Questions about Husband's possible double lung transplant

Posted by ak198084 @ak198084, Mar 12 4:29am

Hi. My name is Amanda. My husband and I found out yesterday that my husband has two options on what he can do for his condition.

Let me explain............ Two years ago, my husband was diagnosed with CLL(Chronic Lymphocytic Leukemia). After chemo and being in remission, he started complaining of shortness of breath and chest pain. Fast-forward a year. After going to two different doctors, We found out he has COPD(possible Idiopathic Pulmonary Fibrosis), which is weird because he never smoked a day in his life. He is a musician and was a machinist/welder. So, a mix of smoky bars, his parents smoking around him at a young age, and welding fumes may have contributed to worsening of condition.

The Pulmonologist he is seeing now has suggested doing a lung wash to find out if there are any markers to pinpoint what caused the condition, then she wants to do a biopsy, after that she wants to make a referral to Barnes Hospital in St. Louis Missouri, for possible double lung transplant. She is wanting to get this done by this summer.

My questions are
1. What is the prognosis of someone with CLL to survive a double lung transplant?

2. What are the things I can do to not only be a supportive wife but a caregiver not only before but after the transplant?

I'm scared. I don't know what to do! Please help me! Please pray for us!

Interested in more discussions like this? Go to the Caregivers Support Group.

lizzyj58 | @lizzyj58 | Mar 12 5:54am

First of all I'm so sorry that both of you are going through all this. Ask as many questions as you can think of. Being a caregiver is not easy but we don't realize how strong we are until we are put to a test. The doctors must feel very confident about the surgery. Keep that in mind. Try not to think too far ahead, day by day is better. Will keep both of you in prayers 🙏 Keep us updated.

ak198084 | @ak198084 | Mar 12 5:59am

I do have to add my husband is 45 yrs old.

royce | @royce | Mar 12 7:12am

I know that you will take great care of your husband, but remember to take care of yourself. Don't be afraid to ask for help. My wife and I are each others caregiver. We both go together for each others appointments. We discuss beforehand what possible questions that we have. Sometimes we write them down, so we don't forget to ask important questions. Handouts are fine but are sometimes written in language we don't understand. There are good places to get answers for questions on line like this forum. We are pulling and praying for you and your husband.

Colleen Young, Connect Director | @colleenyoung | Mar 23 8:14pm

Hi @ak198084, I added your post to the Transplants support group as well here: https://connect.mayoclinic.org/group/transplants/

I'm also tagging a few members who have first hand experience with a double lung transplant to share their experiences and thoughts like @chickytina @jackiez @francisanne @ktgirl @sidney073 @kathy22 @helenrivera @krsunny1 and others.

I can understand that you're scared, @ak198084. You're asking good questions. Here's one discussion you might wish to explore:
- Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

When recommending your husband for a double lung transplant, they will evaluate his health status. Have you and your husband decided to be listed for a transplant? How is he doing? How are YOU doing?

helenrivera | @helenrivera | Mar 24 4:02am

In reply to @colleenyoung "Hi @ak198084, I added your post to the Transplants support group as well here: https://connect.mayoclinic.org/group/transplants/ I'm..." + (show)

@colleenyoung , Hello and sorry for the late post. I can’t sleep as my hunny is snoring🙂.

1. Write down your fears and discuss with your MD or the Social Worker as he will have an amazing transplant team and join a FB Support Group as they offer so much input prior and after surgery
2. Talk to family or friends as you will need support as caretaker and wife. You will need to get some me time.
3. He needs to walk, exercise do as much as he can prior and after.
4. Start looking for equipment ie shower chair and anything you may require as I know prior to my DLT I was very weak used a wheelchair, bath chair and commode, hated them so be prepared to meet with some resistance if this ends up happening, be proactive and see what your insurance cover and budget for what may be needed. There are a lot of free or reasonably priced items on your local marketplace
5. We had to learn the many meds I take as our meds are lifetime. Note my family took care of all for about 2 months then I took over this task. Sometimes depending on location the hosp team wants you close if listed. My understanding is each hospital different so write down questions
6. Stay positive as yes it’s scary but you and your husband will get through this.

I hope I helped a little as you are not alone and we are stronger than we know as having any pulmonary issues is difficult. Learn as much as you can as you will be your husbands advocate and fortunately or maybe not I did speak to my husband prior and made sure he understood what I wanted and left instructions on so many things to make it a bit easier as life moves even when we can’t. I left instructions on what I pay, passwords etc so my husband and children wouldn’t stress so much and let people help. God Bless you and your husband and you are added to my prayers🙏🏼🙏🏼🙏🏼

jackiez | @jackiez | Mar 24 7:28am

So sorry that you are going through all of this. It is scary, I know. I had a heart double lung transplant in April 2021. I am doing really good-so there are a lot of good news stories out there! Use those good news stories to gain confidence during your journey. And it is a journey.
Others have provided great tips and advice. I will add a couple more.
1. Lean on your family, friends and faith to help you both get through this. Although my husband and parents were my primary caregivers after surgery, a few close friends also stepped up to give them a break too.
2. It was mentioned to get ‘in shape’ before if possible. I also strongly suggest to do what he can to stay active-I was only able to walk short distances but I kept at it. Try not to sit. Keep moving.
3. Start researching places to stay for the duration of the pre and post surgery. Fortunately I had done this because I was hospitalized in an emergency situation and then didn’t get out until after my transplant. There are usually transplant houses for the caregiver at a reduced price. Longer term VRBO and furnished apartments are also options.
4. I strongly agree with the sharing of passwords, what bills he pays, etc to ensure you can cover these things. I was on a ventilator for 5 days before surgery and unable to communicate.
5. Lean on your friends and family and/or a therapist for you to talk with through all this. A lot of things will be going through your head-you need someone to talk with because your spouse will be dealing with a lot of his own concerns and I know you’ll want to be strong for him. My husband (and my parents) were my rocks-but it took an emotional toll on them (and they are tough people).

Good luck in the evaluation process. And utilize this forum for questions you have. It is a great resource.