Friday, September 15, 2017


I have reached a new level of tired this last month. I'm EXHAUSTED. Today my Fitbit is registering an all time high for resting heart rate... 98 beats per minute. On 4.5 liters of O2. And that drains you. When I'm making coffee or having a conversation my heart rate is 120. When I'm walking at a normal-ish pace with my O2 on 5 litres it's around 150. Right now blogging is pushing it to 109 bpm (and I haven't moved for about 20 mins). I have also stopped drinking coffee now as it's not worth the elevated heart rate that follows.

I don't feel like doing stuff anymore because the thought of it makes me tired. So my enthusiasm level for almost anything is zero. When I drop something on the floor it's easier to pick it up with my toes than to bend down. There are a few little "energy saving" tricks like these. Sometimes I go two days without a bath or shower because I'd rather spend the energy on something else. I've only been washing my hair about once a week. Priorities. And lack of energy.

I saw my Dr yesterday. Had bloods done the previous day. sometimes a high heart rate indicates infection, but my CRP is 10. (less than 5 is normal, but 10 isn't bad). All bloods are fine. Sputum hasn't shown anything yet, even though the stuff I cough up is very gross. He scanned my heart and it's normal, just beating very fast. blood pressure also high. So he changed my blood pressure medication to a new one, which will hopefully reduce my heart rate as well. I've been on a blood pressure pill since transplant, as one of the side effects of one of the anti-rejection medications is high BP. So let's hope the new one helps... if not, I will try both together.

Being this tired however doesn't mean I can just chill on the couch the whole day. I need to use my muscles, I need to stay as active as possible. I drag myself through various chores and activities (read - buy food and put petrol in my car, or visit someone, or go to the pharmacy) and live for that moment where I can actually relax in front of the TV. My beautiful nephew Adriaan is medicine for the soul... he makes me forget all this crap and makes me smile. Keeping busy with Love Life; Gift Life keeps my mind busy and inspires me. Keeping "busy" in general makes the days go by quicker. And every day that's over is one day closer to a new beginning.

I know you shouldn't wish your life away but I'm tired of this chapter. I never thought it would carry on this long. I want the next chapter to start so badly I cannot even put it in words. I want to have energy and enthusiasm for life again. I don't want to feel this anxious anymore. I want to be able to breathe again.


Lapc Salinas said...

Alice, I am so sorry that you are suffering a lot right now. I assume the "new chapter" means another set of lungs? I pray that opportunity will come soon. Your spirit sounds broken, and I know that is not you! Sending prayers and love to you.

Alice said...

Thanks so much Shelly. Yes you're right on all accounts!

Stan said...

Dearest Alice

My thoughts are with you as you try to make sense of your present reality. Even though you feel down it is clear that you still have hope and hope opens up possibilities. We, at SATSA, will keep hoping and praying for and with you. We miss your presence and look forward to the time when you can take your rightful place as a member, administrator and athlete. it is our hope that tiredness will be replaced by boundless energy in due time. You are loved by your transplant family.

Alice said...

Thank you SO MUCH Stan. I miss my transplant sport family as well! And I cannot wait to compete again xxx

Ellen said...

Oh gosh, your exhaustion really comes through in your words. Being consumed with illness day in and day out is just miserable. I hope you get the call very soon and get back to living the vibrant life you were enjoying a few years ago. Xoxo