Costco

this thread was like a morbid episode of House. Glad it's nothing too crazy!

Mr Marco

Just started drinking tap water again...back to bottled it is.

usdmJON

Good to hear things are turning up.

Only advice is never self diagnose on the internet. Even just for curiosity sake. You will see the worst of the worst and end up scaring yourself half to death.

Majofo

Tap water.. fuck.

Here's to a speedy recovery

WdnUlik2no

Went to the doctor today for a follow up, and the 5 months of steroids and antibiotics I have been on have done nothing for my condition. The doctor is stumped and according to the months x-rays and breathing test I took today, I have actually gotten worse.

He referred me to Emory for a second opinion, but after calling them up, I can't be seen until March. The only way I can get to be seen sooner is to have to have a life threatening emergency and have to go to the ER.

I asked him to taper me off the steroids (now @ 60 mg per day) because they are not helping anyway and he agreed, but he wants me to stay on the antibiotics, but I don't think they are helping either.

Having to wait until March to get a second opinion is ridiculous, but I don't know what else I can do.

Moog-Type-S

Wow.

5 months wait for 2nd opinion?

I hope you find answers sooner.

Hang in there.

Majofo

Sheesh.. do you live in Canada?

Acura_Dude

Hope you get well soon!

Whiskers

Def get another opinion.

wndrlst

Does it have to be Emory? Can you travel somewhere else like Mayo or Johns Hopkins? Waiting that long seems like a really bad idea.

I'm sorry you're going through this. How very scary. Good luck to you.

WdnUlik2no

Yep, this sucks big time. I just want them to find out what it is so they can treat it properly. I hate taking medicine for nothing.

The receptionist at my doctor's office called Emory directly and was able to get me an appointment in late January which is a lot better than March so I think I can hold out for a month and a half. But these waiting periods are ridiculous. I remember a time I could see a doctor within a week's time, now its weeks to months.

In the meantime I have an appointment with an infectious diseases doctor on Tuesday so maybe he can help me until then with better meds or treatment. I actually saw him a month ago about this issue and he gave me additional antibiotics, but they haven't helped.

Majofo

justnspace

iTrader: (1)

damn dude.


sending you good vibes.
I would send you mafojo mojo, but I dont think thats your kind of thing

wndrlst

Yes, they are. I've been on a specialist merry-go-round lately, too, and I'm appalled by how long I've had to wait for some of them. Our medical system is badly broken.

WdnUlik2no

Hi all, I know its been a while since I've been on here, but I didn't want to come back until I got a definitive diagnosis. As you know Ive been given the run around for the past 8 months or so dealing with long wait times and doctors who had no idea what was going on.

Last I posted I was supposed to go to Emory for a second opinion. I have been there three times since I last posted and completed a bunch of tests and CT scans.

Unfortunately the diagnosis is Pulmonary Fibrosis which has a poor prognosis. He is already mentioning a lung transplant for both lungs but wants to see if he can get the disease under control before he goes that route but in 3 years I may in fact need transplant surgery. Worst case of course is I have about 5 years left going from other cases from others with the disease.

I don't really know how to take all this right now, I guess I'm still in kind of a shock, I didn't expect to have such a devastating diagnosis before I even got a chance to turn 40.

Thanks again for all you guys' support and concern, you have no idea how much I appreciate it.

Majofo

That's unfortunate but at least they have a consensus on the diagnosis. All of our time here is limited. All we can do is soldier on and make the most of what we're given. I have hope that you'll be a good candidate and get donor lungs. Stay strong and in good spirits.

wndrlst

Shit.

Thank you for the update. It's brave to come back to talk about it. I, too, hope you are a good candidate for a transplant. I can't imagine what you're dealing with emotionally right now. It's got to be beyond hard to wish for donor tissue, knowing where it has to come from.

My grandmother has pulmonary fibrosis. She's been hanging in there for several years, but her activity has become pretty limited in the last year or two.

I don't know what to say. I'm just really, truly sorry you're going through this.

justnspace

iTrader: (1)

despite what some say, we're family.
we're pushing for you, man!

doopstr

Sorry to hear about the diagnosis but at least now you know WTF is going on and can have an action plan. I wish you the best of luck!

Acura_Dude

Hopefully everything will work out for you. Thanks for coming back and sharing that with us.

Costco

Didn't expect that... it was looking really positive. Sorry that you're going through this. It still can't be as bad as dealing with Falcons fans giving you crap all the time...

rossv1

I'll be praying for you.

Acura_Dude

Same here. We're pulling for you, OP.

Scottman111

Horrible news. Wishing the best for you.

The Dougler

iTrader: (1)

We are all here wishing the best for you. AZ is a large dysfunctional family.

Majofo

Sending good vibes

Willie3.5

OP any updates? We're definitely here for you.

WdnUlik2no

Update: My health took a drastic turn for the worse last December. I was placed on supplemental oxygen this past February when my lung capacity dropped to 44% and my O2 sat levels dropped to under 80% during the 6 minute walk test. I was placed on the lung transplant list late in March. I eventually had to use supplemental oxygen 24/7 but still continued to work and exercise with the assistance of my oxygen tanks. Despite using oxygen, my heart rate would jump to 160bpm and O2 saturation would drop to the low 80s just from walking on the treadmill.

Late afternoon on June 9th while at work, I received a call from the transplant center that donor lungs just became available. I arrived at the hospital about an hour later and early morning on June 10th, I met with the surgeon and then rolled into the operating room to undergo surgery. I don't remember anything else other than the anesthesiologist telling me that I was about to feel drunk. I woke up hearing a lot of talking but couldn't really understand what they were saying other than that they started my antirejection meds. I later found out it was the afternoon on June 10th and that the surgery took about 12 hours.

I was in ICU for about a day, then I was transferred to the regular hospital which I spent a little over 2 weeks before being transferred to the rehabilitation house where I stayed for another 8 days before going home.

During this time I had quite a few setbacks, including a collapsed lung, some mild rejection, two pounds of fluid in my chest cavity that had to be drained manually, lung infections, a readmit due to anemia, and another due to severe dehydration.

I'm taking nearly 30 pills a day, including a second breakfast of 17 pills in the morning. I also have routine bronchoscopies, CT scans, Xrays and PFT's, but they are getting less frequent the further I'm out from surgery.

Now I still struggle with stomach issues, (nausea, vomiting) most likely due to medication, and a lingering chest tightness that comes and goes. I've also lost over 30 pounds. But I'm now back in the gym starting off slowly mainly concentrating on cardio, but I am also starting on weight training. I hope to be back to work by December, and close to full strength sometime next year.

Its been quite a journey and I still have a long way to go.

Despite all the setbacks and complications it feels good to be able to breath again. The doctors are happy with my progress and are confident the donor lungs will get even stronger over time which is even more encouraging.

I am forever grateful to my donor family for the sacrifice they have made. I don't know who my donor was, but apparently 5 lives were saved that night because of their selfless action.

Majofo

Majofo

I've been worried and expecting to hear the worst. I've seen you post somewhat since your last post here. But didn't want to bump the thread asking for an update since not all news is good. I figured if something positive came about, you'd post. I'm glad to hear you got a transplant and it took. Will the new pipes last you +50 years?

WdnUlik2no

Thanks Majofo

50+ years is pushing it even if I weren't sick. . I never expected to live to my late 80's if I were completely healthy. People in my family tend to not live past 90 especially on my dad's side.

I've heard of many people that are 20+ years out from transplant and still going strong. I expect to be one of those people. According to WebMD, only 50% of people coming out of a double lung transplant (bilateral) only survive past 5 years. But I refuse to give into that fear mongering BS. I haven't been back to WebMD since being diagnosed because I realized they thrive off of scaring people and only go by numbers and not individual people.

The doctors told me that because I was young and healthy before transplant I have a much better chance of surviving a long time after my transplant. They also said those statistics include people who die for reasons not related to transplant (accidents, natural causes, etc.) While discussing the transplant list, the doctors considered me an "excellent" candidate. They also told me that if I wasn't a good candidate for transplant they would have never listed me.

I fully expect to live a long time with these new lungs.

Majofo

Every day is a blessing. Don't be a stranger, keep us updated!

wndrlst

I'm so glad to see this update - I was just thinking of you last week. That's an awful road you've been down, but your attitude is incredible. I hope you continue to get stronger and thrive with your new lungs.

to your donor. Saving 5 lives is a huge gift.

Majofo

Checking in on you dood! You haven't posted in a year but I see you logged in a couple months back..

@WdnUlik2no

WdnUlik2no

Thanks for checking up on me.

Still doing great. A lot of setbacks, but pretty much back to normal now. Went from 30+ pills/day to just 20+ and returned to work January of this year. At this point I've gained pretty much all my weight back and I'm back to playing football and basketball and still working out.

Still there is always a risk of rejection and an infection or flu could be lethal for me so I do have to take precautions to avoid getting infected especially around sick people and I should avoid young children as much as possible. However I'm going to enjoy my second chance at life. Without the transplant I wouldn't even be here today.

Majofo

That's awesome.. will there be a day when the lungs will be a part of you 100% without drugs or worry of infection?

WdnUlik2no

Nope unfortunately not. The body will always try to attack the new organs so the meds are a lifetime commitment. The further you get out, the risk of infection goes down and possibly the risk of rejection as well but it will never be zero. Rejection can happen at any time without warning. There is research going on that kidney recipients can possibly go without taking anti rejection meds but I don't know if studies were done for other organs yet. So for the foresable future I'm on these meds daily for the rest of my life.

Majofo

That's wild..
I'll say it again.. every day is a blessing..
Glad you're active again, feeling good, and have a good perspective on life!
Don't be a stranger!

Oh Sickest TL

iTrader: (3)

KaMLuNg

iTrader: (5)

that's great to hear that things are moving along positively...