I just had a moment to read your story, thank you very much for the verse below, I'm heading into OHS, in the near future hopefully by mid-June, and it has been an emotional rollercoaster, but that verse really puts it in perspective, I too can do all things through Christ who gives me strength. You was sent by God to renew my strength this morning, thank you very much...continue to take one day at a time, and keep encouraging everyone, God has a plan for you.
Phlippians 4;13 - I can do all things through Christ who gives me strength.
Hi I'm a patient with fallot tetralogy as well and would like to know how u r getting on as u have not been updating since oct last yr. I'm 25 this yr and I know I will need the operation sooner or later. My heart has not been enlarged but my valve is severely leaky. Do reply to let me know. My email is Angeline_87@Hotmail.com. Thanks
My 13-year old son, Lucian, had his pulmonary valve replaced on September 14. Reading your journal gives us such hope that he will return to 'normal' after recovery. I'm so happy that you are able to begin running again.
I wanted to share something with you. My husband and I took turns staying overnight with Lucian in the hospital. I stayed the first night. Lucian was in excruciating pain. He kept getting a terrible pain in both of his shoulders. It was scary to see him in such pain. The nurses and doctors were puzzled. They did an ECG and gave him morphine. Nothing seemed to help. He suffered for over two hours. I was quietly panicking thinking that something was terribly wrong.
Lucian said, "Mom I think they made a mistake...I think something is wrong and I just want to go home." I whispered into his ear to pray to Jesus and ask for some relief from the pain. I sat at the end of his bed an began praying to Jesus and the Blessed Mother. I felt that the Blessed Mother would intercede. A peace came over the room and within 5 minutes Lucian was peacefully sleeping...no more pain. From that time on he only needed Advil and Tylenol for pain.
He is home 3 weeks now and hasn't had any pain whatsoever! I have read your journal and feel your strong faith in our Lord above. We stand with you in our faith and praise our heavenly Father for his blessings.
Thank you for getting in touch with us through Lucian's journal...we will continue to read your journal postings.
I was happy to see that you are progressing so well and that your wire situation is resolving. You have certainly needed faith to carry you through.
Twenty months ago at the age of 51, I underwent a mitral valve replacement. It was also my second time around. My first surgery was done at age 5 to correct a congenital defect. I really was fortunate my valve lasted this long. At the age of 14, I was told my valve would be replaced by age 20.
I have been so blessed in my recovery. It is great to no longer have the murmur that has been with me since childhood. It is great to return to the activities we love. . My husband and I just completed a three day backpacking trip. Woohoo! I felt so blessed to be able to experience God's beautiful creation in this manner.
Eventually my porcine valve will need to be replaced. I am hoping that technology will permit a transcatheter procedure when the time comes. But if not I know that Jesus will be in the boat with me again! Isn't it wonderful to see God's hand in the adventure?
Dear sister, God is good! He will continue to be with you through this adventure.
I love you and am so proud of you. You are an amazing Godly example to me and I am so thankful that God has given you more time on this earth so that I can enjoy you. Our prayers are with you as you continue this journey.
Hey there! Don't rush things Roxanne! Everyone is different! Listen to your nurses and do what you can! :) Sounds like you had a lot more done than some of us!
I ended up back in the hospital for 4 more days after they released me. I had a bacterial infection. BUT, I think in the end it helped me get stronger faster...I couldn't over do it in the hospital! :) (although I was so sad to be there again)
I wish you luck on your journey! One day at a time! :)
Greetings, Roxanne, from Sheila in California.
Sounds as though you are working really hard on recovering. So proud of you! You are so blessed to have a wonderful man by your side. After I'm healed from my surgery (13 days out) and since my heart is fixed...I think it will be time to open my heart up to love again.
Hi Roxanne. Way to go with the walking! Your journey to 30 minutes will go in no time flat. You can get heart rate monitors from Timex and Polar - order online after a Google search for a good price or your local big sporting goods store will have. They're usually under $100. Most models have a chest band with the heart sensor and a wrist watch for the display. -- DVB
Hi Roxanne! I had my mitral and aortic valves replaced 5 weeks ago. God is good!!!!!! It looks like you are doing really well and have awesome nurses! You go girl!!!! Try to walk when you can and stay on top of your breathing machine. :) Prayers are with you!!!!!
BLESS YOU ROXANNE AND CHRIS! ...you are much on our heart and in our prayers and we stand with you to see the glory of God revealed through every inch of this. love you so much! <3 love ruth and brian and girls
Hi Roxanne. I'm following your progress and wishing you the best. I have a slightly selfish interest in this because in a few weeks I will be going in for aortic valve replacement and I am quite anxious about the recovery process. Obviously there is no way around this trauma, it simply has to be borne and moved through. And you seem to be doing quite well. I hope I can follow in your steps and do as well as you.
If she feels like she is getting sick again, have her sniff an alcohol wipe. One of the pain pills I was on right after surgery made me sick and I was on the verge of vomiting and the nurse stuck that pad in front of my nose and it was gone instantly.
Hi Roxanne, Our son Michael 18 just had his pulmonary valve replaced 5 weeks ago. He was also born with Tetralogy Of Fallot and had surgery at 9 months. You will do GREAT!! We will keep you in our thoughts and prayers. We also set up a journal for Michael and the response was so uplifting and incouraging for all of us. We will be watching for your posting along the way to recovery. Jesus will be with you through. out your journey Jim, Linda & Michael Rogers, Ponte Vedra Beach, Fl
Thank you for your kind and supportive words to me on the eve of my surgery. I will follow your journey and will lift you up in prayer.
God has blessed me in so many way and His love will continue to fill my heart.
I just now got the news about your heart.
You are such a person who radiates love & joy. I never would have guessed you had heart issues. (Obviously, your spiritual heart is beating very strongly!)
Now, I am adding you to my prayers - that you would continue to shine for Jesus through all this journey...
May Jesus continue to give you life, and life in abundance...
Hey Roxanne and Chris! I really appreciate the pic you have posted.... it speaks volumes about where your confidence is.... This is a real test of courage and faith. You are both brave and strong. Your up for this and you cannot even imagine just how many seen and unseen are rallying around you in confidence and prayer. God is faithful.... we can count on His track record!
Roxanne,We have added you to our prayer list.My son just had his 3rd Valve replacement.no cow jokes here either. There was some concern about openeing his chest the 3rd time,but, he is now home working in the yard (6weeks post) His wife and his Dad and I(Mom) stayed with him the first 3 days and made sure his pain was taken care of.After the tubes were all out his pain was almost gone.He needed good pain control from home for a few days.He had a verse on his callendar for everyday,claiming Gods promises. Rest well.. God Bless
Thanks Rox for the update. It is a big deal what you are dealing with and feeling and thought process. I am so grateful you were encouraged and hearing God's word for YOU!! I love you and and thinking and praying for you.
Hey Rox, it's J Kehler. Just wanted you to know that i am praying for you (and Chris too). I was excited and over-joyed when i read your most recent post, and how God revealed the lie for what it was. Continue to rest in him, and let him speak to you the Truth. Amen.
I'm sure the stress is very difficult for you. You sound like you are very brave, but please remember that it is OK to cry if you need to, you have every right. If I can give you one piece of advice, I would say your husband or someone else should stay with you 24 hours a dayin the hospital if possible for the first fews days after your surgery. You will be medicated and in a lot of pain and will not be thinking straight so having someone there with you will help you remember and ask questions. My husband had surgery 7 weeks ago and during the middle of the first night after surgery I was sleeping in his room and I could tell my his moans that he was in a lot of pain, even though he was receiving pain meds. I was able to talk with the nurse and tell her that he needed more or a different pain medication. She was able to speak with the doc and they took care of it right away. Not all pain medications work for everyone so if one isn't working, ask to try
I too need to have my pulmonary valve repaired or even replaced. I was originally born with pulmonary stenosis and had it corrected at 10 days old and had a minimual scar. However, approximately 32 years later I am faced with having the pulmonary valve and a small hole fixed at boston childrens hospital. I too am seeking to have it donw by the end of june.
Well not so bad getting the full open heart treatment. Less time on bypass, bigger workspace, better view. All good things that tip the odds even more in your favor. Scar will fade in time. You are brave. -- DVB
Hi Roxanne from Southern Calif. I hope and pray for a successful surgery and smooth reovery. I'm so sorry to hear that you have had to deal with this for so long!
I'll be following your progress.