Tag Archives: journal

It’s my birthday!!

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Whoop Whoop!!!  I made it to 39!  When I was born the life expectancy was 12 years old. I have a little ways to get to the new life expectancy of 47.5 (I think that is what it is now, it keeps changing).  I got a great birthday present of getting off IVs yesterday.  It was a long 3 weeks of antibiotics.  I am feeling pretty much the same which I will take because I am not worse.  Of course I would like to be better but now since my lung function is low I don’t get much bump from antibiotics but I maintain.  I have a clinic appointment next week.  I’ll update after that appointment to let you all know what my lung functions look like and what the doc says.

Until next time…

Life update

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Hello all!  It’s been a little bit since I updated.  I have had a hard time with switching antidepressants BUT I’m finally starting to feel like myself again.  I still have some work to do but I’m getting there.  Like I said in the last post I kind of regretted stopping the Effexor, well I’m back on it.  The other meds just weren’t cutting it so I asked to be put back on the Effexor.  It’s been 4 weeks and I’m finally feeling decent.  I have lost weight from changing antidepressants.  My appetite hasn’t been the best but it’s getting better. Continue reading →

3 weeks of IVs complete

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I finished 3 weeks of IVs earlier this week.  I do feel better than I did BUT I’m still having coughing attacks.  I’m attributing it more to asthma though.  I was offered prednisone at clinic on Friday (yesterday) but I declined for the time being.  I’m going to hold off and see if treatments and such can help.  We all know how much I love prednisone, NOT!  My lung functions were the same at FEV1 .96L/34%.  My first two attempts were 33% and my last one was the 34%.  I will follow-up in 6 weeks. Continue reading →

IVs it is

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When I was at CF clinic on the 2nd, I asked for oral antibiotics hoping I wouldn’t need IVs.  Sometimes (not too often anymore) I can get by with orals instead of going straight to IVs.  With my line of drugs that don’t work I’m limited.  Well I had to call them back because my cough and wheeze were still hanging around.  I asked only for a short burst of prednisone hoping it would help.  You guessed it, I had to throw in the towel and ask for IVs because my cough was persistent and the amount I’m coughing up has increased.  I went for lung functions and they were down a little (FEV1 34%/.98L).  When compared to my last set of lung functions they are down 4%. Continue reading →

Change on the horizon…hopefully good

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I saw my psych doctor today to talk about my depression and anxiety.  My antidepressants aren’t helping anymore.  I’m on Effexor and have been for many years and it’s not working for me anymore.  We are going to wean me off the Effexor and starting Trintellix (a newer med).  It’s not going to be an easy time weaning off the Effexor because I have been on it so long.  I pray that it is an easy transition onto the new med.  I need a break through.  I deserve a win in this one. Continue reading →

CF is not my friend today

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We took a short road trip to Panama City, FL to see some good friends this past weekend. We were able to go to the beach on Saturday.  I realized my happy place, the beach, is hard for me to get to with all the walking.  I had to take breaks walking the boardwalk and then on the beach.  Once I got to our spot to sit I was ok just sitting and enjoying the sand and surf.  I went in the water and that wore me out as well.  Holding myself steady in the waves was hard and took my breath away.   With all that said the beach is still my happy place even though it is hard on me now.  I want to be able to travel and not have to worry about getting out of breath, coughing, breathing treatments, etc. Continue reading →

Spring cleaning of sorts…

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I went to see my CF doctor today on national doctor day…haha.  I was there for a sick visit not to wish him a happy day.  I have been coughing more, especially at night which sucks.  I wanted to be seen and get on something before it gets too bad especially with it being a holiday weekend.   Continue reading →

Quick clinic update

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I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading →

Transplant Talk: Sinking in

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Now that I am actually getting to the point of listing it is sinking in how sick I really am.  I am sleeping about 12-15 hours a day and even more if I take a nap.  You may say how is that possible or wonder why I am sleeping so much.  My body is very worn out just from working to breathe and then there is the coughing on top of that.  My body is sore from all the coughing I do. Continue reading →