grimmie

Bursting At The Seams With Joy!

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My husband was diagnosed with Pulmonary Fibrosis on 2006. He took a turn for the worse last June after 2 wks. in the hospital with Pneumonia and another weeks stay in Oct. He was forced to retire in June and began pre-testing for transplant in Sept. He made the UNOS list Dec. 14th.

Last Saturday, Jan. 24th, I took the call from the transplant coordinator that a donor had been found. People use the term blind-sided but you can't fully understand the feeling until it happens to you. When my cell phone rang, I looked down and saw "no caller ID". I ignored it, I don't answer calls from unknown sources. But a little voice said answer it, I did.

I listened as the Coordinator told me there was a donor, to come now, we could take showers but we needed to come asap...I stopped breathing...I sounded like a blubbering idiot answering his questions.

For 5 wks. we've held our breath when our cells would ring and every day that went by without a call, we got a little more discouraged. His lungs were failing fast, his diagnosis reads end stage Pulmonary Fibrosis. People do die waiting for a donor. I was beginning to think I must start preparing for the worst case scenario.

So taking THE call was the most amazing yet surreal moment of my life and I feel so incredibly blessed to have been given the experience. I know my husband must have fully realized this was THE CALL, but his face was absolutely without expression. His eyes were locked on my face, I remember thinking...how can he sit there so calm while I'm falling apart.

I thank God my HC buddy FarmGirl824 and her husband were here visiting with their new baby, she scooted over and hugged me and asked "what can I do?".

A bag...I hadn't packed a bag. The Coordinator had already told us Paul wouldn't need anything so she ran around grabbing our phones, my IPad, chargers and snacks and stuffed them in a tote.

We both got showers and rushed the 63 miles to St. Luke's Denton Cooley Heart Institute/Transplant center in the Houston medical center. FG and her husband stayed at the house and fed the animals that night and the next morning alleviating one huge concern of mine.

The donor lungs were coming from Dallas. Waiting for the antibody match was harrowing, had the donor not matched, the lungs would have gone to another recipient. There is no way to prepare yourself for going home at that point.

At 1:35am Sunday morning, we all said our goodbyes as they wheeled him to surgery to begin the process of placing him on the heart/lung machine...I was shaking uncontrollably...in true form, he was serenading the staff with Elvis tunes. The only time he got emotional was when he told the team his thoughts and prayers were with the donors family. I think it was that moment I fully realized how brave and courageous he is.

Our son and daughter, her husband, our grandson, Paul's sister and brother hunkered down in the waiting room and waited.

The lungs arrived at 5am. At 7:00am we were told the lungs were in and around 11:00am the surgeons came out to give us the wonderful news everything had gone well.

He's doing amazing. He's off the ventilator, sitting and standing and was recently moved out of ICU to intermediate care. I get to see him tonight and I'm as excited as a school girl with a new crush.

I've allowed myself to daydream about the trips we will take, seeing movies together, antiquing, planning family vacations again and fulfilling the things on our bucket lists. He's got a rough year ahead of him to regain his strength and muscle tone before he can really begin to enjoy life again. I ordered him a Superman t-shirt to wear home from the hospital because he is Superman.

Here's my guy, 24 hrs. after a double lung transplant and just minutes after the breathing tube was removed. He hasn't been that pink in 9 yrs.

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Haha Nick, it has already been suggested. It would make for a really great photo op when he gets to ring the bell before he goes home.

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I read your entire post with a hand over my quivering mouth and tears threatening to swim over my eyes. I cannot express how happy I am for you both. Albert Einstein is credited with saying: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." I think I know how you'll be living your lives!

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So happy for the both of you!! I hope your hubby recovers well, and has many more years with you. Prayers and well wishes for you both.

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Appreciate all the kind thoughts. I just got back from the hospital, It's a 122 mile round trip to go see him, it's beginning to take a toll on me and the kids, who have to get up and go to work.

He had to have a swallow test done today before he can be given anything by mouth, he has not eaten a bite since 11:00 last Saturday. I so hope he will at least get a liquid diet tomorrow.

I had to take his ice chips away from him when I left because he cannot have them unsupervised. Broke my heart.

Heidi, that is exactly what I feel will happen.

Oh my gosh, I wanted to let you all know that I am in contact with Alleyway. I found her on Facebook when Paul was testing for transplant. She sent us two wonderful books to help us through the experience.

We are not at the same clinic where she got her transplant but practically next door.

We are hoping to meet in early Feb. if we happen to be at the Med. Center on the same day.

Must get some rest now.

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That is fantastic! High fives to you both!

A good friend of mine received a kidney over the summer, swing her go from "I can't ride that long," to seeing pictures of her looking much better is unreal!

I can only imagine how you feel that your superman has received 2! Lungs successfully! Here's to many happy hikes and completing that bucket list!!!

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What a huge blessing it is to have the lung transplant surgery. The recovery period will be long but so worth it for Paul to feel good once again. I'm praying that both of you will have many many more years to enjoy his retirement doing the things you've both dreamed of.

Yes you also need to take care of yourself cause Paul will need you when he gets to go home. Don't spread yourself too thin, eat well and gets lots of sleep. ((hug)) Prayers coming for everyone.

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Cindy, I promise I am tending to my needs. I've been eating healthy for two years and am trying real hard to eat right when I'm not at home. Pampered myself to new hair style and color today.

Appreciate all the kind thoughts.

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That is fantastic news, prayers for continued healing and recovery!

How is Alleyway, by the way? I always wondered about her and hoped that she was doing well. Seemed like such a well adjusted young lady for someone who had her health issues.

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Farah, Alleyway is doing well. She had so many complications after her transplant, some have improved, not gone but manageable.

Initially, rejection was so scary to us, but the transplant team calmed our fears and told us because they monitor so closely, with blood levels once a week for 6 mo., they are very very good at dealing with rejection.

Alley told me she has never fought rejection. That really helped me set aside that fear.

Edited by QH_LUV_R

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My family has been the recipient of a donor organ also. And I well remember the excitement and fear being mixed all up together. My dad did really well - and I'm sending prayers that your husband will continue to do so.

:angel3::angel3::angel3:

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Oh my gosh, I wanted to let you all know that I am in contact with Alleyway. I found her on Facebook when Paul was testing for transplant. She sent us two wonderful books to help us through the experience.

We are not at the same clinic where she got her transplant but practically next door.

We are hoping to meet in early Feb. if we happen to be at the Med. Center on the same day.

How awesome is that!!!!!

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Yes jubal, our minds are blown at the technology and knowledge the surgeons and nurses have. When you look at someone hooked up to 5 chest drains and monitors with 6 IV's coming and going, you have to realize the magnitude of what goes into a transplanted organ and the follow-up care involved. It truly is mind blowing experience.

Char, every time I hear of a successful transplant, it gives us hope. My husband was literally living on borrowed time. The team stressed to us he was one respiratory infection away from death.

I got word today he will spend one more week at St. Luke's and be transferred to a rehab hospital across the street where the transplant team can keep close tabs on him. He will be there 2-3 wks. We are hoping the atrophy is not permanent and he can gain muscle strength in his legs arms and chest so he's able to do ADL's when he's sent home.

At this stage he is unable to stand or walk or perform any self care.

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but when he is, my goodness, when the sun shines take him out there and let him enjoy it!! super, superman!! and ONLY when he is ready, take him for a little walk, very little, and enjoy how happy he will be to get his life back. (but slowly!) YAY!

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I too want to give my best wishes for both you and your husband

What an awe inspiring example of a positive spirit. I think you should get yourself a Wonder Woman outfit to go together with hubby's superman costume, as your support will go along long ways to a very positive recovery.

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Nick, I'm already planning long walks on country roads. He has all the parts for restoring his '72 Chevy Cheynne truck when he's healthy and I picture us driving backRoads, perusing estate sales and flea markets one day soon.

Edited by QH_LUV_R

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