Lung transplant

[BuffJim]

Anyone had one? @bikeman564™ I know you had major lung surgery, but not a transplant, right. 
My doctor prescribed two tests for me, then at the end of August we’ll start discussing plans. He casually mentioned that lung transplant seems to be the best option. He brought it up last fall, too. Sounds pretty drastic, but we’ll see what happens. I would think it’s high risk, high reward. And probably still 2 years off. 
He also told me to start cycling again as good therapy. So I’ll have to lube up the old bike. 
 @Parr8hed have you ever delivered one? 

[Johnny Come Lately Name]

10 minutes ago, BuffJim said:

He also told me to start cycling again as good therapy.

Hey....doctor’s orders....😉

 

🤞

[petitepedal ★]

The former board president of my home

condo has had one...he is certainly doing better than before ...I don't  know his health history other than he is diabetic and a former smoker.

[Longjohn ★]

8 minutes ago, BuffJim said:

He also told me to start cycling again as good therapy. So I’ll have to lube up the old bike. 

New York State is having their “virtual” Erie Canal ride this week. I think they are finishing up tomorrow. That ride was a hoot the year I did it. Started at Nickles School in Buffalo and went to Albany. Albany was all tore up with construction that year so we had some exciting detours. Finished at the train station on the other side of the river.

[bikeman564™]

@BuffJim I did not not have a transplant, I did have the upper right lobe removed (pneumonectomy), because it was collapsed as result from the carcinoid tumor blocking my upper right bronchial tube. There was a chance my entire right lung would have needed to be removed if the surgeon could not execute just the lobe. Luckily for me it was just the one lobe. Note: right lung is three lobes, left lung is one.  If chance I had the entire right lung removed, I would have inquired aboot a transplant. I never knew that was a possibility.

I will say it is a drastic operation. My recoverey fucking sucked. Painful. Most pain I've ever experienced. Not to be blunt, but I tell you no lie. I literally screamed at home because of the pain. After a few weeks it was tolerable. After a month, comfortable. Being on a epidural in the hospital helped a lot. These are common place for thoracic surgery I was told. Well worth it IMO.  I had one rib broken so they could access the lung and tumor removal. My incision is several inches long, and I had a drain tube. I was off work for three months, and the bike too. Then I started ride every day... yup. Thus far no side effects or issues of any kind...knock on wood, and it's been nine months.

Are you needing one or both lungs transplanted?

I wish you the best. Doctor's and science is amazing right now. PM me if you'd like to.

[groupw]

I can only speak 3rd hand. Little sister of a friend had advanced CF. They were actually preparing her for hospice when she got word of a donor. The transplant went ok. She had some infections but difficulty with the anti-rejection meds. At one point she had to be on dialysis for a short time because the meds were doing a number on her kidneys. 
I haven’t heard anything recently and I’m taking that as good news. Her sister (my friend) has been in a good place on her recent posts. I want her to enjoy some positive time. Between losing their dad and the roller coaster ride for little sis and a divorce amongst that, she deserves some uninterrupted happy time. 

[BuffJim]

6 minutes ago, bikeman564™ said:

@BuffJim I did not not have a transplant, I did have the upper right lobe removed (pneumonectomy), because it was collapsed as result from the carcinoid tumor blocking my upper right bronchial tube. There was a chance my entire right lung would have needed to be removed if the surgeon could not execute just the lobe. Luckily for me it was just the one lobe. Note: right lung is three lobes, left lung is one.  If chance I had the entire right lung removed, I would have inquired aboot a transplant. I never knew that was a possibility.

I will say it is a drastic operation. My recoverey fucking sucked. Painful. Most pain I've ever experienced. Not to be blunt, but I tell you no lie. I literally screamed at home because of the pain. After a few weeks it was tolerable. After a month, comfortable. Being on a epidural in the hospital helped a lot. These are common place for thoracic surgery I was told. Well worth it IMO.  I had one rib broken so they could access the lung and tumor removal. My incision is several inches long, and I had a drain tube. I was off work for three months, and the bike too. Then I started ride every day... yup. Thus far no side effects or issues of any kind...knock on wood, and it's been nine months.

Are you needing one or both lungs transplanted?

I wish you the best. Doctor's and science is amazing right now. PM me if you'd like to.

Today he said the bottom right hand side is where he heard crackling, a sign of pulmonary fibrosis. So not sure. I’d probably need a biopsy first, which I’ve heard is no picnic. 
 

This month I’m getting a full pulmonary function test, and a CT scan before I see him in 5 weeks. 

[groupw]

Follow up- I lurked on little sister’s FB page. She is posting like an average girl in her 20s for the last couple months! No mention of her lungs since March. 

[Scrapr ★]

on another board one of the long time members just had a transplant done. He lives on an island in Maine. I think he went to Boston for the duration. I quit the board a few weeks ago but I'll link you to it. It's a play by play pretty much by a friend on the board

transplantee is Piffin

http://forums.delphiforums.com/Breaktime_3/messages/?start=Start+Reading+>>

[bikeman564™]

12 minutes ago, BuffJim said:

Today he said the bottom right hand side is where he heard crackling, a sign of pulmonary fibrosis. So not sure. I’d probably need a biopsy first, which I’ve heard is no picnic. 
 

This month I’m getting a full pulmonary function test, and a CT scan before I see him in 5 weeks. 

I'm not sure what a pulmonary function test is, I had a lung test volume test at my pulmonologist's office.

I had three bronchoscopies, two flexible, one rigid. These were easy (to me). Knocked oot, they took between 20-40 minutes, then I woke up. Had sore throat for few days after the first one. When they where in me, they took samples for a biopsy, and also did ultra-sound, and checked my lymph nodes (which were good). They looked inside both lungs. So I would say getting a biopsy is easy. I also had a few CT scans, and a PET scan, PET was a nuclear test. The biopsies showed negative results for cancer, but the PET showed cancer, albeit contained in the cacinoid tumor. Problem w/ biopsies I was told is this: the entire tumor may be not cacerous, so the samples taken might not be of the cancer area. This is why the PET scan is critical. It highlights the entire tumor in orange if cancer cells (?) are present. Mine had orange in it.

 

[Dottleshead ★]

Where the hell is @petitepedal? Get your ass out there DeathJim!

[Ralphie ★]

56 minutes ago, bikeman564™ said:

I'm not sure what a pulmonary function test is, I had a lung test volume test at my pulmonologist's office.

I had three bronchoscopies, two flexible, one rigid. These were easy (to me). Knocked oot, they took between 20-40 minutes, then I woke up. Had sore throat for few days after the first one. When they where in me, they took samples for a biopsy, and also did ultra-sound, and checked my lymph nodes (which were good). They looked inside both lungs. So I would say getting a biopsy is easy. I also had a few CT scans, and a PET scan, PET was a nuclear test. The biopsies showed negative results for cancer, but the PET showed cancer, albeit contained in the cacinoid tumor. Problem w/ biopsies I was told is this: the entire tumor may be not cacerous, so the samples taken might not be of the cancer area. This is why the PET scan is critical. It highlights the entire tumor in orange if cancer cells (?) are present. Mine had orange in it.

 

I'll bet your excellent conditioning helped a lot with recovery and everything.

[bikeman564™]

14 minutes ago, Philander Seabury said:

I'll bet your excellent conditioning helped a lot with recovery and everything.

Very definitely. I stayed 7 days in hospital recovering to make sure all is well...typical for what I had done. On day 3 a doctor said "you don't look like you just had surgery few days ago". I know for a fact my being an endurance cyclist helped a lot in recover, no doubt.

[Ralphie ★]

3 minutes ago, bikeman564™ said:

Very definitely. I stayed 7 days in hospital recovering to make sure all is well...typical for what I had done. On day 3 a doctor said "you don't look like you just had surgery few days ago". I know for a fact my being an endurance cyclist helped a lot in recover, no doubt.

So Death Jim has homework to do!

[bikeman564™]

4 minutes ago, Philander Seabury said:

So Death Jim has homework to do!

[Airehead]

1 hour ago, Longjohn said:

New York State is having their “virtual” Erie Canal ride this week. I think they are finishing up tomorrow. That ride was a hoot the year I did it. Started at Nickles School in Buffalo and went to Albany. Albany was all tore up with construction that year so we had some exciting detours. Finished at the train station on the other side of the river.

First time I rode it we had 4 inches of rain in Albany. What a mess and now what a great party story. 
 

we have two 4 year olds in my program that had lung transplants. One six months ago and one about a year. Both doing amazing. 

[Guest]

My neighbor had a double lung transplant over 20 years ago. They told him then it might buy him 10 years. 

[Randomguy]

5 hours ago, bikeman564™ said:

Thus far no side effects or issues of any kind...knock on wood, and it's been nine months.

Any reduced capacity/does it slow you down on the bike?

[bikeman564™]

5 hours ago, Randomguy said:

Any reduced capacity/does it slow you down on the bike?

Nope , nothing noticable to me anyway.

[Parr8hed]

Yes, I have delivered many lungs for transplant.  I would be more than happy to help with any questions.  

[BuffJim]

25 minutes ago, Parr8hed said:

Yes, I have delivered many lungs for transplant.  I would be more than happy to help with any questions.  

Thanks. I read @Scrapr link from a guy on another forum. Pretty sobering. I’m sure I will have more after my next Pulmonologist appointment Aug 21. 

[Parr8hed]

31 minutes ago, BuffJim said:

Thanks. I read @Scrapr link from a guy on another forum. Pretty sobering. I’m sure I will have more after my next Pulmonologist appointment Aug 21. 

Keep in mind that I was completely on the procurement side of transplant.  I know a little about the procedure, recovery etc, but am much more versed in how to obtain said lungs.  

Lungs were a little tricky.  I don't want to discourage you from transplant, not at all.  But it seemed they either went really well or really NOT.  I think a lot has to do with how healthy the recipient was prior to transplant and of course the donor.  I would not jump at the first set of lungs offered.  There is usually a reason that someone else didn't use them.  I would advise to get weight off now.  Get as healthy as possible.  Eat well.  Get your heart health as good as it can be prior to transplant.  

[jsharr ★]

On 7/17/2020 at 5:23 PM, BuffJim said:

Anyone had one? @bikeman564™ I know you had major lung surgery, but not a transplant, right. 
My doctor prescribed two tests for me, then at the end of August we’ll start discussing plans. He casually mentioned that lung transplant seems to be the best option. He brought it up last fall, too. Sounds pretty drastic, but we’ll see what happens. I would think it’s high risk, high reward. And probably still 2 years off. 
He also told me to start cycling again as good therapy. So I’ll have to lube up the old bike. 
 @Parr8hed have you ever delivered one? 

Make sure the new lungs come with the correct seasonal air.  Do not want summer air lungs installed in January.

[Zealot]

On 7/17/2020 at 6:40 PM, bikeman564™ said:

@BuffJim I did not not have a transplant, I did have the upper right lobe removed (pneumonectomy), because it was collapsed as result from the carcinoid tumor blocking my upper right bronchial tube. There was a chance my entire right lung would have needed to be removed if the surgeon could not execute just the lobe. Luckily for me it was just the one lobe. Note: right lung is three lobes, left lung is one.  If chance I had the entire right lung removed, I would have inquired aboot a transplant. I never knew that was a possibility.

I will say it is a drastic operation. My recoverey fucking sucked. Painful. Most pain I've ever experienced. Not to be blunt, but I tell you no lie. I literally screamed at home because of the pain. After a few weeks it was tolerable. After a month, comfortable. Being on a epidural in the hospital helped a lot. These are common place for thoracic surgery I was told. Well worth it IMO.  I had one rib broken so they could access the lung and tumor removal. My incision is several inches long, and I had a drain tube. I was off work for three months, and the bike too. Then I started ride every day... yup. Thus far no side effects or issues of any kind...knock on wood, and it's been nine months.

Are you needing one or both lungs transplanted?

I wish you the best. Doctor's and science is amazing right now. PM me if you'd like to.

Wow!  I had no idea! Prayers for continued wellness and health!!!

[Zealot]

@BuffJim, prayers and vibes for the best possible outcome with this.  As has been mentioned, medical science has come a long way and has done pretty exemplary outcomes.  

[bikeman564™]

Just now, Zealot said:

Wow!  I had no idea! Prayers for continued wellness and health!!!

Thank you much. So far all is well   I don't see my surgeon til October, which will be a couple weeks shy of one year since the operation.

[Guest]

My father had one lobe of his right lung removed about two years ago. Until then i never knew your right lung has three lobes while the left only has two. He has done fine after the durgery.

[Zealot]

7 minutes ago, bikeman564™ said:

Thank you much. So far all is well   I don't see my surgeon til October, which will be a couple weeks shy of one year since the operation.

😊 Again, prayers offered. 

Life is complicated, my friend. We do the best we can and live as best we can.  Peace 

[petitepedal ★]

Physical condition going into surgery plays a role in the outcome at any age..but more so as we age. And continued activity after surgery plays a roll in the recovery as well.

All of my working out is to age gracefully...and to try and be as health as I can given the limitations of my genetics and family history.

Keeping you in my prayers @BuffJim  your doctors have spoken...give it hell 

[bikeman564™]

20 minutes ago, petitepedal said:

Physical condition going into surgery plays a role in the outcome at any age..

No kidding there I'm glad that I'm a cyclist.

[Prophet Zacharia]

On 7/17/2020 at 6:40 PM, bikeman564™ said:

left lung is one. 

Left lung is two lobes, left upper and left lower.

[Prophet Zacharia]

5 hours ago, Parr8hed said:

  I know a little about the procedure, recovery etc, but am much more versed in how to obtain said lungs.  

Any idea of the meds required to prevent rejection for just lungs? Around my town, they do a lot of heart/lung transplants, together. I guess they’re getting pretty good at them.

[bikeman564™]

18 minutes ago, Prophet Zacharia said:

Left lung is two lobes, left upper and left lower.

hmm, I thought my pulmonologist said its one...oh well.

[Parr8hed]

23 minutes ago, Prophet Zacharia said:

Any idea of the meds required to prevent rejection for just lungs? Around my town, they do a lot of heart/lung transplants, together. I guess they’re getting pretty good at them.

cell cept and prograft were the two big ones when I was working.  That's been 6-7 years ago.