Myself and Don thank you all for the support and prayers. We are fighting through the tears and i know Don has so much will power that he will come through ...Read more
Myself and Don thank you all for the support and prayers. We are fighting through the tears and i know Don has so much will power that he will come through anything. He came through 2 OHS since 2011 so this will be the third time so its a charm. Will update you all later and thank you for letting me in his OHS family because it makes me fill better also knowing how many people ha e been through it and so mucv more and are sending prays to us who none of you guys ever meant each other. Just it feels like a strong family vibe here. Hope all is well with your own OHS and recovery. Bless you all..Lisa and Donnie
Susan Lynn Lisa - Thank you so much for keeping us posted. Please be sure to let Don know we're thinking of hi ... Read more
Susan Lynn Lisa - Thank you so much for keeping us posted. Please be sure to let Don know we're thinking of him every day! It's been a long, challenging road for both of you, but you will find the strength and perseverance to get through it. Hang in there! ā¤
Debbie Kelly When is Don's surgery? You two have been through so much. Hang in there, and know that your warrior ... Read more
Debbie Kelly When is Don's surgery? You two have been through so much. Hang in there, and know that your warrior family is here to give you support.
Still in ICU waiting for some lab work to.come.back. it.had to be incubated from a culture i am told. Trying to see what blood infection it.could be so he can ...Read more
Still in ICU waiting for some lab work to.come.back. it.had to be incubated from a culture i am told. Trying to see what blood infection it.could be so he can be put strong antibiotics (Vico. I think). Then they can figure out when they can do.the valve transplant and not have i lt rejected. So he is pretty foggy and just.wants to breath regularly but everytime they try to take him off ventilator he goes into total heart blockage and hyperoxy. Which is identically what happened in his 2nd OHS in 2016.. and his pacemaker is pacing 40% now which is up from his normal
He is fighting hard to try to have a good quailty of life so thats why we came to the doctors to do and im sure we will..God Bless you all. Thanks for the support. I will update more.when we know anything.
Gregory Ballard Thank you for the update. Keeping prayers coming your way. Don is a strong willed man and will get ... Read more
Gregory Ballard Thank you for the update. Keeping prayers coming your way. Don is a strong willed man and will get through this. Sending support for wife too.
Tim Saint Great to hear that Don is fighting hard for a better quality of life. Hope there is a quick resolutio ... Read more
Tim Saint Great to hear that Don is fighting hard for a better quality of life. Hope there is a quick resolution and positive outcome, you all deserve it. All the best.
Kevin Bradley Thank you for the update on Don. My thought and prayers are with you guys. Stay strong.
Catie B Lisa, I'm sooo sorry you guys are going through this! Like our other friends here, I'm praying and se ... Read more
Catie B Lisa, I'm sooo sorry you guys are going through this! Like our other friends here, I'm praying and sending heartfelt hopes and wishes for things to improve very quickly!
Barbara Wood Lisa, so hoping that everything goes well for you guys. Thanks for letting us know how Don is doing. ... Read more
Barbara Wood Lisa, so hoping that everything goes well for you guys. Thanks for letting us know how Don is doing. Very best wishes to you both!
Diane Esposito Thanks for the update, Lisa, weāve been worried about him. Hopefully they can isolate the infectio ... Read more
Diane Esposito Thanks for the update, Lisa, weāve been worried about him. Hopefully they can isolate the infection and start the appropriate antibiotics so they can clear it up and get him healthy enough for the valve transplant. Iām praying for both of you.
Im am starting to understand how important and strong this OHS community is.. I thank u all for the kind worss and support and info. So on Monday 04/29/2019 ...Read more
Im am starting to understand how important and strong this OHS community is.. I thank u all for the kind worss and support and info. So on Monday 04/29/2019 all my doctors and surgeon(one) will have a appointment to meet and dicuss my options. I finally kept speaking up and got.so fustraighted that i think i will have a good outcome with them from now on.. Plus i was so close to sign a AMA to leave bit i promised my wife i wouldnt.. I have a more the 25% of gradient buildup on my bivine tricuspid valve which is causing a extreme water gain because my body is going into secure all liquid kind of thing due to the valve not closing properly. It still shows. 45 ejection value but does know how much actully flows in to fill up. Also with another TEE test they will have more to see it better. With my body steadily gaining 20 more pounds of weight (water) it has gotten up from my feet to my abdomen and swelling up bowels stomach etc.. This really answers alot of questions about how i been feeling latetly.. I just want to know if there is a mech. Valve replacement for the tricuspid vavle that i could look into instead of the bovines that i have used twice already.. I dont care about the blood thinners or INR testing. I much rather that instead of counting how long before a third replacement valve would last.. I asked one of my dotors and was told that becuse of this being the first valve that my blood is introduced to it has to be bovine material.. Any and all info would be greatly appreciated.. Again i thank you all for ur ongoing support and pray for all your recovery and upcoming OHS to come along painless.. God Bless .ty
Barbara Harris I have no advice for you but I am certainly sending you good thoughts and prayers. I guess that I wil ... Read more
Barbara Harris I have no advice for you but I am certainly sending you good thoughts and prayers. I guess that I will have tricuspid surgery in the near future. As you know we are a rare group. I will try and follow you.
Don Brown Thank you.. I will look for your recovery also. Pray all stays well..God Bless..ty
Susan Lynn Don - You've made it this far, don't lose your momentum. It sounds like your medical team is getting ... Read more
Susan Lynn Don - You've made it this far, don't lose your momentum. It sounds like your medical team is getting to the bottom of it. They will give you the pros and cons of each of the valve options. Remember, there are valve in valve replacements being done without invasive surgery now. The advances will only improve over time - so don't discount a bio valve without considering everything. Once you drop the water weight, you're going to feel like you can fly! It may not seem like it today, but that could be just a few months from now. Wishing you all the best!
Gregory Ballard Don hoping all is well with you. wondering how it went with all your doctors meeting together to dis ... Read more
Gregory Ballard Don hoping all is well with you. wondering how it went with all your doctors meeting together to discuss options? Give us an update when you can. Remember you are strong and you can get through this.
I will just let this... I feel like hell and exhusted and feels like a belt being tighted around my chest and abdomen area and feels like i tell these doctors ...Read more
I will just let this... I feel like hell and exhusted and feels like a belt being tighted around my chest and abdomen area and feels like i tell these doctors the same story over and over.so i live it everytime i repeat to certain doctor. I seriously just.want every doctor that im going to see or need a opinion from to all be in just.one room at.the same time to hear it all at once.. Thats alot since 2011 and 2 OHS and all this damn water.weight i have been dragging around. I know that will not happen and this just how im feeling. My wife went off on a doctor today when he started talking about healthy eating.. We been eating healthy since 2016 so lets rethink that ine doctor..lol..made me laugh... So last week my doctor tried to stretch my 2nd bovine tricuspid valve in hopes it would help my CHF and water retention.. It did not so now we are talking surgery..well they are talking it.. It.would be.my third so i pretty much know what they are explaining to. All except my wife and myself do not think my body will take a third OHS. I had.such a bad time with my second one. The total heart blockage and hyperoxy had me in icu then had.a pacemaker installed and came to my senses 4 to 5 days later.. So i really dont want to.go.through that again but.i need a better quailty of life now then i have now. My insurance has me locked into NJ and i been looking for second opinions if anyone on here has them please let me know. I really wanted to share some good positive words with this community and almost didnt want to say anything because of.all it depressing me so bad but someone in the community asked me to share and maybe ask opinions from any one that has been in a similar situation. So thanks for that and will update when i figure it all out i suppose...God Bless..ty
Gregory Ballard Don I have been wondering how you were doing. Thanks for updating us. What is your exact diagnosis? ... Read more
Gregory Ballard Don I have been wondering how you were doing. Thanks for updating us. What is your exact diagnosis? CHF caused by what exactly? Is your valve not working or what is causing the OHS. I know if you could find a confident doctor you would feel so much better about #3. I too was really worried about it just a few short months ago because of my bad experience with #2-3-4. You deserve a better qualify of life and I truly believe you will get it if you find a good doctor for your OHS. I am proof you can easily make it through another surgery. You are a fighter I can tell by your posts. Different doctor = different results. We are all here for you. All you heart warriors in NJ.......lets help Don and give him some doctor recommendations!!
Claire Kreger-Boaz Don, Iām so sorry to read this & it sounds miserable & scary. I am also having a hard time getting ... Read more
Claire Kreger-Boaz Don, Iām so sorry to read this & it sounds miserable & scary. I am also having a hard time getting rid of water weight & though my surgery was much more recent I know how awful & frustrating it is to explain these things to others. Your wife sounds like an awesome advocate & as a former Jersey girl I have no doubt you will find an amazing Dr. for #3. Have you checked out Deborah Heart & Lung hosp? https://demanddeborah.org/find-a-physician/physicians/
Barbara Wood Don, I'm so sorry that you are having to deal with so much stress & worry. Have you asked your vario ... Read more
Barbara Wood Don, I'm so sorry that you are having to deal with so much stress & worry. Have you asked your various docs to communicate with each other? I had a cancer history that complicated my valve surgery & asked my oncologist to call & discuss my case with my surgeon prior to surgery. This brought me some peace of mind. Keep pushing, you deserve answers...best wishes to you.
Kevin Bradley Don, sorry about your frustrations, but keep your head up and donāt settle. You pay these doctors t ... Read more
Kevin Bradley Don, sorry about your frustrations, but keep your head up and donāt settle. You pay these doctors to care for you so keep them honest and make them work for you. Your health is important! My continued thoughts and prayers are with you in hopes you get better soon.
Rob Sparling So sorry to hear about what you are having to endure. Stressful! Yikes, scary! Keep fighting, Don! ... Read more
Rob Sparling So sorry to hear about what you are having to endure. Stressful! Yikes, scary! Keep fighting, Don! Thereās gotta be a talented team in NJ ready for you! They just donāt know it yet!
Catie B Don, I hate that you are still feeling so crummy and that the outcome of this latest procedure wasn't ... Read more
Catie B Don, I hate that you are still feeling so crummy and that the outcome of this latest procedure wasn't what everyone hoped. For what it's worth, I'm way across the country, but in a few google searches, it's coming up over and over that the top hospital in NJ is Morristown Medical Center. They are cited as safest, best and also that they do the most valve replacements in your state. Someone here may still be able to recommend a surgeon--if that's what you would like, you might try making a post just about that and making it clear in your title. Best, best, best to you!
Does anyone have some up to date information on tricuspid valve replacement options? Either bovine or mech. I have been looking goggle all over and nothing ...Read more
Does anyone have some up to date information on tricuspid valve replacement options? Either bovine or mech. I have been looking goggle all over and nothing beside a research trial and survivor rate which i personel no.was wrong nit that i would just ask my OHS family here.. LMK. God Bless..ty
Catie B Hi Don... It's not something I have knowledge of, but I did a bit of searching. I think the informati ... Read more
Catie B Hi Don... It's not something I have knowledge of, but I did a bit of searching. I think the information may be harder to come by, because replacing tricuspid valves is a rarer surgery. I read that there are 182,000 heart valve replacements a year but only 8,000 of those are tricuspid. As you probably know, mechanical would require taking warfarin and tissue could wear out sooner. At least, that's the case with mitral and aortic. This article was the most readable and comprehensive one I could find about tricuspid valve disease and surgery. Hope this helps. https://www.mayoclinic.org/tests-procedures/tricuspid-valve-repair-tricuspid-valve-replacement/about/pac-20385087
See how Mayo Clinic research and clinical trials advance the science of medicine and improve patient care. Explore now..
Gregory Ballard Don sounds like you are feeling a little better and I too hope your recent procedure worked. As far ... Read more
Gregory Ballard Don sounds like you are feeling a little better and I too hope your recent procedure worked. As far as the replacement options you have to do what is best for you. Ask your surgeon what the pros and cons are for each. I chose the tissue valves each time as I didn't want the blood thinners for the rest of my life. Those who chose mechanical valves chose what was best for them. Ask you doctor what he thinks is best for you and your situation. Stay positive my friend.
I just wanted to thank all of you for your comments and suggestions and prayers. I had my valvuloplasty/valvotomy procedure this morning and just left recovery ...Read more
I just wanted to thank all of you for your comments and suggestions and prayers. I had my valvuloplasty/valvotomy procedure this morning and just left recovery to my hospital room. Dr. Highbloom(my cardiology surgeon) said it went good. I hope so but wont know the effects for a couple of days. Thank u all for your words.
On a different note,,
I want to appolgize for some of my post being so negative. I understand alot of us just want to hear the good things and hope we get them too... and then some of the negative stuff is just how i was feeling and being bluntly honest. No one ever complained to me but im sure some just didnt want to hear it.. Saying that i will try to be positive and helpful and emotional strong in my future post and comments. I know everyone has a different recovery road and God bless you for youe recovery or upcoming OHS. As for people that are waiting to have their OHS i hope my negative stories dont scare you or stress you out. You need to keep a clean mind when your OHS time comes. I just wanted to explain to the community why some of my post.were like that,, and again i hope i did not offend anyone.. Also i hope this procedure works for me.. Im trying to stay positive for myself.. God Bless u ALL.....ty
Debbie Kelly There is no need to apologize. It's good to release your feelings, and we are all here to support ea ... Read more
Debbie Kelly There is no need to apologize. It's good to release your feelings, and we are all here to support each other, Don. You sound so much better, emotionally. Praying all goes great, from this day, forward!
Karrie Williams I agree with Debbie. No need to apologize. This journey is hard and I appreciated your honestly. If a ... Read more
Karrie Williams I agree with Debbie. No need to apologize. This journey is hard and I appreciated your honestly. If all we heard were the good things we would feel alone because it is a struggle. We are here for the good and the bad. Glad you are finished with your procedure and praying for a very successful outcome. God Bless You
Marie Myers It is hard to stay positive in the face of major health problems. It is a helpful habit to get into t ... Read more
Marie Myers It is hard to stay positive in the face of major health problems. It is a helpful habit to get into though, and I, too, am a work in progress in that area. Hope your procedure helps you!
Catie B I so hope that this procedure really takes care of things for you, Don.
We all feel down at times, a ... Read more
Catie B I so hope that this procedure really takes care of things for you, Don.
We all feel down at times, and some of us much more than others. You're okay here. Take good care.
Not much good things or thoughts to be shared this week,month
.etc....etc...
Scheduled for my valvuloplasty/valvotomy tomorrow morning (04/10/19). What i ...Read more
Not much good things or thoughts to be shared this week,month
.etc....etc...
Scheduled for my valvuloplasty/valvotomy tomorrow morning (04/10/19). What i hope happens is that the stretching of my (2nd bovine tricuspid) valve works for me. Wont lnow if full affects are expected or over a month or so. Doctor gives it 60%to40% it will solve my CHF flare up at this time. I have had the same procedure right before my 2nd OHS. So i dont place much faith in it and will look to the immediate future to just replace the whole valve again for the third time. Im not trying to be a downer or say i give up but im just beimg honest in my opinions and past medical track record. I will know more after. I just wanted to update a little.
I also wish all in the community regradless if u are in recovery or awaiting your 1st OHS. Wish you all a healthy long un-eventful(OHS way) life and also your family and support friends. God bless you all....tu
Diane Esposito Don, I hope everything goes well for you today.
Mike Roskowinski Hey Don sorry to hear that you may have to go through this again. Maybe this time they will be able ... Read more
Mike Roskowinski Hey Don sorry to hear that you may have to go through this again. Maybe this time they will be able to fixed right. I am sure it is stressful and you want to get an answer but you need to keep pushing through. Have you thought of going to Cleveland or the Mayo to get it checked? These are the top hospitals in the nation for heart issues and maybe they can find the problem. God Bless hope all goes well.
Susan Lynn It's unfortunate that you're experiencing complications and enduring additional treatment. Remember ... Read more
Susan Lynn It's unfortunate that you're experiencing complications and enduring additional treatment. Remember, forward movement no matter how slow is getting you closer to your destination. Stay positive.
Catie B Sounds like it will take a little time to really know the outcome of your procedure today. I really h ... Read more
Catie B Sounds like it will take a little time to really know the outcome of your procedure today. I really hope things go well! You've been through a lot and my heart goes out to you, Don. I'm rooting for you.
I wanted to thank u all for.ur.great. ⤠filled comments.. Yes i.got a good surgeon from lady of.our lourdes hospital.. My second bovine valve has been collecting ...Read more
I wanted to thank u all for.ur.great. ⤠filled comments.. Yes i.got a good surgeon from lady of.our lourdes hospital.. My second bovine valve has been collecting graidents and.not.opening enough to push blood to my lungs or.body
I.learned about or infac. Numbers are measuring the blood going to.the heart but not the amoumt.of nlood we ger im first.. I still have and 45-50% inf.number so. That's why i went for a.second opinion. Did a cath. Pressure test and were low. Have a anmormal ekg becuse of a low flow input
Doing my TEE in am so surgeon can map evertrhing out. Then will set next possable date due to.the fact of my CHF left side.tje water build up is up to my abdomen and starting to put pressure on intestines and other organ.. Just for FYI after my second OHS valve replacement i followed dr orders and heart doctor and 180 mlgs of lasixs daily. I spent 5 mims every hour.in the bathroom.. Even now i never get or.got all the extra water weight off me. Just day to bed tjen woke up.filled again. The last 2 months i put on 20 lbs. The weight has changed.everything about me
. cant.walk or.play with grandkids..cant.walk up a flight of staires.with out getting badly winded. Even last week we took mt grand daughter to the zoo. I.had to rent a electric.chair to.get around
It was embrassing to me. Im 46 and feel.like half of my old self.. I.been trying to explain all this to.my old cardiologist and he pushed me through test after test and then pushed to my pulmaonary doctor to blame it on my copd. Then he.put me through a million test and.sent me.back.to my heart doctor. I.did this for 3 years and still fighting water weight and exhusted all.tje time and labored breathing. I told them i wanted quality of life no matter how long. I wasnt worried about tje quanity to much. That way i.can do my bucket list and.except whatever comes just comes. I just dont have the will power to go through this third OHS. I dont know what to do. I am jalf thinking of just denying the surgery and get medicated to push me.im what ever time i have left. I know it.shoulds crazy amd shelfish but i just dont see myself making it through number 3.... I hope pray and wish tjis whole community of.OHS warriors nothing but great surgery and recovers.in your lifes..again i.cant see and type through my tears right now.. After tee testing and surgery conference i will update and let u know.if.i choose the surgery or do AMA and do whayever i can with all mg family.. Its a horror movie in my head thinking about 3rd surgery.. I just.feel so broken at this time.and comfused.and in a fog mostly through the day.. God Bless u and.ur family im ur lifes.. Thanks for the kind support comments. Got to go now...ty
Valerie Herndon-Vitarella You are in my prayers. You have had a very rough time and are feeling defeated, but don't give up! It ... Read more
Valerie Herndon-Vitarella You are in my prayers. You have had a very rough time and are feeling defeated, but don't give up! It is worth fighting to improve your quality of life and to spend more time with your family. Praying that the Lord will guide you and your medical team and that you will feel His peace and comfort.
Don Brown I really hope so miss valarie
Thanks for.tje thoughts. Its just a bad place to ne in my head and to ... Read more
Don Brown I really hope so miss valarie
Thanks for.tje thoughts. Its just a bad place to ne in my head and to try to deal with it. Mo.problem with my partner because she totally umderstands and supports me..just.so hard to try to explain it.all over to my kids(all live.in seperate lifes and grown up) and family. They are all still trying to pick my emotions up from OHS number 2. But all have asked why i didnt feel mich better when all said and done.. Sorrt here i go.again with a long comment when i just.should of.kept it short amd sweet. Im sorry..God.bless u and ur family in ur recovery and ur lifes...tt
Susan Lynn Don - You're taking charge of your health and are on the path to feeling better. Once your heart st ... Read more
Susan Lynn Don - You're taking charge of your health and are on the path to feeling better. Once your heart starts functioning with your new valve, everything is going to improve. You're young and will have a better quality of life in no time! All the best!!
Debbie Kelly Don, I remember my father who went through all the feelings you are having. I have told you this bef ... Read more
Debbie Kelly Don, I remember my father who went through all the feelings you are having. I have told you this before and going to tell you again. My children and I begged Dad not to give up. We needed him too much. Maybe, that was selfish, on my part. He fought his battles hard, for us, and there came a time, that he started feeling better and continued to feel good for years later. He went on to live to be right at 80.
You have been through a lot. Give this new doctor a chance to make your life better. Take care, my heart warrior friend. Don't give up!
Catie B Don... So sorry for how overwhelming it feels to be looking at the likelihood of surgery #3. I'm ver ... Read more
Catie B Don... So sorry for how overwhelming it feels to be looking at the likelihood of surgery #3. I'm very sorry, too, for all you have suffered both physically and emotionally the past few years. I so hope you can find the strength to go forward with whatever treatment the doctors believe can turn things around for you. You have family members who love you and you are important to them! If you give up, you will never know what you might have missed and what they might have missed. Also, if you're suffering from depression and either it's not being treated or the treatment isn't helping, I hope you can seek out some better support there, too. A very low mood can make all of life very hard to walk through and can make hope feel out of reach. You deserve a chance to feel better all the way around. Prayers for you here.
Well.... No surprise to me but as per my second opinion for my valve it looks like surgery.. Again i saw this coming but didnt exspect it in only 3 short years ...Read more
Well.... No surprise to me but as per my second opinion for my valve it looks like surgery.. Again i saw this coming but didnt exspect it in only 3 short years after my 2nd tricuspid valve transplant. Cow animal bovine. Being my first was in 2011 and then 2nd being 2016 i just believed it would of lasted longer. I pretty much lnow what to expect for another OHS but i had major problems recovering from my last surgery. After surgery i jad total heart blockage and then hyperoxy?spelling? I couldnt breath on my own. Had another emergency surgery to put in a pacemaker then and i woke up amd started to come back. That was after a week in icu just to figure out who i was and my kids or didnt know what year it was.. It was crazy. At that time it was hard for the surgeon to give me total percentage on surgery. He was more concerned that i would need a third surgery before i was 55 years old. Well im 47 this year and i dont know.how this is going to go. But im so tired of being sick and tired and huffing and puffing to walk or 1 floor of stairs. Anything has to be better then this right? Anyone who.has experience with a third OHS please give me some input in your story PLEASE.. God bless and ttylater ty
Phyllis Petersen I can't imagine what it's like to go through a third heart valve surgery. Do they have any idea why t ... Read more
Phyllis Petersen I can't imagine what it's like to go through a third heart valve surgery. Do they have any idea why this happened so fast or any way to improve your overall health?
Gregory Ballard Don I'm thinking after #3 you will be a new man. Sounds like so many complications from #2 that is w ... Read more
Gregory Ballard Don I'm thinking after #3 you will be a new man. Sounds like so many complications from #2 that is why you still don't feel good. Trust your new doctors and move forward not looking back. You haven't felt good since 2016 ..... 2019 is your year!! Any ideas when they want to do surgery or are you still interviewing doctors?
Catie B I imagine this news hit you pretty hard. I was hoping you'd get much gentler news, Don. I'd be looki ... Read more
Catie B I imagine this news hit you pretty hard. I was hoping you'd get much gentler news, Don. I'd be looking for the best hospital and most expert surgeon who has done many, many surgeries.
Vicki Zimbric I am so sorry Don!! You sound like you need all of our strength & support! I canāt imagine the w ... Read more
Vicki Zimbric I am so sorry Don!! You sound like you need all of our strength & support! I canāt imagine the worry, & frustration you must be going through! We are all here for you!!
Wow.. No comments on a saturday night to sunday morning.. Guessing i wasnt as positive to relate thjs last week..im not jumping to. Conclusions but.im. learning ...Read more
Wow.. No comments on a saturday night to sunday morning.. Guessing i wasnt as positive to relate thjs last week..im not jumping to. Conclusions but.im. learning how this all works.. Neverless.. To all the OHS survivors and upcoming surgery dates also i.wish u the very best for.u and ur families.. I wont be posting to much at.this time do to my negativity and still not.in a good place with my recovery or.my possable 3 OHS.. I.dont want.to.drag anyone.down or.take.up space for someone else to be a positive help for someone else.. God.bless u all.. Maybe will.check back.sometime..
Susan Lynn Don - I'm sorry to read this post and I encourage you to choose your attitude every day. We can't c ... Read more
Susan Lynn Don - I'm sorry to read this post and I encourage you to choose your attitude every day. We can't control our circumstances, but we can control how we react to them. It's very easy to become consumed by negative thoughts especially when you're not feeling well, however, looking ahead to better days and remaining confident that you're taking the right steps to regain your health will make a huge difference in your progress. 'We move toward and become like that which we think about.' Every day presents new opportunities and reasons to be grateful. Stay positive and keep your focus on where you want to go. You will get there. All the best.
Marie Myers Thank you Susan. Very wise words for all.
Mike Roskowinski Don listen to Papa Roach Who Do You Trust CD. Lots of good songs on there that can provide motivation ... Read more
Mike Roskowinski Don listen to Papa Roach Who Do You Trust CD. Lots of good songs on there that can provide motivation Elevate is my favorite. Good luck
Catie B Hey Don, hope things ease up. I thought you wrote on the 26th that you were going in the next day and ... Read more
Catie B Hey Don, hope things ease up. I thought you wrote on the 26th that you were going in the next day and I was watching for you to post how the results were on tests about your heart? Maybe I misunderstood. People aren't on here all the time and it can happen that at times folks don't know what to say or aren't up to posting sometimes. Lots of things. But you're welcome here and please don't take away any message that you aren't.
Diane Maher Hi Don. I have always felt that Susan Lynnās posts are always so very wise and helpful. If you go ... Read more
Diane Maher Hi Don. I have always felt that Susan Lynnās posts are always so very wise and helpful. If you go to her journal and read āCreating Your Own Storyā, you may find her message particularly inspirational ..and helpful...with the many feelings that you are struggling with at the moment.
Mike Roskowinski Catie I agree with you 100%. I am on vacation and only posting here and there. Always checking and re ... Read more
Mike Roskowinski Catie I agree with you 100%. I am on vacation and only posting here and there. Always checking and reading but not always responding. We all may check often but not always posting. Good luck all my heart warriors
Don Brown Thank u all for ur help and wisdom.. Its just when i went.to get my aecond opinion i got the news tha ... Read more
Don Brown Thank u all for ur help and wisdom.. Its just when i went.to get my aecond opinion i got the news that my valve was starting. To fail again and gradient buildup only afrer 3 years. I been spiraling out of control ever since
I need.to find my bearings.. Thanks for ur support. God bless..ty
Rita Savelis Don, being negative is okay. It's being real and honest that's important. I personally needed to read ... Read more
Rita Savelis Don, being negative is okay. It's being real and honest that's important. I personally needed to read posts that were about real emotions and real stuff that happens, much of it hard. That's my way of making it through. I am grateful for posts like yours and was especially grateful during the hard times I went through after OHS 4 yrs ago
Don Brown Do u still have the days also? After 4 years i mean
Catie B I'm so sorry your valve is starting to have problems, Don. Are they helping you with the fluid reten ... Read more
Catie B I'm so sorry your valve is starting to have problems, Don. Are they helping you with the fluid retention and any other symptoms you're having? I hope the depression and anxiety will ease. Try not to look way down the road, if you can. Sometimes we have to just take things bit by bit.
Just checked in and posted some commets to couple OHS brothers and sisters. Im not doimg too good in my ongoing recovery and will be talking to new surgeon ...Read more
Just checked in and posted some commets to couple OHS brothers and sisters. Im not doimg too good in my ongoing recovery and will be talking to new surgeon on Monday. So not.to much positive things to.post about myself so i will be saying alot less................alot. š„
I posted and replied back recently.. I have been so damn emotional that when i start putting it into words i tear up and keep thinking why me or why any of ...Read more
I posted and replied back recently.. I have been so damn emotional that when i start putting it into words i tear up and keep thinking why me or why any of us.. Tje community i have talked to and read their stories and replied to seem like we all are good people with lifes we made and love our families and respect our neighbors and friends. Then why can i come on here and see a new OHS brother or sister getting ready to go through one of the most awful things and pain and emotions and recovery that i wouldnt wish for my own enemy? It just dont think it is or was fair to is all.. I know.some of us will say .."its all in HIS hands"... or ..."its all has been written for us already, its part of a greater plan"....and im a GOD fearing Christian..(i try) i would give u the shirt off my back if u asked and my last $ If you needed it. This is not a big complaint, or a pity party or sympathy stealer. I worked hard all my life.. I raised three kids and grew up with them.. Also in my story u will see i jad a battle with drugs and i narrowly escaped and got my life back. Thank dark part of my life sucked and this is not a excuse but i was 20 years old and had a beautiful bany girl that just turned 1 when we had my first son January 18th 1992.. He was a premie at 4lbs 6 ozs.. Had a rough start in his life.. His was my namesakey jr. He was in the hospital for 2 months amd gained weight and started to do so much better.. It was his 11th night home with us.. I got home from my second job amd fed him his bottle and laided him to bed.. 2 hours later he was blue and not moving.. Cold.. I didnt know what to do.. His mom called 911.. I tried to give him cpr like the operater was instructing me.. Ambulance came and i stayed back and sent his mom with him so i could get a babysitter real quick for my daughter.. In about 20 of the longest mins of my life i got to the hospital already. I heard his mother screaming one of the most loudest screams i ever heard...NO....NO...NO NO!! Over and over. Almost in rhythm with my steps.. I saw the doctor and nurses and security.. At that part i think i knew what they were going to say but didnt believe it..they told me he died of SIDS.At that time i didnt know what sids was. Sudden infant death syndrome. Natural causes on hos death certificate. So then.I remember throwing up first.. Then grabbing the doctor by his collar screaming for him to help my son.. Make him okay... Tell me tjis wasnt happening.. Then security stepped in and i hit one of them.. I felt bad after that bit he didnt even say a word about it to me.. No fight back.. Nothing.... His mother had to be sedated and moved. They asked me if i wanted to hold him for a bit.. I did...for aboit 2,3 hours. Just waiting for him to breath cry or anything.. Then i had to switch zones and worry and take care of his mom.. My dad said men dont cry and we needed to be stronger to take care of the family we had left.. Needless to say after i buried my son i still was at the grave yard when my dad tried to get me to leave.. I told my dad i just wanted to be there and love my son and make sure he never felt the hurt that my own father put me through.. That was the last words i ever said to my dad again. He died in 2007. I respected and went to his funeral but i never forgave him.. Little later i had another son and another daughter... Both are fine and doing great in all their own lifes and family's. I started drugs years later and fast foward to my first tricuspid valve transplant in 2011 due to endocarditis i caught using drugs.. I have been clean eversince that day. Then valve went bad and had another OHS to fix it.. Im heading down that road again for maybe a third OHS.. I am keeping my fingers crossed that a Valvopastic procedure will be enough to stretch my valve open instead.. This is the first time ever i sat a wrote all this down and first time i shared with strangers.. To answer a couple obvious questions.. I never married my kids mother.. We were never the same after that.. I raised all my kids with her and always there for them.. Also im not proud of what battles i did in my past.. I ask this community to not.be harsh an just judge me as a addict or something.. Im not saying i was perfect and i didnt share this for your pity.. I just guess i wanted to explain that we are all different with our past and what got us here to this community.. Also i really want to know if anyone else thinks that ("THE BIG MAN UPSTAIRS") is a fking comedian?? Because sometimes i feel like my whole life was a big,dark,gritty, crying and laughable JOKE!!!!!!
Wow i didnt know i wrote all of this.. If u made it this far and still have some respect for me and feel like our lifes are a little bit jokeable(in a good way) i owe you a big , strong, stiff..(be nice..) DRINK šø šŗ š· šŗ šø š·. Hope my story reaches you in the most respectful way i could of wrote it. I look forward for these comments.. I seriously need something good after how my week has been.. As always God bless u and ur recovery. Tyš..
Quick edit... Sorry guys this is a major vent and neen having a bad week with possable 3 OHS being sooner then i was ready for..God bless u all..ty
Bradley Dunn Thanks for sharing. I am not sure what feedback you are looking for. I did read it all. You lost a so ... Read more
Bradley Dunn Thanks for sharing. I am not sure what feedback you are looking for. I did read it all. You lost a son. I rather lose my self than lose my son. I don't think I could survive if something happened to him. He was home schooled for the first 10 years of his life. Now, he is in 5th grade and I HATE IT every-time he walks out of my front door to go to school as I know one day he will leave and never return.
Baby steps. That is what life is. Slow progress to a better self.
Don Brown Now thats a awesome comment.. I wasnt looking for any type but readimg urs does make me still know th ... Read more
Don Brown Now thats a awesome comment.. I wasnt looking for any type but readimg urs does make me still know that there are real people in life.. I dont know ur background with ur dad.. But im sure that when ur sons does go out im the world that he knows that he can always count on his dad to ne there at that same door waiting and welcoming him no matter what... Thats awesome for u to share that... Thanks for reading mine.. God Bless u and ur son.. Ty
Darren Ketchley Stay strong brother. OHS is a very hard road and we are all in this together no one is ever judged. I ... Read more
Darren Ketchley Stay strong brother. OHS is a very hard road and we are all in this together no one is ever judged. Im from newzealand and the people have a special word in the maori language. It is kia kaha and it means stay strong.
Don Brown Thanks Darren.. Its carzy to think of OHS world wide..thanks. Gid bless u and ur recovery.ty
Hmm.. Whats on my mind it says...... I dont want to make anyone feel any other type of way in their OHS recovery or upcoming. I wish u well and God Bless.... ...Read more
Hmm.. Whats on my mind it says...... I dont want to make anyone feel any other type of way in their OHS recovery or upcoming. I wish u well and God Bless.... That being said i had a very fked up day with my new Doctor team that i meant for the first time. This is due to the fact that after my 2nd OHS tricuspid valve transplant my aftercare has total sucked and dropped the ball i feel. I wish i found this site before all this maybe i would of.been better informed instead of playing a passing the buck and health insurance game and wouldnt be going through what i going through right this second... So after being seen and a ehco and little blodd work it seems my valve has gradient build up again and my pacemaker is doing about 40% work helping my heart beat. So CHF left side is due to the major water weight i have been fighting since my surgery.. Im a smart low sodium and low fat kind of guy. I dont over eat and far from it. So me.being morbidly obese as my last doctor as says has been a waste of time.. Which has been a waste of life to me.. Yes we are strong in our surgeries and our recoveries and we talk about all the positive good we are trying to make in our life after OHS.. But can i ask if im shelfish in trying to say i lost years from having a bad doctor team? And my depression almost got the better of me. Can i say that every day i tried to push my self to heal was more pain then good? So now i avoided a ambulance ride from my Cardiologist today by promising her i will show up in the hospital tomorrow morning for admitting. I am 46 years old and have three great kids that live.all over the US. I dont even know how to explain this to them when they almost lost me from my last OHS. It just sucks so bad that i did everything that my old fking doctor asked or.told me.. I been taking 120mlgs. Of lasix daily since 2016 and still havent lost one pound of water weight. In fact i gained almost 15 more lbs in the last 30 days which all this finally pushed my wife to find a 2nd opinion. I havent come across any stories from the community here about all this bad in there OHS. Im sorry if im being rude but i just needed to vent to someone besides my wife(poor girl) and im not.letting my family know any of this yet. Also maybe someone else is feeling all the bad sht i been going through and helps them to step up and find a second opinion and not to waste their life. If that happens then i would be glad i said this.. I dont know.what else to say or do right now.. Counting the hours before i go back in hospital and hopefully will update at a later time when i figure things out. Sorry for and disrespectful words i might of typed... God bless u all.ty
Claire Kreger-Boaz I"m sorry you're going through this and it sounds terrible! I, for one, am relieved that you posted s ... Read more
Claire Kreger-Boaz I"m sorry you're going through this and it sounds terrible! I, for one, am relieved that you posted something so real. I have been surprised by how positive everyone is. Which is great, but this is scary and has varied outcomes and challenges, so I support you venting, and I am also 46 and it's hard to be taken out of your life once for OHS, let alone 2 or 3 times. You've earned the right to vent! Best of luck tomorrow. I am cheering for you. CKB
Rob Sparling Don, I am so sorry to hear about what you are going through. No...what you have *been* through. It se ... Read more
Rob Sparling Don, I am so sorry to hear about what you are going through. No...what you have *been* through. It seems the new team has a different and more decisive approach. She may have saved your life and it was good that you are listening to her! Your kids will understand and thank you for taking care to take this next step! And to do it swiftly! Can we assume you got the best team possible in NJ? Or NY? At the end of the day, I think it comes back to getting the right team together who has seen thousands upon thousands of our cases. I pray that is what you have behind you as a tailwind! And feel free to vent, man! You deserve to! Get to a better place and throw the thumbs up post!
Catie B It sounds nightmarish that your previous medical team let you down for quite a long time. I echo Rob- ... Read more
Catie B It sounds nightmarish that your previous medical team let you down for quite a long time. I echo Rob--I hope you found highly qualified doctors to help you this round that you can place confidence in. I hope they've fully informed you and explained what the plans are. Praying for an excellent outcome for you, Don.
Don Brown Thank u rob... I hope.i have a good team... Will update later today...God Bless ty
Don Brown Thank u for ur support ms katie.. I will updare little later. God Bless ty
Don Brown Also Ms claire i am gratedul for ur honesty will update soon God Bless.. Ty
Trying to sleep and get some rest until my appt. Tomorrow with my new Doctors cardiologist and primary. Just from experience from my last 2 OHS i will be admitted ...Read more
Trying to sleep and get some rest until my appt. Tomorrow with my new Doctors cardiologist and primary. Just from experience from my last 2 OHS i will be admitted for IV diuretics for my water overload and possibly set up for a valvopastic procedure and maybe a IV heparin regiment.. Them go.from there.. That's where i start shaking and getting scared. Not to repeat to u what i might of said in a past post but i jave done and followed this procedures twice and both of they ended with my first and second OHS and a pacemaker to help 40% of my function.. I have read a connected with alot of this community's storys and their priceless wisdom and help that you all are giving me
I never knew this group of help was here. I dont do facebook so this is new for a older guy like me.. So honestly about tomorrows appointment and consultation at 12:45 pm. I will be update this story at 1:00 pm to let u know.my outcome and hopefully stop me from running away if.its bad news. Im 48 years old and i want to and need to visit my kids and grandkids before anything bad can happen to me. One in Arizona, ones in Kentucky, and my oldest is in Alantic city N.J. i havent told tjem about how i been feelimg or.goimg to.doctors yet. I will if i need to
I just dont want them.to.worry aboit me. Im sure they all have their own family issues and dont meed me.to put gloom on them.
Is that wrong or selfish to do
That?... Hope you all are good today and i will pray for your health and family to.ne good. God Bless u all.tyš
Rita Savelis I understand your not wanting anyone (family) to worry about you. I was that way. But then I was made ... Read more
Rita Savelis I understand your not wanting anyone (family) to worry about you. I was that way. But then I was made aware that I can't decide or control how others will react. And perhaps i should let them experience this in their own way. What you are feeling is not wrong or selfish. It's a hard situation. Any decision you make is the right one for you. Take care. Wishing you the best.
Don Brown Thanks Ms. Rita. I thought it rude if i say some of the hard stuff or the not so nice stuff or the bl ... Read more
Don Brown Thanks Ms. Rita. I thought it rude if i say some of the hard stuff or the not so nice stuff or the bluntly straight out it is going to hurt like hell and ur life will change stuff... Thank u for opening my eyes with ur honesty. I had a bad day today and i will post about it later but just saw your comment to me and wanted to thank you..God Bless..ty
Trying to sleep and get some rest until my appt. Tomorrow with my new Doctors cardiologist and primary. Just from experience from my last 2 OHS i will be admitted ...Read more
Trying to sleep and get some rest until my appt. Tomorrow with my new Doctors cardiologist and primary. Just from experience from my last 2 OHS i will be admitted for IV diuretics for my water overload and possibly set up for a valvopastic procedure and maybe a IV heparin regiment.. Them go.from there.. That's where i start shaking and getting scared. Not to repeat to u what i might of said in a past post but i jave done and followed this procedures twice and both of they ended with my first and second OHS and a pacemaker to help 40% of my function.. I have read a connected with alot of this community's storys and their priceless wisdom and help that you all are giving me
I never knew this group of help was here. I dont do facebook so this is new for a older guy like me.. So honestly about tomorrows appointment and consultation at 12:45 pm. I will be update this story at 1:00 pm to let u know.my outcome and hopefully stop me from running away if.its bad news. Im 48 years old and i want to and need to visit my kids and grandkids before anything bad can happen to me. One in Arizona, ones in Kentucky, and my oldest is in Alantic city N.J. i havent told tjem about how i been feelimg or.goimg to.doctors yet. I will if i need to
I just dont want them.to.worry aboit me. Im sure they all have their own family issues and dont meed me.to put gloom on them.
Is that wrong or selfish to do
That?... Hope you all are good today and i will pray for your health and family to.ne good. God Bless u all.tyš
I am so glad i found a community that knows how i feel and can relate. I read your stories and comments to my wife and we both have alot more fight in this ...Read more
I am so glad i found a community that knows how i feel and can relate. I read your stories and comments to my wife and we both have alot more fight in this just from hearing from all you guys on here.. And u are right in the little time i been here i went from depressed to hopeless to askimg for opinions to finding a new Doctor that i feel has my best interest in my recover.. And tjat all happened because of you guys
I hope one day someone reads my story and realizes that it is their story too and dont feel alone in this. I got to be honest about one last thing.. If i have to have a third OHS this time i really will need everybody in this community to get me through it.. Thats my fear. So again thank you all and i will update as soon as i know anything new. Remember i think all of this community are my HEROS in the own fight with their OHS and recovery..God Bless you all.ty
Susan Lynn Don - We will get you through it. More importantly, you'll be ready to move forward with confidence ... Read more
Susan Lynn Don - We will get you through it. More importantly, you'll be ready to move forward with confidence and anticipation of all the wonderful years that are ahead of you and your family. Stay positive! You're waaay stronger than you know!
LINDA ROBERTS Wishing you good luck in the resolution of your heart problem.
Debbie Kelly We are all here for you, Don, and for your wife. Stay positive and feel free to express your feeling ... Read more
Debbie Kelly We are all here for you, Don, and for your wife. Stay positive and feel free to express your feelings, as often as needed.
Dan Vechiola We have your back Don. Keep marching and feel us marching right with you!
Well.. Just left my new Cardiologist Doctors office and i will say that she.(Dr.Susan Tamagni Kennedy Hospital Heart House affiliated) Has put me at rest with ...Read more
Well.. Just left my new Cardiologist Doctors office and i will say that she.(Dr.Susan Tamagni Kennedy Hospital Heart House affiliated) Has put me at rest with feeling and trusting that will get.me a better life. I will be admitted to the Hospital Tuesday March 26th for testing then cath pressure check that most possibility to do a Valvopastic Valve procedure. Was explained like doing a cath with a little balloon to inflate my 2nd tricuspid valve i had simce 2016.. Just worried because last time i had this procedure it was decided to have my 2nd OHS. Im really not happy about maybe (GOD WILlING..lol) having a third OHS.. But she had me feel calm and comftable and not.freaking out. Also when i get admitted she ordered a IV Lasiks to jopefully get this water weight off me. She looked at some of my old records and saw i did not lose any after 2016 surgery and said that my high dose that i have been taking has been negative to my kidney. As per my blood test records. Also looked at my most recent cath and ct test and seen alot of water inside. Im going on here sorry.. But she just made me feel way more comftable with her knowledge and her interest in making me Healther and not making think i was going nuts in my priblems i have been having. She explained that she would never talk bad about another doctor or their opinions bur also said that i should of had a more important after care plan in effect instead of all this then i had with my old Doctors. So i want to thank all you guys for giving me some discretion in finding a second opinion and better care then i have been getting.. Also i will be honest in saying im scared as hell that i might of my 3rd OHS. I just cant even fathom that right now.. But.one day at a time i guess i will deal with whatever the outcome will be...so 4 days away.. I think i have started replacing my depression to a better place but still scared to hell... I will update with anything new as i learn it.. Thank u again for ur help. God Bless you all and pray you feel well in all of.your recovery. Ttyl
Catie B Don, I hope you have an excellent cardiologist treating you now. And I pray they take extra good care ... Read more
Catie B Don, I hope you have an excellent cardiologist treating you now. And I pray they take extra good care of you this week! Hoping you will feel loads better soon.
Don Brown Thank you and i will update as soon as i know more. God bless u all.
Rob Sparling Don, keep on keeping on! Find your way to the answer, through Or over any obstacles and visualize yo ... Read more
Rob Sparling Don, keep on keeping on! Find your way to the answer, through Or over any obstacles and visualize your landing spot! Sounds like you are getting more comfortable with the care team. Keep asking questions and eliminate those risks that donāt have benefits! š
Diane Maher In only a few days, your story has changed from desperation and hopelessness to one of feeling more c ... Read more
Diane Maher In only a few days, your story has changed from desperation and hopelessness to one of feeling more calm and trusting. This is huge! Keep positive. Keep strong. Keep courageous.
First and foremost i want to say that i been reading alot of your stories and post. This is a new thing for me to learn about how mant of you guys are mt hero's.. ...Read more
First and foremost i want to say that i been reading alot of your stories and post. This is a new thing for me to learn about how mant of you guys are mt hero's.. I wish i knew this community when i went through mt tricuspid OHS's. Also reading your roads to recoveries is helping too. My last surgery was 2016 and im having some issues now and homesly i am scared as hell to even think about going through it all a third time. I called my cardiologist and my primary Doctors and discussed my issue's. Im told that maybe from being on my water.pills for so long.my body could.be immune from having them work for me. Its suppose to help my CHF to get rid of water build up. I have been fighting this water weight ever since my surgery. For almost 3 years all i do.is test after test and blood work after blood work. I have COPD on top of it so its reasoning goes back and forth between pulmonary and cardiology. I cant take it and me and my wife have talked and made a decision that i need another Doctor /Hospital 2nd opinion and aftercare that im sure i badly need. My current doctor doesnt even offer a cardiology rehab which i also believe i needed.. Now again it might sound like im looking for a magic pill or instant fix but im asking this community to help me answer if after 3 years of my 2nd valve transplant i really shouldnt be feeling or having these issue's? I havent lost 1 pound of water weight after 2016 surgery. I actually fained 35 to 40 lbs more. Im not a over eater or a bing eater. My wife cooks good low fat and sodium meals for dinner and i dont eat junk food(might sneak a little). If u saw pictures of me before my second surgery and how i look still now u would see ballooned legs(left leg worse) and my face blown up. I know the pit test vert well and its never changed for me. Do you think i should switch and look for a better affiliated cardiology Dotor? My wife researched and thinks Kennedy hospital in Washington township NJ is a good pick for me. I know most of the community here is not in New Jersey but im taking a chance and just asking. So hopefully i get your opinions and wisdom and thats what i need now. I need to do this in the next 24 hours because its just getting harder and harder in my everyday routines. I mean steps, walks, etc... Thank you all and God Bless. Also know that you guys are heros in my book!!!!
Gregory Ballard I have had OHS 5 times. You need to find a surgeon who is confident in doing valve re-do's and does ... Read more
Gregory Ballard I have had OHS 5 times. You need to find a surgeon who is confident in doing valve re-do's and does a lot of them. My Dr. is in CA at USC (Keck Medical Center) Dr. Vaughn Starnes. Might be worth the trip out there although I'm sure you can find someone closer to you. For now maybe get another opinion from different Cardiologist? You can do this- Stay Strong and keep us posted.
Susan Lynn I agree with Gregory. If you're looking for something in close driving distance, I suggest you go ... Read more
Susan Lynn I agree with Gregory. If you're looking for something in close driving distance, I suggest you go to Philadelphia. You have University of Pennsylvania, Jefferson, or my hospital Main Line Health Lankenau Heart Pavilion. All of these choices provide exceptional cardiac care. Best of luck.
I woke up ar 3am after falling asleep around 12 midnight. Been trying to take little naps to lose thia foggy state of mins im in today. I know i said it before ...Read more
I woke up ar 3am after falling asleep around 12 midnight. Been trying to take little naps to lose thia foggy state of mins im in today. I know i said it before but im sick and tired of.being sick and tired. I have a major headache right behind mu eyes that wont stop and took all my meds and feeling dehydrated from my water pills and major.thrist. i called my cardiologist to tell them im feeling like this and i ger a nurse practitioner telling me to go through their ER room to maybe get admitted and IV water diureticas. This is where my mental block comes up. In every hospital stay it always leads to another OHS and i cant and wont make it through a third valve transplant. I barely made it.back from my 2nd one. I wont put my wife and.family through that all again. So i try to fight my body and push myself to look normal
But wy wife tells me the more i try to do stuff the more.it.makes it evident that my all around health looks worse. She also is there to do my weight check and sees im still gaining more then breaking even somtimes betwwwn my dry and wet weight. I also think this is one of the main reasons my depression ia getting bad.. I feel.like half of a man when i cant help and support my own family. I never ask for help or charity from anyone so its hard to just accept it. Im 48 years old and was raises old school by my tuff un emotional state cop of my father and grandfather.. Both state police retired. We wernt allowed to show our emotions and could not cry about anything and trust no one. We didn't even said i love u in our families. Men dont cry we just mocw on to our.next.job and support our own family under our roof.. Now that i write it it really does look like i need to seek mental help too(just for depression i hope.. š) i thank you for just reading my post an stuff. This is really starting to feel like a goos outlet for me. I dont have to lay it all on my wife.. Jusr FYI ahe never said or acted like she dont want to be there for.me.. She is my best friend to me and my rock in all this.. Its just hard to think of all i put on her.. I guess thats how love works someway.. Thanks for reading and would love any comments or opinions from all of you guys. It makes.me feel like im not alone in all of this.. Plus i need help on how to search for a second opinion if i need it... TY and God Bless u all.
Diane Maher I know you will have difficulty with what I am going to suggest but it is based on my own experience ... Read more
Diane Maher I know you will have difficulty with what I am going to suggest but it is based on my own experience after my OHS.....please act on the advice of your nurse practitioner. Shortly after my initial discharge I had to be readmitted for 10 days via ER......electrolytes, potassium, magnesium, iron all extremely low and causing my whole system to go into a tailspin. At least take the first step and have some major blood work done. I agree with Susan Lynne who posted in your last journal entry....medical intervention seems to be needed. Best Wishes.
Catie B I agree with Diane. Don, rarely does procrastinating make any difficult situation better and with hea ... Read more
Catie B I agree with Diane. Don, rarely does procrastinating make any difficult situation better and with health issues, waiting and not acting can allow things to get worse than they need to. I hope you will get seen and receive help for both the physical struggles and for your depression. You are worth taking care of yourself and not letting your symptoms get out of hand. I hope things ease soon for you on every level.
Valerie Herndon-Vitarella The way you describe the pain behind the eyes might mean you have a fever. So, maybe an infection goi ... Read more
Valerie Herndon-Vitarella The way you describe the pain behind the eyes might mean you have a fever. So, maybe an infection going on which you really need to see a doctor to make sure. Please go to ER, urgent care or at least your regular doctor and follow up. Hoping you feel better soon!
Don Brown I was just reading all your commets and.i am really feelimg like.im just not going crazy. I have a ph ... Read more
Don Brown I was just reading all your commets and.i am really feelimg like.im just not going crazy. I have a phone appt. today and then will be setting up adimittin2to hospital and full blood work up. I just hope it pans out good for me.. I am.so gratedul for.all your personal experiences because at least you guys have been through it and can give me tips and advice. I will update after ii see how the phone call goes today.. Im not trying to be afraid and a complainer its just.i hate the hospital so much it scares me evertime i go in
But i am still here so that's good and meant to for my famil too.. Thank u again. I will update later. God Bless u all.
Catie B I hope things go very well and that you get the answers and the help you need, Don!
I have joined this web site less then 24 hrs. ago and i cant believe how fast and how real all your comments that you guys are leaving for me. I was just telling ...Read more
I have joined this web site less then 24 hrs. ago and i cant believe how fast and how real all your comments that you guys are leaving for me. I was just telling my.wife a little about the website and what i was reading and just checked and was overjoyed by you all. Im happy that its just all in my head and im not.just be depressed for no reason. I been going through this for almost 8 years now(last 2 years really been the worst) and been trying to do everyrhing my doctora tell or suggest to me. I need you to know that when i got sick in Dec of 2015 i was switching homes and moved to differnt state. I had to find a new doctor and was about 9 to 10 months of not seeing anykind of doctor and tjought i was going to be fine. So when my weight gain changes so quick and my sluggish feeling started i went to new Cardiologist, Pulmaonary and new primary Doctors also. So at that point i was about 280ish lbs. and thats how they percevied my.i assume. But.3 lbs a night gain finally pushed them for.my second valve transplant. Also all my doctors were in the same Hospital that i was going to. All Cooper Hospital. Camden NJ.( in case anyone knew it) So after my return home i was not losing any of tje water. I asked my home nurse then referred my to my doctors. I told my heart doctor and did test and said it might be pulmonary issue. I went to pulmonary and they said it.was.a.heart issue. So back and forth and many testing for last 2 years here i am at present. If i take too much water pills my.kidney function messes up and now my doctors say that maybe a bypass weight surgery might help.me. I went.to the bypass doctor and after he saw my habits and test he said maybe in 6 months after i pass all his test we would meet again and see if i should get.the bypass surgery or.not. i seriously cant go like this for six.more months and just hope. I talked to my cardiologist and told them how i felt about it and they added depression to my.medical charts now. Also they only see me every 60 days or so due to her appointment schdule so suggested thataybe the lasiks im taking that my body might built up a immunity to them and should go through er so i can start getting iv lasiks and all this becauae of how my insurance works they said. I told her i rather have more QUALITY of life then worring about the QUANTITY of life. But that makes me selfish to my wife and family so here i am and feeling so lost. I will tell you honestly how i feel and please know i am not.looking for pity or sympathy in sharing this all with u. So remember i have copd, congestive heart failure left side, high blood pressure and on cpap machine for sleeping a pacemaker which supports 30% in which what they explained to me. Soo with that all said here my daily day. Wake up and fell dehydrated and foggy like almost a hangover frame of mind. Light breakfast then take medications. Cant close my right hand due to swollen affect from water retention and then weigh myself. Then try to take the stairs up to bathroom. Stairs are.the worst.. Have to take a break half way through maybe a asthma inhale also. Clean up then water pills kick in and going once a hour.maybe couple times. My left leg pita really bad and looks twice the size then my right side. Doctors say due to.my CHF. I feel like i am walking on stumps for legs and feet. I walk ablut half.a.block and i get really winded..
Im so.sorry.. I know i can go on and one telling u my health..but i understand you arent my doctors and i know there is no magic pill that i can take and feel better. I guess i am just.looking to see if this is all normal and suppose to be how my life will always be. If so i will make accommodations. Or.i will.try.to look for a second opinion. I dont want.to keep putting my wife through all this and she has never.ever complains or said anything bad towards it. I guess its in my own thoughts and where my depression kicks in. Im 48 and fell im way too young foe all this. I read some of ur stories.and see there is younger then myself. I also read some of your journeys and i commend you. I will pray for.you all. One reply i had stayed that he is waiting to have a surgery and i just wanted them.to know that i wish nothing but the best for u and having it done it saved my life and gives me hope of feeling better. Please dont ever let my problems or complaining let you to re think ypur own situation. I am looking for help to deal with my issues and see if anyone can relate so i dont feel so alone or crazy. Again thank u all for just commenting to me. I think this website and community is what i needed. For information and for help. I hope all your stuggles and meant with your best wishes. Hope to look for more comments and stories little later. Thanks and God Bless all.
Susan Lynn Don - Glad you feel welcome here. We may all have traveled on slightly different paths that brought ... Read more
Susan Lynn Don - Glad you feel welcome here. We may all have traveled on slightly different paths that brought us to this site, but it's definitely a place where we can understand each other's challenges and triumphs. Don't give up on having the quality and quantity of the life you want. The process of feeling better may be down the road, but you will get there. Keep looking for the physicians that will give you the care you need - having confidence in your medical team makes all the difference. We'll be right here if you need us, too! ā¤
Hoping someone else feels like this and has some ideas i should do. Thanks for ur time
Susan Lynn Don - Welcome. I am so sorry to read the struggles you've been through. The depression you're feeli ... Read more
Susan Lynn Don - Welcome. I am so sorry to read the struggles you've been through. The depression you're feeling is very normal. I know it's easy for me to say, don't be afraid of the hospital - you have many legitimate reasons that you associate bad experiences with your previous stays. But, if you want to feel better, that may be a good start. With the amount of excess fluid you're retaining, you are definitely going to feel exhausted. It will overtax your heart, lungs, and make breathing difficult. You may feel like you're jeopardizing your well being by not going for treatment, but based on your description it seems that medical intervention is necessary. Explain your fears to your physicians - maybe they can do something to ensure that your trauma is kept to an absolute minimum. You will get back on track and feel like yourself again. The first step is always the most difficult. Best of luck! We're with you and will support you through it. You've come to the right place.
Mike Roskowinski Wow Don what a story. Welcome to the community. I am sorry to hear all the struggles that you have ... Read more
Mike Roskowinski Wow Don what a story. Welcome to the community. I am sorry to hear all the struggles that you have faced in the past with your surgeries. This is all new to me as I am still waiting on a day to have my first one so I am not going to be able to help you with any post op feelings at this point. I am not sure where you have gone yet for medical advice but I would suggest taking a trip to the Cleveland Clinic or the Mayo up here in Minnesota. Maybe they are not finding the issue that is causing this problem for you. I have a friend that went to 5 different places because his wife was having issues and they finally found out what the problem was. There should be someone out there that can help you out. Take the time and spend the money to get other doctors to look at you cause your life is worth it! We will pray for you in our family prayers that you can find the problem and get it fixed. Don't give up you will find your answers!
leslie terjesen Sorry about your continued health issues. When I was getting ready for my new aortic valve replaceme ... Read more
leslie terjesen Sorry about your continued health issues. When I was getting ready for my new aortic valve replacement, one month ago tomorrow, I went to get a facial. The girl I use told me her ex is a therapist who had had a cardiac issue, became depressed, saw an expert in cardiac depression, went back to school himself and now treats that. She said if I found myself depressed which I have not, she'd call him for me. Since I sm not a doctor abdceill not tell anyone what to do, if it was me, I'd be getting a second and maybe third opinion . Also, if it was me I'd be seeing a therapist who deals with cardiac depression. It might be good to talk to a professional. Also re the third surgery, remember, three times a charm! This is a wonderful website but don't forget the professionals you may need now.
Don Brown Thank you. You definitely give me a idea now.