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T O P I C    R E V I E W
Sokcap48 Posted - May 21 2016 : 4:48:33 PM
Hi all-Thought I would start a new thread instead of using Connie's old one. They passed me on the first round of tests: ABG, full PFT and 6MWT. Said I did a strong 6MWT. I am worried about my acid reflux. I told them I have some with certain foods
So don't know how it will all work out. Don't know if I am more worried or excited. Wished I could clear my mind of it all for awhile.
Thx Paul
40   L A T E S T    R E P L I E S    (Newest First)
andy55 Posted - May 31 2019 : 3:59:53 PM
Last Monday (May 20) I attended a TX support group meeting with my wife. There was a guy in the meeting who kept coughing. I considered leving the meeting or at least moving away from him, but I didn't. Too bad.
By Wednesday afternoon, I had a sore throat. Thursday morning I was sick. Coughing, phlegm, my lungs felt raw and irritated. Breathing was more difficult than before as well. The sore throat went away, but the phlegm and coughing remained. This past Wednesday, I went to Critical Care to get an Xray to see if I had pneumonia (I did not). But I continue to suffer from phlegm in my lungs and cough it up periodically. Today, I went outdoors for awhile and got into some real breathing trouble. I feel sure that if I didn''t have my O2 with me, turned up almost to the max, I may not have made it home. My lungs feel tight and even with O2 I sometimes still get SOB. I think that the phlegm problem will eventually go away as I recover from this bad cold, but I'm not sure whether it may have done further damage to my lungs. My next PFT and TX team interview are in early July.
andy55 Posted - May 26 2019 : 8:35:31 PM
OK, Paul. Done.
Sokcap48 Posted - May 23 2019 : 10:43:00 AM
andy55- I can’t because you have no contact info listed. Update your profile.
Thx
andy55 Posted - May 07 2019 : 1:07:10 PM
Paul, I tried to PM you but the system won't allow it. I don't have enough posts yet.
Can you PM me your email?
Thanks,
Andy
Sokcap48 Posted - May 03 2019 : 7:21:14 PM
Best wishes to you and yours. If you have questions or if your caregiver has questions I and my wife are more than happy to help. I was just in Phoenix Monday for a clinic visit Maybe we can hook up one of these trips, we spend a lot of time in AZ. Keep up with those squats and walking it will pay off. The stronger you are going in the better you will be coming out of surgery.
Paul

If you want PM me and I will give you my email.
andy55 Posted - May 02 2019 : 10:39:33 PM
Paul, I plan to have my procedure done at Banner University Hospital in Tucson where I live. I was contacted today about starting coronary rehab, but I am not sure I want to do it now since I was in pulmo nary rehab two years ago and will need it again after Tx. Plus, i use my own treadmill several times per week for 40 minutes each time. My leg muscles are strong. I don't know...the closest rehab program is 1/2 hour each way. My medicare will pay for up to 36 sessions, so money is not the issue. I may do 2 days per week for 10 weeks or so. Butr after Tx I will have to do it no matter what.
Anyhow, thanks for your support. I really appreciate it.
Dave-OH Posted - Apr 13 2019 : 11:44:25 PM
Part of being approved for a transplant is a support system. When I had my evaluation in 2003, my wife was there. My parents were alive. My step son was 90 minutes from the center, and it was the VA. I recovered, so did not have a transplant.

This year started the process again. I live with my wife, and we are 100 miles from 3 transplant centers, but not my choice. My choice is Hopkins, about 8 hours away. The reason, my step-son and granddaughter live an hour away, his girlfriend is a cardiac nurse on staff who knows all the key nurses. I made the choice for support for me and my wife if I do need it. I am at the pre-list stage, but have had 2 big scares.

I could pick almost any center including Barnes, Cleveland Clinic or Pittsburgh, but picked the one with my best support system.

People to support you pre and post is critical for success.
Jan-KS Posted - Apr 13 2019 : 12:16:30 PM
I qualified at Barnes in St Louis a few years ago. About 7-8 hours away from where we lived. Problem was I couldn't possibly afford to live there. My husband had 8 heart attacks and was killing himself trying to care for both of us - but he was ready to "sell all" and move. Problem was we were upside-down on our house loan (as many were). I had no idea Medicare or my insurance wouldn't cover living expenses due to a transplant. That kind of limits who is a good candidate.

As my health has declined (FEV19, 23 post inhaler) my anxiety level has increased. My dear husband slipped on some ice at a car dealership and burst a blood vessel in his brain. Due to the heart attacks he was on multiple blood thinners. He was hospitalized for 2 weeks in critical care as we saw him slowly decline - sometimes coherent most of the time not. I had to make the decision to stop life support (I didn't want to but his children were pressuring me) For me life was a horror trying to get up to the hospital everyday and walk that distance with multiple O2 tanks in a little cart I could barely push. The kids were all out of sick leave time and one (with 5 children) really needed to be home. Is that a good reason to "pull the plug" - I don't know, but 30 minutes after they turned off his bi-pap machine and gave him a high dose of morphine and he still struggled to breathe - he finally passed away. I pray that nobody has to watch such a horror - I can't imagine what it was like for him.

So now my dad is in a nursing home. My mother died, my husband died. I have no siblings. My daughter and her husband work 50+ hours a week but hope to buy a house and have a baby in the next couple of years. I have NOBODY to care for me on a daily basis, much less in a strange city. I have narcolepsy and don't dare drive the monotony of a highway or I will go to sleep. Medicare and my insurance doesn't pay for a permanent home health care nurse for transplants.

So - are you people rich or something? How do you afford all the expenses not covered for a transplant. Are you all just lucky to have somebody in your life able to care for you? Are you aware that there is only a 50%-60% survival rate for 5 yrs post transplant. A very physically fit man in my rehab class died 1 YEAR post transplant due to rejection. While there are days I want to die due to shortness of breath - I'm terrified of dying due to rejection. Even with my low FEV1 my life expectancy is about 5 yrs (they told me the same thing 10 yrs ago and I'm still alive). Are you scared of rejection and other complications you all mentioned - like needing a kidney transplant or having to wear a colostomy bag (sorry - would rather die)

What options are there for those of us that have no caregivers and not enough money to pay for one? As negative as I sound about transplants I would be happy to have only 5 yrs life for a day without being SOB and having constant panic attacks.

Oh and FYI - for those of you with high WBC take a look at your Eosinophil values and see if they are too high (as mine were) - It took a year but my insurance did decide to pay for injections to lower (actually eliminate) my Eosinophil's in my blood - this is linked to Eosinophilic Asthma and so far, it seems to have helped - I'm not having the severe panic or as bad of SOB as I was. My doctor felt that what kept landing me in the hospital were severe asthma attacks rather than COPD exacerbations
Sokcap48 Posted - Apr 04 2019 : 06:45:42 AM
Andy- glad you got your coronary problems fixed. Thoughts and prays for a full recovery. Are you in a rehab program? If not talk to your heart doctor about getting into one. The better shape you are going into your lung surgery the better you will be coming out. At least you live close to Phoenix, that is a good thing for future trips to clinic. Are you planning on living in Phoenix temporarily? You will need to for the first 3 months at least. If the doc allows, start to do squats or
“ sit to stands “ that will strengthen your legs muscles so that will help you get out of bed after surgery. You will NOT be able to use your arms to push,pull or lift for quite some time. I am more than will to help you in any way I can. You hang in there and we can go on a hike together after your Tx’d .
Regards Paul
andy55 Posted - Mar 30 2019 : 6:32:30 PM
Thanks Sokap48. The update is that 2 1/2 weeks ago, I had an operation to place three stents in my coronary arteries. The recovery was rough. In the recovery room, my pulse dropped below 40 and my BP was at 70/35 for awhile. The bruising on my right arm was scairy and i just now going away. This past wednesday night I had to go to the local ER due to symptoms which I believe were associated with the stents.
Anyhow, the TX team feels that I am 'close' but not eligible yet to go the list. They plan to re-evaluate in 6 months. My wife and I have attended one TX support group meeting. We would have gone again this past thursday, but aI was in ICU at the time.
I love to read your exploits and they are a source of inspiration to me. I woul love to feel good again and be able to hike, fish, and just go where I want without having to drag my O2 or be short of breath. COPD really has restricted my life for the past 20 years, and the past few have been the worst!
I'm sorry to hear about to loss of your son. I'm sure it is especially hard to lose your child. Thanks again for your support!
Sokcap48 Posted - Mar 07 2019 : 1:12:20 PM
Hi everyone! I have been off the grid for the last 3 months. Lora glad you are doing well sorry to hear of your loss. I lost my son last Aug so I know your pain.
Really glad you are doing well—see I told you so :-) :-).

Andy55- I am so happy that you are going thru the evaluation. Hope your heart problems don’t disqualify you. Hang in there and keep working out! The better shape you are going in the better shape you will be coming out. Do sit to stands/squats, they will help you to be able to get out of bed, because you can’t use Your arms to push, pull or lift for a long while. St. Joes is an awesome transplant center but being close to your center is important! You are hooked to them for the rest of your life ( hope that is a long while ) and yes Lora is right on . Pred is the least of your worries. I am 2 1/2 years out and including vitamins and supplements I still take 30 some pills a day. SMALL PRICE TO PAY FOR WHAT I I GAINED!!!!!! If I can help please reach out. We are all family .
I should be online for the next several months.
Regards Paul
Lora-WV Posted - Feb 20 2019 : 06:34:11 AM
Thank you Micah35, I appreciate your good wishes and if there is something I can do to help, give me a shout!
micah35 Posted - Feb 19 2019 : 10:29:18 PM
Lora, I am so sorry to hear about your tremendous loss, but glad that you were able to be there for your husband when he needed you. Your strength and positive attitude are truly inspiring. Thank you for sharing it and I wish you the very best.
Lora-WV Posted - Feb 19 2019 : 06:36:11 AM
He took care of me and after transplant I was able to take care of him, and what an honor it was.
andy55 Posted - Feb 18 2019 : 8:31:10 PM
quote:
Originally posted by Lora-WV

Andy you will be taking a lot more drugs than just the prednisone, I started out taking around 15 am and almost that many pm but now it's
downto 6 or 7 am and 5 pm. Not a bad trade off to be able to function again. The thing that I am most grateful for was being able to take
care of my terminally ill husband after transplant, he passed Dec. 7. There was no way I could have before transplant. Please keep me
posted Andy and don't lose faith, if it's meant to be it'll be!


Thanks, Lora. Sorry for the loss of your husband, though.
It must have been very difficult, with both of you ill at the same time.
andy55 Posted - Feb 18 2019 : 8:28:45 PM
quote:
Originally posted by Dave-OH

Blowing more than 100% predicted will get you a score over 100%.



Wow! That is encouraging!
Thanks, Dave.
Lora-WV Posted - Feb 18 2019 : 06:16:45 AM
Andy you will be taking a lot more drugs than just the prednisone, I started out taking around 15 am and almost that many pm but now it's
downto 6 or 7 am and 5 pm. Not a bad trade off to be able to function again. The thing that I am most grateful for was being able to take
care of my terminally ill husband after transplant, he passed Dec. 7. There was no way I could have before transplant. Please keep me
posted Andy and don't lose faith, if it's meant to be it'll be!
Dave-OH Posted - Feb 17 2019 : 8:36:47 PM
Blowing more than 100% predicted will get you a score over 100%.
andy55 Posted - Feb 17 2019 : 2:07:31 PM
Thanks, Lora-WV. I am mostly through the evaluation stage. I had a heart catheterization last Monday. They found blockages in two of the three arteries. Decision now will be to fix soon, or do it during lung transplant. I am a bit disappointed that if I get the transplant, I will still need to take prednosone. Even more than I am taking now. My recent FEV1 was 21%. I'm not sure how it is possible to get 136 for an FEV1 score, but I'm glad that you are doing much better. I am unable to email anyone here yet due to forum rules. Not enough posts. So if anyone wants to email me, I would welcome that.
Lora-WV Posted - Jan 23 2019 : 05:56:28 AM
Good luck Andy! I'm in Pittsburgh and had my LFT yesterday, before transplant the lowest my FEV1 was 19, yesterday it was 136! I feel so
blessed! It'll soon be 6 months for me. I'm getting my broncoscopy today. I just keep getting better and better. I'm so very thankful.
Keep us posted Andy.
Paul do you have my email, would love to chat. Had a lot going on earlier and now have more time.
andy55 Posted - Jan 22 2019 : 6:51:14 PM
Hey, Folks. I am currently being evaluated for double lung transplant at Banner University Hospital in Tucson. Once they agreed to do the evaluation, things really started moving along. Tomorrow my wife and I will spend 4 hours there, talking with the insurance counselor, social worker, and me getting some blood tests. I was treated for prostate cancer in 2017; but the Banner transplant team has reviewed my cancer treatment and status, and have decided to proceed. I am both excited and a bit intimidated.
andy55 Posted - Dec 13 2018 : 4:53:42 PM
Hey, folks. I am mostly a lurker on this forum but I wish to chime in because I think I will soon be a candidate for transplantation.
I am almost 70 years old. Was diagnosed with severe COPD in 2000 and am now very severe with FEV1 0f 26% (on a good day). I have started using O2 during the day, started sleeping with it 2 years ago.
I live in Tucson, Az. I have been seen by two clinics: St. Joe's in Phoenix (also called Dignity health) and Banner Medical center, affiliated with the University of Arizona in Tucson. I was evaluated at St. Joe's about 1 1/2 years ago and they felt that I wan't ready yet for a transplant. I will be evaluated next week by Banner.
I have read much of this thread and have followed Paul's comments about St. Joe's. I assume that I would have to stay in Phoenix for 3 months or so if treated there. The convenience of being treated in my home town (by Banner Med. Center) is attractive, but I don't know how 'good' they are. In other words, their success rate as compared to St. Joe's Clinic. My pulmo told me they do 40 transplants per year.
So I am in a quandary right now as to which clinic I should pursue.
Any thoughts you can provide would be appreciated.
Sokcap48 Posted - Oct 25 2018 : 2:43:27 PM
Lora-congrats back to you! Hey if I can help, answer questions or give you a pat on the back just reach out. I think you have my email? You are right, hey I wanted to die for the first 3 months-no appitite,weak,tired,grumpy you name it, I had it. But slowly month 4 it turned around and I haven’t looked back. Keep doing your rehab and do it at home on your own everyday!!!!!! It will pay off. Let me know the details. I am here for you anytime you want. I have mentored a lady for about a year + now and we have become good friends, my wife Patty and I went up to Oregon and met her this past month on one of our road trips. It is fun to compare notes. Take care and keep up the good work. I am so happy for you!!!! Brings a tear to my eye when I think about how blessed we both are.
Regards
Paul
Lora-WV Posted - Oct 22 2018 : 6:39:23 PM
Congrats Paul! I will soon be having my 3 month. I M doing rehab no though it is exhausting I can tell a difference. Everytime I
walk, even just a short distance I am still amazed that I'm not short of breath. Great feeling. I agree with Paul, if you
are thinking of a transplant, it's not a rosy path but it's sure worth it!
Sokcap48 Posted - Oct 20 2018 : 7:43:11 PM
Hi everyone just back from a 6 week road trip. Thought I would let everyone know I celebrated my 2 year Lungiversary hiking and camping in the Bitteroot Mountains in Idaho. If I may help anyone with questions or mentor you thru evaluation and lung Transplnt please reach out. Yes it is a real option for a lot of people. Think about it.
TX’d 9-30-16
Sokcap48 Posted - Aug 23 2018 : 8:41:03 PM
Yea!!! Hard at first but oh so worth every struggle! Write me if I can help! Rehab! Rehab!! Rehab!! Oh so important. You are correct Oh so Blessd!

You go girl !

It gets better day by day !
micah35 Posted - Aug 15 2018 : 11:56:32 PM
Wow, that was fast. Wishing you a quick recovery, Lora, and I can't wait to hear about your new lease on life.
PennyPA Posted - Aug 15 2018 : 9:24:08 PM
Congratulations, Lora!! Stay strong; it will get better!
Lora-WV Posted - Aug 15 2018 : 9:01:55 PM
Placed on transplant list July 26, transplanted July 31 and discharged today. Harder than I ever imagined .....weepy, sore, overwhelmed,
humbled and feeling so blest.
Sokcap48 Posted - Jul 17 2018 : 2:55:49 PM
Penny the packing is kind of trial and error till you get your pack to feel centered. I bought “OP”bags heavy duty odor proof ( for some more adventures ) filled these and put down the middle of each pack. Then stuffed the sides with odds and ends like camp sandals etc. I carried right at 30 lbs my max weight would be about 38. The 30 is WAY to much if I ever do that many miles again I will become a minimalist and carry between 15-20 max. We had way to much “stuff” it is kind of a shot in the dark because you only have to go by what other people write about. Even had to much food. They say you eat a ton but we didn’t eat much more than normal except for inbetween meal snacks and candy bars. No not Hawaii. Maybe the Tetons—but in a lounge chair starring at the lake :-).
PennyPA Posted - Jul 16 2018 : 10:11:13 AM
Paul, how much of a load were you guys carrying? And how'd you learn to pack it so it would be balanced? The scenery must have been outstanding! Some of the videos didn't come through (we have "iffy" internet here) but what we saw was just fantastic!
PennyPA Posted - Jul 16 2018 : 09:12:11 AM
Paul, after your "completion" post, I went back and read all the postings in this thread. You've come a long way, Paul, since you first started out on this journey. And you're right that you didn't see me pass you. There's no way I would have passed you or kept up with you...or even BEEN on those trails. That one trail looked awfully narrow and very scary. So what your next objective...The Iron Man competition in Hawaii?
Sokcap48 Posted - Jul 16 2018 : 08:43:30 AM
Penny—MMMMMM! I don’t recall you passing me on any of those trails down there, “ Miss Fitness “. :) :) And at 70 I deserved an extra rest!
Yes thanks ! I am proud. It did take a lot of extra work and old bodies take a while to recuperate but so worth every sore muscle. With out my transplant it would have been impossible and you are correct, I never margined I would be hiking like that let alone the Grand Canyon. I hope people see what is possible and look into a Transplant or like you an LVRS. I my opinion it is worth the battle. I am so blessed.
PennyPA Posted - Jul 15 2018 : 2:10:02 PM
Aha! So the lungs were fit but you weren't, huh? I bet you never thought (pre-transplant) that you'd be doing that hike in a million years. You have every right to be walking around with a perpetual smile on your face and a little internal voice telling you that you're great. Brave and great. What are chances of you emailing me a couple of pics?
micah35 Posted - Jul 11 2018 : 3:03:38 PM
Congratulations, Paul! What an amazing feat for anyone and great job giving those new lungs a workout.
Lora-WV Posted - Jul 10 2018 : 09:58:41 AM
Oh PAul, how wonderful for you and what an inspiration you are. I will be contacting UPMC when I return from visiting family in
Wyoming to be placed. I was approved earlier but am ready to take the plunge because living this way is so draining. Always
great to read how well you are and continue to be. Congrats!
Sokcap48 Posted - Jul 07 2018 : 4:13:12 PM
Hi All——— I/we DID IT!!!! 23.9 miles of some of the toughest trails in America ! It took another half day more than I had planned because I got tired and decided it it would be safest and smartest to lay over half a night and hike out early 1 AM the next morning. We did it, we did it, we did it! So exhausting so beautiful! It is one thing to “see the Grand Canyon” but quite another to “ Be IN the Grand Canyon” like entering another world. So hard to accomplish but oh so worth the effort. My wonderful wife posted OUR accomplishment on one of the G C Hiker sites explaining that it was to celebrate my 21 month post doulble lung transplant and people went WILD! I also hiked with signs saying I had a transplant and to be a organ donor. Tons of comments and it was great advertising for the cause. With out my transplant NONE of this would be remotely possible.

NOW for ALL of you folks stage 3-4 get the research done. Find the best and closest center near you and Fight for an evaluation if you get turned down one place go to the next closest place for a Transplant and “ if that ain’t your cup of tea” get with Miss Penny and she will help you with what you have to do to get a LVRS. Folks this is worth fighting for! They are transplanting into the early 70’s. I am so happy I took first scary step. I just took on one of the toughtest trails around and won. This can be YOU also. Yes it is scary, yes it takes work but going thru what you are going thru now is scary. I have developed a saying “ I would rather die living than live dying” now I know all won’t and can’t qualify for either but for those of you who can please Pursue this road with vigor !

If can can answer any questions, help anyone get this started. Please please let me know. If I don’t answer right away keep trying and it is alright with me if Dave contacts me privately to let me know someone is in need of help. Once that is done I am more than willing to help thru the forum or give you my email privately
Warm Regards
Paul Little


micah35 Posted - Jun 28 2018 : 8:25:28 PM
That's fantastic, Paul! Enjoy every moment and fill us in when you get back.
Sokcap48 Posted - Jun 26 2018 : 5:19:31 PM
Hi everyone! Thought I would check in with all my old COPD friends and tell you I am still doing fine, no great! My double lung transplantation has been fabulous.
Thought I would tell you all about my up coming adventure. My wonderful wife and I were lucky enough to draw out the very sought after permit to hike the Grand Canyon Rim to Rim. So you can see it has really been a transformation for me. We start down the canyon early Friday morning and will spend 4 days and three nights in the Grand Canyon we will drop down the south rim to Bright Angel Campgroud some 4,380 feet over 2 days and the climb up the north rim 5,761 feet for a total elevation change of 10,141 feet. Pretty awesome for someone who 2 years ago was on a concentrator and a 50’ nose hose. I am so blessed !

If I can help anyone interested in transplantion please let me know!!

I will let you all know how it all turned out—if I can crawl out#128515;#128515;—we know it will be HARD AND HOT but we can do this.

Best wishes to you all.
Paul
Dave-OH Posted - May 01 2018 : 8:14:13 PM

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