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If you thought .9 mpg was slow!

December 8, 2012

Long time no blog, believe me if there is any big news you’ll see it here as Scott and others will post on my behalf, but after realizing how much time has passed since the last blog I’ll try to report sooner as this one will be long.

My brother Michael was here for a week we got some questions answered about the chronic cough and whether the headaches are part of the cough or lack of Oxygen and how to balance that with meds so I’m not “coughing up a lung” as they say!  Mostly it is stress headaches from shaking my head with I cough.

I’ve now gotten to know other transplant patients through the treadmill program, and have seen a couple of the patients go in for their transplant.  3 weeks ago the lady sitting next to me on the bike was chatting me up about our illness and we teased about who wanted the fans on and who didn’t and then she told me that she was sure she was going to be the next recipient.  it was her time….  When we were going home I said to Michael how can she know that?  She was so sure of herself….

The following week we were going through the food court and we saw her husband who told us she got her lungs that past weekend!  Just like that… she was the next one!  I look forward to see her return to the treadmill room as part of her ‘post-op’ program.  I also want her to read my palm or something to see what she can tell me about myself.

Brother Kenny, with wife and child in tow were here for American Thanksgiving and we had a surprise feast to come home to after the Thursday work out.  A full turkey and all the fixings had been delivered by some special people that work with Scott.  My family got to see some of the Canadian Nice that we know of up here.  Very similar to Minnesota Nice if we can get the chance to return it we will have Lefsa and Lutafisk, Or Walleye and beer.

My Niece who is 8 has a very sophisticated eating palate.  She was especially enjoyed the gluten free quinoa stuffing along with the squash soup .  Had to fight her for some of the cranberry sauce… I think the home made cranberry sauce was the favorite side dish for the two of us!

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Simultaneously in Minnesota, they were having a snow fall, getting ready for black Friday shopping and probably on their 2nd foot ball game.  We got a text showing us the first snowman of the season.

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We were to have a special speaker for support group a couple weeks ago who is one of the thoracic surgeons.  He was un-able to attend the meeting because he was scrubbing in for surgery which was good news!  There had been 6 lung transplants in the last 7 days.  They asked someone who works in the research department with the thoracic surgeons to talk about the ex-vivo system they use and are doing research with in Toronto.  The attached news letter link talks about the system and has a video link that was from a Science Design convention in 2010 in San Francis,  TedMed, which featured the machine and was very eloquently explained by Dr. Shaf Keshavjee who is the program director at Toronto General.    It’s pretty awesome, it is science research so you decide if you want to watch it or not.  It’s not a human lung.

http://www.magazine.utoronto.ca/leading-edge/a-cut-above-lung-organ-transplant-alison-motluk/

So this brings me to the end of November.  We are already a week into December, Mary Beth; the lil sis, just left from being here for a week.  I had a slow time of it.  I started this program at 1 mph on treadmill, when Sue was here I was doing .6 to .8 at times.  I remember Sue saying  I didn’t think anyone could walk that slow, I laughed at that thought!  Believe it sister!  I’ve been through all the oxygen masks and I still have a high Borg after the treadmill which means my shortness of breath is uncomfortable enough to not make it worth while to walk, so now I’m trying to extend my time on the bike and do more work with the weights.

The end of the week we had come up with a plan to use in the Treadmill Room as well as at home with oxygen usage.  Spend time after each 10 reps recovering, which includes putting on one sock at a time, stopping, waiting and then putting on the other sock.  Oxygen gets turned up for high energy items like washing, peeing, dressing, walking to the stair lift, walking from the bike to the chair.  This will help with the recovery and the feeling of desperation I get when my Oxygen level drops like a rock upon exertion.  It comes back but I need to have faith and patience waiting for it.

Thanks to everyone for their continued well wishes  I can feel the energy.

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8 Comments
  1. Brian Harris permalink

    As the Christmas season approaches we been thinking of you more an more Pam, so nice to read these updates…wishing you all the very best this season and our hopes and prayers are with you! Brian and Kelly.

  2. I found you Pam! It is so wonderful to hear you speak through these writings and I am so touched to hear how your story is playing out. I think of you often often often and send you breaths and wish for you air. Much, much love and I guess it is not too early to say it: Merry Christmas! And, big wishes for a very happy new year

  3. Neil Affleck permalink

    Thanks for the latest update Pam– Photos brought back memories of the American Thanksgivings I enjoyed while in the USA…Hang in there, and eyes-on-the-prixe!!
    Love, Neil

  4. John & Shannon Stroh permalink

    Hi Pam,
    Wow that looked like quite a spread for Thanksgiving.

    The  message of hope in your entries is quite amazing. It also sounds very familiar, as I think I heard the same talk from another strong red head. It must be something in the Stroh/Lehn blood.  The biggest thing I learned from Steve is to never give up on hope and it certainly sounds like you are living by that motto. Please keep the resiliency of the red head rolling and know that you are inspiring all of us each day with your fight.

    We will be crossing our fingers for lungs… Stay strong!

  5. Alexa Murphy permalink

    Pam, Thank you for keeping us in the loop. Love all the photos! We light candles for you every week and send our prayers daily. The best Christmas gift ever would be a set of new compatible lungs for you…we will keep sending our positive thoughts out into the universe and continue to hope. Much love from the Murphys

  6. Frank Taylor permalink

    Thanks so much for keeping us in the loop, Pam. My thoughts are with you and I very much hope that your transplant comes soon. It would be so great if you could start the new year on the upswing. You’re a brave, strong person who, in the face of all of this, seems to be able to find joy in the small things– you’re an inspiration to us all. Keep on keeping on!

  7. Karen Saunders permalink

    Do you have an option to get on a list for a “refurbished” lung” to lesson the waiting time?

    I’m happy to hear your appetite for turkey dinner is intact and that you had a nice Thanksgiving! And here’s hoping you get the Christmas present you need and deserve.

  8. Kelly M permalink

    You are amazing. Sending you deep healing breaths, Pammy. I love you!

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