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I've known for several months that my husband was improving. He could shower, shave, walk, etc. without getting out of breath. He has even been able to do a 2 mile walk around our neighborhood which involves some hills. However, I didn't want to publish anything until I had firm evidence before my eyes (and I do have certain amount of irrational fear about jinxing things when it comes to this illness).
Well, we went to the pulmonologist's today and the results of the CT scan show that my husband's lungs are not only stable but getting better. A year ago, I was happy that the CTs didn't show any more damage. Six months ago, I thought my husband's lungs had improved but it only showed up as borderline improvement. Now, the films are finally starting to show what I have been seeing with my own eyes. The pulmonologist admitted that he originally thought my husband's long term survival rate was not going to be very good. He said that he couldn't take any credit for my husband's improvement but that it was due to our perserverance in finding other treatments.
So, we're doing the happy dance here and will keep on hitting hard with the antibiotics.
P.S. For those wanting to know details:
Peripheral septal thickening especially at lung bases has improved.
Slight decrease in groundglass opacity at bilateral lung bases.
Fibrotic and cystic changes along periphery of bilateral lung bases is stable.
3 mm noncalcified lung nodule in right upper lob is stable.
Parisa,
This is wonderful news. You two have been through so much and I know this road has not always been clear nor easy for you. I'm also glad that he is truly doing better and you have the documentation to prove it. I know that still means a lot to me. This past summer, when Jess had the follow-up PFT and it came back perfect. Yes I had all the day to day evidence that Jess was dong fine, but that piece of paper with the pulmonologist's words “no evidence of systemic sclerosis” was wonderful.
Enjoy your walks together!
Cheryl
That is just wonderful news, Parisa, and I could not be happier for you both. I've said before the spouses (or parents) that put up with us all deserve medals.
We must all be superstitious about posting improvements. We gotta stop that!:)
Thanks Cheryl!
You have no idea how times I read your posts about your daughter's lungs to my husband and myself to keep our spirits up as this illness can be slow to turn around with the current protocols that we have. I'm so happy to add one more voice shouting in the wind that AP works!
Hi Parisa,
That is incredible news, especially for you hubby, being able to walk even the tiniest of hills is such an accomplishment, and only those with lungs diseases would now what that means (I have broncheictasis) and have been there also.
Great stuff, and keep the improvement going, so glad you posted, it gives me somes positivity about my lung condition and AP……………….Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Kim,
Truly you guys are the ones that deserve the medals. To wake up everday (that's if you were able to sleep) and face another day of unmentionable pain and limitations that make everday tasks seem herculean? I always knew my husband was a strong man but it used to bring tears to my eyes to see him struggle out of bed, somehow get dressed and drive to work! How did he do it? A strong wind would have knocked him over! And there were months when even he, despite his strong will, couldn't go to work and he would worry. He would worry that he hadn't purchased enough life insurance for us or that if he didn't die that he would suck us dry with his medical treatments and disability pay. He never gave up and the minute he could regain an inch, he would. No medals for me.
Wonderful news Parisa and thanks for sharing the results. Hope you both happy dance all weekend. Lynnie:D
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Parisa, I am doing the happy dance for you guys!!!!!!!:roll-laugh: Bless you both for all you've been through…you're both courageous souls, but you got through it together and that is just so moving. My hubby and I have had to be there for eachother over the years…first, his cancer, then my RA. We're old pros now, just as you both must be for one another. It doesn't get any easier, but the love gets you through.
Big hugs for you and your DH!
Peace, Maz
That's awesome news. I am so happy for both of you. It sounds like he is doing so well now. I'm sure it helps that he has such a wonderful support person in yourself helping him through this.
Isn't it just amazing how many diseases have bacteria at the root of them? This is wonderful news!
I'm guilty too of not sharing until I'm sure.
Congratulations!!! That is wonderful!! Thank you sooo much for sharing this. My drs are suspicious that I may have lung involvement and/ or PAH am having some testing done this week:shock:) so I am terrified and just starting treatment, I just got IVs with Dr S in Ida Grove and am awaiting my first supply of mino, reading stories like that of you and your husband are such an inspiration. I know how he must have felt there are somme days where I am so out fo breath that getting out of bed taking a shower or playing with my baby are enough to lead me to take a nap because I am so winded and tired. Keep up the progress I am so happy for you both he is so lucky to have such a wonderful wife who is so supportive and a smart researcher!!!
What terrific news to pass along! So many folks have some lung involvment and are worried that AP won't help them. Here again is another report of AP working. We are all proud of you two, and we wish you continuing good news. Thanks for sharing this wonderful and most encouraging post.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"
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