Adjusting to a New Challenge

Cyndy

Adjusting to a New Challenge

Cyndy
(Editor's Note: We welcome Cyndy, who cares for her husband, to our blogging team. You can connect with her on her profile page: @cyndy.)

cloud-369604_640My husband was just put on O2 24/7 for idiopathic pulmonary fibrosis.

He was just diagnosed in October and had a crisis in December. He was hospitalized at local trauma medical center and then taken by ambulance to Boston. There he was evaluated by lung transplant team and put on waiting list for a lung. We got back on Christmas Eve. We are adjusting to this new life. I have been given a leave from work until the end of August with insurance in place until then. For that I am so thankful.

How do you adjust to being on call 24/7? I am thinking already that I need a break so that I can go out and have a break. We have visiting nurses coming in to see him twice a week but I am feeling that I need babysitters to watch him so that I can get a break.

Am I being too selfish? With long cords he can use the bathroom and get around if slowly. He says he is fine if I take my cell with me for short periods of time but I feel guilty leaving him.

We are seeing his internist tomorrow so we will talk with her about my fears. Cyndy

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jan

Welcome to the website, Cyndy. Thanks for taking the time out of your complicated day to join us. I hope you will find good companionship and many resources here to help you along. It really makes a big difference to know you're not alone and you're not judged no matter how you feel or what you have to say.

Cyndy

Chris,\r\nAccording to our pulmonologist Bruce should not get under 92 at any time. He is on 8 L when he walking and 2 L while at rest. I find I am constantly adjusting the machine during the day as he cannot make it to the macine on 2 L to adjust it. Someone should invent a TV remote to do it. Lol\r\nPlus the cord can only be 50 ft as a longer cord does not provide enough o 2 at the end. So we solved the problem by getting an extension cord to move the machine so that the cord reaches everything. You should have seen me going to the hardware store and handing the clerk my list and have him find them. I realized then how much my husband does for me and I better catch up soon.\r\nI too find that I have to look for the cord when walking. We have 2 cocker spaniels and they are right by me so sometimes I step on it. I laugh and tell Bruce that a lapse of air is coming. We are luckily able to see the humor of it all.\r\nHave a good sleep. Cyndy

chris

I think that their reasoning is that he is near end stage. They only told me to make sure he lays on his left side because the right side and back he quits breathing. I talked to a classmate of mine about the machines and that is what she said. I purchased a pulse oximeter and when he looks like he is having difficulty breathing at that moment, I put it on the finger. Lowest with O2 was 705 so far. She told me to turn his machine up 1 Liter to get him comfortable. We got the legal paperwork filled out so we (I) don't have any problems speaking up for him. Also, if you get up in the night make sure you don't trip over the long cord. I have done that so many times that I can only laugh now.

Hussy

Good advice, Chris. I too am dealing with anticipatory grief and am finding counseling to be a great help.

chris

Also please take some time for yourself so you don't burn out. I burned out and am seeing a counselor helping me deal with it. I am dealing with anticipatory grief.

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