Lots has been going on since my last transplant post. Everyday we get up, go to clinic, get vitals and blood tests. I have had to get platelets every day until yesterday. On Sunday I had to have a unit of red blood, a couple of times I've had to have potassium and both yesterday and today I had to have magnesium through IV. A side effect of one of the anti-rejection drugs is high blood pressure. My blood pressure went up from it's normal 115/70 to 145/95! Yikes. Now they've got me on blood pressure medicine and it's getting back closer to my normal.
There are other side effects if the level of the anti-rejection drug gets too high: headache, trembling, nausea, dizziness, weakness, and other such things. We're still adjusting the dose of that to get it to the right level. The combination of too much of the anti-rejection med and not enough magnesium got me to where I was barely able to walk from the parking garage to the clinic today. And at that I still had to stop and rest on the way inside. I couldn't even carry my camera, which was a bit scary. I was amazed at how much better I felt after getting magnesium today. Almost like a switch flipped. Still not up to normal activity, but much better than yesterday and this morning. Yesterday I had to take Ativan and oxycodone, but did not need those for side effects today.
Today was weekly Picc line bandage change day. The nurse noticed my line looked like it was out too much. And indeed it was - over 2" from when it was inserted. This is not good. That means the end of my line was not where it was supposed to be. Instead of in the heart it was out in the vein. Boo hiss. Sarah, my CRNP today, consulted with the transplant doc and the Picc team. They decided I needed a new Picc line.
In the meanwhile I have had blood tests. This is significant. Day before yesterday my platelets were less than 10 so I had a transfusion. Yesterday my platelets were 16. We were excited because that means my platelets held. That hasn't been happening. So I didn't get a transfusion yesterday. Today my platelets were 19. NINETEEN. They went up. Without a transfusion. And my white count (not neutrophils, but total count) went up from 0.0 to 0.1 Reds have dropped some. But for my platelets to go up like that, and to get any white count, it means that my donor's cells are beginning to find their home and make new blood cells for me. We are so thrilled! Not engrafted yet, but it's a baby step forward. And especially good news after I've felt so crummy, sick and weak.
Originally the plan was for me to wait until tomorrow to get magnesium and possibly platelets. However, once the Picc line switch was necessary I chose to go ahead and get platelets today before the procedure. And as long as I had to wait for platelets, I got the magnesium, too.
So, since I had to get the new line we had to move back to the right arm which is where the first Picc line was. The first one was in the brachial vein and the new one is in the basillic vein. First they had to ultrasound my arm and see if my vein was good. It was. Here, instead of a radiologist, a team of nurses insert and remove Picc lines. It was much simpler here. Plus I took an Ativan and oxycodone before I went down to the radiology clinic. One nurse very quickly and competently put in my new line. They took me to X-ray to see if it was properly positioned. As it was in perfectly the right spot another nurse from the Picc team took out my old Picc line. Amazingly I didn't even realise she had pulled it out. I certainly didn't look, you know!
At that point, 2:00ish pm, we were free to go until tomorrow. We came home then and Mike fixed us some lunch.
And speaking of Mike and cooking, he has been doing an amazing job. We have jointly done a few meals: brioche French toast with sausage, Texas potatoes (baked potato topped with turkey chili, onions and cheese), Mezzi Rigatoni (which we actually made with gemelli), tuna gravy and roasted shrimp. The shrimp are planned for tomorrow's lunch so they got roasted and refrigerated today. Some of the things he has made way out of his comfort zone are: Greek Pizza, omelette with ham and cheese, biscuits, spanakopita turkey burgers, and a picnic to eat in the park. Yes, the park. A couple of days last week we went over to Centennial Park, either to walk or eat lunch. Our picnic consisted of several cheeses, dolmas, crackers, bottled water, and palmiers. It was a lovely meal and we sat at a table with a view of the Parthanon.
One thing I have learned is that if we must rely on Mike to literally put the food on the table on a long term basis, we will likely be eating out of cans and the freezer. Because he never does things that require skills such as chopping onions, it takes him a lot longer. And he does not like to cook. not at all. So our partnership has a good division of labour. I LOVE to cook.
Now it's evening and both of my arms are sore. The right one with the new line more than the left. Had to leave the hospital with a pressure bandage on my left arm and instructions to take it off after a couple of hours. The regular bandage needs to stay on for 24 hours. I may take a pain pill so I can sleep.
So all in all, I would say that today was a good day. Were he still with us, it would be my little brother, Frank's, 52nd birthday. What a wonderful day for my engraftment to start!
P.S. I still have my hair.
Merry Christmas!
18 hours ago
6 comments:
Dear, sweet lady, you have to endure so much during this process; and all the while with a positive attitude. I pray that God speeds this process for you and that you may again be back to living the life you love full of the activities you love to do at your home and at the farm.
Creamsicle
Fabulous news!!! I kept checking to see if you had any news to post about your counts~~~HOORAY!!! So sorry to hear about your other side effects, but you're really doing great considering your bone marrow was completed obliterated! Keep up with your glass half full mentality~it will get you far!!!
Well dearest, we're going to focus on the good with the holding of the platelets and white cells...hooray for that! It's starting!
Aside from your bodily "oil change" every 50,000 seconds, it sound like you're making some great steps. I know it must feel like just one step in front of the other at times (and maybe that's a bit hard), but you are really making a case for will and attitude as healing mechanisms. Tell Mike the Contessas admire his pinch-hitting in the kitchen. Ya know, you can get those pre-cut frozen onion bits. (wink, wink) All the best,
MHB
I am delighted to hear that your platelets are surging. Your graft must be settling in to it's new home. Sorry to hear about you PICC troubles, you probably never stop worrying about infection with problems that crop up. Every day will see you feeling stronger Becky. I am thinking about you and sending you happy and positive thoughts.
I was so glad to see your post. Here's to many more good days and more picnics in the park!
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