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Post by Blossom/Jackie W. on Jul 27, 2011 15:17:52 GMT -5
I would think that it takes a LOT to get to the point of being put on the list; heck just with what I know of what Antoinette's gone through is something else......
And; I know we can follow your journeys that you share with us and we're grateful. For some of us who'll never get there; we live "through you" and we cheer you on! Heck; come to think of it..... we all cheer you on!
I have some questions if you don't mind that is aimed at the "before" Before you got/get listed and I think others are curious as well.
If I may.....
Who brought up the subject of testing for it? Was it you, your GP, your specialist?
How did it come up? Was it based on your numbers or your exacerbation rate or both or more?
How did you "feel" when the subject was broached? Were you shocked or surprised when it was first mentioned? Perhaps you were hoping for it? And; how did your family feel about it?
Is there a reason why (or maybe it was) LVRS surgery wasn't looked at first as an option?
Did you decide "yes" right away to agree for the testing or did you have to think about it?
When you began your process, what kind of shape were you in?
Bobbi; I know you said to go ahead and ask, and I hope the others who have gone through, or about to go through, will be as gracious. We can read all the "technical" and testing etc but..... how did it originally begin? I guess that's what I'm asking.
Are/were you afraid?
Hopefully you guys will be kind enough to share so that others, if/when they get there, will know and feel that what they may experience or think, isn't necessarily "unique" or "seperate from" the norm.
We learn by sharing.
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Post by bobbioh on Jul 27, 2011 16:41:43 GMT -5
My GP mentioned After a X Ray That I had COPD I had no idea what it was, And just blew it off. That was 2003, Then he left for bigger and better places.I quit Smoking in 2005 On October 23rd. I went to a new Plumo on October 23 rd 2006 A year to the day I quit smoking. I was in bad shape but still working. As a hotel supervisor in housekeeping. She told me on that day I was very severe and needed a double lung transplant and wanted me to start ASAP. I ran out of there sobbing. Well she was not around long I did my first stint in Plumo Rehab and was doing well, With med changes etc. Then I decided to make the trip to my original Plumo guy Dr Nashawati, I love this Dr he is amazing And knows just how to handle me. He has been my Dr since I was 28. Well I was doing quiet well, But he still talked to me about TX and again I got very upset. (thats not me I'm usually strong and deal with things well.) So we just put it on the back burner. Well then in October of 2009 most of you know I was very close to death, and was very sick in March of that year also and had a very resistive lung infection. I have not been hospitalized since October 2010 for a lung related situation. I had my teeth out that has helped allot. Had a breast biopsy, and a group of pulps the size of a golf ball removed from my breast. So now here I am 49 and almost 2 yrs later from near death and Ive never come back to where I was. And have gained allot of weight. And the fear of getting worse and not being able to do things I want, Well that doesn't sit well with me.What has given me the courage well Wendy, And Colleen, For just a couple reasons.And the show that was on last year 3 rivers it was all about different transplants and it comforted me and gave me hope sounds silly but hey you asked  . I cant get a LVRS my Fv1 is too low my transplant Dr said at my Fv1 the outcome would not be good. My husband is scared to death but he keeps it to himself. My oldest daughters take it in stride. And my baby cheers me on she wants her buddy back. who can go all places with her. Am I afraid heck yes every time the Transplant Team calls I get all flustered. But I am hopefull, And I want it I feel like it will be a rebirth. I want my life back. I want to be me again. Thats my story and I'm sticking to it Bobbi |
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Post by Colleen-Pa on Jul 27, 2011 16:56:19 GMT -5
Jackie, Great Q's and I'd be glad to help any way I can!!!!
My local pulmo suggested it first and I was SHOCKED that I was that bad, boy I tell you it scared the daylights outta me!!!!! Took me a year to get up the courage to make the call and I did go for LVRS first, and that was my decision. Dr. Cooper had just started at U of Pennsylvania and I had the chance to go to him and frankly he is a pioneer and I felt incredibly lucky to have had him as a DR., that really was what my deciding factor was, he is the best as far as I am concerned. I didn't qualify for LVRS, lungs were too far gone to risk it so I continued on for testing for Tx, best thing I have ever done besides quitting. At the time my fev1 was about 20% but dropped rapidly for no know reason over the next three years. I waited 3.5 years for TX as the sickest go first and you have to be pretty sick but healthy enough to survive the operation. Mine was numbers, not exacerbation as I stayed out of the hospital and never had pneumonia, knock wood. You have to be able to walk at least 600 ft on the six min walk or they take you off till you can, some times they waive this for individuals but not sure of the criteria. Had my family support right from the beginning and I was pretty scared at first but as I got sicker I just wanted it done so I could breathe. What scared me the most was waking up on the vent for fear that I would feel like I was suffocating, that didn't happen but boy I tell you it hurt, even w/ all the pain meds it was awful. Thank god I was off is less than 24hrs. and I slept through most of it...thank you god!!!! I would do it all over again in a NY minute tho....I feel great most of the time, having a few tummy issues but not so bad I can't handle it. So glad I went through it all!
I have been blessed a million times over, thank god for organ donors!!!!! Best of luck for those who go this route and if I can be of any help at all, please just ask away!!!!!
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Post by Blossom/Jackie W. on Jul 30, 2011 9:52:31 GMT -5
Thanks Bobbi and Colleen for being so open and honest. It's very kind to share the good and bad with us and I'm hoping that a few others will contribute on this thread. I.E. Antoinette, Shelley...... anyone going through it or having gone through it. And Wendy; your lungs I guess were "salvagable" enough (poor choice of words but I think you know what I mean) to do a LVRS? Did they say that chances are in due course you'd probably qualify for a Tx? One thing I know about you is that you're no coach potato! Antoinette....... how long from the very first of the start of testing did it take before you got listed? How about you Colleen? Bobbi; at what point along the road will they make the decision to yay or nay? I would think that one of the hardest aspects for anyone who's gone through, going through, or will go through.... is first, as you both have mentioned, the acceptance of.... OMG; this is where I am right now?   And I would think that the second hardest would be, once you have accepted and started down the road, is the fear of maybe NOT being accepted. I would think that fear would stay with you constantly. Bobbi; do you find that? What about you Collen and Antoinette....... did that play in the equation? Colleen; perhaps you could tell everyone when it was you had your Tx done and where/what you were doing when you "got the call". How did you react or feel? I hope you don't mind my asking these things and if they make you uncomfortable please, just say the word. And again, thank you. |
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Post by Colleen-Pa on Jul 30, 2011 11:21:04 GMT -5
I don't mind the Q'S at all, that's how we learn from each other. I really didn't worry much about not being accepted, figured I'd cross that bridge when & if I got there. I try not to worry about things I have no control over, it just causes more anxiety and frankly, its just not worth it!!! As for what I was doing when I got the call, I was sleeping.. ....it was 1:07 am on 4/7/10. I woke up pretty darn quick tho.....I was excited, couldn't believe it had finally happened. I was so incredible ready for it, my fev1 was floating around 12% and really was not able to do much of anything anymore so there was absolutely no hesitation, it all just felt so right. Dan got the kids up, Amy came with us but my son had a big test as school and couldn't go...the hardest part was leaving home with him crying. He was there by that afternoon tho, when I woke up. I vividly remember our pastor at the foot of my bed giving her the thumbs up! What an awesome thing I thought and knew just how incredibly blessed I was. Life is worth fighting for, I can't say it enough, I'd do it all over again in a NY sec!!! I don't really talk about this part much but my donor was high risk, he/she (I think he cause they said he a few times but wouldn't clarify) was a prisoner. They test high risk donors more exclusively so I figured who am I to discriminate??? and or play god, this could be my only chance also. The lungs were great, my fev1 now is over 100% and I am so glad I didn't turn them down, cause you can say no at anytime. They have to inform you of this risk also so I had a chat w/the surgeon before I even left the house. They also did the heart & pancreas that same night at U of Penn. 3 Lives saved and I am guessing a few more with the liver & kidneys. Maybe someone else can see now because of the cornea's.....donation in a wonderful thing!!!!! Ain't life grand!!!!!! |
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Post by bobbioh on Jul 30, 2011 12:03:46 GMT -5
i guess i feel like colleen if its ment to be it will be. Im not going to worry about it either way its out of my hands. Bobbi Thanks Colleen
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Post by aero63 on Jul 30, 2011 17:54:02 GMT -5
When I first went to Penn, I had one dr. but he said I needed to see someone else. It was this second Pulmo. that explained I was bad enough to have a tx. and that it was something I might want to think about. It isn't hospital stays, because I refuse to stay as long as I am able to refuse. So, I guess it is the combo of numbers and tests of ct scans etc.
I thought maybe an LVR or one of the other studies, but I was not elibigle for those. I went home that nite or maybe even the ride home and knew I had made up my mind without research that this is what I would do. Sometimes with me, the less I know the better off I am. I need to know what I have to do, but alot of the details I try to dispense with in this case. Very strange since I am a detail oriented person. I told my daughter that this is what I was going to do. I don't know if it will ever sink in with her until it is done. My sister and brother are against it and think I should just "go on the machine" through out the day. The rest of my family is not involved so I haven't talked to them...although they know now.
I like to think that I am in better shape than alot and not as good as others. I exercise alot to be conditioned. The constant looming psychological effects of the disease are the biggest factor for me and it definitely toys with the emotions in a big way.
I am more afraid of the "after" transplant than the before. I do not want to feel pain.
Well, I hope I answered the questions. I know I wrote alot of stuff in "My Journey" too.
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Post by Colleen-Pa on Jul 30, 2011 19:02:48 GMT -5
Aero, they manage the pain very well, in fact other than the pain from the tube, I really don't remember being in that much. I was on a morphine pump for a few days then off to oral and it was fine, had me up walking on day 2 I believe, tubes and all and it felt so good!!! Please don't stress about the pain, its not worth it, you'll see once your able to breath that it's easily manageable, everything is when you can breathe!!!!!!
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Post by wendyco on Jul 30, 2011 20:13:00 GMT -5
As Blossom said, I had the LVRS not a transplant......but it was my pulmo doctor that I had (and still have) that suggested I test for Transplant cause she couldn't do much more for me....I ponderred on that for over a year.....As my breathing kept getting worse and worse I finally said, okay lets look into a LVRS or a trial of some sort.....she sent me to National Jewish for all the testing.....all along I really didnt think I would qualify due to the fact my emphysema is throughout my lungs.......when I was told I did and we scheduled the surgery, I was as giddy as a little girl!!!! would do it again even with some compications it was well worth it.
my thorastic surgeon said a tranplant should be looked into in about 5 years....
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Post by susanny on Jul 31, 2011 0:24:00 GMT -5
I just want to say thank you to Blossom for posing the questions. They are q's I've wondered about myself as this is where I am headed as well, but not for a while, I guess. And then huge thank you's to all those who are responding and sharing their inner most feelings and experiences. You are all angels and greatly appreciated for being such.
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Post by aero63 on Jul 31, 2011 20:01:24 GMT -5
Colleen, thanks for letting me know. I figured they were up on it, but that is a real fear. Hey maybe too many horror movies, . Wendy, I am glad you are doing great on your LVR. |
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Post by nikki1966 on Aug 9, 2011 0:42:23 GMT -5
Hi everyone. My name is Nikki. I am 44 years old and have Alpha 1 antitrypsin Deficiency emphysema. I usually hang around here and just read the posts. I have decided on this one to speak up. My latest FEV1 was 23%, and that is when my pulmonologist recommended sending me for an assessment to the transplant clinic. From what she told me there are very few people who will benefit from LVRS. She said that most people have widespread damage through the lungs and the LVRS only really helps people who have most of the damage in just one area. I don't know what they will tell me when I go for my appointment on October 5th, but I am definately planning on speaking to them about all possible options. If LVRS can give extra time before a transplant is needed that would be the best way to go...in my opinion. Transplant is a scary thought, but one I am willing to entertain, when the time is right for it. Thanks to everyone for sharing here, it has made my journey easier.
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Post by Blossom/Jackie W. on Aug 9, 2011 6:31:34 GMT -5
Ladies I want to thank you for answering these questions so honestly and sincerely. I know that these are things that people think about or wonder and you've been gracious and kind in your responses.
Nikki my dear...... I/we wish you nothing but the best! We'll be rooting for you! I've taken the liberty of adding your appt to the calendar here (we don't want to forget it). I hope you don't mind. And; if you would please, would you keep us abreast as to how things go? TY
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Post by nikki1966 on Aug 9, 2011 13:26:40 GMT -5
Thank you Jackie, and yes I will keep you updated.  |
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Post by aero63 on Aug 10, 2011 9:15:40 GMT -5
Good luck Nikki
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Post by susanny on Aug 10, 2011 9:49:42 GMT -5
I like the way you are thinking, Nikki, about the option of the LVRS before the ultimate transplant. It gives you more time and seems like the logical way to go, if it's possible for you, that is. I hope it is. Good luck to you. Oct. will be here before we know it.
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Post by mary57 on Aug 10, 2011 16:40:09 GMT -5
Jackie thank you for asking these questions and a HUGE THANK YOU to Colleen, Wendy, Bobbi, Aero for your willingness to share these moments with us. As Jackie and Sue said these are things we think about but it's buried deep, don't want to jinks where we are now. Your talking has given all of us so much, THANK YOU ALL
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Post by nikki1966 on Aug 12, 2011 14:32:42 GMT -5
Thank you to everyone for the support and kindness. I wanted to let everyone know I have been bumped and my appointment date is now the 26th of Oct. with Dr. Jennifer Wilson, one of the transplant surgeons. I was originally booked with Dr. Levy who is the medical director. Hoping and praying for the best.  |
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Post by susanny on Aug 12, 2011 23:07:03 GMT -5
What part of the world do you live in, Nikki? It would be helpful if you were to put it in your profile, too. Every so often, the matter of where we live makes a difference in how questions/posts are answered. Besides, it would be interesting to know where you are having your transplant done, what country, city, hospital, etc... The end of Oct seems like such a long time aways from now, doesn't it?
How long have you had symptoms and when where you diagnosed with Alpha? Did it take a long time to get the diagnosis?
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Post by nikki1966 on Aug 13, 2011 13:14:21 GMT -5
Hi...I live in British Columbia Canada, and the closest transplant center is in Vancouver. I currently live about 500 miles away from there. My lung issues started about 15 years ago, when I was diagnosed with asthma. I was never given a PFT, they diagnosed me by symptoms alone. Years went on, and even though my symptoms were worsening, they kept treating asthma alone. Finally, I found another doctor (not an easy thing here) and it was good timing, as I started to cough blood. This was about 5 years ago. So a battery of tests followed. The CT showed advanced emphysema, so the test for Alpha 1 was done due to my age.(I am 44 now) It came back showing Alpha 1. At the time of diagnosis I still had FEV1 of around 60% It is now down to 23%.A long process, and definately it made a difference when I found a doctor who didn't laugh at my symptoms and tell me that it was all in my head. I feel quite blessed to have found my new doc, and for the wonderful care I have recieved from both him, and my pulmonologist. She is amazing as well. Thanks for asking, and I will add the info to my profile ) |
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Post by susanny on Aug 13, 2011 21:42:15 GMT -5
Thanks for sharing, Nikki. You know, I am aware that Alpha 1 is treated with different meds than just regular everyday COPD, but don't know what is different. Would you also share what meds you use? Thanks. I think a lot of us would be interested in knowing.
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Post by nikki1966 on Aug 13, 2011 22:12:34 GMT -5
Actually, I believe they are treated in the same way with the same meds except that some people with Alpha 1 qualify for Augmentation therapy with Prolastin. My Alpha levels were not low enough to qualify. So my meds are as follows,
Advair 500
Atrovent
Flovent
Ventolin
Singulair
and antibiotics and prednisone as needed
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Post by shelley on Aug 15, 2011 23:31:11 GMT -5
I have been holding off writing here because I'm sitting on the fence on this subject and actually, more 'con' than 'pro'. I was diagnosed at 36 with an FEV1 of less than 50%; I believe it was 48%. That was 21 years ago. In many ways I've been around the mill with this disease and I've had the good fortune to have mostly good care and blessed to meet many people that have been guides as I've gone through the phases. I have stayed in really good physical shape and it was only 4 years ago that I started using oxygen and up to that moment was still hiking, working out every day, roller blading, swimming 25 laps a day but.....I found out the hard way that although I was doing these things I was desaturating and so came the oxygen. In many ways, I was ready. Many had shared info with me, so I knew exactly what I wanted and by the time my provider brought in the resevoir and portable, my husband had already figured out how to put the 02 on my back and off we went...no ifs, ands, or buts! Even today, although at the moment I'm plagued with a back injury, I still hike (flat terrain now), canoe, swim and for the most part lead a fairly active life. Yes, it is slowing down but as one door closes, I open another. At the same time I went on oxygen, it was suggested by my respirologist that it was time for a transplant workup. Well, I think I went into shock....I had never even thought seriously about it as I somehow thought that all this working out etc was going to save me from the progression and even when I saw that the disease was progressing, I just worked harder to stay fit. That has served me quite well but there is a reality to this disease that is inescapable. BTW, I am not an alpha. I was simply diagnosed initially as "early onset emphysema" - whatever that was supposed to mean. All I knew then was I had three young children to raise and it wasn't cancer so therefore all was good. Yeah - right! Anyway, I digress! LVRS was impossible as my lungs were scared throughout. I researched transplant inside out and frankly, did not like what I was finding out but as advised about one year ago had the full assessment done. Currently my FEV1 is 24% (0.7L - which is the more important number) and I use 6 lpm of 02 for exercise, 2.5 lpm for sleep and during the day sitting will run at 2 lpm when I feel like it. My oxygen saturation on room air at rest goes from 90-93%. However, I'm fairly attached to my brain and heart, so I tend to put my 02 on now just to keep them in decent order. The assessment showed that I am a candidate, double would be best but as I am still very active and my quality of life if fairly good, it is too early. It's not about numbers, for COPD patients, unlike CFers or PFers, transplant is a much higher gamble and COPD is really quite unpredictable. At this stage I could be good for 10 years or so, but if I got a cold, I could be gone tomorrow! So, it's all about quality of life and how we define that (at least here in Toronto). The other thing that was found during my assessment was, that like most women who have had children, my human antibody % is quite high, actually 86%. That is because when a women is pregnant they develop antibodies to the father's dna or something like that. Anyway, what that also means is that in this whole world only 14% would be an excellent match. However, transplants are done on women everyday but I did find out that women are less likely to survive for the long haul due to several reasons but that was one of them. Transplant scares the S**t out of me. I'm scared of the pain of the surgery; the recuperation and even the life after. I know quite a few that have had transplants both COPDers and CFers and frankly, life afterwards has it's own hell. As they say, you trade one disease for another. Most I know develop diabetes within the first year, kidney damage or failure by year three requiring transplant frequently and all too many never make it past 3 years, never mind 5! However, that's the dark side as many do make it for long periods of time. I have a personal friend who had a single lungs done 18 years ago and is only now in chronic rejection and waiting for another lung. On the other hand, maybe all these things are easier to deal with if you can breathe. I sure know that the pain I've had with my back lately would have been easier to deal with if I could breathe. ! I have spoken to my doctor about the "end" and how it may manifest as I want to know what I'm up against no matter which way I go. However, I guess one of the things that keeps coming home to me is that I know this 'enemy' and I do not know the post transplant 'enemy.' I like knowing my enemy!! No matter which way I turn on this, the odds are not great but...at least I'm still on this side of the green and enjoying it. If I go into surgery, I know I'm going to spend the first year going through the hell of medication blues and other recuperating factors and I know I'll never be able to do some of the things that currently give me great joy. The risk of infection would be too high. Of course, this is if in fact I make it off the table and through the initial recuperation which I know from enough people is bloody painful and difficult. There are so many things to consider no matter which decision one makes but for the moment I'm going with the natural flow of things. That could change and if so, the work up has been done but I have always looked to nature and the wheel of life for balance and I am still most comfortable with that. I know it won't be easy and my family is at my side no matter which way I go in end result but for now, transplant just presents far too many risks and challenges afterwards. It's a fight for survival no matter which you choose but I know the path I'm currently on. I also know that this disease is so unpredictable that "end stage" doesn't mean "end of days"; it only means that the medical profession has run out of tools except that which can be used if necessary to keep you comfortable but life could go on for an unknown duration - no one knows - not with COPD! Additionally, I figure that if research finds any answers, it's going to be for 'native' lungs not transplant (with the exception of the artificial lungs being played with); so again, I'm back to reinforcing my decision. Who knows what the future may bring or what decisions will be made but for the here and now, transplant doesn't offer me enough to be ready to potentially lay my life down on the table and when you go into the surgical suite, that's what you are doing and just before, you are saying goodbye to those you love - just in case and I'm not ready for that. We each make our own decisions and define our lives differently. I may be getting weaker but I'm also getting older than they ever thought I would - so, at this moment, with my decision, I am winning. I apologize if I'm raining on anyone's parade but I'm telling it like it is in my little world. I have always said that this decision is bigger than I am and that no one should ever have to make a decision like this; yet here we are! When the time comes, don't shut the door, ask questions, be informed and also look into yourself - then decide....but always remember, a decision can always be changed until the deed is done! |
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Post by sandy07 on Aug 16, 2011 8:27:06 GMT -5
Thank you Shelley for saying it like it is "in your little world"....for putting your thoughts and feelings right out there for us. It makes us think about our own "little world".
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Post by Blossom/Jackie W. on Aug 16, 2011 8:44:49 GMT -5
Shelley; thank you for your candor. You're a very bright lady and you have a good, grasp and understanding of your situation and your body. You're "in tune" with yourself in other words.
I have a question or two.......
Does this mean you've chosen "against" being on the list (at this time) even though you've gone through all the testing? Is that what I'm reading?
And; if so, it appears you've not "closed the door" entirely in which case how much "retesting" would you have to do if say you changed your mind in 6 months or a year?
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Post by susanny on Aug 16, 2011 9:26:03 GMT -5
Thank you for your honesty, Shelley. You express a lot of what I am feeling. I have a question: if a person is able to turn down a transplant when called, will they then call again if another lung becomes available in the future?
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Post by bobbioh on Aug 16, 2011 9:29:13 GMT -5
very well said shelly. Bobbi
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Post by goof on Aug 16, 2011 10:26:11 GMT -5
Very clear Shelly, thank you.
I've never gave transplant much thought, but your post changed that.
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Post by shelley on Aug 17, 2011 17:25:06 GMT -5
Will try and answer a couple of questions. Jackie, getting on the list, for me, would be as simple as saying I've had it and life sucks at my next meeting. As I said, it's all about how we define our quality of life. I know of some that have had transplants when their FEV1 was well about 30% but to them, having to use oxygen was a death sentence. To me, it was just another challenge and I made the concious choice to try and find ways to do most things with oxygen that I did before oxygen. A lot of that is keeping fit. I can never stress enough how important that is! Use it or....truly lose it. If I decided that it was time, the only test left in the final angiogram. Once a person is on the list, if they do get 'the call', they can say they are not ready and turn it down but I would imagine that if you did that too many times, you would be questioned. Let's face it, transplant organs are invaluable and never to be taken lightly.
The door is never closed, with the exception of any co-morbidity that may evolve. It is also important to stay strong enough to be accepted. Again....not that I'm harping...exercise, exercise, exercise. I still meet with my transplant doctor every 4-5 months and the same with my respirologist.
We all have to look at our lives and how well we live them and then make a decision. Like everyone else with this disease, I have my dark moments and in the winter feel like I'm running in fear of the 'bug bunnies' but life is still good and my garden of open doors continues to evolve. I'm not special or different, but I do have a very supportive family and a few good friends and a husband that is always ready to find a way to make life enjoyable. What else can I ask for? Even in the time of 'passing' what more can we ask for other than love and I am surrounded by it. So....for now, I'll let nature take it's course ( as I fight and kick of course).
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Post by Blossom/Jackie W. on Aug 18, 2011 7:36:15 GMT -5
Good for you Shelley..... like I said; you're "in tune" with yourself and that's the most important thing I think.
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. I cant get a LVRS my Fv1 is too low my transplant Dr said at my Fv1 the outcome would not be good. 
And I would think that the second hardest would be, once you have accepted and started down the road, is the fear of maybe NOT being accepted. I would think that fear would stay with you constantly. Bobbi; do you find that?
