1. < Lung Health

Paralyzed Diaphragm

Posted by giller198 @giller198, Jul 3, 2018

My name is John and I was diagnosed this past January with a paralyzed right diaphragm. Phrenic nerve damage has been ruled out because of the amount of time between my heart valve surgery and when this started. I still cannot figure how this happened, I have a couple of ideas but nothing conclusive. I have seen two pulmonary doctors and both say there is a surgical procedure that can be done but no guarantee that it will work. I would like to know if anyone out there has been diagnosed with a paralyzed diaphragm and if they had it fixed.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 28, 2019
In reply to @usmccam "@Teresa. After my 23rd appointment, my lobes collapsed and I have been in ICU on a..." + (show)
@usmccam

@teresa. After my 23rd appointment, my lobes collapsed and I have been in ICU on a machine and just got moved to a chronic care unit. Good news is that I do not have a paralyzed diaphragm as testing indicated. Bad news, however, is that I am end stage chronic Atelectasis from advanced Bronchiectasis. I have been placed into a Monarch chest vest to help dislodge the mucous plugs along with an airway clearance system and lung expansion therapy using the MetaNeb CPEP/CHFO system by Hill-Rom. So far the treatments are helping and I am able to breathe more comfortably while being bedridden. Whether or not I will be able to breathe again out of bed or without assistance remains to be seen. Thank you, everyone, for your help with this issue.

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@usmccam I am so sorry to hear that you are dealing with Bronchiectasis, I would like to invite @windwalker to this conversation as she is a volunteer mentor who leads a discussion group on MAC and Bronchiectasis and also @ethanmcconkey. I'm sure @windwalker will invite you to her discussion group. She and the others in her group talk extensively about those types of issues and have lots of experiences with different treatments.

I hope you begin to find some help and healing. Will you post an update again?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 28, 2019

@usmccam Hi there. I understand that you are in the hospital and having a pretty tough time. My name is Terri, and I mentor the mac and bronchiectasis group. Do you care to share your name? It is ok if you don't. I am sorry to hear that you are in the ICU and having so many issues with your lungs. Struggling to breathe is miserable, and I feel for you. Hopefully, they will get you straight very soon. I see you served in the Marines; thank you sir, for your service. I was trying to figure out why you chose the handle usmccam, I get the USMC, but the cam has me stumped. Does it have anything to do with camshafts for airplanes? Please don't laugh, I am guessing. As for me, I am a Navy brat. My dad was on submarines most of his 20 yrs in the service. If you have questions that are lung related, especially bronchiectasis, I can try to help. Am here for you also if you just want to chat. Meanwhile, try stay positive. - Terri

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Merry, Alumni Mentor | @merpreb | Mar 29, 2019

@usmccam- I am sorry for the delay in responding to your posts. I am a lung cancer survivor with 2 missing lobes and other treatments that have scarred my lungs. Not being able to breath is everyone's nightmare and when it actually happens to you the reality is even worse. I am so so sorry that you are going through this. Sometimes when an infection takes hold, and wont let go, it spreads so fast that meds can't keep up. I'm glad that you have some relief now. I can't tell you what is in the future, some of that is up to you. Have you called in hospice? Is your family with you> Have your doctors explained what you should expect? Have you asked them? Thank you for your service. I hope that you will respond back to me for as long as you can.

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usmccam | @usmccam | Mar 30, 2019

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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7 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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Help @usmccam

I appreciate your sharing more of your health history and life experience. We have had many Members on Connect who have shared about their health problems related to Agent Orange.

As you mentioned that you were looking at the possibility of a lung transplant, I would like to invite @rosemarya to this conversation. She has had two transplants and would be happy to share with you.

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alamogal635 | @alamogal635 | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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Thank you for writing. You will find support here even if you have no family. I am in the same boat a far as no family left. It can get lonely, but I think of this group and the lung Cancer group as "family." Hope you can do the same. There is lots of support here and people who have great knowledge from personal experience. Just had my lower right lung lobe removed due to cancer. Am recovering, but stay in awe of people like you and others who have been through so much. I encourage you to fight for the lung transplants and to continue with you hope and faith. You will be in my thoughts and prayers. Please keep us informed about your situation. God bless you.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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@usmccam Hello again. It does sound like a lung transplant might be the answer for you. I know that the Mayo clinic will do them up to age 70, a little older if a person is fit. They have also been known to do them when they are a person's last bastian of hope. May I ask what part of the country you are in?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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@usmccam I just zoomed in on your photo and see the breathing apparatus you are on. That is some serious stuff there, but thank God for modern technology. If you were to have a lung transplant, would the VA do it? Or would you be sent somewhere that specializes in that? Just want you to know that I am here and can keep you company since you are immobile at this time. I will keep you in my prayers.

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All_in_1963 | @burrkay | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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@usmccam you are truly amazing! Keep up the fight! Thank you for your service sir! You are in my prayers every day!

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 30, 2019
In reply to @usmccam "@Terri,@Merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus..." + (show)
@usmccam

@terri,@merry,@teresa My causation for Bronchiectasis is Agent Orange-related according to VA testing results for 30 plus years. My left lower lobe was removed in 1975 for Bronchiectasis after being shot in Vietnam in 1969. My right lower lobe was removed in 1980 due to Bronchiectasis. My right middle lobe was removed in 2014 for lung cancer. My left upper and right upper lobes have advanced Bronchiectasis. with chronic Atelectasis which is where I am currently. I have consulted Hospice care but have not activated them yet. The Hill-Rom therapies are allowing me to breathe while in bed and motionless. The key here is that as long as my pulse remains under 72, I am okay but any higher than that I have much difficulty as I cannot breathe fast enough to catch my pulse rate and then my syncope kicks in causing unconsciousness due to lack of oxygen. As long as I remain in bed motionless I am okay. I am a Marine and will continue to fight this battle for air. My doctors have explained my prognosis which is bleak. Unfortunately, I have no family, so am on my own basically. I am going to request a transplant and see if it is possible at my age (70). Until that happens, I will continue to fight to breathe and make the most of my situation. Thank you for your encouragement and good wishes.

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@usmccam Thank you for your service. You have been through a lot. My dad was in the Naval Reserve, and he wrote the most beautiful letters to my mom before and after they were married from aboard ship. It let me see a fun silly side of my dad that I hadn't known. Several of my relatives have been in the military too. Remember that you're not alone, and you are welcome here.

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