Canadian Lung Association Blog

Larry’s New Lungs: a moment of gratitude

Card: To my donor family

 

 

 

 

 

 

 

 

 

What a miracle!!  I still can’t believe it at times, that I made it and how blessed I am.  I really believe in miracles now!

I thank my donor family so much for giving me the gift of life and I thank all my friends and family, especially my sister, for all their support and help through this.

This journey is pretty much an ongoing thing, everyday. My double lung transplant is not a cure, it is a treatment and so far so good. Touch wood. :)

It is so fantastic to be able to breathe. I’m going to make every breath count and pay it forward as I repay this gift by helping others through my experience.

 

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Larry Graham

On October 21, 2012 I received a double lung transplant in Montreal after four years of being on supplemental oxygen and being on the transplant waiting list for 22 months. I still say it's a miracle and am trying to repay that miraculous gift everyday by paying it forward and telling my story to help other people waiting for organ transplants.

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13 comments on “Larry’s New Lungs: a moment of gratitude
  1. Garth Matthews says:

    Hi Larry…Great story…so glad it worked out for you. What conditions did you have ? I have emphesia plus pulmary fifbrosis for past 3 years….I’ve been on oxygen for 1 year now. I’m curious as to how you got on the list….my doctor said that he wouldn’t put me on until I was bed ridden ? Also that I had to lose 50 pounds ( I’m 233 ). Did similar things like this happen to you? I have a hard time walking any distance and I’m constantly getting flair ups..I realize that everyone is different but any comments or advice from you might be helpful.
    Thanks Garth PEI

  2. Larry Graham says:

    Hi Garth, thanks for asking. Yes, a lot of the crowd I know had to lose weight before getting on the list, but I didn’t because I was pretty thin. When I ate a meal it would put pressure on my lungs and my breathing would get worse. I don’t think it’s a good idea to wait until you’re bed ridden before you get on the transplant list. You have to exercise to be in good shape for the operation and recovery. You have to be a little proactive in your situation as well. As you know, you have pretty much 5 years to get a transplant when diagnosed with pulmonary fibrosis. I’ve been lucky, I had an exercise program that kept me in relatively good shape until I was called. I had COPD and grew up with chronic asthma with allergies. The fact that I was stupid and smoked didn’t help me very much, but thankfully I quit before it was too late.

    Garth, I’ve seen some people in my class wait too long and that’s not good. The one good thing is that, if you were bed ridden they would put you on an emergency list, but then again you’d be taking a big chance. What, if new lungs didn’t arrive in time for you. My advice is talk to your doctor again and find out where you can get into some kind of exercise program and eat healthier. Also, doesn’t all of the Maritime provinces send their patients to Toronto? They exercise there and will monitor you. To get on the list you have to be living 2 hours away from the hospital. Whatever you do don’t give up and don’t let anyone count you out. You take care and good luck to you on your journey.

    • Garth Matthews says:

      Larry, thanks for the advice on fitness ! Its harder than most people realize if you have a food addiction but I’m trying.
      Were you bed ridden when you were down to 12 % ? Was that 12 % in your blood or with an oximeter on your finger ? Presently I drop down in the 50’s with the oximeter after walking up-stairs or if I have to carry something. I try not to go there but I drop from 90 to 70 just going down the hall with oxygen on at 5MPM. Have you ever had to use a wheel chair ? Have you heard any good reports about Esbriet ?
      Also thanks for the information about being 2 hours from the hospital…..I didn’t know that. This will be tough for me as I would have to move from PEI to Toronto for who knows how long. Anyway I would certainly do that if I thought I had a chance at a transplant.
      How are you feeling now? Are there still some risks ?
      Garth

      • Larry Graham says:

        Hi Garth, I understand about food addiction now. Since the transplant I’m on prednisone continuously and boy does it give you an appetite. I’ve gained about 30 pounds since Oct. 21, 2012.
        When, I was at 12% lung capacity I wasn’t bed ridden. I was a little slower and had to raise my oxygen flow rate a lot higher to about 4 or 5 flow rate. I still moved around and went to the Lung Association for my exercise classes. It helped that there was a respiratory therapist there to monitor me and that made me feel safe about my limitations, but I knew I had to get a transplant really soon and thank God I did. I was on the emergency list when I got called.
        Nope, I really don’t know anything about Esbriet except that it helped some other patients in my breathing class. I was on the Advair inhaler taken with the aerochamber plus Atrovent and Alvesco and even the last week my Respirologist put me on Zenhale as a last resort. I found it worked for me, but I wasn’t on it for very long before my transplant. Now, I’m not on any of these. Thank God.
        Garth, it’s a bran new life now and I’m doing fantastic.
        You know, I’m not sure about the Toronto bit, that’ll you’ll go there. Montreal might be another option for you, but follow what your doctor advises. I knew a little French which helped me there.
        You have to be your own advocate. Ask questions and never give up. You should’ve been told all this by your doctor. Make him work for his money. If, he’s just a G.P. get a Respirologist and more opinions.
        Garth, there’s always risks for rejection, but they can deal with that and have many anti-rejection meds that they can change to or lower or raise the dosages. I’m trying to keep myself in the best shape I can and am really enjoying life again.
        You can too. Just be positive and fight for your life and never give up. Heck, I’m 64 now and I feel and look like I’m 35.
        Toronto is a lot quicker if you’re on the emergency list than Montreal from what I’ve heard and seen. Garth, try and keep yourself in the best shape you can and listen to their advice about loosing weight.
        We had a girl in our class told to just eat carrots to get her weight down. She did and she got her double lung transplant.
        All the best and good luck. Like I said before, don’t let yourself be bed ridden. You loose so much strength and muscles in your legs. Try to get moving around even, if you have to jack up your oxygen flow.
        You take care. My fingers are crossed for you. Hey, prayers help too. :)

        • Garth Matthews says:

          Larry….Thank you for your inspiration and words of wisdom ! You are helping me and a lot of other people who read this page. I have a few more questions…..What strength is your Prednisone when you are on it continuous?
          I’m on a flow rate of 5 most of the time….have you ever seen or heard tell of a portable machine that goes over 5?
          Thanks again Garth

          • Larry Graham says:

            Hi Garth, after my double lung transplant I was on about 15 -20 mgs of prednisone, but after 2 or 3 mos I’ve been steady on 10 mgs since then. Other transplant recipients in my group are on a lower amount after 2 years and longer. I have one friend on 5 mgs after 4 years and another on only 7 after 2.
            I’m not sure, but there must be a portable concentrator that can go higher than a 5 flow rate on continuous flow. I’ve never used one. I was lucky when I hit the flow rate of 5 for about 2 weeks, then I received my life saving emergency call that they had lungs for me.
            Garth, some people in my class used the Eclipse Portable Oxygen Concentrator. I forget whether it could go over 5, but a continuous flow is much better than pulse.
            I would advise asking your oxygen supplier to be sure. They must know. You could check the internet and see as well, to see if there any new machines out there, but your oxygen company is the best bet. They have to up on all the latest equipment or know where to get it. Don’t wait, ask them tomorrow. Good luck and all the best.

  3. Bill Lewin says:

    So glad you are doing well, you are a inspiration

  4. Bill Lewin says:

    Enjoyed watching you on Global National. This country really needs to wake up on pollution matters and not just think its happening else where.

  5. Larry Graham says:

    Thanks Bill, I had much more to say, but a lot went on the cutting room floor. It got the message across though. The WHO mentioned indoor air quality too. Most often than not, it can be worse. Thanks for commenting. :)

  6. Garth Matthews says:

    Hi Larry, just wondering how things are going with you now ? Have you had any new complications with your new lungs ?
    Also do you know if its a problem with types of cancer ( including skin cancer ) to get on the transplant list ?
    I did get a new portable oxygen machine….its called the Eclipse 5 and it goes up to 9 LPM on pulse. I really like it, however I still drop from 90 % to 60 % in one minute if I’m walking to the car. I guess its time to start the paperwork. As you know, its a scary thought.
    Garth

  7. Larry Graham says:

    Hi Garth, I’m still going strong and am getting ready to go to the Transplant Games in Moncton from July 7-12. I’m really looking forward to it.
    I’m concerned about you using the Eclipse 5 on pulse. It sounds like you need a steady flow and higher rate and you shouldn’t go down so low when walking. You gotta be taxing your heart. A friend of mine, with IPF, mentioned the other day that, she’s using liquid oxygen now with a tank that goes up to 15 from VitalAire and that would certainly help you. To me it looked just like the other liquid oxygen tanks, I was used to.
    Garth, I do believe there’s a problem with having any kind of cancer to get on the transplant list. I had to have a final procedure and polyps removed in my colon before they would put me on the list to make sure they weren’t cancerous. It was right before Christmas that I finally was accepted on the list and I was so happy.
    Talk to your doctor and change to liquid now and get any signs of skin cancer taken care of quickly. Don’t wait.
    You take care Garth and all the best in your struggle.
    I hope I’ve helped you a bit. Stay strong.

  8. Garth Matthews says:

    Thanks a lot Larry…..your advice is always appreciated !
    Garth

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