A Day in the Life

Hi everyone! It's 2:47 in the morning and I'm wide awake! Usually I will fall asleep around 11 or midnight, wake up around 2, make myself go back to bed, but then I am up for the day around 4 or 5 at the latest. There have been very few nights since my transplant that I have gotten more than about 4 hours of sleep! But tonight, I haven't even gone to bed yet at all - I just can't sleep! I'm going to be tired tomorrow! This dang prednisone - I tell ya. It does a number on me.

So I figured, I can't sleep...I might as well make another blog post! I thought it might be interesting to see all I have to do in a day now that I am recovering. I attached pictures so that you all could see my giant pill box and all the medications I am on now. I currently take 25 pills every morning and 16 pills every night, plus several insulin shots throughout the day to regulate my blood sugar, and I have to put IV antibiotics into my central line 3 times per day.

Here is a picture of all of my medications that I take. Every week, I load up the pill box with everything I need to take that week. Changes are still constant, because I am going to clinic twice a week and still having weekly biopsies where they check all of the levels in my blood and make changes accordingly. So, we have our handy paper that tells me exactly how many of each pill to put in each day.

All of my current pills, plus my insulin and my glucose meter! Can't leave home without that.

 

Also, since my transplant I have had a central line in my chest. I have a love/hate relationship with the port, because it causes me a lot of pain and feels like it is always pulling, but at the same time it has saved me from SO many pokes. As most of you know, I have a severe needle phobia and get extremely anxious every time I have to have a blood draw or IV or anything. You'd think I'd be used to it by now, but that's not the case. It stems from the fact that I have horrible veins, so they're never able to find one that works and I end up getting 3 or 4 pokes when I should have only had one. That's the entire reason I have the central line, is because my arterial line and all of my peripheral IV's went bad while I was in the hospital. They just don't last in me. Through the central line, I have to give IV antibiotics and flush it every 8 hours. That has been every day since the transplant. So, by 7 in the morning I'm up, I have to weigh myself, take my temperature, blood pressure, and pulse

 and chart it daily, test my blood sugar, take my morning dose of insulin, take my 25 pills, eat breakfast, and do the antibiotics through the IV. Needless to say, every morning is a process! Curtis is actually the one who did my antibiotics every day, and almost every time. He is so great to help and was always up to do it before he left for work and stayed up to do it at 11 at night as well. I am so lucky to have him.

Here's my blood pressure machine, thermometer, and chart that I have to keep track of everything on and then take to all of my appointments.

And last, here is what I put in my line every day, three times a day. A saline flush, the antibiotic, another saline flush, and then heparin! The line is actually scheduled to come out tomorrow, because I've done the last dose of the antibiotics now. Like I said before, it's a love/hate relationship, so I don't know how I'm feeling about it  coming out! I want it out, but then again, I'm still needing labs and medications so often that I don't know how they are going to find veins as many times as they need to. I really don't have very many options at all, and I bruise terribly. I'm pretty sure in the next couple weeks, my arms will go from skin color to black and blue!

 

I don't have an exact typical day, but after I do the morning routine, I still have clinic usually on Mondays, I've now started cardiac rehab three times per week, and then biopsies on Fridays. So I am still at the hospital for appointments at least 4 days per week, if not every day. When I'm home, I've  been crafting like crazy, making thank you cards and gifts, and trying to do what I can around the house. I have so much energy and feel like I can just go nonstop - but know I need to be careful not to over do it. I have to be extremely careful outside of home and avoid crowds for three months since the transplant date. I'm not allowed to be alone for six weeks since the transplant date, so we've either had people in town or local friends and family each take a day to be my personal babysitter, chauffeur, chef, and maid (Ha!). I am not able to drive yet or use my arms much at all. I can only lift up to 5 pounds and am not cleared to raise my elbows above my shoulders. They say usually around the six week mark is when they lift the restriction of not being alone and give you clearance to start using your arms and gaining back your upper body strength. It's crazy how many things you take for granted - such simple things - that you do with your arms. You don't realize until you suddenly can't! We have the sweetest neighbor, who has been coming over almost every day to braid my hair and get it out of my face after I shower. Even that - I can't wash or do my hair on my own because of not being able to raise my arms.

 

The days are so full that before I know it, Curtis is getting home from work, then we cook dinner and spend some time together and it's time for bed! Only, I don't go to bed. Curt does, and I do things like this...write way too long of blog posts in the middle of the night. ;) It really does amaze me the amount of energy I have, though. To think that I'm usually up by 4 and I don't stop until 11 or midnight each day; I am surprised every night that I'm still going! Props to anyone who has gotten through this whole thing - I always tell myself I will make it short and sweet and that never happens. I just have so much to say!