2008 'A Bump in the Health Road' ....hopefully

Well 2008 was definately my roughest year since diagnosis. Not roughest ever, having had problems and no reason to which to attribute them is far worse than at knowing what monster you are dealing with and just having a hard time. I reserve the right to change that as the problems I am dealing with and the monster evolve.


On this last day of 2008 I am hopeful that 2008 was just a bump in the health road. We have noted all the problems I had and should a problem that seems inflammatory in nature occur again we will have an action plan. I am really really ready for some smooth sailing, unfortunately Feb/Mar are usually my rough months so I dont think that will happen but here is to hoping. I am going to do everything in my power to try and stay healthy and we will see where that gets us.





The year went something like this:


Feb-The year started with a really mild cold courtesy of a visit to a relative's house with small children. Of course they didnt realize the child was sick, or didnt feel it relevant to mention until we had driven 5 hours to stay the weekend. As is so often the case a mild cold 'not worth mentioning' for someone else stayed with me for months and the after effects ended somewhere around September.



Feb-doc visit #1 FEV best ever even with cold most likely as a result of my fitness efforts. No treatments started.



feb-doc visit #2 PFT's down from prior weeks visit, more run down feeling (sick about 5 weeks by now). Doc said numbers were still looking good so option for orals or IV's I went with orals dumb dumb move.



Mar-After 2 weeks cipro not feeling better. ,



Mar- FEV1 down about 15% from 1st visit. Started IV's. A few days into TOBI/Ceftaz I caught stomach flu followed promptly by a bad head cold.



Mar-week2-Not responding to IV's switched from ceftaz to merropenem and added levaquin.



April-week 3 Will ever do merropenem without IV zofran again but it 'worked'. FEV1 of 105.3 but I dont feel 'right'. Doc's don't believe me and deny my request for steroids.



April-one week post IV's. Go back see doc #2 revisit my concern. My PFT's still look good but are showing 20% variability anywhere from 5 to 25% below prior week. Upon review the prior weeks numbers also showed high degree variability (unusual for me)



April: The week after the last visit I continue to feel soemthing is not 'right'. Friday I though I had caught a cold but I think in hindsight it was CF related not feeling good. I continue to have the shoulder and back pain I described in clinic but it increased then hemoptysis started. I had not had hemoptyis since Mar2006.

April:doctor #1 decides we should get an AFB culture to check for MAC etc and treat with a weeks worth of zithromax to see if things resolve while waiting the initial smear results.

May 7: I returned to the clinic with an 'I told you so' attitude. I did not feel my problem was infection related but the doctor wanted to do more IV abx and I wanted to 'just get better' so I thought well perhaps the first round didn't get everything and they were going ot put me on a strong dose of zosyn which I had never had so I was hopeful it would work.

May8-9: During this time I got an oral glucose tolerance test, some other assorted bloodwork to check on a few things, and started my IV's. I took the full time off of work and promised my dr that if after the first week I hadnt rebounded I would be admitted to rest as that is what he was concerned was not allowing me to get better.

May: Finished the IV's and had good PFT's, still didnt feel everything was resolved. Numbers looked good so I was sent on my way.

The next week I got severe pleurisy to the point where I couldn't move or breathe in but it would only last a maximum of 30 minutes. I was told to start high dose ibuprofen therapy. While a bit better after a week or so I was still not normal and still had alot of pleural pain.

I emailed clinic nurse and described to her my concerns over this chain of events and said that I was concerned but wasnt sure if I should come in or what given that the Dr basically didnt seem to think anything was going on and asked what I should do. At this point the dr's said I needed to see someone else. Despite the fact that we had talked about what we could do if I continued to have problems I guess they decided I was too much hassle and gave up. Oddly enough I had been considering moving clinics since the end of 2007 because I felt my clinic was not aggressive enough. I love the clinic and the nursing staff but not so much the doctors.


It was off to a larger clinic for me, one that had an adult specialized clinic but was 70+miles from my house instead of just driving 10 minutes from my work so a large inconvenience but it proved to be worth it.


While I was waiting for the new clinic appointment I continued with as high dose ibuprofen therapy as I dared given the previous hemoptysis. I did not go on antibiotics because I did not feel I was having an infection related issue.

June(end June)-I saw the new doctor. Although not as big a fan of the clinic and how some things are set up I really liked the doctor. He was very thorough and explained everything. I was sent off to get a new sputum culture, ALOT of bloodwork--things I have never heard of before (all of which were explained to me), as well as a high resolution CT with contrast.

New clinic visit#2. We reviewed results and further discussed the possibility that my problem was inflammation based and not infection based. Some of my bloodwork seemed to indicate that the ABPA was previously diagnosed correctly but nothing was a red flag showing that I necessarily had anything going on right then. Dr wanted to ensure that I did not have anything new growing deep in my lungs that putting me on steroid therapy would allow to flourish so we decided on a bronch.

August11-I got my bronch. Afterward I had ALOT of pain, fever, and the shortness of breath lasted for days.

Sep New clinic visit#3-bronch results show no sputum production, no more so than any person without CF. He found it very strange and other than that nothing was notable, some areas looked a bit inflammed but again less than they would expect to see in a CF'er who wasnt having problems. (Sometime during when the pain started I seemed to stop producing sputum, this was initialy part of the reason I was so concerned because that is just not normal for me. Had I been feeling great and having no sputum I would have been thrilled!)

We decided to do a 2 week dose steroids with 1st week being at 40mg followed by a week long taper. After 6 days I started to feel things 'open up' I also started to have mucous again. I called and requested to stay at 40mg for a second week as I was concerned whatever needed to be done had just started to happen. So we did 2 weeks at 40mg followed by a 3rd week taper.

After steroids things started to level off and improve. I saw the doctor 2 weeks after finishing steroids and I felt much much better. I was disapointed to see my PFT's were still only 95% which is low for me but he felt that things would continue to stabilize and that I had not necesarily lost all that.

I felt like my lungs were all better but it had been a long year already and I felt just really worn down and exhausted for september.

October- I finally started feeling better around mid/end of October.

November-After about two weeks of feeling pretty good I caught a really nasty cold. This is not my norm as I can usually shake a cold off and I dont get truly sick until feb/mar timeframe normally. This turn of events sent me into a mental tailspin of worrying about whether this was my new normal. After a week I wasnt sure the ocld was leaving and requested cipro, after two weeks I felt mostly better but requested a third week and a follow up appointment, during this third week I had a few days where I was horrible but then I shaped up and started feeling pretty decent. Two days after ending the cipro I started doing great, I hadnt felt that good in a long time!

Dec 14 Follow Up Appointment: I was feeling really good but decided to keep the follow up appointment out of due diligence, because I was going ot talk to them about doing tiger-2, and if my lungs were doing good I wanted to see what my baseline was. My best numbers ever FEV1 103% and FEV25-75 102% I was super excited.