I have waited a while to let all of you know what has been going on since my last article.
I was given Warfarin to take until Eliquis can get approved. 6 weeks later and I finally got the Tyvaso the Dr. requested. Still trying to get the Eliquis approved. The Warfarin has a lot of side effects with it. Of course, I am experiencing a lot of them.
Nothing makes me happier(not) than having to go get labs once a week for 1 vial of blood. My INR (the level of something in my blood that has to do with clotting) has been either too high or too low. 6 weeks on this medication and we still can’t find the right combination of doseage to get it “in the sweet spot” or therapuetic level.
Then I found out the Tyvaso’s cost is astronimical. I am okay this year. But next year might be another whole issue. I have to believe God will have something different in place to handle this or the transplant done.
Additionally, a special nurse has to come out to train me to take this medication. It has two sets of everything. I don’t even know where I am going to keep the set-up, medication and devices that are required. On top of all that, I have to lug this equipment to work because the medication is to be taken every 4-5 hours. Well, that is at least once during the work time or even twice.
I might be overthinking this. If the medication does what it is supposed to do, then the anxiety about lugging it around will not be an issue.
Back to the next reality. I had a great talk with my doctor yesterday. I called her since my lab results were in. But, I wanted to let her know that I was feeling worse again (similar symptoms to when I went in the hospital). {I had briefly gotten a bit better. Going down or stairs seemed easier. Getting to the car seemed easier. I had more energy. I didn’t desaturate as fast.} The Warfarin is causing more petechiae (red dots on skin). Additionally, I am desaturating fast again and taking longer to return to normal oxygen rate. The restless legs at night is preventing good sleep. My legs are swelling during the day and I had a terrible pain in my left leg the other day without any injury. Bottom line, she thinks I am throwing off more clots (pain in leg) and need a diuretic along with an ultrasound of my veins in my legs. More tests! It is for my own good though.
Now, I am having a problem getting my medications from the local pharmacy. I understand that all these winter storms are causing disruptions, but never have I had to wait more than 48 hours for a script. I am on 6 days now for one that was supposed to come in Tuesday. I was able to beg for a partial release. I am down to 1 pill. (Pharmacy wouldn’t let me fill it at 2 weeks.☹)
Then comes the family issues. Even though I am home all the time, I wish I wasn’t. Sometimes the negativity of it all gets to me. I am able to escape to a relative’s house on the weekend. They actually bought an oxygen concentrator just for me to spend the weekends with them. With me being home, there are expectations that I can still cook, clean and do normal things. Crap!! It takes me 30 minutes to just get dressed in the morning and they want me to stand and cook a full meal! I don’t think so. I have asked a family member that is in the house to help with the basics, that sometimes works.
I just don’t know. I might have to hire help. But, then I run into my husband’s social anxiety issue of having strangers in the house helping.
Doing simple things have become hard. Walking to the kitchen to get a glass of tea, going to the bathroom, taking a bath or shower, getting dressed, pulling receipts for filing and sometimes even eating is difficult. These are just a few things I can think of. Sometimes it is your family that don’t really understand what is going on. On the outside, I just look like I lost a bunch of weight. But on the inside, I am falling apart.
I give it all to God. I have one more day before I return to my work schedule. During this time, I will have at least a few days to work with the new medication. I am really asking God for each breath, each minute of every day. I have no other way to make it. I am struggling not to laugh, that takes away my oxygen. I am struggling not to cry, that takes away my oxygen. I am struggling not to get mad, that takes away my oxygen. It is really hard to stay even keeled. I lost my cool the other day and started yelling at someone, next thing you know I was struggling to breath, my hands and feet turned purple, and I lost my voice. So not worth it.
So, unto God I give it all. May He comfort me and keep me calm.