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ajs
Forum Leader
Username: Ajs
Post Number: 756
Registered: 03-2008
| | Posted on Wednesday, April 17, 2013 - 02:29 pm: | 
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I really hope we can get this place rockin' like back in the old days. We helped so many people. I had trouble feeling at home on Transplant Friends, not sure why.
Me? I've lost 25 lbs. since my last post here, and at Duke in January I had my highest FEV1 in three years and 2nd highest ever. Went skiing in Vermont last month. I am 4 1/2 years out and I feel better than at any point thus far. I'm convinced you have to do much strenuous exercise to really stay on top. I do an hour and a half three days a week. I have a pet theory that maybe when you are getting winded, more blood goes to your lungs, which means more Prograf directly where it needs to be? I pray it continues, and that all my old friends here are well too. See you around.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17595
Registered: 05-2003
| | Posted on Wednesday, April 17, 2013 - 02:38 pm: |
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WOW! Great news about your health!
What an interesting theory about Prograf and oxygen. I am so happy you feel like home here.
I am going to try really hard to be here and on transplant friends.
Take care and thanks for posting!
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ajs
Forum Leader
Username: Ajs
Post Number: 757
Registered: 03-2008
| | Posted on Wednesday, April 17, 2013 - 03:12 pm: |
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Hi Rise,
They said at Duke that maybe my FEV1 improved because of the weight loss. I don't want that to be the case, of course, but I'll take it no matter what. I haven't weighed 178 pounds since like 1985!
I wonder if anyone here (when they get here) has had an FEV gain from weight loss?
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17596
Registered: 05-2003
| | Posted on Wednesday, April 17, 2013 - 03:45 pm: |
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I would agree with weight loss especially if you lost weight around the tummy area. Less weight against you when you inhale-that is probably one reason.
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 579
Registered: 12-2009
| | Posted on Wednesday, April 17, 2013 - 04:28 pm: |
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I agree with you whole heartidly(sp?) on exercise ajs, not only do you feel better on the whole but it improves attitude and outlook on life as well. As for the weight, well with exercise the excess pounds tend to disappear . . .
Jack Hollenbach
Received double lung transplant August 2 & 3, 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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ajs
Forum Leader
Username: Ajs
Post Number: 758
Registered: 03-2008
| | Posted on Wednesday, April 17, 2013 - 04:40 pm: |
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Jack! Good to see you posting. I also stopped eating as much. Amazing how that works. Also, I think the Chia seeds I've been eating almost every day promote weight loss, and give you more energy to work out. I was working out before, but I really stepped it up. I'm blessed enough to be able to. I think it's important to do something that gets you winded, even if its just walking up hill or up stairs. I hope you are doing well, too.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 580
Registered: 12-2009
| | Posted on Wednesday, April 17, 2013 - 05:08 pm: |
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Life has been good, still hiking daily (Hula my dog insists on it rain or shine) along with some exercises/stretching keeps me pretty fit (actually think I'm in better shape now than say 10 years or so ago).
Only real complaint is allergy related - for some reason springtime has hit me harder this year (must be more pollen or something), my team has me on antihistamines for the first time in many years, so of course one day I thought 'oh it's not so bad out' ended up coughing so hard I either tore a muscle or cracked a rib - so now I need slow up for a bit 'till this passes . . .
Jack Hollenbach
Received double lung transplant August 2 & 3, 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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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17597
Registered: 05-2003
| | Posted on Wednesday, April 17, 2013 - 05:27 pm: |
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Hi Jack
I hope you feel better soon. I know what you mean about a hard cough- I have mucus in my sinuses and sometimes I will cough because of it and sometimes if I am not standing correctly, I can pull my neck out of alignment and be in pain for days.
Take it easy- I once pulled my chest muscle near where I was cut for the surgery and I kept pushing and pushing until I made it worse.
Take care
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Jack
Forum Leader
Username: Johnhollenbach56
Post Number: 581
Registered: 12-2009
| | Posted on Wednesday, April 17, 2013 - 06:30 pm: |
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thanks Rise, another one of the joys of immuno suppressants is they retard the healing process - so a pulled or torn muscle takes much longer to heal, and of course Prednisone does wonders for our bones as well . . .
Jack Hollenbach
Received double lung transplant August 2 & 3, 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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Tamara
Member
Username: Heppygirl
Post Number: 92
Registered: 05-2011
| | Posted on Thursday, April 18, 2013 - 07:01 am: |
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Glad someones posting here again. I don't get the other site, This one was more open, I feel more at home here.. *having trouble adjusting haha ;)*
But, one question. I have, since a week and a half, an inflammation of the bursa? (don't know exaclty how to name it, can't find it on google) in my hip. It hurts like hell, I had it last year in my other hip. Does anyone has any trouble with their hips/ lower back? I'm often in pain, have Physio but it keeps coming back. Does anyone has an idea where it comes from? And how to prevent it/heal it. Does anyone has experience with acupuncture AFTER transplant? Sorry for so many questions ;)
greetings Tamara
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 5338
Registered: 07-2007
| | Posted on Thursday, April 18, 2013 - 07:13 am: |
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Hi guys!
I am glad to be back home too! Thank you Rise!!! I guess my brain is old and set in its ways because I couldn't get used to Friends either. I am not a Facebook fan, but I deal with it to stay up on what everyone else is doing. I have missed everyone sooooo much!
Ajs - I totally agree that exercise is key to healthy lungs! I am working out more and harder everyday and my FEV1 continues to climb 3 yrs post transplant. I do believe that a healthy weight plays a roll too. Good for you for your weight loss!
I need to try Chia seeds. I miss all the good nutrition advice from you and Rise. Let's keep this going!
I love you guys!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Brian
Member
Username: Belizeangaijin
Post Number: 57
Registered: 06-2007
| | Posted on Thursday, April 18, 2013 - 07:19 am: |
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Hi Tamara!
I've just dealt with a hip problem myself and had symptoms similar to yours... I had pain in my right hip that would be incredibly intense when I walked but would settle down if I relaxed and didn't move around as much. I treated it as bursitis (inflmmation of the lining in hip) for several weeks/months but it kept coming back.
Finally I ended up going to Dr. because I wanted him to give me a steroid injection to bring down the inflammation so I could continue to train for the Transplant Games. He insisted on an x-ray first and it's a good thing he did! I had Avascular Necrosis of the femoral head.... Apparently this occurs in nearly 20% of transplant patients after using the high dose corticosteroids they give us right after transplant and when there are any episodes of suspected rejection.
Apparently what happens is the steroids in high doses can cause the blood vessels in the bone to constrict and eventually die, so the bone is left without blood supply on the ball of the hip where all of our weight is carried. It wouldn't be a big deal if the bone was just dead with no blood supply, as calcified bone is very hard, but what happens is our bodies recognize that the bone is dead/dying and so tries to regrow blood vessels by removing bone for new blood vessels to grow but since the area is already dead.... it never regrows on its own and the result is the ball of the hip gets weaker and weaker as the supporting bone underneath is removed by our body. Kind of like the edge of a riverbank where it's being undercut by the water. Eventually, the bone begins to collapse which is what causes pain.
Have you been checked by the Dr.? Had any xrays of the hips at all? Your description sounds so similar to how I found out about my issue as well.
Acupuncture: I tried it for several weeks while hoping this problem would go away so I could continue working. (I'm a nurse and spend 12 hours a day on my feet) I found the acupuncture made me feel better for a couple hours after the treatment but beyond that I didn't find it to be particularly useful.
Just my experiences so far with hip pain such as you described. I hope it's useful to you in some way.
Brian |
Tamara
Member
Username: Heppygirl
Post Number: 93
Registered: 05-2011
| | Posted on Thursday, April 18, 2013 - 07:28 am: |
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Thanks Brian. I've been to the dr, but he and I (AND the physio) al thought it was just muscular pain, the illipsoas gets shorter after being used to much... That was it last year, and with excercise it did go away eventually.. But Now, after I inured my hip 1.5 week ago (my foot stayed on the ground while my upper body was moving forwards, my husband stood on the back of my foot...) en my hip just stretched out, like an elastic band... Since then it hurts like hell... So I'm not sure if it's Avascular Necrosis... But I just had, last tuesday, a Dexa-Scan of my hips and lower back to see if my bones are having trouble (2 years ago I was already diagnosed with Osteopenie)... So let's see if that says anything..
edit: It also hurts when I sleep on it (and I can;'t sleep on my back, that hurts also, and on my left side I have shingles, so sleeping is quite impossible) and it hurts like hell when I sneeze or cough...
Tamara
24y/o, from the Netherlands
Cystic Fibrosis, Dxed at birth
Bilateral lungtransplant, September 2010
http://muffinmeetsworld.blogspot.com
Anywhoo... |
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DAP1122
Forum Leader
Username: Dap1122
Post Number: 3440
Registered: 05-2008
| | Posted on Thursday, April 18, 2013 - 08:27 am: |
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It is good to be back!!
Hello everyone!!
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17598
Registered: 05-2003
| | Posted on Thursday, April 18, 2013 - 01:05 pm: |
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Welcome back everyone! If I had a clue that this forum was missed by so many- glad that I have a good back up of this forum so I am no longer worried. I treat these websites with love and precious feelings because there are many special people who need support.
You all know that, YOU are the people that make this forum extra special because you bring life to the forum. Our visitors mostly are readers and a very small percentage are the people who actually post messages.
We are never alone!
I am so happy that all of our old timers are on board. Just know that when you have time from your busy lives, pop in and say hello as you are always welcome.
Tamara- I am sorry you are experiencing so much pain. I have heard that Shingles can cause residual pain. If you also have low magnesium levels that can contribute to muscle cramping and when you try and stretch out, you could cramp up and this can take weeks to heal up.
I believe many CF patients are low in magnesium before transplant life.
I will create another thread one day soon but for now, I will quickly share it here. I love coconut oil and when I do not take it daily, I can feel the difference. Coconut oil has many healing benefits. Maybe someone else can share if they love coconut oil too.
Feel better!
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Karen R.
Forum Leader
Username: Relivkaren
Post Number: 5339
Registered: 07-2007
| | Posted on Thursday, April 18, 2013 - 02:52 pm: |
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Rise
I will try to check in every day or so.  I love the format of this forum! I just couldn't get used to the other one. I am really sorry for my absence.
I love coconut oil too! It has part of my diet since before transplant. We use it for cooking mostly, but you can use it for everything - even to help dry hair. I have melted it, poured it on fruit and then froze it. Yum!
Good see some of the old gang again!
God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Double lung transplant on Dec. 1st, 2009
Cleveland Clinic
Ohio, USA
Be kinder than necessary because everyone you meet is fighting some kind of battle. |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17601
Registered: 05-2003
| | Posted on Thursday, April 18, 2013 - 05:07 pm: |
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Hi Karen!
It is a pleasure and honor to have you join us again.
I use coconut oil in stir fry and like you do with fruit and most recently, my home made high protein cake. Basically, I need healthy oils in my diet and I take in several teaspoons daily.
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