Don's Journal

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

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.

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

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

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

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

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

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

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

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..

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. 😥

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 🍸 🍺 🍷 🍺 🍸 🍷. 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. Ty😎.. 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

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

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.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 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.ty😎

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

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

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!!!!

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.. 😆) 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.