I had a phone appointment with my local hematologist/mast cell doctor yesterday afternoon so I figured I would pop on here and write an update before I forget...
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| Your daily dose of cuteness...Ezra & Bella on Easter |
I told him about the daily headaches (pretty much one continual headache now) and all the symptoms going along with them and he thinks it very well could be that I'm starting to really feel symptoms of my anemia and iron deficiency seeing as how it has worsened a bit lately and he said that can cause the headache, ringing in the ears, exhaustion (I'm sleeping all night and the majority of the day now), etc. However, this issue is very complicated to treat for me because taking iron orally will come right out my stomach drain and putting it in my jejunal feeding tube (J tube) wouldn't really do any good because the majority of your iron is absorbed higher up in the intestines. That leaves IV iron or a blood transfusion for possible treatments. The IV iron is more common to cause allergic reactions even in patients that don't have allergy issues so that significantly drops the likelihood of that being an option. Which leaves a blood transfusion as the safest choice of treatment. As much as I absolutely hate the thought of getting someone else's blood (germophobe over here ;) ...and yes, I know it has been "cleaned"...but still!) I'm afraid it has become the inevitable. We are staying hunkered down with this coronavirus stuff going around because us mast cell patients are very high risk and in order to get a transfusion I would have to go to the infusion center because of the risks of rejection and reactions. SO, I am choosing the route of trying to possibly treat the headaches (compounded tylenol through my J tube - if the pharmacy can do that for me) and wait until things die down a bit and we're released from complete isolation. I may end up giving in early depending on if this worsens anymore. My doctor has left it up to me and if I get to where I can't push through anymore then I just have to let him know and he'll get things figured out. Right now I'm not at an urgent spot with the anemia, however, if it drops a little less than another full point, I will be at the point they normally automatically do transfusions. And just to inform you...I have had full testing done to make sure there is no internal bleeding and such and it is very clear that this anemia is strictly due to my iron deficiency which is caused by malnutrition/malabsorption.
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| I actually managed to wear day clothes (instead of PJs) for Easter ;) |
Now, on to happier news...
I'm back on 24hr tube feedings and doing well on them. My potassium has been holding very well lately so my doctor is letting me reduce my daily potassium infused saline infusions to 3 times a week. If my potassium continues to hold stable I might get to go off of them entirely in around 3 months! And I am super happy about that! When you're already hooked up to 3 lines at any given time, you're really happy to get rid of the 4th one that you're hooked up to for 4hrs a day! ;) Just pray Jane (my J tube) will continue to cooperate, full feeds will keep going well, and my potassium will stay stable!
Thank you so much for continuing to follow my journey and pray for me! I hope everyone is staying healthy!
Taking Life One Nap at a Time....
Allison
