I understand how hard it can be when your oxygen is dipping. At the end before being hospitalized, my oxygen would dip into the 30s when I walked 10 feet. I couldn't get my oxygen above 80s and that was after lying down for over an hour after doing anything. I used to pray to God to give me breath.
They believe that the fainting was due to a reaction of high doses of the medication to counteract the rejection.
Tina is featured in this week's Member Spotlight, interviewed by fellow transplantee, @rosemarya. Tina talks about acceptance and findng answers together on Mayo Clinic Clinic. Learn about her passion for zapote ice cream and how someone can have joy with hurting feet with every new breath. 🙂
Tina is featured in this week's Member Spotlight, interviewed by fellow transplantee, @rosemarya. Tina talks about acceptance and findng answers together on Mayo Clinic Clinic. Learn about her passion for zapote ice cream and how someone can have joy with hurting feet with every new breath. 🙂
I have a very high pain tolerance and everyone is really different. The most important thing is to keep moving forward. Get up and walk even though you are in pain. I would ask the nurse for my pain meds and get up and walk laps around the floor and then added stairs to it. I have spoken to some other people and they were in the hospital a lot longer than I was after the surgery. I wanted to be able to do things with my son, so I didn't want to just sit around. Other people that took longer, after hearing their stories, gave into the pain more. They wouldn't get up and walk, because they were in pain. My doctor told me there was a small window to get the lungs fully functioning. I didn't want to lose the opportunity and my lungs actually grew a little.
Rosemary, Volunteer Mentor | @rosemarya | Feb 6, 2024
@vollenweider6154, I just read in the 'Snapshots of hope, Life on the other side of transplant' discussion that you are on the lung transplant list. I can understand the fears that you are experiencing as your health is affected while waiting and hoping for your transplant. You are noy alone in this.
I would like to invite you to meet @chickytina who is a lung transplant recipient. What would you like to know from her about her transplant experience?
I am 69 and in generally good health, except my lungs. I have A1AT (Alpha-One Anti-Trypsin Deficiency), and my doctor suggested I be evaluated for a lung transplant. So I am truly at the beginning stages of even contemplating this, nevertheless figuring out how and what steps I need to get started: hospital reviews, location, factors that qualify or disqualify a potential lung recipient, etc. So any and all advice is extremely welcome.
I am 69 and in generally good health, except my lungs. I have A1AT (Alpha-One Anti-Trypsin Deficiency), and my doctor suggested I be evaluated for a lung transplant. So I am truly at the beginning stages of even contemplating this, nevertheless figuring out how and what steps I need to get started: hospital reviews, location, factors that qualify or disqualify a potential lung recipient, etc. So any and all advice is extremely welcome.
Do your research on the doctors and facilities. However, after you choose which one is best for you and that your insurance is accepted at (with no issues of renegotiations that might affect you), there is a battery of tests that you need to go through to see if you are a good candidate. This is so that you have the best outcome. The tests can take some time to do or if you are in bad shape by the time you get an appointment (like I was) they may rush the timing of all of the tests. I had 4 days of tests that I just pretty much spent the whole day at the hospital for tests. After all of the tests are done they evaluate your condition and may or may not put you on the wait list. Based on your condition is the number that you are given from 1 (perfect lungs) to 100 (pretty much its over). Most people receive a transplant from 35-50. I had a rank of 75. I had my double lung transplant and am able to do so many things I wasn't able to prior to the surgery.
Right now you might be contemplating, but you might get extremely worse quickly and not really have the time to consider where to go. So I would advise that you do the "leg work" now and then if you decide to withdraw later you have the option.
I know that Duke University has a very active lung transplant team and a new Director. Vanderbilt also has been seeking candidates. It appears that the age requirement has gone up. Older than 65 individuals were not considered good candidates but now they are accepting up to 75. Seek out programs from the larger Medical Centers ie john Hopkins, Cleveland Clinic, Mayo, depending where you live and your ability to travel. It's alot of computer/telephone work but well worth it. That is how I learned about Pulmonary Zephyr Valves and hed them inserted at Duke. Helped tremendously- I have Stage IV COPD
Wow, that’s great. I had my DLT & a heart repair at UCLA. I started my real transplant journey when Kaiser referred me in May of 2023. Insurance finally authorized me in October of 2023 and we are assigned to a Pre Lung Coordinator and a Pulmonologist. The staff at UCLA are amazing and you will be provided with a big white binder, go through it and you will need at least 3 caregivers have them review as well. UCLA has a FB group for Pre-Post and caregivers where many questions the doctors don’t tell us are discussed or you can scroll through and find so many topics and insight from those who have been there or going through something similar as we are all different. Join as this group helped me so much. Once you see the surgeon he is the one who decides yes or no after reviewing all tests results and once discussing all with the team of doctors. Your case will be presented to the team as they have weekly meetings to discuss patients cases. Once he says yes you are placed on the universal list and assigned a number based on criteria ect. I waited less than 3 months and had my DLT March of 2024 once discussed with the surgeon. The journey we take has ups and downs and not always easy or easier for some and harder for others. The one thing I do do is I am super blessed and would do it all over again as I have been given a 2nd chance at life and enjoy the good with the bad but, so far there has been nothing like before. As prior to my transplant I was given 1 year to live. If you have questions let me know and look forward to one day seeing you on the FB group where I have had inspiration from some who are 17 + years post and living there best lives.
I understand how hard it can be when your oxygen is dipping. At the end before being hospitalized, my oxygen would dip into the 30s when I walked 10 feet. I couldn't get my oxygen above 80s and that was after lying down for over an hour after doing anything. I used to pray to God to give me breath.
They believe that the fainting was due to a reaction of high doses of the medication to counteract the rejection.
Praying your now living your best self. Thank you for sharing.
@helenrivera @windwalker @jackiez @nnelson823 @djallan @mariakathleen @shariscorner @sbt19 @spider109 @beckbeck67 @chrisxkauffold @abmac - many of you have connected with @chickytina in the Transplants Support Group.
Tina is featured in this week's Member Spotlight, interviewed by fellow transplantee, @rosemarya. Tina talks about acceptance and findng answers together on Mayo Clinic Clinic. Learn about her passion for zapote ice cream and how someone can have joy with hurting feet with every new breath. 🙂
- Dancing til my feet hurt with new lungs: Meet @chickytina https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/dancing-til-my-feet-hurt-with-new-lungs-meet-chickytina/
FYI, my name is not Tina. Chickytina is a nickname my husband gave me 20 years ago.
I have a very high pain tolerance and everyone is really different. The most important thing is to keep moving forward. Get up and walk even though you are in pain. I would ask the nurse for my pain meds and get up and walk laps around the floor and then added stairs to it. I have spoken to some other people and they were in the hospital a lot longer than I was after the surgery. I wanted to be able to do things with my son, so I didn't want to just sit around. Other people that took longer, after hearing their stories, gave into the pain more. They wouldn't get up and walk, because they were in pain. My doctor told me there was a small window to get the lungs fully functioning. I didn't want to lose the opportunity and my lungs actually grew a little.
@vollenweider6154, I just read in the 'Snapshots of hope, Life on the other side of transplant' discussion that you are on the lung transplant list. I can understand the fears that you are experiencing as your health is affected while waiting and hoping for your transplant. You are noy alone in this.
I would like to invite you to meet @chickytina who is a lung transplant recipient. What would you like to know from her about her transplant experience?
I am 69 and in generally good health, except my lungs. I have A1AT (Alpha-One Anti-Trypsin Deficiency), and my doctor suggested I be evaluated for a lung transplant. So I am truly at the beginning stages of even contemplating this, nevertheless figuring out how and what steps I need to get started: hospital reviews, location, factors that qualify or disqualify a potential lung recipient, etc. So any and all advice is extremely welcome.
Do your research on the doctors and facilities. However, after you choose which one is best for you and that your insurance is accepted at (with no issues of renegotiations that might affect you), there is a battery of tests that you need to go through to see if you are a good candidate. This is so that you have the best outcome. The tests can take some time to do or if you are in bad shape by the time you get an appointment (like I was) they may rush the timing of all of the tests. I had 4 days of tests that I just pretty much spent the whole day at the hospital for tests. After all of the tests are done they evaluate your condition and may or may not put you on the wait list. Based on your condition is the number that you are given from 1 (perfect lungs) to 100 (pretty much its over). Most people receive a transplant from 35-50. I had a rank of 75. I had my double lung transplant and am able to do so many things I wasn't able to prior to the surgery.
Right now you might be contemplating, but you might get extremely worse quickly and not really have the time to consider where to go. So I would advise that you do the "leg work" now and then if you decide to withdraw later you have the option.
I know that Duke University has a very active lung transplant team and a new Director. Vanderbilt also has been seeking candidates. It appears that the age requirement has gone up. Older than 65 individuals were not considered good candidates but now they are accepting up to 75. Seek out programs from the larger Medical Centers ie john Hopkins, Cleveland Clinic, Mayo, depending where you live and your ability to travel. It's alot of computer/telephone work but well worth it. That is how I learned about Pulmonary Zephyr Valves and hed them inserted at Duke. Helped tremendously- I have Stage IV COPD
Wow, that’s great. I had my DLT & a heart repair at UCLA. I started my real transplant journey when Kaiser referred me in May of 2023. Insurance finally authorized me in October of 2023 and we are assigned to a Pre Lung Coordinator and a Pulmonologist. The staff at UCLA are amazing and you will be provided with a big white binder, go through it and you will need at least 3 caregivers have them review as well. UCLA has a FB group for Pre-Post and caregivers where many questions the doctors don’t tell us are discussed or you can scroll through and find so many topics and insight from those who have been there or going through something similar as we are all different. Join as this group helped me so much. Once you see the surgeon he is the one who decides yes or no after reviewing all tests results and once discussing all with the team of doctors. Your case will be presented to the team as they have weekly meetings to discuss patients cases. Once he says yes you are placed on the universal list and assigned a number based on criteria ect. I waited less than 3 months and had my DLT March of 2024 once discussed with the surgeon. The journey we take has ups and downs and not always easy or easier for some and harder for others. The one thing I do do is I am super blessed and would do it all over again as I have been given a 2nd chance at life and enjoy the good with the bad but, so far there has been nothing like before. As prior to my transplant I was given 1 year to live. If you have questions let me know and look forward to one day seeing you on the FB group where I have had inspiration from some who are 17 + years post and living there best lives.