Bone marrow transplants for CMML

I was called this morning. The donor is ready for the 9th of April. I start the conditioning April 2nd. Now I go back and read slowly what you posted Lori.
I say my caregiver today and she knows it is 24hours a day, there were 6 more ladies that said they would help. If my friend Lil calls them, they will come. Thanking God today. My estranged brother posted on our sibling's chat page he essentially wrote that he prays I have the best outcome. I secretly pray he visits me there as he works on the hospital grounds. Time to get reading........

Good morning, @katgob! This is incredible news about caregivers stepping forward and their willingness to “circle the wagons” to make sure you can go through with this transplant! I just realized my hands were up to my heart while reading your news! It’s all so heartwarming. I really hope this closes the gap between your siblings!

And your donor too! Bless this person for helping a total stranger get a second chance at life! I remember how I felt when I got the call that my ‘one in 22 million’ signed the consent form! It’s overwhelming, isn’t it?

Wow, well, April 2nd is a big day! My guess is your journey will start a few days before that with pre-transplant testing and transplant education.
You have a lot going on now so the next couple of weeks will go quickly.
One thing on your long list of items to pack for an extended stay at the hosptial and friend’s homes, should be a small extension cord like the little white or brown ones sold in grocery stores … it comes in hand for your phone or tablet charger. ☺️

Read, make notes, gather your thoughts and don’t forget to exhale! ☺️ Any specific questions?

Lori,

I am out an about today. I will come back here as the video's i watched from COH sink in. I had a VAD device for 2 years where the nurses cleaned it, now i am watching a video of a CVAD line that i clean along with my caregiver.
This wed I have the EKG, CT, Bone marrow biopsy, echo, pulmonary function and labs. Friday is the stress test.
All as you know to make sure i am good and healthy enough to complete this process.

i received an email back from my transplant nurse. She answered a number of questions and that is good. My dr, decides of i need a caregiver the 1st 30 days, I say no. Really? I am in the hospital. Germs. I will have to scramble for this if so. Oddly, their literature and video go over the CVAD which i was bugged by. It is a catheter-based device and one i have to clean! The VAD is another device I had for nearly 2 years. I did not clean it. In the nurses email she said I am getting a Pic line. I have heard about those most times I received and infusion in the past. Nurses would ask which device i had. Call me lazy, but with a blood transplant I do not want to worry i may be sloppy in my cleaning or something else with the CVAD.
Today I go in for Labs, Bone marrow biopsy, CT scan, echo and electrocardiogram. Friday is my 4-hour stress test. The electro and the stress test i have never had. My CT is a chest one, so I likely do not have to drink the drink. YEA!
Looking for the fun bits, i will have 3 to 4 people in the room for the biopsy this morning, with my bum showing a quarter to all as they get to my bone marrow. Last time I had one in October I laughed when they asked me how i was doing for the umpteenth time. They could not recall the last time someone laughed. I just said it is manageable. To feel the needles for what they are doing, not waiting for any pain. Yesterday I had a cooler bag with me all day at work and after. One needs to do a urine test. I got two half gallon jugs. On my!!! I had one with mean really it is only 1/3 full. At work thankfully 1 out of 5 were in the office, so my parade to our restroom was easy. I have not done this test before.
Off i go to get ready to head out.

You made me laugh out loud with your comment about the biopsy this morning. Yep, 3-4 people in the room with your drawers dropped a bit…. But truly, they’ve ’seen it all’ and have done so many of these it’s just old hat to them. I’ve had some fun over the many times with having bone marrow biopsies that I’ve collected some amusing skivvies to wear during the procedure that have brought some laughs to the room.

I’m happy to hear many of your questions are being answered. My experience was a little different during transplant with the type of port system. I had a Hickman port in my chest. The dressings were maintained weekly by the nurses in the transplant unit. I did have 3 picc lines on different occasions. Again, they needed tending by the nurses to take care of the dressing. Heparin was flushed through the lines routinely to keep them open. Is that what you mean about cleaning?
You’re in the middle of ‘hell’ week as my acquaintances and I referred to that crazy week of testing! It’s like a marathon, isn’t it? 😅 Phew! I can’t imagine dealing with the 24 hour urine test at the office!! You’re a trooper!!
Good luck with your testing today! Keep me posted! ☺️