Jose's Journal

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 learning, the positive attitude, you can f do i this!  

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? 

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!

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 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 for you. Please keep us posted. 💪❤️‍🩹🪖

Kimberly Eisenhut  Jose, I will have you in my prayers tonight and will look forward to your updates after your successful surgery

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 praying for you.  

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. 

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.