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Staying strong and facing an uncertain /certain future
Two weeks ago my husband and I met with his nephrologist. He has been in kidney failure for several years but nothing changed too much for awhile. At this visit his GFR was 17 and creatine was 3.4. Last year she had us go to an informational training with a nurse that covered dialysis and transplant. At this appointment she told him he was not a good candidate for a transplant because he has a pacemaker and he is 74. Also she said the numbers are not as important as his symptoms. Currently he is very fatigued and sleeps or naps most of the time. I volunteered to be a donor and so the doctor referred him to the transplant team.
I found out that at this transplant center they do not accept donors over 70 years old. They do at other places though, but he doesn’t want to go anywhere else.
To try and shorten this up, since last week, I have been crying over anything-I mean anything. Yesterday I went to the local store for broasted chicken and they were out. I started crying and couldn’t stop. Crying when I unloaded the dishwasher because he usually does that and he was too tired. Crying if I even think of any kind of chore or problem I need to do.
Last year my father died, my brother-in-law died, my uncle died, a good college friend died, my sister-in-law died. I was injured and had shoulder surgery.
It is all just so much. I am a strong person, but I can’t seem to get control of myself right now.
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He’s in great hands at Mayo!! You too! ☺️
I enjoyed your little story about the ride in desert and pulling the ‘c’ card! LOL. My husband and I have some of those stories too that can only be appreciated if you’re ‘walking that walk’… Gallows humor or whatever it’s called. Keeping a sense of humor is vital through out treatment, I swear.
I hate to break it to your husband but he probably will ‘feel like crap’ for a couple days here and there. It’s usually the fatigue and malaise…especially when he’s so physically fit otherwise. He’s not used to feeling ‘off’ so when/if it happens it feels much more pronounced. That’s what was tough for me. Not 3 weeks before I was diagnosed with AML, I’d still been walking 10 miles a day! Then boom…within 3 weeks I was on hanging on by a toenail! The first 5 weeks I was in the hospital getting stable. But then every 28 days I went in for another week of chemo. By the time I was ready for another round, each time I was back to feeling pretty good. I have pictures of me with my chemo IV bag and cart, pushing it around my unit 4 miles a day! 8 rounds around the bed tower was 1 mile. I’d do that 4 times a day! My doctors and nurses were adamant that my positive behavior with walking and attitude helped me recover faster. So if your husband can keep up some effort during the day, that will really be beneficial for him!
And, in your defense…keep nagging. Staying germ free is super important right now. Masking if you’re out in the UTV too…fungal infections can be deadly.
Sending an air hug to both of you! ☺️
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5 ReactionsHi Lori,
You were right, a lot of my fears, thankfully, didn’t happen. Val tolerated the Rituxan and bendustamine very well! Back tomorrow for another infusion of bendustamine and then a month off. The regimen is a little different than what we thought, but, it’s still two days of treatment, once a month. We are both pooped. Off to bed❤️❤️
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3 ReactionsTwo days of treatment behind us! Val is feeling quite good. He is a big fan of the pre-Med dexamethasone. His knees and general body aches have gone away😊
Lori, I’m hoping you can answer my question. I understand that right after chemoimmunotherapy Val would be in nadir. How much precaution needs to be taken to prevent infections of any sort, other than the usual things we would do and have been instructed to do. Is it safe for him to go to the grocery store masked and wipes in hand? Is the danger time only during nadir or at all times during his treatment? Would he be “safe” to visit a friend or too, masked, outside? I just haven’t been able to figure out just how at risk he is. I understand anything is possible, and so much is out of our control, but just want to do the best we can.
Thank you for being here❤️
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2 ReactionsHi @valandsheri! That’s all good news! I am going to burst your bubble a little bit though. Your husband is riding high on the dexy right now so he’ll feel pretty well. But don’t be surprised if he begins feeling fatigued as the chemo starts doing its job.
Nadir, or neutorpenia is another name for it, will take place between 7 and 14 days. At the time of nadir, the lowest point where WBC are greatly diminished, he may feel physically weak too. That’s normal! But he will also be at his most vulnerable to infections. In terms of 1-10 on a risk level, he will be at an 8 or 9 during that time.
Once his neutrophils increase again then he’ll start feeling better and more like being active. Visiting with limited friends may be ok. Just mask up! And no hugging…it’s not forever. 🙂
Masking with an N-95 or KN-95 anytime he is with people. Outside too because of the risk of fungal infections. I believe you’re in Arizona and he has to be mindful of Valley Fever which is a fungal infection prevelent in that area.
It’s a good idea to take his temperature at least 2 times daily and report anything over 100.2. It can be a sign of a neutropenic fever and he will need to be on antibiotics as a precaution. Just keep an eye on it!
Here are some basic protocols for avoiding illness during neutorpenia:
Wash hands frequently with soap and water, or use an alcohol-based hand sanitizer.
Avoid people who are sick or crowds where you’re likely to come into contact with a sick person.
Avoid injuries like scrapes, tears or cuts and care for wounds immediately if your skin is damaged.
Prevent the spread of germs by washing fruits and vegetables, keeping meats away from other foods, preparing meals in a clean kitchen and cooking foods to the proper temperature.
Avoid eating at buffets. No coldcuts from delis. All meats should register at least 160 degrees to kill bacteria.
Don’t share utensils, cups, food or drinks with others.
Don’t share towels, razors or toothbrushes with others.
Wear gloves and masks if you’re gardening or working in the yard.
Avoid picking up pet waste or changing a newborn’s diaper (use gloves and wash your hands afterward if you can’t avoid it).
Avoid lakes, ponds, rivers and hot tubs.
A couple of good websites for more information.
https://www.healthline.com/health/neutropenic-precautions#food-safetyhttps://www.verywellhealth.com/nadir-and-chemotherapy-513861
Husbands don’t like this part, but now’s the time when you have full permission to be watching him like a hawk! Prodding, nagging, coaxing…whatever it takes to keep him safe. ☺️
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5 ReactionsHi, I am now the Queen of Temperature Taking. Thank you for your reply - again, so grateful you are here and a Mentor. Val had a good day. Pushing it more than I'd like. No nausea. YAY!
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2 ReactionsHi Sheri, Queen of Temperature Taking! Love it!!
And thank you for your kind words. I’m grateful that I’m still here too and can be a mentor. 🙃 There’s nothing quite like the gift of life!
Val is a trooper and he is going to ace this. Your job is to be his wingwoman. I know it’s hard to hold back because you love this tough guy and want only the best for him. But it’s ok to let him decide how much he feels like pushing it. All you can do is remind him to ‘listen to his body’ in case he needs a nudge. I can tell you from experience as a former cancer patient, “pushing it” is really the sprit of endurance in action!
Air hugs to both of you! Keep me posted…
Spirits up and temperature down! LOL.
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3 ReactionsAnd a big Air Hug right back to you!
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1 ReactionFor us it is 62 years, and he is been showing dementia issues more and more, as he is going through change i have learned to back away from plans or ideas, but had to go through changes, even in my denial and his. I have let people know not to plan visits as the stress becomes an issue. But still want to encourage him to do things for himself and not just take over everything. Never know what mood or reaction will follow, one day at a time, one hour at a time. Right, sometimes pushed, sometimes pulled. Thank you.
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5 ReactionsHi, just checking in…How are things going for both of you?
Hi Lori! Thank you for checking on us. Val wants you to know that he is in a bad mood because he can’t eat raw meat or go to the grocery and that’s just the start of his list, he says! Actually, he is doing quite well. His sense of humor makes me laugh a lot! He does get tired, and has been “laying low” right now. As my friend says “avoiding cooties”. Thank you for explaining nadir. New word for us. Val said “so it kicks in 7-10 days out, possibly whooped for 5-7 days, then I start feeling better just in time for my next treatment?” Yup. He still wants to work in his shop, which is a great project for him - he likes to stay busy and my sister in law suggested arm covers for protection because he’s always banging or scraping himself. You would have thought we were suggesting he shave his life- long mustache off. I’m ordering them anyway. He says he’ll think about it. 🤣🤣 A lot of negotiating goes on now. I’m doing much better. I still find it all scary, but, feeling a bit more normalcy settling in as we navigate and get more comfortable with this way of life, for now. My sense of dread has taken a back seat. Thanks again for checking on us - it is very much appreciated. It looks like you are very, very busy mentoring all of us! You are awesome!! ❤️❤️
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