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Ken
Member
Username: Kendo
Post Number: 26
Registered: 03-2010
| | Posted on Friday, July 09, 2010 - 11:23 am: | 
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It's bee awhile since I've posted. I do read everyone's else's posts every single day and they truly motivate me. I too can't wait until I'm transplanted and can do the simple things that I do now with difficulty. I still feel my situation is less severe than others and I expect my wait to be a longer one. I did find out from my procurement nurse that they had a lung for me about a month ago, but it had a contusion on it. So I guess my "number" could come up at any time.
I just finished pulmo rehab and signed up for Phase IV. I can now go in any time I want to exercise, which I've been doing daily. I didn't get too much out of the actual rehab itself, but it did motivate me to do more and want to get in better shape. I'm up to 1 1/2 hours a day exercising. I'll just leave it at that for now, just to maintain where I'm at physically.
On Tuesday I go in for my first clinic visit (after being listed), and am anxious to find out what light if any they can shed on this whole process. I feel much stronger than when the process started, but I don't want to get to strong that they take me off the list. I do want this transplant and wish it could happen sooner than later. But it will happen when it's meant to be. As I said earlier, there are others in more dire need than myself.
I do appreciate all the posts on those that are going through their lung transplant surgery and the responses from those that have already been transplanted. I wish however there were more posts from those that are just in a holding pattern and waiting.
Before I started this whole process my main fear was dying gasping for that last breadth. I do now have hope and can't wait to do the "normal" things that I used to do.
Thanks for listenin' like the subject line says....just my spin on nothing in particular.
Ken
Awaiting single or double lung transplant in Montogmery, Illinois. Listed 04/22/10
"The choices we make dicate the lives we lead. To thine own self be true" - Shakespear |
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Hostess Rise
Board Administrator
Username: Rise
Post Number: 13604
Registered: 05-2003
| | Posted on Friday, July 09, 2010 - 11:41 am: |
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Hi Ken
Thank you for the update. I agree with you, it would be wonderful for those who are waiting for their transplant to join us and share how they are feeling.
I believe some people might experience a form of denial and do not want to read or deal with certain issues that could affect them. Reading will bring attention to these worries that others might have. We are all different. Some folks like to be fully prepared and read and experience as much as they can prior to transplant where some people like to take day by day and not think about tomorrow. Just my thoughts on this possible reason that you brought up.
Now, here is something that I read that I would like you to further explain- " I feel much stronger than when the process started, but I don't want to get to strong that they take me off the list. " I highly doubt that this is possible. If your body became very strong and muscular and you looked like a champion body builder, they would still transplant you. In fact, It is my belief that the stronger you look the more likely it is that many centers would want to transplant you. The healthier you are going into transplant the better you will do post transplant which makes you an ideal transplant candidate.
If I were you, I would do as much as you can on your good days as this will make your difficult days less difficult to cope with. TAKE CHARGE!!!!
Cystic Fibrosis- dx at 2yrs. -2nd double lung tx-05 Jackson Memorial Hospital, Miami, Florida
Debra Fertel MD- Med. Dir. Lung Transplant/Pulmonary Hypertension Programs
Si Pham MD, Professor of Surgery, Dir. of Thoracic Transplant & Artificial Heart Program
Anas Hadeh MD, Cleveland Clinic, Weston, Florida
CF consultant- Critical Care and Sleep Medicine
Sharing Knowledge is an Invaluable Experience
Transplant Friends & Chat
Questions- Contact }Hostess Rise' |
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Brian
Member
Username: Bdog
Post Number: 47
Registered: 05-2010
| | Posted on Friday, July 09, 2010 - 03:53 pm: |
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Ken- I am actually a little behind you, but still in the holding pattern. I have not been listed as of yet and have really just begun the evaluation process. I'll be finishing pulmonary rehab on Tuesday and will be exercising at home till the kids go back to school. Then I plan on getting back into the next phase of rehab if I start to slack at home. Although I don't think I will. It is nice to be up and moving somewhat again. Before I went to my TX clinic, I was with a Pulmonologist that more or less put me on O2 and sent me out to pasture. I became pretty depressed and sedentary in that year. Then it hit me, I am 43, I am not giving up yet!!!!!!!!!!! I was also afraid of that last gasping moment, and just prayed my children were not here when it happened.
I believe rehab helped me quite a bit. I can walk roughly 1/2 a mile now in 10 minutes and help around the house more than I have in 1 1/2 years. I do feel like you though in that, at times I don't think I need the new lungs as much as others. But then, there are days I need them "RIGHT NOW".
Like Rise' said, It is not your outside that determines your need, it's your numbers that got you here in the first place. I had those same worries about being in to good of shape. When I asked the rehab people about it, they said it actually makes you a better candidate. They flat out told me that I am sick enough to need it, but strong enough to get through it. That still doesn't mean I'm in a hurry. I want all the use out of these puffers that I can get, I know I won't reject them..............but with a FEV1 at 15%, how long can they last?
I actually do post quite a bit here, but it is mostly with questions rather than my feelings. I guess I just hope I can be a "Dad" again. I miss that so much. This summer has been horrible. My wife and kids go to the pool, the park, baseball games, the zoo,etc., and I sit at home because of the heat and not being able to stay out or keep up for as long as needed. I guess I need to get over the pride and get on one of the scooters that many places have available for those with disabilities, but in the back of my head, I don't want to embarrass my children. Anyway, I'm rambling now, I hope your new blowers come soon..............and as always, "God Bless the donor and their family".
Norton, Ohio
Lung Transplant Candidate
Cleveland Clinic
Emphysema
5-12-2010
Don't look back and regret,
Learn and look forward. |
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Starla
Member
Username: Starla_sagehotmailcom
Post Number: 12
Registered: 01-2010
| | Posted on Tuesday, July 13, 2010 - 01:19 pm: |
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Hi Ken
I felt just like you in the beginning of my wait, that if I got in to good of shape they might skip over me as I wasn't that bad off.......that's not how it works. They want you in good shape as my Dr said the ones that do really well are in good shape, are motivated and are knowledgeable about the tx process. Being positive is difficult when going thru something like this but is key to the whole enchilada I think. I have to daily, hourly change my thinking. Some days I feel really bad and I have learned no tot fight it and eventually it passes. Right now I am having a problem getting motivated to walk on my treadmill, I just have to force myself to do it when I do do it. I was listening to audio books that helps if you have a really good one. Maybe I need some fun music maybe Abba if I can find the CD without to much effort!! I really like to keep positive and have people around me who are or don't talk to me about negative stuff. I have found that complainers drain me of energy and bum me out. Finding the small things in life like right now I am into the birds! I have a blue jay who comes to my window everyday for peanuts and I am learning about other birds who come to my bird feeder.
I have had to let go of cooking recently as I just don't have the energy or appetite to cook. I feel bad because it is one more thing my husband has to do and he is pretty stressed out at times.. But he is really doing a good job considering he hasn't had to cook for 38 years. I got married at 20 and was a control freak until about 5 years ago.
Writing is hard for me as I don't think I am a very good writer and I can spend a lot of time rereading what I write....and rewriting it.. I lost my first post and had to start this over, I almost didn't ....Ahhhhh!
So Ken like you I also read everything and appreciate all the wisdom we get on these pages. Thanks for your post it keeps me going knowing there are others sharing this grand adventure!!! Yes Pollyanna is my favorite movie!!!! Really. XXXXXX
LIFE IS GOOD!!!!!!
Starla
Lung Tx listed 7/19/09
Sarcoidosis 6/04 |
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Brian
Member
Username: Bdog
Post Number: 48
Registered: 05-2010
| | Posted on Tuesday, July 13, 2010 - 04:17 pm: |
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Hey Ken!!!!!!!!-Just finished my rehab today. I feel pretty good about it. I truely feel much better than when I first went to the TX clinic. Mentally and physically. I had a chance to meet a few newly transplanted patients; 2 older and one exactly my age (43). She is doing very well and is so glad she went through with it. She is only 1 month out but is doing very well. Even the older txers are looking pretty good and have been very encouraging.
I feel a lot stronger now and look forward to getting on the treadmill and have now added free weights to my home workout. I plan on being as strong as possible by the time I get the call. When I first went to rehab I had become pretty lazy and that in it's self is fairly depressing. Hang in there brother, I'm keeping you in my thoughts.
Brian
Norton, Ohio
Lung Transplant Candidate
Cleveland Clinic
Emphysema
5-12-2010
Don't look back and regret,
Learn and look forward. |
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Ken
Member
Username: Kendo
Post Number: 27
Registered: 03-2010
| | Posted on Wednesday, July 14, 2010 - 09:03 am: |
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Thank you to Rise, Brian, and Starla for your posts. I really needed to hear that. Sometimes you already know the answers, but need to "hear it out loud" to really believe it.
I went to my clinic appointment yesterday. Was a bit disappointed that I didn't see the regular doctor that sees me (Dr. Alex) and didn't much like the doc that did see me. They were happy my weight was down (7lbs) and were really happy with the amount of exercise I am doing. The exercise is the most thearaputic thing I do. It just feels good to get out and do something. When I go to the rehab place and exercise I do an 1 1/2 hours. I remember my healthier days when I used to run 5 miles a day 5 days a week. I long for those days, but that will never happen again. It just feels good to be active doing something. My wife and I were driving yesterday and I saw a jogger, and I told my wife, "that's what I'm shooting for". Not sure if it's realistic, but a man can dream.
I too long for the days when I can "keep up". I went fishing last night with my stepson and grand kids, and it was difficult for me to even keep up. We're at one side of the lake, and he says "Hey Ken, let's try that lagoon over there" (which is on the other side of the lake. Easy for him to say!!
Anyway, thanks again for all the support and the posts. They made my day!!
Awaiting single or double lung transplant in Montogmery, Illinois. Listed 04/22/10
"The choices we make dicate the lives we lead. To thine own self be true" - Shakespear |
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Jack
Member
Username: Johnhollenbach56
Post Number: 148
Registered: 12-2009
| | Posted on Wednesday, July 14, 2010 - 09:39 am: |
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Good morning Ken,
Missed the start of your thread the other day, but (as I often do) wanted to get my 'two cents' worth in after reading your last post this morning. As far as running again, well it may not happen within the first year after your transplant (and I do emphasize ‘may not’ then again . . .), but who knows, folks seem to pick up that which they love after getting their rebirth.
I can remember just wanting to cross a room without having to stop for a ‘breather’, and now I am getting ready for my morning walk with my dog (we’ll probably cover 3 or 3.5 miles in an hour or so). The other day in transplant one of the fellows awaiting transplant was saying how he went to the store for water and found it exhausting to do so, I told him about a time I did the same thing. A 70 + year old lady offered to help me put it into my car (now there’s something to chuckle about).
You walk a fine line pretransplant, you need be sick enough to warrant the transplant, yet healthy enough to survive the operation. The better shape you are in going into the OR the quicker your recovery. Pretransplant I was very happy to be able to do 1 mph on the treadmill for near 30 minutes – now I get on and can maintain 3.6 indefinitely, just walking along. August 2/3 will be my 3rd rebirthday, and let me say life keeps getting better. Keep the faith Ken and those of you that are waiting, your time will come.
Stay well,
Jack
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Scott
Member
Username: Auphd
Post Number: 38
Registered: 12-2009
| | Posted on Wednesday, July 14, 2010 - 09:52 am: |
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Hi Ken - Keep up the good work.
My understanding (limited as it is) is that the amount of O2 required at rest has the biggest impact on the LAS from how sick you are point of view. I doubt that any amount of rehab is going to change that much. On the other hand things like how far you can walk in 6 minutes and your weight predict survivability and can boost your LAS. So the better shape you get in having to deal with the same sick lungs actually should move you up the list.
Don't assume that you want be back to running after the transplant. Laura is 7 months post transplant and is playing tennis for hours at a time.
Husband of Double Lung Transplant - 11/5/2009 UPenn
Sarcoidosis/Pulmonary Hypertension |
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Jack
Member
Username: Johnhollenbach56
Post Number: 149
Registered: 12-2009
| | Posted on Wednesday, July 14, 2010 - 10:17 am: |
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Hi Scott,
Actually if you go to the UNOS website there is a page on how they determine your 'Score' (http://www.unos.org/SharedContentDocuments/lung_allocation_score_updated_01072009.pdf), O2 saturation and use plays into it as does all of your 'qualification testing', I was unable to do my 6 minute walk (without oxygen), when I stood out of the wheelchair without my cannula my saturation dropped real quick, so they sat me back down - did not even get a step in edgewise (LOL).
How quickly activities resume is dependant upon many things, and should be addressed by your transplant team. Tennis, golf, baseball and sports like these all use muscles in the chest area, so you need be careful when resuming these activities - some of us get the 'clam shell' operation (which goes from armpit to armpit which would require more time/healing than the operation with two smaller cuts on the side. This is determined by your condition and doctors. Each of us may share some things and differ in others . . .
Stay well,
Jack
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Ken
Member
Username: Kendo
Post Number: 28
Registered: 03-2010
| | Posted on Wednesday, July 14, 2010 - 12:32 pm: |
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Jack,
Congrats on your upcoming 3rd birthday. That is amazing. You wrote something that peaked my interest....the 6 minute walk. This may be a dumb question, but is it better to try and walk farther or shorter? When I did mine, I did it without O2 and just walked at a leisurely pace. I feel that I could have walked further. Also, at the time I was not on O2 24/7 but am now. When I do my next walk do I do it with or without O2? I did one at Pulmo Rehab but that was with O2.
Scott, thanks for your post as well. I'm doing everything I can do to remain stronger. I need to work on my weight some more, maybe another 10 lbs would be good I think.
Brian, I think you mentioned free weights. When I go to the rehab center I work out for 1 1/2 hours, but at home all I have is a stationary bike and I get on that for an hour. Could you be more specific about your free weight routine? How many pounds, how often etc. etc.
Again, thanks to everyone that has posted, you all are helping me more than you know (on second thought, you probably know it).
Awaiting single or double lung transplant in Montogmery, Illinois. Listed 04/22/10
"The choices we make dicate the lives we lead. To thine own self be true" - Shakespear |
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Jack
Member
Username: Johnhollenbach56
Post Number: 152
Registered: 12-2009
| | Posted on Wednesday, July 14, 2010 - 12:46 pm: |
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Thanks Ken,
As to the walk, at rehab I did my walk with oxygen, for evaluation they had me without - not sure if that is protocol or just my center (UCSD). As far as how far to go, I always tried my hardest to do the most, but you need follow the instructions given at the time. They tell you to sit, ya sit.  You might ask about doing the walk again to show the progression of your lungs decreased function.
I did not find this site until after my transplant - wish I had found it earlier, it is a great place to find answers to questions where you want more than your TX team gives you or questions you don't want to ask them, and so forth.
Stay well,
Jack Hollenbach
jack_hollenbach@hotmail.com
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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Brian
Member
Username: Bdog
Post Number: 49
Registered: 05-2010
| | Posted on Wednesday, July 14, 2010 - 06:34 pm: |
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Ken- Well, let's see............First of all let me tell you about my 6 min walk tests. When my first pulmonologists was evaluating me for disability I did a 6 min. test w/o O2. I could walk about 200 feet before I was at 82% saturation; they stopped the test. My next 6 min test was a year 1 1/2 years later with my current pulmonologist at the transplant center. Again no O2 at the beginning of the test. Again I walked 200 feet before 82% was hit, at which time they turned on the O2 at 6 LPM and stabalized my sats at about 96%. They were trying to see how much O2 I actually needed to be on since I was never actually monitored for that. They finally decided on 3-4 LPM for walking. During that evaluation I was able to walk a total of 1100 feet w/oxygen in 6 min. My first Doctor just said, "Put him on 2 LPM" and sent me out to pasture saying there was nothing he could do for me.
Now then, after completing rehab I can now do 1900 feet in 6 min on 3-LPM.
As for free weights, at first I just did what we did in rehab using 5 lb weights. One set, with 10 reps of things like: curls, shoulder presses, butterflies, tri-cept raises, front shoulder raises. Since I have been home, I have started working on specific body parts. Today was bi-cept. I do 3 sets, 10 reps, of 3 different exercises. For instance: regular curls, hammer curls, and preacher curls. Tomorrow will be tri cept. The next day shoulders and so forth. I still walk on the tread mill for 20 min. (two 10 min intervals w/ 2 min break) every day. As far as how much. I do what I can. If it is 10 lbs then so be it. I'm not going to be Mr. Universe, but it definately helps because it hurts the next day.
Like I think I said earlier, I haven't felt this good in 1 1/2 years. Between the new meds they have me on and the rehab and learning how to control my breathing, I am like a different man. I have even been helping around the house more. Thank God, I don't think my poor wife was gonna make it much longer. Although she is a extraordinary women, she really needs a break. She is definately my rock right now.
Trust me though, running, swimming, playing any physical sports are still out of the question. When I am working out it is not easy by any means. I work!!!!!! I get short of breath!!!!!!!!!!!!!!!! But I do it in hopes that the recovery will be a little easier after TX. No matter how much I think I can do, I can't fix emphysema or 15% fev1.
Please don't think I am bragging in this post, I am just so much better mentally than I have been in a long time. This site has a lot to do with that as well as everything else. Transplant Buddies has truely changed my outlook on things.
Talk to ya soon,
Brian
Norton, Ohio
Lung Transplant Candidate
Cleveland Clinic
Emphysema
5-12-2010
Don't look back and regret,
Learn and look forward. |
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Starla
Member
Username: Starla_sagehotmailcom
Post Number: 14
Registered: 01-2010
| | Posted on Wednesday, July 14, 2010 - 08:32 pm: |
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Ken
My center was having me do the walk test about every 3 months, They had me walk without oxygen and when I hit below 91 they then turned on oxygen my tank, I didn't get very far without it.
Then the next time I went in three months later they had me sit for 10 minutes and they tested my saturation it was 86. They asked the dr if they need to have me walk and he said no. I found out that this put me higher on the list having a low saturation.
So the gist of it is if you have any changes for the worse then you need to let them know immediately. I totally know where you are coming from with keeping in good shape and being concerned you are going to be to well to go up the list. I have really kinda pooped out even though I could walk more. So I am getting a bit more enthusiasm for walking by talking with you. I also think that exercise makes us feel more chipper (endorphins) and we start to feel better. Some days not as many now, I think hey I feel pretty good I don't think I need a transplant! .Our minds do strange things.... My husband is a runner 6 miles in about 50 minutes and has done about 4 marathons he is 58. I am very glad he runs as it helps with the stress. Take care XXStarla
Lung Tx listed 7/19/09
Sarcoidosis 6/04 |
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Bill
Member
Username: Swtolbil
Post Number: 15
Registered: 04-2010
| | Posted on Wednesday, July 14, 2010 - 10:05 pm: |
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Ken, For what its worth. I am 9 months post transplant. prior to my TX on a 6 min walk I was on 13 lpm of O2 and walked 1 min 42 sec and my oximerty (SP) dropped to 72. I started walking 1 block at a time, each day I would go a little longer. Finally when called I had lost 16 lbs was walking about 1.5 mph. My transplant went very well and I was up and walking within 4 days. You can not be in too good of condition. Your condition makes you a better candidate . My recovery has been wonderful I walked a 5K in 45 min recently. Good luck I hope your wait is short and God gives you good lungs. |
Ken
Member
Username: Kendo
Post Number: 31
Registered: 03-2010
| | Posted on Thursday, July 15, 2010 - 08:26 am: |
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Brian, your rehab sounds much better than the rehab I went through. We did nothing with free weights at all. My rehab consisted of so many minutes on legs and then so many minutes on arms (treadmill and recumbant machine). The whole time I was doing that I never felt like I was getting anything out of it, but maybe I was. It did however motivate me to do my own thing once I got the wires off of me. I now do 20 minutes on the treadmill (2.5 mph), 10 min on arms (recumbant), 20 minutes on legs (recumbant), 10 minutes on arms (recumbant), back to the treadmill (2.5 mph) and finish with 10 minutes on arms recumbant. They do have free weights there, but I've never seen anyone do any of that. At rest I'm at 3 LPM and working out I crank it up to 4. When I did my final 6 minute walk, I did 800 feet at 3LPM. Sort of strange because my FEV1 is higher than yours I think, I'm at 20. In any event I am motivated. Working out has become part of my day and I look forward to it.
Starla,
I too have more energy, more enthusiasm and "less funk". It feels good to go to the rehab center every day and do "something". I even feel more alert than I did previously. I too used to run. I'd run 5 miles 5 times a week and I sure wasn't fast, only about 9 min miles, but I'd love to get back to some sort of running regime once I'm post transplant. My weight is down, my spirits are up, my wife loves me, my dog adores me (or is it vice versa I can't remember) and I have my friends on here. Life is good!
Ken
Awaiting single or double lung transplant in Montogmery, Illinois. Listed 04/22/10
"The choices we make dicate the lives we lead. To thine own self be true" - Shakespear |
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