To Sandy

[Guest guest]

Welcome Sandy... We have a crappy disease to deal with but since deal you must, you are in the best place you can be.

There is always someone here to reply to whatever your need may be.

I saw 3 pulmodudes before finding one I like...

Check out the files on the web page, lots of info there.

Tell us where you live and do you have good support from family /friends?

I'll be watching for your posts.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: to Patti, Kerry, et al from Gwynne

Dear Gwynne,I love your post! It is so time appropriate for me as I leave in a couple of hours to drive to Nashville for my physical evaluation for a lung transplant at Vanderbilt. I will be testing for the next three days. I've always watched for your posts, since I will be possibly going through a transplant in the next few months. Your advice is so welcome. I've e-mailed you previously since we "share(d)" the same doctor in Dallas, Dr. Rosenblatt. Perhaps you may remember me.To end this, thanks again for posting. They are never too long.Sherry , age 64NSIP '98, PH, PBC, Bronchiectasis>> Patti and everyone who doesn't know:> A thoracotomy is where they make the incision> in the back and it sort of wraps around to the> side. That's what I had for my single-lung> transplant. I have no reason to doubt what> my doctors all told me - that a thoracotomy> is the most painful of all surgical incisions.> As I'm sure Kerry will agree with, it deserves its> nasty reputation. They slice through muscle,> nerves, tendons, and ribs. I still have a pretty> large gap in two of my ribs where they cut> them open, all of which lead to some killer> backaches. I've never heard of two incisions> from the back, as I understand Kerry had. I> can't even imagine that. Bring on the drugs> for the girl!!> > Usually, for double-lung they do the surgery> from the front, opening up the ribcage. I> forget what that's called but I think it's a> sternumectomy. It isn't supposed to be AS> bad. Neither one is a walk in the park. But I'd> have my surgery again in a heartbeat if I> needed it.> > Prayers please, for the results I'm awaiting on> a 24-hour heart monitor (a holter monitor) to> verify that everything's normal there. Also, I> found out that a facial lesion I have on my> cheek is a carcinoma, so I'll have to have a> surgeon cut that out. bah. It's always something,> right? They would consider using a topical> cream that is sometimes used to treat skin> cancers, but in someone who's immuno-> suppressed like me, there's more of a likelihood> of it spreading. I guess this is a pretty common> thing, though.> > Kerry, I'm so delighted that you seem to recuperating> right on schedule. I know the pain is terrible, but> it does get better. I went from a drip to Norco, to> Vicodin, to Extra Strength Tylenol in probably a 5> week period. Did you have TWO thoracotomies? !?!?> You'll be out walking in no time I'm sure, if not already.> I'm so proud of you, and I can surely understand you> hyperventilating when you got the call. It's the most> important phone call you'll ever get, and so many> emotions are involved. Mine was also scary because> there wasn't time to drive from Fort Worth to San> . I had already compiled a list of pilots with> private planes who said they'd be available 24/7 as long> as their planes were here in town. The first one on my> list was unavailable, which terrified me. Fortunately, the> second call was a hit, and before long I was being> air-ambulanced to San . Today is my nine-month> anniversary since my transplant! It still amazes me!!> > I found these things to be helpful for various reasons:> -let other people help you whenever they offer> -drink lots of water> -take naps when your body demands it, especially> since you won't sleep great at night for a while.> Sleep is considered medicine after transplant.> Sit down and rest when you're in a lot of pain.> -Remember to breathe deeply. As you said, it is> normal for transplant recipients to continue to> take shallow breaths, since that's what they've> been doing for so long. Also watch your posture.> -follow the rules they gave you about food> preparation and restrictions. They're good rules.> -keep a log/chart to keep track of your meds and> what time of day they're taken. I also make a list> (with copies) of all meds which I use as a checklist> when it's time to refill pillboxes. I have 3 of the> one-week boxes. I usually try to fill mine for several> weeks ahead (it takes forever at first and never gets> to be a fun pastime) but sometimes I have to make> a minor adjustment after my labs, every two weeks,> if necessary due to my Prograf or Coumadin levels.> (I'm only on the blood thinner since the blood> clots last summer in Colorado.) Minor changes in> Prograf are common for quite a while until you stay> within the therapeutic range desired. And of course> you'll be tapering down the Prednisone, although the> rate of change depends on the doctor. I'm now on> 10 mg. and the plan is to have me down to 5 in three> months. I lost ten pounds after the surgery and never> gained from the Prednisone. I have gained weight over> the past 4 months, but it's more emotional than> medication-induced eating. Such a battle for me!> > A period of euphoria is common post-transplant. Often> when that wears off, there is depression. I was already> on an antidepressant, but I've made a change there, too.> I felt that I had to redefine myself, because the focus> and purpose of my life for four years had been "just"> trying to stay alive. Then all of a sudden I could breathe> and the focus changed. After being given such a huge> gift, I felt guilty about feeling down... like I didn't have> the right. It's not helpful to go there. Be kind and> gentle to yourself. What you've been through is> traumatic, even if you're strong and handled it well.> In my case, my counselor believes that the series of> events of the past year, and the years preceding it,> have resulted in Post-Traumatic Stress Disorder. She> says that any time you come that close to death and> know it, it's going to crop up in the emotions at some> point one way or the other. So I'm working my way> through that. Also, the regimen of labs, clinics, still> wheezing sometimes (which you probably don't at all),> doctor visits, etc. definitely keep you in the medical> "loop", which you were already sick of. And then, for> me, there's always that silent fear of lymphoma or> rejection. It's not huge or overwhelming, just a> low-level fear just below the surface. It's a trade-off,> but a worthwhile one for sure. I give enormous credit> to God for giving me peace, and to my support system> of friends and family, including my Air Family. Kerry,> you are indeed blessed to have a caring husband to share> your journey and transplant experience with. I'm so happy> for your children, whose mom has been given a second> chance at life.> > , I'm SO glad you're home. I was much calmer,> MUCH more comfortable, and well-rested when I got> out of the hospital and into the little apartment I stayed> in with my children for 5 weeks. And then I felt even> better when I came home. Ahhh, home. I hope you continue> to recuperate as pain-free and smoothly as possible.> Keep up the great attitude - it'll get you a long, long> way. I feel pride in your accomplishment.> > For the rest of you waiting for the call, I pray that> it comes soon. And for those of you who think you don't> want or couldn't handle a transplant, I beg you to think> through that decision very, very carefully. When you have> faith that it's your only option to live, you'd be surprised> at how strong you can be and what you can tolerate.> Life is good and is a gift from God. For those of you who> have made a definite and unchangeable decision not to be> transplanted, or aren't candidates for tx, and to everyone,> I pray for your stability. For those of you who are struggling> with a decline in health, I pray for healing, strength, and> peace. For the newbies, please don't forget to make use of> the internet, but remember that you can get an awful lot of> very useful information combined with experience from> the board. There are no dumb questions, and PF is scary> for everyone. If you're new to oxygen use, let it be your> friend. Take lists of questions to your doctor at a teaching> hospital if possible, and advocate strongly for yourself. If> you aren't assertive, now's the time to learn to be! If you're> depressed, a little or a lot, join the club and talk to your> doctor. It usually comes with the disease. Know that you> aren't alone. If you have any symptoms or think you might> possibly be sick, call your doctor! Get and use your pulse> oximeters, no matter what your doctors say. Remember that> you are the only ones who know for sure when it's time to> increase your oxygen flow, not your doctor. If you're> progressively short of breath, don't wait for a doctor to> tell you that you need to increase your liter flow. You tell> him! And if you don't get good communication or your> expectations met by your doctor, change doctors!!> You can still have passion for life, but you may have to> create new passions and different expectations. You're> still unique, beautiful, worthy of happiness, and loved.> > Sorry this is so long-winded, but I don't post much anymore> and maybe it'll help someone.> My wishes go to everyone for a Happy New Year filled with love,> laughter, peace, and hope.> > Hugs and blessings,> Gwynne 57 Single-lung Transplant on 4-3-08 at> UTHSC - San Fort Worth, TX>