Heart Transplant Expenses for Juan
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Juan was diagnosed with atrial fibrillation in 2009. Since then, there have been additional heart issues, mainly heart failure. It became extremely difficult for Juan to complete normal everyday tasks. Exhausting all treatments via his local cardiologist, it was time to seek advice regarding possible heart transplant. We met with an amazing doctor at Florida Hospital! With Dr. Velez's guidance, it was decided that a heart transplant would be the best treatment. Juan was listed on the heart transplant list 3/2018. It has been a difficult road managing his health, but we have made it this far with the love and support from our friends and families.
As most of you may know, I am in Nurse Anesthesia school full-time and Juan has been supporting us on his income along with my student loans.
1/5/19: We received the call! They have a HEART for Juan! He will be in the hospital a while and will be unable to work. It is a new year and his insurance out of pocket has to be met again. I am not one to ask for help, but anything contributed would be a HUGE help to us in alleviating some of the stress of his medical bills relating to the heart transplant.
1/6/19: Update! He is doing great! The breathing tube came out last night. Physical therapy and occupational therapy worked with him and got him to stand! It is insane to think he just went through this major life changing surgery and he is up! His numbers all look good! His doctors are very pleased with his progress! I will continue to keep everyone updated!
1/7/19: My school is being so supportive through this!! It brings such peace of mind knowing that my graduation is still on track! Juan is doing well this morning. They placed a PICC line in his left arm in preparation for the Swan-Ganz catheter in his neck to hopefully be removed later. He is starting to tolerate full liquids without being nauseous. The goal is to see if he can tolerate walking in the hallway. I can't even imagine! What a gift!
1/8/19: Almost all the IV drips are off!! The chest tubes may come out tomorrow. He actually went for a walk in the hallway!! He walked 5 room lengths! Things are progressing as they should! God is good!
1/9/19: Both chest tubes were removed! He says he can breathe better with them out. The Swan-Ganz catheter was also removed! He went for another walk, same distance of 5 rooms but it was more fast paced. They kept telling him to slow down! He did over do it, he was over heating, sweating, and had a lot of pain. You could see the frustration on his face. Overall, he is making such progress!
1/10/19: Goal for the day... walk 4xs in the hallway! Oh boy! This morning we took him for a walk and made him walk at a grandpa pace lol. He walked all the way to the end of the hallway, which is about 11 rooms and back! Breaks throughout the walk of course! He is tolerating a cardiac diet and has got his thirst back. You can definitely see an emotional improvement! Hopefully today will be the day he gets moved to the regular cardiac floor! A biopsy is scheduled for tomorrow to check on rejection status and see how his ejection fraction (the squeeze of his heart) has improved.
1/11/19: Juan was moved to a regular cardiac room!! He is working with OT/PT and is doing well! He had his heart biopsy this morning. He said everytime they took a little piece, his heart did a dance! He had an echocardiogram to look at the function of his heart. I don't have the final report but I can tell you, the heart is so strong and working well!!
1/12/19: The last of Juan's drains was removed! They decreased his milrinone infusion (helps with the squeeze of the heart). Walked more in the hallway, it is tough for him, but he is a trooper! We found out the results of the heart biopsy....no signs of rejection!! YAY!
1/13/19: The milrinone infusion (helps with the squeeze of the heart) is off!! Worked more with PT and went on a further walk! Another echocardiogram (ultrasound) of the heart is scheduled tomorrow to see how his heart is working all on its own. Things have been going unbelievably well. It still is going to be a challenging recovery but all signs are pointing to success!
1/14/19: Juan got his dialysis catheter removed (which he never ended up needing). Continued to work with PT and walking farther.
1/15/19: Busy day today! Met with the post-transplant coordinator and went over discharge information. Met with the tranplant pharmacist to go over the truck load of meds he will be taking for the rest of his life. Met with a fantastic palliative care social worker to discuss how he is feeling and give tools to help with coping. Was hoping we could get him sprung but one of his antirejection medication levels was sub therapeutic so they have to make adjustments.
1/16/19: He did 5 stairs today! His strength continues to amaze me. There are times he gets discouraged because he just can't get up and go. His tacro level is still low, so they are adjusting his medication again.
1/17/19: We did a whole lap around the unit! (With lots of breaks of course). They consulted infectious disease because his white blood cell count is a little elevated and his chest xray shows atelectasis vs pneumonia. Fingers crossed its nothing. The predisone can cause white blood cells to be elevated...but the xray is a smidge concerning. He's using his incentive spirometer and going for walks. I guess we shall see what tomorrow's xray brings. Tomorrow he is scheduled for his second heart biopsy. I will continue to keep everyone posted.
1/18/19: Biopsy went well. The infectious disease doc and the cardiothoracic doc are convinced that the rise in WBCs are from the prednisone. His tacro level is finally at a therapeutic level. There is talk about possible discharge! They came around and did what they call discharge rounds just in case, because it's a Friday. They brought by Juan's suitcase of medications lol. And he was tested on the medications and what they are for. We went walking and he did 2 laps around the unit! Lots of breaks but you can see the improvement !
1/19/19: Free! We are free! Well, kind of. He has lab work Monday, clinic visit follow up Tuesday, and another biopsy on Wednesday. He is doing to have so many follow ups to make sure he and the new heart are getting along :)
**I cannot thank everyone enough for their support during this time, it fills my heart with such emotion to have amazing friends and family**
Please keep him in your prayers and God Bless You for all your support!
3/11/19: Juan is now 9 weeks post heart transplant. We have been so blessed because each biopsy has shown no rejection. He had his first few days back at work. Things were beginning to show some normalcy. That being said, Juan went for his follow up and his white blood count and neutrophil count has plummeted. They have admitted him to the hospital and he has become the "boy in the bubble". They are running a bunch of tests. It is unclear why this is happening now. Adjustments are being made to his anti-rejection medications. His duration in the hospital is known at this time. Please keep him in your prayers. I will keep everyone updated.
3/22/19: Juan's preliminary biopsy report is in and he is in moderade rejection. We had a feeling this could happen because they had to take him off 3 of his antirejection medications in hopes to bring up his white blood count. His white blood count is very slowly coming up, but is still below normal. Now, it's a balance of reintroducing some of his antirejection medications at lower dosing in hopes of fighting the rejection and trying not to wipe out his white blood count. Thank you all for your prayers. Please keep them coming!
As most of you may know, I am in Nurse Anesthesia school full-time and Juan has been supporting us on his income along with my student loans.
1/5/19: We received the call! They have a HEART for Juan! He will be in the hospital a while and will be unable to work. It is a new year and his insurance out of pocket has to be met again. I am not one to ask for help, but anything contributed would be a HUGE help to us in alleviating some of the stress of his medical bills relating to the heart transplant.
1/6/19: Update! He is doing great! The breathing tube came out last night. Physical therapy and occupational therapy worked with him and got him to stand! It is insane to think he just went through this major life changing surgery and he is up! His numbers all look good! His doctors are very pleased with his progress! I will continue to keep everyone updated!
1/7/19: My school is being so supportive through this!! It brings such peace of mind knowing that my graduation is still on track! Juan is doing well this morning. They placed a PICC line in his left arm in preparation for the Swan-Ganz catheter in his neck to hopefully be removed later. He is starting to tolerate full liquids without being nauseous. The goal is to see if he can tolerate walking in the hallway. I can't even imagine! What a gift!
1/8/19: Almost all the IV drips are off!! The chest tubes may come out tomorrow. He actually went for a walk in the hallway!! He walked 5 room lengths! Things are progressing as they should! God is good!
1/9/19: Both chest tubes were removed! He says he can breathe better with them out. The Swan-Ganz catheter was also removed! He went for another walk, same distance of 5 rooms but it was more fast paced. They kept telling him to slow down! He did over do it, he was over heating, sweating, and had a lot of pain. You could see the frustration on his face. Overall, he is making such progress!
1/10/19: Goal for the day... walk 4xs in the hallway! Oh boy! This morning we took him for a walk and made him walk at a grandpa pace lol. He walked all the way to the end of the hallway, which is about 11 rooms and back! Breaks throughout the walk of course! He is tolerating a cardiac diet and has got his thirst back. You can definitely see an emotional improvement! Hopefully today will be the day he gets moved to the regular cardiac floor! A biopsy is scheduled for tomorrow to check on rejection status and see how his ejection fraction (the squeeze of his heart) has improved.
1/11/19: Juan was moved to a regular cardiac room!! He is working with OT/PT and is doing well! He had his heart biopsy this morning. He said everytime they took a little piece, his heart did a dance! He had an echocardiogram to look at the function of his heart. I don't have the final report but I can tell you, the heart is so strong and working well!!
1/12/19: The last of Juan's drains was removed! They decreased his milrinone infusion (helps with the squeeze of the heart). Walked more in the hallway, it is tough for him, but he is a trooper! We found out the results of the heart biopsy....no signs of rejection!! YAY!
1/13/19: The milrinone infusion (helps with the squeeze of the heart) is off!! Worked more with PT and went on a further walk! Another echocardiogram (ultrasound) of the heart is scheduled tomorrow to see how his heart is working all on its own. Things have been going unbelievably well. It still is going to be a challenging recovery but all signs are pointing to success!
1/14/19: Juan got his dialysis catheter removed (which he never ended up needing). Continued to work with PT and walking farther.
1/15/19: Busy day today! Met with the post-transplant coordinator and went over discharge information. Met with the tranplant pharmacist to go over the truck load of meds he will be taking for the rest of his life. Met with a fantastic palliative care social worker to discuss how he is feeling and give tools to help with coping. Was hoping we could get him sprung but one of his antirejection medication levels was sub therapeutic so they have to make adjustments.
1/16/19: He did 5 stairs today! His strength continues to amaze me. There are times he gets discouraged because he just can't get up and go. His tacro level is still low, so they are adjusting his medication again.
1/17/19: We did a whole lap around the unit! (With lots of breaks of course). They consulted infectious disease because his white blood cell count is a little elevated and his chest xray shows atelectasis vs pneumonia. Fingers crossed its nothing. The predisone can cause white blood cells to be elevated...but the xray is a smidge concerning. He's using his incentive spirometer and going for walks. I guess we shall see what tomorrow's xray brings. Tomorrow he is scheduled for his second heart biopsy. I will continue to keep everyone posted.
1/18/19: Biopsy went well. The infectious disease doc and the cardiothoracic doc are convinced that the rise in WBCs are from the prednisone. His tacro level is finally at a therapeutic level. There is talk about possible discharge! They came around and did what they call discharge rounds just in case, because it's a Friday. They brought by Juan's suitcase of medications lol. And he was tested on the medications and what they are for. We went walking and he did 2 laps around the unit! Lots of breaks but you can see the improvement !
1/19/19: Free! We are free! Well, kind of. He has lab work Monday, clinic visit follow up Tuesday, and another biopsy on Wednesday. He is doing to have so many follow ups to make sure he and the new heart are getting along :)
**I cannot thank everyone enough for their support during this time, it fills my heart with such emotion to have amazing friends and family**
Please keep him in your prayers and God Bless You for all your support!
3/11/19: Juan is now 9 weeks post heart transplant. We have been so blessed because each biopsy has shown no rejection. He had his first few days back at work. Things were beginning to show some normalcy. That being said, Juan went for his follow up and his white blood count and neutrophil count has plummeted. They have admitted him to the hospital and he has become the "boy in the bubble". They are running a bunch of tests. It is unclear why this is happening now. Adjustments are being made to his anti-rejection medications. His duration in the hospital is known at this time. Please keep him in your prayers. I will keep everyone updated.
3/22/19: Juan's preliminary biopsy report is in and he is in moderade rejection. We had a feeling this could happen because they had to take him off 3 of his antirejection medications in hopes to bring up his white blood count. His white blood count is very slowly coming up, but is still below normal. Now, it's a balance of reintroducing some of his antirejection medications at lower dosing in hopes of fighting the rejection and trying not to wipe out his white blood count. Thank you all for your prayers. Please keep them coming!
Organizador
Lisa Marie Reyes Ortiz-Rivera
Organizador
North Fort Myers, FL