a snack when he gets out of the surgery - which is like a conscious sedation surgery so it isn't too bad. He has to add having his arm in a sling for about a week and not moving it at all to the whole chest thing!
I know I have had enough fun - this up and down roller coaster of emotions. I think he will begin to feel better emotionally after this too. Still a long road to recovery though - bless his heart!
Richard's wife, Susan
PS - told his mom to buy him a powerball ticket tonight as it is high ---- because it has to be his lucky night!
Richard is really basically doing well -- all things considered. He still doesn't eat alot and they are encouraging him to do so and he did not sleep at all last night - said he laid there and listened to his heart beat. That, of course, was brought on by the episode of his heart rhythum acting up last night and going down so low and erratic.
The nurse has already said he will still probably go to the stepdown level, however, he will likely not get out of the hospital until Thursday and maybe even Friday. The heart rhythum has to be completely stable for at least 24 hours before they can let him go home. Although he wants a shower badly and his hair washed and would like to go home -- he is all about staying where he is taken care of until that heart is just right!
Susan
Tuesday morning. Richard is still in ICU but only to have his heart monitored - he should be in what is referred to as step down if it wasn't for the heart beat/rhythum. Last night it was A fibbing again and rate going way down to 30ish. Again it makes me so nervous. His doctor comes in this morning though and says he is going fine and should go home tomorrow! Nurse thinks it should be Thursday. He hasn't even had all the stepdown stuff yet, classes/instructions, etc. We'll see.
Susan
Well, so many great emails from friends, family and nice people I don't even know.
Good news is that Richard is definitely doing better today - however, he is still in ICU (I thought originally by tomorrow he would actually be going home since he was supposed to be in about 6 days).
Iffy News: Although the team of doctors came in yesterday saying he did not need pacemaker - evidence of how he felt with some atrial flutters and some A V disconnections (hey I still can't quite understand how the electrical system works with the heart wires), but his atrial and ventricular aren't connecting right yet. They tested about 6:00 last night to bring his heart rate way down to like 30 and then test it and it isn't right yet. They decided to hook him up to some stuff and be prepared "just in case" and it made me so nervous I could not leave to go to the hotel and stayed there all night. Things went well and he even ate, more than 2 bites for the first time since basically last Tuesday.
The team of doctors came in again and did the same test and said "it looks good" and again they don't think he will need the pacemaker - he just needs a little more time, but did say they would ultimately defer to what the EP specialists said (pacemaker people) because it is their speciality.
Guess I better get back up there because I don't want to miss that visit.
He is definitely getting up and he is doing pretty good just the same.
Susan
This is Joanne and I am writing for Susan. We just heard from her a few minutes ago and she told us that Richard's heart is fulling beating on it's own now. HURRAY!!!!!!
They are making him stand up a few minutes multiple times today .
He has had a pretty bad headache and does not want to talk much or have any company yet.
It is good news that he will not be needing the pacemaker at this point.
Keep him in your prayers still - they are obviously working.
I left Richrd last night at 10:00. He was for the first time - very sound asleep - snoring a little. I had to leave him a note because I did not want to wake him. He is very very tired. They got him up twice yesterday to just sit in the chair with the heart pacemaker attached, of course.
His surgeon came in and said he looked good and it was going well -- except for the heart rhythum. He said he did not know what that happened - that although it does and he did not see or think it would happen to him - about 1 in 1000 it happens. He still has some hope it will start on its own, but is preparing for the EPs (Electro Physio(sp?) specialsts for Monday/Tuesday.
His night nurse, Hope, is excellent. His temp was down, but went up a little. She said his white cell count was looking better. She said she was going to make he had a dark room and as quiet as possible. She definitely pampered him. She invited me to stay, but he truly wanted me out of there so he could really get some rest. He said that even saying a few words makes him tired and even having to concentrate or listening to anyone talk (who me?) can make him tired.
It is Sunday morning and I am just heading over there and expect things to be continuing to improve.
Susan
Richard is still in ICU - will be until Monday or Tuesday when they make decision on whether or not to give him a permanent pacemaker. He had a long night and did not sleep at all until about 4:00 this morning with meds. He still has a temp and elevated white blood count --- but good news is they decided in spite of that they shouldn't - to get him out of bed and sit him up in a chair for a while (they think it will help his respiratory as that may be why he has a temp because he isn't getting up and about).
He looks good sitting in the chair!
Susan
Still in ICU. Still has a temperature - He's getting a little cranky so I would like to take that as a good sign.
That's all I can say right now.
Susan
This update will be brief - I know it is hard to believe.
I am on my way to the hospital, I hope to hear good news that Richard will not need the pacemaker. When I left at 10 last night he was doing pretty good. They aren't medicating him as much as they could so he does have pain, but he is resting well.
If anyone has thoughts of coming to see him him over the weekend - it probably is not a good idea as he will still be in ICU they say probably until Monday unless the pacemaker issue resolves itself.
Thanks for your continued good thoughts and prayers - I heard Aunt Florence lit a candle in her house and said a prayer for him.
Thanks,
Susan
Richard told me that the Doctor told him that he didn't think he would need the pacemaker permanently although we have to wait and see. I have to remember he hasn't even been out of surgery 24 hours yet. It is only 3:00 and surgeyr wasn't over last night until 9:15. Patience! He is still in ICU, but he is resting and looks pretty darn good to me.
Susan
Richard did not get completely through surgey until about 9:15 last night. Chris and I waited in the ICU area until about 10:30ish. I was glad to see him - a sight for sore eyes, for sure. His nurse Dana was fabulous. She did almost shock me into a faint when she indicated that there was a complication with the pace of the heart. She said that eveyrone coming out of heart surgery has the pacemaker wirers connected but that is standard procedure and they check to see if it can beat without it and they usually can, but Richard did not. She showed me the graph of how his flatlined "yep that was the part where I had the shock" indicating that although it happens, it is not as common for it to happen and they have to monitor and watch it and that I should not really worry though because it will be a couple of days before they know if he will need the pacemaker for keeps - she said sometimes the inflammed areas and all the banging around in there (sort of what she said) can cause it to happen and as he gets better and swelling goes down it may be perfectly OK.
I decided that I needed to stay there until at least they got him cleaned up and the couple of hours it takes to get the breathing tube out of his throat so he can breathe on his own. Chris & I got out of there about 2:00 am and left him in the hands of his excellent one-on-one nurse Dana.
This morning before I got there the doctor came in and talked with him and told him about the heart pace thing. Richard said I should talk with Joe (his nurse there with him now, which of course I did and he told me about it. He told he will be in ICU for a couple more days until they get this resolved. I said we were told from the start that with cutting into the heart muscle there was a "chance" he could end up with a pacemaker, but in all honesty - it was not expected. Joe the nurse said - it still may not happen - a day can make a big difference and it may be fine, but if he has to have the pacemaker - it will be fine too.
That is where we are. Richard is awake and feeling like he just had major surgery on his heart! He is sleeping alot but an awful good patient.
That is all for now. Must get back up to him.
Thanks for the emails and phone calls. Even got an email from Australia!Hope everyone else is OK.
Sorry if I gave too much information, but I guess that is what these journals are for.
Susan
Richard is just very recently totally indisposed - finally! After what began as a good morning of first meeting with his surgeon who came in all chipper and dressed up in his suit and tie and just coming back from a "golf vacation" in FL and then having his catherization done to make sure he had no blockages; he did not and that was indeed a very good beginning, and then all preped and ready to go for his scheduled 9:30 am surgery. However, from there an emergency (apparently a pretty bad one as Rich's nurse, Diane, said the emergency patient wasn't doing well and it was a very long surgery)-- bumped Richard's surgery. He literally "just went in" at exactly 4:00 pm. He did very well just laying in the pre-op room - perfectly still not allowed to lift his head or move his right leg for over 7 hours (from the cath procedure this morning). They wheeled him off with me barely able to keep myself composed as he was gone from me. But behold! as I turned the corner -- there he was again as they were putting him on the elevator - I gave him a big "Hi Rich, nice seeing you again so soon - I'll see you in a few hours."
It will be a long night, but for now he is in surgery.
Susan
First of all I want to thank everyone for all the great emails. It is surprisingly amazing how much it means to us heart valve patients and even more so to someone like me that isn't at all normally comfortable sharing my feelings. I am the type that keeps it to myself and thinks I can handle it all alone - solve it by myself. Not this time and it is comforting and feels good to have the support of everyone - my family, old friends (some old friends of over 30 years that I don't see too often like Lenny and Chuck) - good feeling to know you care, and now the "new friends" that I am conversing with on line. Like my preacher friend Duane - you have a way with words (good thing for a career that involves a lot of speaking engagements - like every Sunday)! Yes there have already been others that have been so kind as to share with me and give me words of wisdom - Keep them coming - I am enjoying it as much as is possible under the circumstances.
My wife and I are in the hotel room just waiting for our 4:30 am wake up call as we have to be there for 6:00 am. Just have to hold it together until they heavily sedate me at which time the pre-op nurse of this morning has assured me I will then be saying "who cares."
Thanks All, Richard
I've never owned a pair of pajamas before now im the proud owner of two pairs thanks to my sweet sweet wife. (bless her heart) I think this has been more difficult for her then me! If possible.It is comforting to know that she will be next to me during my recovery.I would like to know about everyone else recovery, experiences etc.I'll read other jounals today.
Uploading your photo!
I am really writing in response to responses from our recent trip to Florida and our visit with Duane and Peggy. I read all of Duane's latest journal and about our trip to see them and it was so great to read it and see the picture of the 4 of us and although we knew and heard alot about what was going on with him when we met him that Thursday night (he had just found out himself only the weekend before) - it is something to see it all in writing. (By the way, It is nice to see Duane has not lost his lengthy novel approach for his wonderful gift of "well-written verbage" and ability to captivate us all (ha-ha)).
We saw wondeful pictures of his children and grandchildren (he loves photography as evidenced by the great picture he took of the 4 of us - (again ha-ha). We had a delightful time and felt as comfortable as if we had known them for years, thanks to Peggy and her great cooking and easy going nature. This heart valve journal is amazing the way it brings people together, isn't it! Dinner was great and the homemade bread and berry pie for dessert were pretty special for a Thursday night after working all day.
I can't say enough about our visit with them. AND it was so nice to read the email that Richard got (he called me in his office this evening when I got home from work to let me see his email from Duane and Penny and Cheryl and Theresa and Fran - at least those are the ones I remember).
I have to confess that life gets busy and consumes me and I tend not to look as much as Richard does at all the journals but when I do I am always so blown away by all of you and all that you share and have been through and frankly for some of you, continue to go through. I know a group all like Richard and Duane are in that one-yearish timeframe and I have come to realize all over again that a year is not that long when it comes to something like this --- it takes a lot of time and it is for some, not without some setbacks and further issues, but it is still an "amazing journey" as I believe Theresa so eloquently put it and in spite of her denying any words of inspiration - she was! Thanks for the emails, I enjoyed them 100% and I know that the trip to meet Duane and Peggy was a good catalyst (we almost got to meet Fran, but she had company and looks like Cheryl was in the area but on short time - next time). Hey,one of these days a group of us could actually meet somewhere between Scotland/Canada/ME/FL - maybe, who knows! All of you all would be welcome to stop by to visit us in ME (the vacationland). Can you even imagine the image of comparing scars (Richard and Duane did).
Love Susan and Richard or a.k.a. Richard's wife, Susan