Just got out of the hospital from being there for 3 days after being in a adrenal crisis after running out of my steroids pro tip never run out of your medicine ...Read more
Just got out of the hospital from being there for 3 days after being in a adrenal crisis after running out of my steroids pro tip never run out of your medicine my kidneys shut down but thankfully made a full recovery and my cardiologist was on service and took great care of me I’m so thankful for him how has everyone been
Kimberly Eisenhut Jose! I was just thinking about you yesterday and today, ready to ask to see if anyone had heard fro... Read more
Kimberly Eisenhut Jose! I was just thinking about you yesterday and today, ready to ask to see if anyone had heard from you! Yippie!!! So happy you are home and on the mend :) How did everything go other than the kidney problem? You are such a strong person and I admire your strength and great attitude. Sending big hugs and good wished to you today
susan harris jose, you’ve had quite a journey. i’m so happy to hear you’re out of hospital. keep up the lear ... Read more
susan harris jose, you’ve had quite a journey. i’m so happy to hear you’re out of hospital. keep up the learning, the positive attitude, you can f do i this!
Sorry for the late update but I got discharged from the hospital last Friday and this Thursday marks 1 week since my surgery I had a tpvr and 2 stents placed ...Read more
Sorry for the late update but I got discharged from the hospital last Friday and this Thursday marks 1 week since my surgery I had a tpvr and 2 stents placed in my homograft I’m still in pain since they went through both thighs but slowly but surely I’ll recover I’ll be on blood thinners for 3 months than it’s baby aspirin for the rest of my life I see my cardiologist April 8 6 weeks post op I want to say thank you to each one of you for being here for me during these stressful and emotional times !
my phone number is 346-332-6581 if any one wants to reach out to me while I’m in the hospital my surgery isn’t until Thursday here’s a picture of me ...Read more
my phone number is 346-332-6581 if any one wants to reach out to me while I’m in the hospital my surgery isn’t until Thursday here’s a picture of me in my hospital bed I’m just relaxing trying to get some rest and ease the pain from the central line I’ve lost weight from 275 to 245 30 pounds in 3 months my goal is 180 I get my tpvr Transcatheter pulmonary valve replacement on Thursday February 27th
Robert Miller It looks like you are doing pretty good. My brother was a bit on the heavier side and had to amputate ... Read more
Robert Miller It looks like you are doing pretty good. My brother was a bit on the heavier side and had to amputate a toe and some more probably due to diabetes. Luckily, no amputation of the entire foot. Just like you, he lost a lot of weight after that. So I think you are doing all the right things. What really helped my brother is having one of those glucose monitors that give him constant feedback. So now he has a much better understanding what food is affecting his blood sugar level. There is some interesting stuff you learn. I know that wasn't heart related but I just wanted to put that out there. I am wishing you all the best. Btw, do you have anyone that accompanies you on this journey?
I’m being admitted to the hospital today a week early for optimization for my kidneys I know I haven’t posted in a while I’ve been dealing with heart ...Read more
I’m being admitted to the hospital today a week early for optimization for my kidneys I know I haven’t posted in a while I’ve been dealing with heart failure I hope everyone has been doing well they had a conference about my case and decided to replace my valve through my thigh I’m stressed and nervous about this as there going to be putting a central line in and those hurt when they put them in but wish me luck it just sucks that my pulmonary valve failed 3 years after my Ross surgery but thank god my pulmonary autograft is doing amazing and fine that is such a blessing! I’m going to advocate for myself and make sure they enroll me in cardiac rehab my tip to any of yall always advocate for yourself you know your body the best and if you get any cardiac procedures make sure they enroll yall in a cardiac rehab
they had to stop the surgery the first time in January they said my heart couldn’t handle the stress of the surgery hopefully this time everything goes well and they don’t have to stop the surgery there doing it the same way
Susan Lynn Jose - Thanks for the update! You're so brave to be facing more procedures and I'm so happy to rea... Read more
Susan Lynn Jose - Thanks for the update! You're so brave to be facing more procedures and I'm so happy to read you're advocating for yourself!! Yay!! We'll be sending you positive thoughts and prayers - and - very anxiously awaiting your post-op good news! All the best, Jose!
susan harris you are at a very very good hospital! trust that they will do what is needed. you are in good hands! ... Read more
susan harris you are at a very very good hospital! trust that they will do what is needed. you are in good hands!
J Alexander Lassally Hello Jose - Your story is moving to me, and I wish you nothing but the BEST of luck in this endeavor ... Read more
J Alexander Lassally Hello Jose - Your story is moving to me, and I wish you nothing but the BEST of luck in this endeavor. I'll be rooting for you, absolutely.
If you are nervous about central line, by all means share your nervousness and ask them for an appropriate sedative before they start this. I had a nice sedative (versed - midazolam) and do not remember any aspect of this part of pre-surgery prep. If you are nervous all of the week, ask. There is no reason to punish yourself !
Again, all the best.
Robert Miller I have not experience with that "central line" but for my first surgery they did put up some line in ... Read more
Robert Miller I have not experience with that "central line" but for my first surgery they did put up some line in my groin. I had a pretty big black area of probably a 4" radius. It seems there was some bleeding going on. However, there was no pain at all. If you have pain, you can ask for pain killers. One big question for me would be, do they think they can conduct the full surgery and not stop it prematurely as the first time? In any case, I wish you all the best.
Rose Madura God bless you JJ. You are such a trooper. Stay strong and know we are rooting for you and praying fo ... Read more
Rose Madura God bless you JJ. You are such a trooper. Stay strong and know we are rooting for you and praying for you. Please keep us posted. 💪❤️🩹🪖
Pamela Gregory Sending my best thoughts and prayers you way for this surgery to be successful!
Kimberly Eisenhut Jose, I will have you in my prayers tonight and will look forward to your updates after your success... Read more
Kimberly Eisenhut Jose, I will have you in my prayers tonight and will look forward to your updates after your successful surgery
So it’s been a while since I’ve been on this page but I wanted to give yall an update I’m cardiac procedure done at Texas children’s on January 22nd ...Read more
So it’s been a while since I’ve been on this page but I wanted to give yall an update I’m cardiac procedure done at Texas children’s on January 22nd being admitted the 20th . I’m not going to lie there’s been a lot of crying ever since they diagnosed me with heart failure my lvef is 40% main reason for the tears is the regret that I don’t want to go through the cath and be told I need to replace my pulmonary autograftWhich is my native valve and I don’t want to lose my native valve but like my sister said don’t cry over what we can’t control I’m also having a stent put in the pulmonary homograft since I have severe pulmonary stenosis I will say one thing to y’all don’t take life for granted life is beautiful and I’m so grateful for everything They won’t know if I need open heart surgery until after I get my cath procedure done wish me luck everyone! I’m posting a picture of everything they’ll be doing I just sometimes get overwhelmed had I chosen a regular avr over a Ross I wouldn’t be in the predicament of possibly losing my native valve but I will never regret my Ross procedure
Ana Brusso Hello JJ, will lift you up in prayer for your procedure to be successful. God bless you and keep us p ... Read more
Ana Brusso Hello JJ, will lift you up in prayer for your procedure to be successful. God bless you and keep us posted. 🙏❤️
Rose Madura God bless you JJ. I agree with your sister. Stay strong and don't assume the worst. I will be prayi ... Read more
Rose Madura God bless you JJ. I agree with your sister. Stay strong and don't assume the worst. I will be praying for you.
susan harris you have great doctors and great hospitals. you’re in great hands. i’m just sorry you are going t ... Read more
susan harris you have great doctors and great hospitals. you’re in great hands. i’m just sorry you are going through this so shortly after ross. don’t worry about tissue valve in pulmonary position. many get this during ross when aortic is too damaged.
Hello everyone I’m in moderate to severe pulmonary stenosis and moderate pulmonary regurgitation just 3 years after my Ross I have to travel to Dallas as ...Read more
Hello everyone I’m in moderate to severe pulmonary stenosis and moderate pulmonary regurgitation just 3 years after my Ross I have to travel to Dallas as they are the only ones that take my Medicaid and the hospital in Houston don’t but I was admitted to Texas children as a emergency stay since I had a arrhythmia and they want me to basically be at deaths door before they do anything needless to say please wish me luck when i go to Dallas that I can get the surgery I need I feel weak and tired all the time and passed out after minor exercise to make a long story short all the adult congenital programs in Houston including tx children don’t take my Medicaid so from now on I’ll be going to ut southwestern I meet my new cardiologist in December wish me luck that she agrees surgery is the best thing to do!
Allen Carkner Sorry to hear this! Hope that can be a quick catheter valve replacement of the donor valve. Wish you ... Read more
Allen Carkner Sorry to hear this! Hope that can be a quick catheter valve replacement of the donor valve. Wish you the best and for safe and timely care.
Rose Madura JJ, you really have been through it. And you have such a good attitude. That will help you. Praying ... Read more
Rose Madura JJ, you really have been through it. And you have such a good attitude. That will help you. Praying you get the care you deserve and soon. God bless you. 🙏❤️🩹
Deena Z Jose, as Rose said, you have been so much and at such young ages. I will say a prayer for you. It... Read more
Deena Z Jose, as Rose said, you have been so much and at such young ages. I will say a prayer for you. It's disheartening (pun wasn't intended) that nationally renowned hospitals don't take Medicaid, given it is a life saving operation. Take care, keep us updated.
So I live in Houston and none of the hospitals take my Medicaid and the ones that do don’t have a cardiologist that specializes in the Ross procedure and ...Read more
So I live in Houston and none of the hospitals take my Medicaid and the ones that do don’t have a cardiologist that specializes in the Ross procedure and adult congenital patients so I have found an amazing cardiologist in Dallas at ut southwestern that is board certified in adult congenital heart disease and will be my new cardiologist any advice and is it safe to travel and have my cardiologist be 3 hours away from me I’m willing to travel for this has anyone traveled for there care ?
Robert Miller I spare you my story but I didn't fly across the country (some 6h). My case was a bit special. For mo ... Read more
Robert Miller I spare you my story but I didn't fly across the country (some 6h). My case was a bit special. For most people it should be perfectly fine to fly for 3 hours to get the best care/surgeon. There are obviously implications. If you have someone that cares for you, she/he will have to travel there and stay in a hotel. And you will need someone to help you with the luggage as you can't lift much if you got OHS. Airport personal should be able to help with that. It just takes more logistics but if you believe you can better care there, then I would do it. Btw, how do you qualify for Medicaid? You seem too young for Medicaid. Is it due to income, disability or something like that? No need to answer if you don't want to. I am just asking because I am exploring insurance options.
As I spoke with my new cardiologist I felt a bit odd and regretful about getting a Ross procedure I wish I would of gotten a regular valve replacement as my ...Read more
As I spoke with my new cardiologist I felt a bit odd and regretful about getting a Ross procedure I wish I would of gotten a regular valve replacement as my cardiologist told me a Ross procedure turns a one valve disease into a 2 valve disease so that made me feel uneasy and uncomfortable about needing 2 open heart surgeries in the future one for the left side and one for the right side. Has anyone had a Ross procedure and if so what are y’all’s experiences with it and if so what interventions have yall had if I’m being honest I like my cardiologist and in the beginning I felt good about a Ross but things change and I just wish I was more informed before getting it done sure a savr doesn’t last as long as a Ross but like the cardiologist said now I have a 2 valve disease
Kimberly Eisenhut Jose, I am so sorry you are now facing another surgery in the future. I am sure your Dr will monit ... Read more
Kimberly Eisenhut Jose, I am so sorry you are now facing another surgery in the future. I am sure your Dr will monitor and advise you accordingly. I cannot comment on the procedure, as I have not had experience with it. I am sure there are others here that will respond to your post and shed some light on their own experiences with your issues now. Blessing and best wishes.
Marie Myers Did the new cardiologist say anything is wrong with your heart right now or was that just his genera ... Read more
Marie Myers Did the new cardiologist say anything is wrong with your heart right now or was that just his general feeling about the Ross Procedure?
Marcus Krauss Maybe this study from the Journal of the American College of Cardiology will make you feel better abo ... Read more
Marcus Krauss Maybe this study from the Journal of the American College of Cardiology will make you feel better about having had a Ross Procedure. Generally the long term patient outcomes are better with a Ross over traditional aortic valve replacement. https://www.jacc.org/doi/10.1016/j.jacc.2021.12.026
Allen Carkner Sorry to hear this has been your experience. However, I don’t think current Ross research supports ... Read more
Allen Carkner Sorry to hear this has been your experience. However, I don’t think current Ross research supports the two valve disease problem. It seems that way intuitively as it is far more surgery in the short term but it seems that often the Ross procedure can have excellent long term outcomes. I home your valves and heart are doing well. Only time will tell I suppose with my own case. I had a Ross early 2023 and so far so good.
Rose Madura JJ, try not to worry too much unless he specifically said something was wrong (as Marie mentioned). I ... Read more
Rose Madura JJ, try not to worry too much unless he specifically said something was wrong (as Marie mentioned). I believe Adam has had his Roast for 20 years (give or take a few).
Pamela Gregory I could be wrong but I believe that the reason the Ross Procedure is good for young patients is beca... Read more
Pamela Gregory I could be wrong but I believe that the reason the Ross Procedure is good for young patients is because the pulmonary valve does not have to work very hard. This will allow it to generally work at least as long or longer than the replaced aortic valve. Also using your own valve for the aortic valve allows that to work much longer than a tissue replacement from a cow or pig. Usually this is an excellent choice for young patients like yourself
susan harris jose, i’m mom of a 26 yr old who just got told he is not a candidate for Ross. Has to have mechanic ... Read more
susan harris jose, i’m mom of a 26 yr old who just got told he is not a candidate for Ross. Has to have mechanical. Based on research i’ve done for years, I’d literally give my right arm for my son to have Ross. Trust you made a great decision and had an absolutely fantastic surgeon.
susan harris just thought about that post: i’d give my life for him to have Ross and i really mean it!
Hi I hope everyone has been good, I know it’s been a while I haven’t forgotten about yall my life has just been chaotic and quite messy in June of this ...Read more
Hi I hope everyone has been good, I know it’s been a while I haven’t forgotten about yall my life has just been chaotic and quite messy in June of this year I ended up running out of my prednisone for my kidney disease since I have. A autoimmune kidney disease and running out. Put me into an adrenal crisis which in result put me into kidney failure and heart failure my potassium was 7 and anything above 6 is critically dangerous meaning your at spontaneous risk of cardiac arrest I was in the icu for a week And regular floor for one week my tip to anyone is always communicate with your doctor and never run out of your medicine ! Now on to the positives and successes in my life which I love sharing with yall I’ll be losing my mothers insurance in 3 years once I turn 26 I’m 22 turning 23 in September. I was able to find a new adult congenital cardiologist at memorial Hermann in Houston Texas who takes my Medicaid so I’ll be able to see them for life and than get my procedures done there this is a huge blessing for me ! on to my second success my Medicaid covers mounjaro and ozempic for my heart condition to help me lose weight! and finally I’ll be visiting my brother who’s in the army in Germany from August 27-October 4th his fiancé will be helping me lose weight taking me to the gym daily I truly miss my brother ! And love him ! Exited to heart from yall
Rose Madura Good to hear from you JJ but I'm going to "grandmother" you a bit and tell you to always take your me ... Read more
Rose Madura Good to hear from you JJ but I'm going to "grandmother" you a bit and tell you to always take your medicine as prescribed and never run out of it. I'm happy that you are better now and going to get to see your brother. Be sure to check with your doctors about the weight loss program before you start. (oops - grandma moment again). I appreciate hearing from you and you are very resilient. I am doing very well. My husband and I went to California on vacation in June and had a marvelous time. It's beautiful out there. Stay strong and stay well! God bless you. Have a safe and enjoyable trip to Germany.
I hope everyones Thanksgiving was good I spend mine in the hospital just got discharged on the 30th turns out I have acute heart failure there treating me with ...Read more
I hope everyones Thanksgiving was good I spend mine in the hospital just got discharged on the 30th turns out I have acute heart failure there treating me with torsemide These 2 weeks in the hospital have though me life is a gift don't overwhelm yourself with the future live in the moment and take everyday as a reminder of how great life is my valves are doing ok in just fluid overloaded right now I hope with some time and recovery everything will go back to normal and heart failure will be a thing of the past for me ! How's everyone doing !
Rose Madura Oh JJ, I'm so sorry you've been in the hospital. You have been through so much. As usual, your advic ... Read more
Rose Madura Oh JJ, I'm so sorry you've been in the hospital. You have been through so much. As usual, your advice is well beyond your young years. Praying you'll get better soon. God bless you!
Delise Becker Hang in there, Jose. Your positive attitude will help you as you recover, and this community will be ... Read more
Delise Becker Hang in there, Jose. Your positive attitude will help you as you recover, and this community will be here to support you.
It's been about a year since my ross procedure and I have to say things have been tough adjusting to my new cardiologist and being resilient in my struggles ...Read more
It's been about a year since my ross procedure and I have to say things have been tough adjusting to my new cardiologist and being resilient in my struggles and just learning that I have the right to advocate for my healthcare and to have my expectations met and not receive subpar care due to differences in opinion I would like for everyone who has been following me along my journey to know it's your health your decision and life and you and your team of doctors must decide what treatment is best for you because at the end of the day it's your life and what fits the best for you love you all and wish everyone a good week
Grace Mason Good for you Jose! Be your own best advocate ❤️❤️
Ana Brusso JJ you are a tough kid. Continued good health and recovery ❤️🩹🙏👍
Rose Madura Great advice JJ. You have been through a lot and are much wiser than most people your age. God bless ... Read more
Rose Madura Great advice JJ. You have been through a lot and are much wiser than most people your age. God bless you on stay strong! ❤️🩹
Klara Čičić Dear Jose, it's great to hear from you! I guess it's the same issue across the globe. Sometimes you h ... Read more
Klara Čičić Dear Jose, it's great to hear from you! I guess it's the same issue across the globe. Sometimes you have to stand up for yourself in healthcare to be heard and appreciated. Best of luck to you!
Deena Z Hear ya, Jose. Good for you! Thxs for the share.
It's been a while since I've posted here but I recently got approved for Medicaid and had to change cardiologist hopefully my new one is as great as my old ...Read more
It's been a while since I've posted here but I recently got approved for Medicaid and had to change cardiologist hopefully my new one is as great as my old one wish me luck !
Rose Madura Good to hear from you JJ. Thanks for the update. Stay strong.
Marie Myers Hope you get a great check-up from your new cardiologist !
Grace Mason 🤞hope you are happy with your new cardiologist Jose. Good to hear from you.
Greg Lewis Why do you have to change your cardiologist? I'm Just curious.
I had my one year post of echo of my heart and my MRI is postponed until July 17 due to scheduling and my visit is postponed until September 13 all I have to ...Read more
I had my one year post of echo of my heart and my MRI is postponed until July 17 due to scheduling and my visit is postponed until September 13 all I have to say my aortic valve aka my pulmonary autograft is doing amazing there is no gradient and the mean gradient is 3 I just have to say I'm truly amazed that for the first time in my life my valve numbers aren't considered mild after surgery rather they are now considered in the normal criteria I feel ecstatic that my surgery ended up being such a blessing and making my heart pump easier and overall a happier heart ❤️
Hi it's JJ haven't been on the site in a while I've been busy with my health , just arrived in Rochester MN for the mayo clinic for my kidneys, how has everyone ...Read more
Hi it's JJ haven't been on the site in a while I've been busy with my health , just arrived in Rochester MN for the mayo clinic for my kidneys, how has everyone been ? I'll be honest this year has been hard for me with everything going on I'm approaching one year post ross procedure July 5 will mark one year , and I have to say I appreciate all the support I've received on this site and from the heart community getting a Ross procedure and finding the right surgeon wasn't easy but I fought for myself advocated to get the surgery and with the help of this site and Adam I was able to obtain my surgery my autonomy I'm forever grateful for this place this community I've grown as a person and my surgery has transformed my life because at the end of the day it's more than a surgery it's a life your fixing a life your giving stability a sense of normality to long story short this year has been transformative and amazing I'll never be able to completely thank my surgeon my team for giving me my life back I'll show my gratitude by living my best life and keep progressive towards a better tomorrow and health ❤️
Ana Brusso So good to hear from you JJ. Keep up the good work. We are here for you. God bless you
Rose Madura Great to hear from you JJ. That's a great post with great knowledge about life. You were a perfect ... Read more
Rose Madura Great to hear from you JJ. That's a great post with great knowledge about life. You were a perfect example of advocating for yourself and now look at you! Great picture too. God bless you.
Klara Čičić So good to hear from you! I remember that post when they misread your echo, I was so worried. But the ... Read more
Klara Čičić So good to hear from you! I remember that post when they misread your echo, I was so worried. But then everything turned out well! You have such a positive attitude and it keeps you going. That's the way to go. Keep us updated.
Andrew Dial Absolutely amazing. Thank you for the update and glad things are going well :)
Susan Lynn You're wise beyond your years, JJ! Please keep usposted on your progress.
Haven't really been on here in a while I've been busy with college How has everyone been ? I ended up scheduling my follow up MRI and echo 1 year post ...Read more
Haven't really been on here in a while I've been busy with college How has everyone been ? I ended up scheduling my follow up MRI and echo 1 year post ross for this July locally to take some of the financial strain off and will instead do a virtual visit with my surgeon fingers crossed everything comes out well! Also any tips for a treadmill exercise test hope I last on it !
Rose Madura Hi JJ, it's good to hear from you. Glad you are getting back to some normalcy. God bless you!
Brady Busch Hello Jose, If your question is about a treadmill stress test,I had one before surgery.Unsure of w ... Read more
Brady Busch Hello Jose, If your question is about a treadmill stress test,I had one before surgery.Unsure of what to expect,whether long and arduous,it wasn't.They attached some wires and then go slowly,with a little incline at times.The doctor stood behind me and asked me,how I was doing.Maybe 15 minutes,but it probably tells them important things.
Ana Brusso Hi Jose, good luck in college. Continued good health and God bless you
Finally have an update on my issue with my insurance I was able to get approved for financial assistance and get all of my imaging done and I was able to schedule ...Read more
Finally have an update on my issue with my insurance I was able to get approved for financial assistance and get all of my imaging done and I was able to schedule my follow up with my surgeon this upcoming July ! Sometimes all we need is a positive mindset to change the course of things !
Greg Lewis Well done, Jose!!! I agree whole heartedly!
Klara Čičić Jose that is great news! Thank you for the update. Always good to hear from you!
Patsy Stewart What a relief for you! Stay positive, Jose.
Richard Munson Positive mindset. Sounds like you get it. Nice going.
Rose Madura Way to stick with it JJ! Congratulations!
I've been having a hard time lately and will ultimately have to find a new cardiologist I had my 6 month follow up in December and now I have imaging scheduled ...Read more
I've been having a hard time lately and will ultimately have to find a new cardiologist I had my 6 month follow up in December and now I have imaging scheduled this following week and they don't want to work with me at all even when I just had my surgery 6 months ago the echo and consult together come out to 1200 even with insurance my insurance only paid 2000 of the echo ! Any help or advice!
Robert Miller I had a pretty rude awakening when I got a 2-view x-ray done due to some "complications" as I was doi ... Read more
Robert Miller I had a pretty rude awakening when I got a 2-view x-ray done due to some "complications" as I was doing to much after surgery. It cost me $1080. That's after the "discount" aka as agreed charge with the insurance company. That compares to approx. $130 for the 1-view x-rays they did in the hospital after my first surgery. I talked to to insurance company about this and the issue is that if you get anything done by the hospital it costs a lot more (about 4 times more from what I can see). I am told that's because the hospital has to cover all the uninsured people. But I suspect they also have a lot of other additional costs. The point is, if you need to get blood work, imaging, etc done do not use the services from the hospital. Use 3rd parties. Labcorp is a good option in our area for bloodwork. I am not sure about imaging but I have to look into this as I will have an ultrasound scheduled for next month (after my first surgery this didn't come up as an issue as I was already maxed out on my insurance but now a new year started with new deductibles).
Having said that, who is not working with you? Is it the cardiologist that doesn't want to submit the bill to the insurance company? Or is the cardiologist out of network? Or anything else?
Btw, the x-ray at the hospital was that "cheap" because the hospital hires a 3rd party to do the x-rays at the patient bed. That's why my rate was $130.
Susan Lynn Good advice, Richard. I can only add that you may want to question why tests or other treatment i... Read more
Susan Lynn Good advice, Richard. I can only add that you may want to question why tests or other treatment is being ordered. I think there is recent pressure on docs to bring in more revenue after the pandemic closures and slow return of patients to medical offices.
Robert Miller @Susan Lynn I believe that 3 months test are called for after surgery. After one year they go to chec ... Read more
Robert Miller @Susan Lynn I believe that 3 months test are called for after surgery. After one year they go to checks every 6 months and eventually annually. In my case they discovered leakage after 3 months of surgery. 6 months there was no improvement so a second surgery had to be scheduled. So based on my experience more frequent checks are valid after surgery.
Danielle Elizabeth I’d call the hospital billing department and speak with them. I’m so sorry you’re going through ... Read more
Danielle Elizabeth I’d call the hospital billing department and speak with them. I’m so sorry you’re going through this!
Priya A So sorry you’re going through this. Who does not want to work with you? I am confused because you m ... Read more
Priya A So sorry you’re going through this. Who does not want to work with you? I am confused because you mentioned surgery six months ago, but Cardiologist usually does not do surgery? Do you mean the surgeon who operated does not want to work with you?
I hope everyone had great holidays haven't been on much have been busy with my follow up for my heart but I'm glad to say this past Friday I past the 6 month ...Read more
I hope everyone had great holidays haven't been on much have been busy with my follow up for my heart but I'm glad to say this past Friday I past the 6 month mark no complications the first year after a Ross is the most important and critical one ! All I can say is having gone through my surgery last July and coming into 2023 strong made me feel good I learned how to be my own advocate and find the best surgeon for my particular surgery it's hard finding good quality care especially if your under the category of adult congenital cardiology! I'm thankful for all the friend and people on this site who have supported me through my recover I hope I keep doing good on my way to full recovery!
I'm extremely grateful and blessed to have had my surgery done by doctor Ismail El -hamamsy I truly wish and hope everyone who ever has to go through surgery is blessed with the best possible outcome and a surgeon they trust 🙂
Timothy Andre Congrats JJ, keep up the good fight. I'm glad you are doing well. God bless you
Klara Čičić Always good to hear your positivity, JJ! I am so glad everything is fine with your heart and hope it ... Read more
Klara Čičić Always good to hear your positivity, JJ! I am so glad everything is fine with your heart and hope it stays that way! Keep us posted! God bless you
Susan Lynn Jose - Glad you're doing so well! We truly are all fortunate to have supportive friends on this si... Read more
Susan Lynn Jose - Glad you're doing so well! We truly are all fortunate to have supportive friends on this site and many incredibly talented surgeons who have given us new leases on life! Wishing you continued good health!
Rose Madura JJ, so glad you are doing well. You are a true warrior. Stay strong!
Ana Brusso Congratulations JJ, you are doing great and know we are also grateful for you. Continued good health ... Read more
Ana Brusso Congratulations JJ, you are doing great and know we are also grateful for you. Continued good health and God bless you
Haven't been as active as I usually am I've been recovering finally back home in the hospital I ended up getting status epilepticus my first seizure in ...Read more
Haven't been as active as I usually am I've been recovering finally back home in the hospital I ended up getting status epilepticus my first seizure in 4 years there talking about a emu stay hopefully with a medication adjustment I'll be back to my old self !
I'm leaving on Sunday to go visit my grandmother What are y'all's plans for the holidays 😀? 🎄⛄
Greg Lewis Merry Christmas, Jose! To go 4 years with no seizure is amazing!! It's tough, cause your always w ... Read more
Greg Lewis Merry Christmas, Jose! To go 4 years with no seizure is amazing!! It's tough, cause your always wondering if today is the day you have one. I am going on 2yrs or so. Which has never happened. When I get it, it will be bad, though. I don't have full on, grand maul, but close, I think. I sure hope you feel better. Was it the length of time without one, that caused the Status Epilepticus? We go to my family's and the outlaws for Christmas. About an hour drive. ( everything is an hour from here ) Do you know where the Middle of knowhere is? ..welll that's where I live! Pretty sure I passed Santa on the road today! I should probably get up and get going. Pretty tired, my son and I jammed until like 1:00 am last night! Plus I did not wear my CPAP mask. Who can wear that thing?? People were not made to go to sleep with air blowing at them with a bubble strapped to their face!!🙄 So, have a good Christmas! Take care!
Jose Maqueda I feel you they told me I need a CPAP but trying to find a affordable CPAP machine/ center can be har ... Read more
Jose Maqueda I feel you they told me I need a CPAP but trying to find a affordable CPAP machine/ center can be hard also I think what caused the status epilepticus is that having gone so long without one . It's like a volcano erupting when I do end up getting one !
Deena Z Jose, gosh, you get tested and you continue to keep up your courage and positivity. Insurance will l ... Read more
Deena Z Jose, gosh, you get tested and you continue to keep up your courage and positivity. Insurance will likely cover the cpap machine.
Rose Madura JJ, so sorry to hear about this. Praying you don't have any more.
Klara Čičić JJ you are so optimistic and brave, I admire you! Hang in there...hopefully that is the last one! Mer ... Read more
Klara Čičić JJ you are so optimistic and brave, I admire you! Hang in there...hopefully that is the last one! Merry Christmas
Greg Lewis I know what you mean, Jose. It is like a Volcano! The longer without one the worse it is. I have to g ... Read more
Greg Lewis I know what you mean, Jose. It is like a Volcano! The longer without one the worse it is. I have to go hide in a corner. Can't find my house, barely. Etc. It is the scariest feeling I can have. The seizures terrify me. I would do surgery over a bad seizure. Maybe..lol
Marie Myers Hope you have a beautiful Christmas, Jose!
Had my first drink as a 21 year old lol I'm finally legal turned 21 2 months ago 9/12 I liked the strawberry seltzer the best but not too bad for a first drink ...Read more
Had my first drink as a 21 year old lol I'm finally legal turned 21 2 months ago 9/12 I liked the strawberry seltzer the best but not too bad for a first drink made me burp 😄🤠 great way to calm down after a stressful day of travel!
Patsy Stewart Happy belated Birthday, JJ!🎉🎵🎶🎊 Wonderful news that you’re home and got to finally cele ... Read more
Patsy Stewart Happy belated Birthday, JJ!🎉🎵🎶🎊 Wonderful news that you’re home and got to finally celebrate your birthday! Knowing me, I probably celebrated with a Coke~a~Cola….and it’s still my celebration drink. One mini can and I’m hooked for days! Lol!! 💃🏻
Spend a couple of weeks up in Minnesota for my appointments in mayo clinic ! Feels great to finally be able to go home ...Read more
Flying back home finally .
Spend a couple of weeks up in Minnesota for my appointments in mayo clinic ! Feels great to finally be able to go home ! Look a little rough for shape 🤠😄 need to shave 🪒
It's been a eventful couple of months to say the least but I wouldn't change anything I'm glad I put myself first!
Rose Madura Glad you are heading home. Take care of yourself. Thanks for keeping us informed. God bless you JJ... Read more
Rose Madura Glad you are heading home. Take care of yourself. Thanks for keeping us informed. God bless you JJ!
Glad to say everything went well with my colorectal surgery yesterday everything has been on the up and up since my Ross procedure my health has improved tremendously ...Read more
Glad to say everything went well with my colorectal surgery yesterday everything has been on the up and up since my Ross procedure my health has improved tremendously I've lost weight and my kidney disease has improved tremendously I guess we can attribute that to increased blood flow to the kidneys given that I have a 30mm pulmonary conduit 😉 and my own pulmonary valve working on the left side . I just wanna say thank you to everyone on this site that's been supportive in every step of my recovery and just overall a welcoming community where we can share our common goals and struggles! Thankful for the site Adam has created and cultivating a flourishing community of heart warriors ! 🤠
Timothy Andre Congratulations JJ, that's great news! Keep up the good work
Klara Čičić Wow JJ, you are one hell of a heart warrior! I am very happy everything is improving for you. Keep on ... Read more
Klara Čičić Wow JJ, you are one hell of a heart warrior! I am very happy everything is improving for you. Keep on ticking!
Patsy Stewart What wonderful news!! You look like you’re ready to break out of there. Keep conquering and getting ... Read more
Patsy Stewart What wonderful news!! You look like you’re ready to break out of there. Keep conquering and getting better every day!!~❤️
Angela Meletiadis Jose, I'm so glad things are looking up for you! Keep up the good work and especially the positive at ... Read more
Angela Meletiadis Jose, I'm so glad things are looking up for you! Keep up the good work and especially the positive attitude!!!
Andrew Dial That’s awesome man! Glad ur doing well!
Ed Eller That's a lot of battles to fight but you're winning!
Deena Z Jose, you have been courageous. God bless you and your continued healing.
Greg Lewis Very nice to hear!! You are tough, my friend!! Having heart surgery is never easy, but when you add o ... Read more
Greg Lewis Very nice to hear!! You are tough, my friend!! Having heart surgery is never easy, but when you add on other hurdles to overcome at the same time... that is another thing all together!! Your tough, and you will continue to overcome anything in front of you!
Rose Madura Great news JJ. So happy you are doing so well.
Ana Brusso WOW JJ, awesome news, so happy for you. Continued good health and God bless you. You have come a long ... Read more
Ana Brusso WOW JJ, awesome news, so happy for you. Continued good health and God bless you. You have come a long way in a very short time. Congratulations 🎊🎈🎉 👍🙏❤️
Pamela Gregory Great news! Glad your health is making a turn-around!
Susan Lynn Jose - You're looking great! So proud of your bravery and perseverance! All good things ahead! Ta... Read more
Susan Lynn Jose - You're looking great! So proud of your bravery and perseverance! All good things ahead! Take care!
Happy Thanksgiving to everyone! Also I have a update on my CT scan my pulmonary conduit has some stenosis there calling it moderate this can be expected ...Read more
Happy Thanksgiving to everyone! Also I have a update on my CT scan my pulmonary conduit has some stenosis there calling it moderate this can be expected withing the first year after the Ross procedure it than plateaus . I have a follow up CT and echo in May with my doctor to see how everything looks overall I'm having really good results from my Ross The left side aka my pulmonary valve is doing amazing working as a aortic valve virtually no gradient !
haven't really been on here in a while it's been a difficult couple of weeks I had my 4 months follow up echo on November 4th and it showed a mean gradient ...Read more
haven't really been on here in a while it's been a difficult couple of weeks I had my 4 months follow up echo on November 4th and it showed a mean gradient of 30 on my pulmonary conduit and the aortic valve aka my pulmonary valve on the left side is doing amazing! Anyway I have a ct scan of my heart this Tuesday and I'll either need to be ok warfarin for 6-12 month if it's a blood clot but if it's stenosis or a big enough blood clot I'll have to be replaced entirely! Which is a bit disheartening knowing I was doing so well after my Ross ! But as Adam says keep on ticking! I'll continue to have a positive out come I did get my bivalent COVID booster so that's a boost for my health!
I also had a stress test on the treatment and my max heart rate was 185 and the faster my heart got the lower my bp got They said on the report Hypotensive response to exercise I'm curious if anyone knows why this could be or if anyone else has had this
Klara Čičić Let us know how it went. I hope everything will turn out fine. You are strong and resilient! God bles ... Read more
Klara Čičić Let us know how it went. I hope everything will turn out fine. You are strong and resilient! God bless you.
Civita Fahey Hi Jose, I dont really know what it means when the BP goes down during exercise, but mine did before ... Read more
Civita Fahey Hi Jose, I dont really know what it means when the BP goes down during exercise, but mine did before surgery. Surgery said that the blood wasnt flowing properly, so it made surgery a bit more immanent. Good luck and I hope all turns out well for you.
Today marks 3 months since my Ross procedure On July 5th of this year and it's been a up and down journey .One thing I will say is before meeting with Dr Ismail ...Read more
Today marks 3 months since my Ross procedure On July 5th of this year and it's been a up and down journey .One thing I will say is before meeting with Dr Ismail El -hamamsy every surgeon before hand was either too scared of operating on me telling me it's too risky given your kidney disease or simply dismissed my symptoms stating it's too early for surgery . I'm extremely grateful for my surgeon my tip to everyone is if your having symptoms and you know you need surgery find someone willing to operate on you , advocate for your health and don't let one doctors no dictate your health ! Had it not been for my cardiologist Dr duarte . I would of never been referred for surgery find someone you trust and listens to you !
I had a recent echo on the day of my hospital discharge and it says I have a parachute like mitral valve is anyone familiar with this and is this something ...Read more
I had a recent echo on the day of my hospital discharge and it says I have a parachute like mitral valve is anyone familiar with this and is this something I should be worried about in the future my mitral valve only measures around 2 cm
I have some great news my echo results came back and my ejection fraction is a whopping 65% turns out the hospital I was transferred from doesnt deal with Ross ...Read more
I have some great news my echo results came back and my ejection fraction is a whopping 65% turns out the hospital I was transferred from doesnt deal with Ross patients or there anatomy and or congenital patients they just follow a adult protocol so they don't know how to calculate for people with hearts like mine but I'm so glad everything is fine and that I was transferred to my doctors hospital my heart is working better than ever and my valve gradient is 4 that's amazing! I'll be discharged on Tuesday once the cat scan comes back of the heart !
Ps. If anything I learned from this experience is I will always come to the hospital where my cardiologist is at and Its my job to educate any hospital if I can't get to my established hospital about my heart disease!
George Gardopee Excellent news Jose. I can’t imagine your relief.
Kristian M. Wow Jose I am so glad to hear this. Hope you continue to feel better!!
Kimberly Eisenhut Thank you for the Good News Today!!! Something to smile about today :)
Timothy Andre That's great news! Super happy for you JJ
Klara Čičić Oh my God this is such an excellant news! So happy for you! Hope the kidney function will get better, ... Read more
Klara Čičić Oh my God this is such an excellant news! So happy for you! Hope the kidney function will get better, too!
Mohammed Abdulrahman As i told you earlier, some echo readings are not accurate, specifically, when there are no significa ... Read more
Mohammed Abdulrahman As i told you earlier, some echo readings are not accurate, specifically, when there are no significant symptoms. I also told you that i have 12 echo reports and non of these has similar results.
I got my Ross surgery on July 5th everything was going well i got my latest echo on the 25th and today after a doctor visit I feel really tired lack of appetite ...Read more
I got my Ross surgery on July 5th everything was going well i got my latest echo on the 25th and today after a doctor visit I feel really tired lack of appetite and the doc discharged said everything fine but when I was waiting for my ride in the er the doc rushed to me and said your not leaving you have heart failure hearing those words shattered my world my ejection fraction is 25% even before my surgery my ejection fraction was 55 % I'm really hoping this ain't my Ross procedure failing it's my left ventricle ejection fraction that's not doing good aka my pulmonic autograft please send good energy and prayers my way im having a really bad night especially since I have stage 4 kidney disease and heart failure is terrible for the kidneys please pray my kidneys make it through this heart failure journey ! Appreciate all of you for all the comradery in our heart warriors !
Rose Madura Oh JJ, I'm so sorry to hear about this. God has you in his hands. Praying for a good outcome. Plea... Read more
Rose Madura Oh JJ, I'm so sorry to hear about this. God has you in his hands. Praying for a good outcome. Please keep us updated. God bless you.
Ana Brusso Lifting you up in prayer Jose. God bless you
Brady Busch I agree with the prayers for healing and restoration of your body and health,Jose.
Mohammed Abdulrahman Sometimes, the echo results are not accurate. I have 12 echo reports and non of these reports have si ... Read more
Mohammed Abdulrahman Sometimes, the echo results are not accurate. I have 12 echo reports and non of these reports have similarity !!!. Heart failure with 25% EF is unbelievable if you do not have noticed symptoms. In addition , your heart EF was 55% before surgery and now 25% !!. Do another consultatiob
be stronger and do not give up.
Timothy Andre JJ, I am so sorry to hear this news. Do your absolute best to stay calm and not stress. I am glad t... Read more
Timothy Andre JJ, I am so sorry to hear this news. Do your absolute best to stay calm and not stress. I am glad the doctors are aware of what is going on, they will create a plan for you. Trust that everything will be ok. We are here for you when you need us. God bless you
Adam Pick Jose, Thoughts and prayers are with you!!!
Klara Čičić Jose, we are thinking of you and praying, you are strog and will get throught this!
Kristian M. Jose, I am sorry to hear this. I hope things get better for you. Trust in that everything will be fin ... Read more
Kristian M. Jose, I am sorry to hear this. I hope things get better for you. Trust in that everything will be fine!
Ginny Turner So sorry for this latest challenge, Jose. My surgeon said to expect some bumps on the road to recover ... Read more
Ginny Turner So sorry for this latest challenge, Jose. My surgeon said to expect some bumps on the road to recovery. Trusting in your good care and praying for you.
I don't know why but it seems surreal that I got my surgery and it's been 2 months I think a part of me feels sad and uneasy because my whole life I knew I ...Read more
I don't know why but it seems surreal that I got my surgery and it's been 2 months I think a part of me feels sad and uneasy because my whole life I knew I needed a second open surgery later in my life I just never anticipate it would come so soon my first was when I was 11 I think what's harder for me is as I was growing up I was always on high alert thinking of when the big day would come and now that it's over with I'm like what now what's next in my life will I make it to 30 will there be another surgery all of these thoughts it's a bit hard the recovery!
Rose Madura JJ, you are a true heart warrior. You have been through so much and sometimes we wonder why. That's ... Read more
Rose Madura JJ, you are a true heart warrior. You have been through so much and sometimes we wonder why. That's normal. Try to live each day to the fullest and use your experience to help others. None of us know how long we will live. That's part of life and the way God designed it. Your honesty with us is refreshing. I will pray for you to have peace.
I felt emotional today thinking about how privilege and lucky I was to be able to travel to NYC from Texas,to get my Ross procedure done , and looking over ...Read more
I felt emotional today thinking about how privilege and lucky I was to be able to travel to NYC from Texas,to get my Ross procedure done , and looking over my insurance statement I wondered how many people aren't able to get the surgery they need or want due to cost . I'll always be thankful for what mount Sinai and my surgeon did for me. Ps. After the surgery it was a tough day I got my life back and for that I'll always be thankful to my surgeon I have my energy back!
How did everything go other than the kidney problem? You are such a strong person and I admire your strength and great attitude. Sending big hugs and good wished to you today