Hi @caregiverx2. I know the stress level is high right now for both you and your husband. There are so many unknowns and everything is coming at you so quickly. I’m so sorry that the arrangements you made for help back home has fallen through! That’s really troubling for you. Are there any local church organizations, neighbors or volunteer services such as Kiwanis or such who would be able to organize a ‘help chain’ to rotate people to help out? I hope you find someone soon so that you can at least feel at peace for your home situation.
I’m also wondering about the Family and Medical Leave (FMLA) which allows up to 12 weeks to care for an immediate family member (i.e., spouse, child, or parent) with a serious health condition. That might help with your job situation! Here’s the website:
https://www.dol.gov/general/topic/benefits-leave/fmla
I can’t help with that, but I can help answer questions about the transplant. There is a chemo regimen before the transplant called Precondition. This protocol cleanses the bone marrow to allow for the new stem cells to set up housekeeping in a clean, healthy environment.
The day before chemo starts, your husband will most likely have a port surgically implanted. All of the infusions, many of the meds and blood draws will be through that port. It makes life a whole lot easier throughout the 100 days.
Basically for the infusion itself, the bag looks just like a blood transfusion bag. It’s connected to the port and infused into the blood stream.
There will be two nurses in the room. Your husband will not be alone! One nurse will give your husband a pretreatment of medication such as Tylenol and Benadryl or Solumedrol in case there are any reactions and check his vitals. The second nurse will be present to verify, with the first nurse, that the name/birth date on the bag of stem cells matches the information for your husband. They will be with him throughout the infusion. In my case, we just sat and talked for the half hour.
They’re not anticipating anything dire to happen. Any reaction they will be watching for are similar to any reaction that could happen with medications such as:
Full body flushing/facial flushing, itching, hives
Trouble breathing, shortness of breath, coughing, chest pain/tightness
Abdominal cramps, nausea/vomiting
Light headedness
The meds they give him beforehand help prevent any unexpected reactions.
After that, depending on the time of day he has the infusion, he may be able to return to your lodging that day or the next. He’ll return to the clinic daily for blood draws and any meds and infusions such magnesium.
I hope that gives you a little more reassurance about what to expect on Day 0. If you have any other questions, please don’t hesitate to ask. I’m here for you as well as members like @katgob, @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @tkidd51 and many others.
Are you at Mayo-Jacksonville? If I remember correctly, @tkidd51 had their transplant in Jacksonville. They may be able to offer you some first hand information about what to anticipate while there. ☺️
He will be in-patient for a week prior to day 0 and approximately 3 weeks post-transplant. Then he has to stay within 30 miles of the hospital until the end of November. We live 47-55 miles away (depending on the route taken). I am not concerned about lodging. We have that taken care of through the hotel and Hope Lodge that are near or on campus.
If we could go home after he is discharged, then care wouldn't worry me. We have friends that are local and can help. I am just trying to work out his 24-hour caregiver (me and others) plus taking care of the dog, three large fish tanks, and a koi pond. For his care, I am checking with agencies and also through Care.com. My experience with both of these has not been good. I used both when I took care of my sister who had ALS. Both were unreliable, frequently people were late, called in sick often, or agencies didn't have anyone to send.
My work has been fantastic, and I know they will continue to work with me with my remaining FMLA and vacation time. I have to keep working so that I maintain our health insurance and we have some income.
My anxiety is caused by trying to work out a schedule in my head for being with my husband, taking care of the dog, taking care of all of his fish tanks and pond, working, commuting through Jacksonville daily (the traffic is awful) and have care for my husband when I can't be there.
I know I am making more of it than it will be. I am just worried and scared. I appreciate everyone's support and reassurance; It does help.