How do you get in the loop for a possible lung transplant?

I had my double lung transplant on May 4-5, 2022. My regular pulmonologist gave the referral to the transplant pulmonologist. They put me through a regiment of tests and then had a panel discussion of my case. After this I was registered for the transplant list. Based on all of the information sent by the team, they will rank your condition. From what my transplant team said, most transplants are done between 35-50. When I had my transplant, I was rated as 75. I was on 30 liters of oxygen and had lost a lot of weight (weighed 95 pounds).

It is not an easy operation on your body though. When you first come out they don't ask if you want pain killers, they know you need them. Then they slowly ween you off of them and you can still have Tylenol. You need to take a lot of medication. Before the surgery, I took 4 different medications. After, at first it was 17 different medications. You need to take your stats for the first 16 months four times a day. I just got reduced to only needing to take my glucose levels four times a day and the others twice (I was never diabetic and my low blood pressure was not a concern previously). You will get used to having some underlying pain though and it isn't too bad. To me it feels like you are wearing a bra that is too tight. From my understanding, this never goes away.

You need to change your diet for the rest of your life. I call it the transplant diet. You will never be able to have medium rare meet again. No sushi or ceviche or anything where they make them due to possible cross contamination. No grapefruit, pomegranate, bananas, plantains, papaya, etc. You need to watch your sugar in take because the medication artificially raises your blood sugar (up to 50 points just with the meds). You need to watch your potassium intake because it also raises your potassium levels. Lastly you need to make sure that you are on a high protein and magnesium diet. I take 6 magnesium pills daily, but still need more magnesium.

You need to be careful of social gatherings due to being immunocompromised. Children are scary. They get vaccinations and you shouldn't be around anyone that is vaccinated within 2 weeks. I went to a wedding this weekend. You can pick me out in all the pictures easily, I'm the only one with the mask on.

@beckbeck67 welcome to Mayo Clinic Connect. I have had a pancreas transplant and don’t know much about lung conditions that would lead to the need for a lung transplant. What I do know is that a transplant starts with a pre-transplant evaluation. This requires a Transplant Center. I respect the work done at Mayo Transplant Centers. An added benefit is that there are 3 campuses across the country (Minnesota, Florida and Arizona). They are affiliated. This helps to broaden the donor base to draw from. Do you have a pulmonologist that is in support of your need for a lung transplant? Perhaps s/he can pave the way, make introductions towards getting you started on pre-transplant evaluation.

Thanks.. my pulmonologists is not to helpful. Soooo! I am on my own.. all the mds that I have spoken with say I am too. Old and lose out in that catagory!

I don't know about any age restriction, because that was not an issue in my case. However, you do need to be within 2 hours of the center after you are listed at all times.

Don't ever stop at 1 or 2 doctor's opinions, keep going. If you have a cell phone, go to Google and put in "requirements for lung transplant surgery" "age restrictions for lung transplant surgery" etc Never give up! You have to be your own advocate. If your doctor won't reser you ,refer yourself. Find out your nearest transplant center and go there yourself with all your records. Good luck 🙂

Hello, speak to your doctor if interested in a Lung Transplant. I asked for about a year if I was a canidate and was told I was not. This year I insisted. Was referred to a Lung Transplant specialist and she stated I was a canidate. I understand the earlier you see a Lung Transplant MD the better as I lost a lot of time and my health has declined. You can also go for a 2nd opinion at one of the top places like Mayo or National Jewish Health. Hope this helps. Good luck.

@beckbeck67, I'm tagging @keggebraaten to help give you more information about getting evaluated for lung transplant.

You might find these articles helpful too:
- Getting Listed for Transplant https://connect.mayoclinic.org/blog/transplant/newsfeed-post/getting-listed-for-transplant/
- About Lung Transplant https://connect.mayoclinic.org/blog/transplant/tab/lung-transplant/#ch-tab-navigation

How are you doing?

A lot of great comments in here, I had a heart double lung transplant 8 months ago. The post about all the changes with medications, immune issues, diet, and diabetes are all there and are very real, it's basically a whole different lifestyle. I'm pretty sure I read somewhere that you do not need a referral to contact the Mayo Clinic Transplant team. I had a 1 day interview, 5 day evaluation and testing, went on the list in December, transplant in January. I had IPF, fibrosis can be really horrible! The initial interview determines need and health to see if you are a candidate. I just looked at the American Lung Association and the 'guideline' is 65 years old but they state clearly that this is NOT a hard number and many people over 65 get lung transplants. At 62 I was at the upper end of the age range for heart-lung but everything else worked out.

Best of luck, keep pushing forward!

Hi @chrisxkauffold, it's a pleasure to finally cross your path. You've answered a lot of commonly asked questions about age and getting evaluated. I look forward to learning more about your transplant story. Will you share it here?
- Organ Donation and Transplant: What is Your story https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

@chrisxkauffold, I was on vacation when you posted this Happy Message that you received a heart double lung transplant only 8 months ago. My transplant was 14 years ago (liver and kidney) at Mayo Rochester. I remember meeting a some ling transplant patients while staying at the Gift of Life Transplant House. At that time I was really too sick to interact with them. It was the first time that I had met anyone with a lung transplant. I'm rambling, but I really wanted to say, Welcome to the Connect Transplant Support Group!

Chris, I hope that someday, you will feel ready to share your story in the link that Colleen provided. In the meantime, How are you and How is the recovery going for you? Are you at home? Have you been able to participate in any of your pre-transplant interests?