Jose's Journal

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 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'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.

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. 

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 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 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 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 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 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 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. 

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.

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 here to support you. 

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 have to stand up for yourself in healthcare to be heard and appreciated. Best of luck to you! 

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 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.

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.

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 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 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 this!

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?  

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 site and many incredibly talented surgeons who have given us new leases on life! Wishing you continued good health!

Ana Brusso  Congratulations JJ, you are doing great and know we are also grateful for you. Continued good health and God bless you 

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 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 likely cover the cpap machine. 

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 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

Steven Methot  I remember mine.  I liked it.  I liked it a bit too much, so much so that I'll never have it again.  Curse you Peach Schnapps!  Enjoy yours!

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!! 💃🏻

Rose Madura  Glad you are heading home. Take care of yourself. Thanks for keeping us informed. God bless you JJ!

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 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 attitude!!!

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!

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 🎊🎈🎉 👍🙏❤️

Susan Lynn  Jose - You're looking great! So proud of your bravery and perseverance! All good things ahead! Take care!

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 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. 

Ana Brusso  Congratulations on your third month anniversary. And you are right. We have to be our own advocates. 

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 significant symptoms. I also told you that i have 12 echo reports and non of these has similar results. 

Congratulation and go ahead 

Patsy Stewart  What a relief to read this! Praise God!! I’ve thought of you for days and I am happy that you got good news. Go, Jose!! 

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.

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 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

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 recovery. Trusting in your good care and praying for you.

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.

Brady Busch  My rehab consisted mostly of walking on a treadmill and lifting light weights in different positions.We also learned about nutrition and things that affect our heart health.If it's possible to get a treadmill or some other kind of aerobic exerciser and a couple of dumb bells,under 10 pounds and work with them a bit,that may help.They do monitor the heart at rehab.I also enrolled in a gym,afterwards,to continue with a suggested routine.

Christopher LeMay  Hi JJ, saw this post and was reading through your others.  I too had the Ross procedure at Mount Sinai by Dr. Stelzer and Dr. El-Hamamzy.  Did you have certain times you could only do for cardio rehab?  A friend of mine found it hard to find a place to take her due to the time she could make work. Otherwise, I agree check with insurance they should be able to find you a place,  best of luck!

Ginny Turner  Jose, I did not do formal cardiac rehab because we live in a small town where it is not offered. It would have meant an hour-long drive, to and from, three days a week for 12 weeks. Too much time on the highway. Instead, I walked on a treadmill at least 30 minutes a day, building up speed and elevation as I could. Also did light weight work, increasing as I felt stronger. It worked well. The benefit of formal rehab is the monitoring, but it's not a necessity. Good luck! 

Patsy Stewart  I’ve been through cardiac rehab. When I was assigned to it for the 3rd time, (actually 1 time for cardiac rehab and 2 times for pulmonary rehab) they had just opened up a program where you could do it at home. I kept a daily record of the exercises and walking that they wanted me to accomplish. I went in for the initial evaluation and then once a month. A nurse would call on a specific day and time to get my record once a week. The only time I/my insurance was billed for this program was when I went into the rehabilitation center. I live almost 2 hours away from the rehab clinic. It was so much easier to do it at home for me. I will say you have to be a disciplined soul and keep an accurate record. If you can’t get into rehab, start walking and slowly build yourself up to a faster pace and longer distance. The doctor had me walking twice a day for 20 minutes (if I remember right) after I came home from the hospital, so I had a good start beforehand. Now…. I’m not supposed to be doing any walking. 🙄 Maybe one day I’ll get back with the program!! Hang in there, Jose.  Don’t get discouraged! You’re doing great! 

Sherry Bradford  Jose - congratulations on your surgery! Things will get better and better as you move forward! I'm sure you likely are exhausted - but that will definitely get better over time. For me, in the first few weeks after surgery I felt much more mental clarity but I tired SOOOO easily. And it was the profound, hit the wall, gotta sit/lay down and take a nap fatigue. But as I moved into physical therapy, every day got better. It was - for me - about 4 months before I felt like my brain was working at full tilt and my body was truly healthy. But once I made the turn to better, things improved much faster. Everyone's body is different - but your young age is going to be a HUGE help in your overall recovery. Hang in there and just take things a day at a time and when your body says rest, try to honor its request if you can. You don't want to sleep too much as that can sort of rebound on you - but also do not press yourself to the point of exhaustion every single day. It will get better!! 

Susan Lynn  Jose - The spring semester will be here before you know it. You'll be ready to tackle the demanding schedule of a college student by then. Wishing you good health and future academic success!

Rita Savelis  I remember having to withdraw from my first semester at age 21 after cancer treatment and it was awful (to withdraw). But I had a lot more energy when I went back. It's hard to be young and sick because illness doesn't define you and yet it slows down your ability to get on with what your peers are doing.  Take care.

Deena Z  Jose, you are alive and getting stronger.  - This is what really counts right now.  -/Good decision!

College will be there next semester, when you are stronger. This semester is your time to become a beast of good health! Imagine the come- back stories you will tell your future patients. Go for it. 

Patsy Stewart  Sorry you had to postpone your classes, but…..blink your eyes a time or two and January will be here! Make good use of your time to recover and you’ll be more than ready to hit those books. Go, Jose!! 

Rose Madura  I'm sure it was hard on you but you will be stronger than ever in January. Keep plugging along with getting better. Focus on you for now. That's your homework....

Adam Pick  Hey Jose, You definitely just brought back memories of my early recovery. During the mornings of my early recovery, I felt energetic, alive and ready to take on the world. Then, as the day went on... I felt completely wiped out and needed to take naps. However, as the recovery continued and I started cardiac rehabilitation, my endurance and stamina got better-and-better-and-better. These days, I exercise 5 to 6 days a week. That said, keep your head up. You have been through a lot. Your body and mind needs time to rest and heal. As you recover, I am very hopeful that you will feel like your old self sooner-than-later. For now though, please do not try and "rush" the recovery. Thoughts are with you my #RossProcedureBrother.

GARY STANKO  Ditto, extreme fatigue after surgery.  I didn't have much pain but was tired all the time.  Since I was retired and didn't have to return to a job I just took it easy.

Erik W.  Same here, definitely there were days in the first 2-8 weeks where I'd have good energy but by 2pm I was dragging and napping, or other weeks where where I felt good all day for 2-3 days in a row then then my energy fell off a cliff the next day.  It will get better, keep doing breathing exercises and walking 2-4x a day. 

William Trankle  As my doctor wife told me, when you have open-heart surgery, you're experiencing trauma that's on par with being shot in the chest and then hit by a car.  You're healing from a massive intrusion into your innards, and that takes energy.  By day's end I'd not only be tired, but I'd spike a mild fever (99-100 °F) at around 1500-1600 each day.  It will improve, no worries.

Debra Keife  Hey Jose! I had my surgery a year ago this June . I too had fatigue and looked forward to my nap every day at 2. I knew my body needed it to heal. That's exactly what yours is telling you. It takes time and patience. Be well.

Ginny Turner  Hi Jose. Congratulations on your successful surgery in July! You have quite a lifetime heart story. As others say, extreme fatigue is to be expected as your body heals. Your regular walking and rehab exercises will bring your energy back, it just takes time. You made a great decision in choosing a very experienced surgeon and traveling to NYC for your surgery. I'm a fellow Texan (couple of hours north of you in Crockett) and did the same - traveling from Texas to the Cleveland Clinic in January to find a very experienced mitral valve surgeon. My surgery experience and outcome were excellent. I am beyond grateful to Adam and this community for helping me through the decision-making process. Continued good wishes, Jose. The hardest part is behind you now! 

Susan Lynn  Jose - i, too, was exhausted after surgery and if you're taking any medications, they may also be contributing to your fatigue. Eventually, I was able to maintain my energy level without the afternoon power nap. Better days are ahead!

Louanna Miller  Extreme exhaution is not uncommon after heart surgery. I also experienced this. Was only able to do a little activity and needed to rest, take naps in order to recover. Give yourself the time you need and listen to your body.  I am grateful you found the right surgeon for your procedure.  Once you start heart rehab you will start feeling much better and energy will restore slowly. 

Danielle Elizabeth  Hope you are healing well. I am still exhausted and it’s 14 weeks post surgery. The first 6 weeks I needed naps and slept 9-14 hours a night. I now sleep about 8 hours a night but I’m always tired after 2pm. I hope it gets better for all of us!

Greg Lewis  Hi Jose! I have been recovering for over a year, and one thing i have learned is to let your doctor know about anything you think is not right. It could be a host of causes, or nothing at all, and just normal. Let them run the tests they need too. Usually, it is a simple fix. Having said that, i too was exhausted most of the time. You keep on healing!!

Rita Savelis  Heart surgery is exhausting. I was not tired, I was exhausted for a long time afterwards. It's hard to describe the exhaustion to someone who hasn't experienced it. Your body has been through a lot and recovery takes time. It's not a race. Everyone is different. I remember the first week after surgery I could not even open my eyes (lift my eyelids) from exhaustion. Watching TV was out of the question. Way too tiring. I don't remember any pain, just exhaustion and extreme discomfort. Hang in there Jose. Take care.

Erik W.  For several weeks I could be energetic for several days then just crash the next, some times even in the same day.  Eventually things got better and energy level went up consistently. 

Greg Lewis  Hey, Jose. How are you now? Did the feelings in your head straighten out? I have been noticing my head feels pressured up, like i am standing on my head. It happens when i get fluid build up from my heart not pumping efficiently, and my BP goes up, due to the PVC issue,  lately. After they give me Lasix, it goes back to normal. Is that what you were feeling, a few weeks ago?