I am scheduled to give sputum sample #3 in the morning. It can take up to 8 weeks to grow out. I still have not heard anything about #2, but it has only been 3 weeks since I provided it.
I have been struggling more the last few days; getting winded with pretty much any exertion. I have a nebulized medication (Cayston) that I do for 4 weeks, then take a break for 4 weeks, then back on for 4 weeks, etc. and I'm currently on the 4 weeks "off" cycle and I notice that I breathe better during the "on" months, so maybe that's part of the shortness of breath. Hopefully things will improve in the next few days.
There is not much else to update. Let's hope and pray that samples #2 and #3 will come out with no mycobacterium growth!!
As always, thank you for the thoughts and prayers and please keep them coming!!
Hugs,
Lynda
Sunday, February 3, 2013
Wednesday, January 16, 2013
results
I pecked out an entry on my Kindle last night, but it wouldn't post so I'll make another short one.
My first culture grew out mycobacterium abscesses-- not good! (that's not the clinical way to spell M.A. but I don't know how to override spell check) The second sample they finally cancelled as "contaminated", So I had to give #2 again yesterday and then Will give another sample (#3) in 2 weeks in Wichita. If #2 or #3 show M.A. then we have to treat first, transplant second and treatment is not an easy road, not to mention it takes months to treat.
My BIG prayer request is that both #2 and #3 will show no M.A.!!! There must be chances that these samples show false positives as they like to have 3 to prove or disprove a diagnosis.
So THANK YOU for your prayers and forgive any typos--I still need to learn my way around this Kindle (which was a precious gift from 2 special girls I might add!)
My first culture grew out mycobacterium abscesses-- not good! (that's not the clinical way to spell M.A. but I don't know how to override spell check) The second sample they finally cancelled as "contaminated", So I had to give #2 again yesterday and then Will give another sample (#3) in 2 weeks in Wichita. If #2 or #3 show M.A. then we have to treat first, transplant second and treatment is not an easy road, not to mention it takes months to treat.
My BIG prayer request is that both #2 and #3 will show no M.A.!!! There must be chances that these samples show false positives as they like to have 3 to prove or disprove a diagnosis.
So THANK YOU for your prayers and forgive any typos--I still need to learn my way around this Kindle (which was a precious gift from 2 special girls I might add!)
Sunday, January 13, 2013
St. Louis again
Tomorrow Marsha and I will be heading to St. Louis to give another sputum sample, do a pulmonary function test and a 6 minute walk. The 6 minute walk measures how far you can walk in 6 minutes, how much oxygen you require and I think they also check your endurance as well.
Of course I will also consult with the doctor and see what the plan is in light of this new diagnosis of mycobacterium. I really hope the doctors will be willing to move forward with a transplant, no matter what the test results reflect. I have to always remember that it's all in God's hands...
I would ask for your prayers for safe travels, for good test results, that the doctors will see me as a good risk for transplant (assuming there is some risk involved), for Garry and Dakota while I'm gone, and for peace for me.
I will give an update in the next few days and thank you for the thoughts and prayers!
Of course I will also consult with the doctor and see what the plan is in light of this new diagnosis of mycobacterium. I really hope the doctors will be willing to move forward with a transplant, no matter what the test results reflect. I have to always remember that it's all in God's hands...
I would ask for your prayers for safe travels, for good test results, that the doctors will see me as a good risk for transplant (assuming there is some risk involved), for Garry and Dakota while I'm gone, and for peace for me.
I will give an update in the next few days and thank you for the thoughts and prayers!
Monday, January 7, 2013
*sigh*
I heard back from my lung transplant coordinator late last week. This won't mean much to many of you, but the first culture (December 10) grew something in the mycobacterium family. Somehow they knew right away that it wasn't non-tuberculosis myco or myco avium, and this is a good thing from what I understand, as these are some of the myco's you want to avoid. Now, the culture still needs to continue to grow out until the type of mycobacterium is identified. From my understanding, this can take up to 8 weeks.
And I think this is good news, but the second sample I gave (December 12?) has not turned up anything in the myco family at all so far, although it is still processing...
I already had a doctor's appointment scheduled for January 15 and they want me to keep this appointment to give another sample for testing. Then IT will have to take weeks to grow out! So, now, it looks like March is the earliest I would be listed (or at least that's how I see it).
Not to drag this out, but in 2000 I cultured myco gordonae and my doctor had me repeat a culture right away because he said this particular type of myco can actually show up when the sample is contaminated, either by me at collection time or by the lab. The subsequent samples did not show anything (nor has it shown up since, to my knowledge), so I forgot all about this until this recent myco showed up. Maybe the same thing will happen here--wouldn't that be a blessing?!
That's the update I have for now. As always, thanks for the prayers and have a great week!
~Lynda
And I think this is good news, but the second sample I gave (December 12?) has not turned up anything in the myco family at all so far, although it is still processing...
I already had a doctor's appointment scheduled for January 15 and they want me to keep this appointment to give another sample for testing. Then IT will have to take weeks to grow out! So, now, it looks like March is the earliest I would be listed (or at least that's how I see it).
Not to drag this out, but in 2000 I cultured myco gordonae and my doctor had me repeat a culture right away because he said this particular type of myco can actually show up when the sample is contaminated, either by me at collection time or by the lab. The subsequent samples did not show anything (nor has it shown up since, to my knowledge), so I forgot all about this until this recent myco showed up. Maybe the same thing will happen here--wouldn't that be a blessing?!
That's the update I have for now. As always, thanks for the prayers and have a great week!
~Lynda
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