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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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Good afternoon! I hope that you found your boots, socks, and warm jacket. Oh my. We lived in what we call "the high country" of Arizona for 25 years. Just outside of Flagstaff. Ugggh. We do not miss that snow and cold, cold, cold at all. We headed "down the hill" to a little lower elevation and the snow here is like child's play. Yippee! Summer's are warmer, but that's all good.
Well, Mr. Ray of Sunshine is still smiling, but he is pooped. As he explained it the day before yesterday - he is tired, weak, and depleted. Feeling better today. Still getting to his shop, just a little bit slower and for less time. I kept really good notes last month...well, partially. That's when Sunshine got annoyed at my temperature taking and I quit writing things down. That'll show him. Ha!! But, based on the notes that I did keep, he got tired a day earlier this month and I'm thinking that might be a trend? I was using the nadir formula for tiredness, etc. but he's in it a little sooner than advertised.
I wanted to get a little more specific on Val's blood work. It was all great because nobody mentioned otherwise, except for his chemo nurse. All values in his Extended Metabolic/Electrolyte panel were just right except for his BUN (this is what the chemo nurse mentioned) high is 24.0 and his was 24.5. The PA did not mention it. Val is also a type 11 diabetic, well controlled on metformin. His Estimated GFR is 57 and shows low, but has been that way for a number of years. Protein 5.9 (low is 6.3) He is back to drinking his protein drink. So strange - the kidneys get annoyed, the body needs protein, but I'm not sure the kidneys like the protein. His CBC was excellent except for his Lymphocytes at 0.55 (love is 0.95) and his Monocytes were above the .081 high value. Sooo.....because the PA said everything was fine and treatment commenced - I'm thinking it's ok.
Next round the first week of April. As Val says "just when he will start feeling good again......". You know the drill!
You're funny, extremely knowledgeable, and wise words of wisdom are always appreciated. I will wait with baited breath.....
Stay warm and stay out of the white, fluffy stuff!!!
Sheri
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3 ReactionsThe most difficult adjustment getting back into a winter climate was the trip to the grocery store! Hah, I know…first world problem. But we’re so spoiled with walking out of the store in shorts and Ts, feeling warm breezes and squinting from the bright sunshine! Yesterday’s trip required warm jackets, mittens and sock hats…whine whine. The sun was bright though so that was a happy event. ☺️
I’m in awe of your note keeping! My husband did that for me too…and though Val may not appreciate your efforts, those stats are vital to your being able to track his progress and trends.
From my experience with chemo, each month did get progressively a bit more difficult in bouncing back. That’s because the body/blood counts don’t completely return to normal in 28 days. So the starting point for the next round of chemo is at a lower level of blood values. After the final dose of chemo, that will all start to reverse and Val eventually should return to his robust health!
Unfortunately, until that happens, Mr Sunshine will be dragging his biscuits for a couple of months. It’s really encouraging to hear that he is still heading out to his shop daily and keeping up with a routine. I just feel that’s so important to the health of the psyche and the body…to keep moving and propelling forward! 🎶Don’t Stop Thinkin’ About Tomorrow🎶 Fleetwood Mac. ☺️
His numbers are actually pretty good. My GFR runs around 51 now and we are all thrilled to have it up that high after taking some pretty big hits down into the lower 20s. Keep up with the water intake to flush toxins and to keep those kidneys flowing. Kidneys don’t like excess protein, so there is a balance between what’s too much and not enough. As long as he’s having his routine blood work that will be monitored anyway, so unless he’s being told otherwise it’s really important to keep that protein level up.
So keep hanging in there, kids! This will be over before you know it and he’ll be back out in the desert tearing up the dirt😄
I have to know…what’s Val’s artistic endeavor that has him heading out to the shop daily? And besides, being the Queen of Temperature Taking, what do you enjoy doing for past time?
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2 ReactionsHi Lori! Mr. Sunshine is definitely dragging his biscuits. But he's still in good humor!
So, he really doesn't have any artistic endeavors - he's just a shop kind of guy. He loves working on our vehicles, welding, and general all-around fixing stuff.
We moved into our home 2 1/2 years ago (downsizing from 26 acres to 2 acres) and have been doing all of the landscaping ourselves. It's been quite an endeavor - lots of rock work, clearing the land, and planting. It has kept us extremely busy! He's the Engineer and I'm his Faithful Grunt 🙂
I, on the other hand work, on gourds! I love to wood burn, carve, and paint on them. Last summer Val built an awesome workshop for me and I'm having a great time in there. Eventually, I'll get back to stained glass, quilting, and ceramics. But my passion, right now, are my gourds. Once we get the garden finished (haven't even started that yet), I'll try my hand at growing them.
Stay warm!!! Spring will be here soon 🙂
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1 ReactionOur snow is rapidly melting with the inch of rain we had yesterday! I actually see signs of life in my flower garden…daffodils and crocus are pushing their leaves through the frozen tundra!! Yippee!
I knew we were kindred sprits…we share a lot of the same arty pastimes! Though I’ve not worked on gourds…that was my niece’s calling! She also burned cowboy hats! But I digress… having these artistic outlets really keeps us grounded, doesn’t it? Lately I’ve shifted gears to making journals and combining that with my watercolors. So that’s been fun and portable because I’m married to a nomad who likes to be on the move. 😉
That was quite a downsize from 26 acres to 2!! Sounds like you’re both making the adjustment well. My husband and I are trying to decrease the amount of ‘stuff’ we have amassed over the years from our own life and that of others…such as leftovers from our daughter, both sets of our parents, hoarding, etc. 😂. When we’re in Florida we literally live with only what we brought in a suitcase. Then we get home and realize how much accumulated ‘life’ is stuffed into closets and horizontal surfaces…something’s got to give.
Speaking of…my todo list today is to finish my closet project. Lots to donate! I don’t want to lose momentum. Hugs to both of you!
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3 ReactionsGood morning to my Kinred Spirit! Yes, I just knew it too! This is sounding very familiar....leftovers from family...hoarding...collecting, oh my. Tales for another conversation 😁 I hope the closet cleaning went well!
Mr. Ray of Sunshine asked me a question this morning. Knowing that everyone is different, he's wondering how long it takes, once his treatment is complete, to start getting his energy back? Or, as he said "do you ever get it back?"
The fatigue hit him harder this round, for sure. Mr. CRABBY Pants emerged, as well. Very unusual, but, I pulled on my Crabby/Snotty Pants, too. Ugggh. It's like a battle of the wills, then shutdown on both sides. I'm telling myself that it's his frustration at the fatigue. I'm also working on backing off a bit. Even under normal circumstances he does not like to be hovered over. At least this morning we're being pleasant🙄 It can only go up from here!
Have a beautiful Sunday!!
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2 ReactionsBack in the 70s, my boyfriend at the time (now husband for almost 49 years) gave me a button that read,
“Patience is a virtue…Virtue can hurt you!” 😂. My mum didn’t find humor in that. Anyway, patience for Mr Crabby Pants seems to be a challenge. (It also didn’t go unnoticed that crabby was all in caps!!)
His energy should return to normal or near normal after all the treatments end. Of course everyone is different and it can take a little longer for some people than others. But knowing the drive and ambition of Mr Sunshine, his motivation will have him recuperating at a steady rate. The healthier and more active people tend to be prior to treatment, and if they keep walking during, they bounce back much faster. Several of my doctors and nurses attributed my quick rebound to all the walking I did while in treatment. It really does make a difference. So with all your husband’s trips out to the work shop and trying to maintain some semblance of normalcy, he’s going to be fine!
As far as butting heads…from my perspective as a patient; My husband was so attentive and very much like you wanting to make sure safety rules were being followed, temps taken, food intake, meds downed, etc… As much as I love him dearly and appreciated his TLC, I felt I was being overly protected and smothered.
As patients we’re quite aware that we’re ill, weak and vulnerable. It’s difficult to maintain dignity when you’re feeling like a child being told what to do, no matter how much love is behind the intentions. A good trick is to pick your battles and maybe lengthen the leash a little bit. By now he knows the routine and the rules! ‘Think~2 year old”. He may be contrary but he still needs you. So just stand by, be supportive and take some time for yourself and your creativity while he’s going through the crabby stage of his chemo cycle. Hang in there!! ☺️
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1 ReactionHello to my Ray of Sunshine in the Snow!
Funny, Val and I met in 1978. I was a wee 19 year old (he was 31....my parents were NOT impressed. My Dad gave us three months. We'll be coming upon our 42nd this May. When my Dad was still alive I would call him every year on our anniversary for a little Daughter to Dad harassment about how we had made it far beyond his predicted three months.) Lots of love and laughter!
Thank you for walking me through my over-developed sense of caretaking. I know that so much of it is my fear of losing him. I know, I know - nothing has happened and he is really doing very, very well. But those old behaviors sure have a way of creeping in. I used to refer to my dog, when he was little, as reactive. He'd see a dog in the street, or the Fed Ex guy, and would react and go bonkers. He's much better now that he is older, so maybe this "oldish" dog can learn new tricks and, as you said "lengthen the leash a little bit" and not be so reactive myself. Speaking of dogs - I had to take our little guy to the vet today for bloodwork - it's a long story but he has chronic tick fever. What are the chances that both of my boys have a blood disease? Val's of the white cells and Taz' of the red cells. Oh my. We're praying that we've gotten rid of the tick fever for good (after treatment with doxycycline) and are waiting for results from his PCR test. He was a stray that Val found and trapped (catch 'em alive trap) in the desert three years ago. Tick fever, starvation, anemia, etc. etc. etc. The tick fever went underground and then reappeared recently. He is truly our baby! Which brings me to my point - Mr. Crabby Pants is getting his funny pants back on. He told Taz to be careful what he told his vet because you never know what they will do to you. He said that he just went in for a backache and look what happened to him. LOL
It takes a lot of gardening in my head to come back to balance - but I feel like I'm getting back there. I'm sure there will be more ups and downs to come. Hopefully, more ups! Tomorrow it will be raining all day so it will be a great day to take a Mental Health Day in my shop. Three gourds in the works at once.
"Talk soon"!
Sheri
Good morning, Sheri! It’s finally a springlike day in northern Wisconsin. The snow is receding and we see signs of life in the flowerbeds…little shoots poking out with soon to be daffodils and crocus.
Glad to hear Mr Crabbypants is turning that frown upside down again and I hope Taz appreciates Val’s sense of humor! LOL. Sounds a lot like our house. In fact you two seem to parallel my husband and I a bit. We’ve known each other 53 years and will celebrate our 49th anniversary also in May. My parents weren’t thrilled initially either because when we met through common friends, I was 16 and he was 19. He had to prove himself worthy and eventually won my parents, or I should say my dad, over. 💘 My mom was less cynical.
I wish everyone could have a soulmate who makes you laugh daily under the worst of circumstances.
Aw, the story about your little doggo… Poor thing! I’m so happy he has a happy life now. What a lucky pup! Can’t imagine what his life was like fending for himself in the desert. Hopefully his tick fever is gone now!
Hang in there you two. I know life has hit a bit of turbulence right now but it will level out! Hugs!
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1 ReactionYou can do it , I know you can. You are that strong!!!
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1 ReactionGood morning Sheri and Val!
How’s the man of many faces doing?? Is he Mr Sunshine today or Mr Crabby pants? 😅
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