I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: PrimeTimer on March 26, 2019, 05:44:32 PM

Title: No, Not ME, doc!
Post by: PrimeTimer on March 26, 2019, 05:44:32 PM
Well, the care-partner (that would be me) needed some care this week. I'm a big fat stupido. I not only waited too long to deal with a major asthma problem (again) but also have cellulitis. I think I had that patriotic look going on...red, white and blue. Had to use a wheelchair for the first time the other day. And I scared the crap out of my doctor. Boy, was he ever upset. Poor hubby has had to look out after me and HE'S the one with no working kidneys. Got a ways to go but not on my deathbed, in fact I can't sleep in my bed yet, I sleep sitting up in a chair but I am breathing. Thanks to a nebulizer, prednisone, shower stool, furosemide and Bactrim. And one very very good doctor with two very very good nurses. Gave them all a scare I guess.

I am going to have to make this up to my husband, he's been doing everything and all the chores around here and with no complaints. I have to use the nebulizer machine every 4-6 hours now no matter what but it keeps me breathing. Cellulitis is scary, if you read what all it can do to you. Not being able to breath is scarier. Probably the best advice I could give someone is to tell them that if they are at all "mobile" they should stay "mobile". Getting older is no excuse to slow down. Being lazy is even worse. Like that tv commercial says, "A body in motion tends to stay in motion". Well, I slowed down and that was the worst thing I could have done. A good rest is one thing but it went downhill quickly and I don't want to ever go thru this again. All you caregivers and care-partners out there, please take good care of yourself because if you don't you won't be of any good to anyone. Listen to your body and listen to your significant other. And your doctor! It's okay to get help.
Title: Re: No, Not ME, doc!
Post by: Kathymac2 on March 26, 2019, 07:25:49 PM
Wow Prime Timer!  Being so focused on kidney problems, it's sometimes hard to remember there are a whole host of medical problems out there that can take you down in a hurry. 

Please take good care of yourself for both you and your hubby.  I wish you a speedy recovery.

Title: Re: No, Not ME, doc!
Post by: Michael Murphy on March 26, 2019, 08:09:47 PM
I thought I was suffering a bad asthma attack in October 2016, I treated it with a Xopex inhaler for 2 days and it wasnít getting better.  Went to urgent care and was told I was having a major heart attack with no other symptoms then canít breath.  After 3 operations and 2 weeks in every major hospital my life was saved. It turns out dialysis patients are prone to cardiac  problems. And any persistent breathing problems should be checked out, going in on the first day would have reduced the damage by a lot.  It is only a quick blood test to look for a cardiac problem. 
Title: Re: No, Not ME, doc!
Post by: MooseMom on March 26, 2019, 08:49:08 PM
Oh, geez!  PT, get better soon, OK?

Oh, I'm going to drag out my soap box here...wait a minute...ugh, it's heavy...OK, here it is!  Ahem.  You don't have to make anything up to your hubby.  He can do chores.  It's not rocket science, it's chores.  I'm sure he is a very smart man and can operate a dust cloth.   :P  Having kidney failure is tough, but it doesn't render one completely helpless 24/7.  I'm sure he is happy to look after you, especially after all of the love and care you've shown him!
Title: Re: No, Not ME, doc!
Post by: UkrainianTracksuit on March 27, 2019, 02:40:05 AM
Get well soon, PT!  :grouphug;

My mom has asthma that flares up from time to time. This last round with prednisone (50 mg) was brutal. When my mom used a nebulizer when I was a kid, she used to entertain me. Told me to grab a seat behind her and we would play fighter jet. All of that said, that's just a little window into your problem, and let me say, it's scary and I hope for a speedy recovery.

Cellulitis is BRUTAL. I had it when I had to go for IV treatments (needle poke in the skin, hello bacteria!) and it was AWFUL. You have my sympathy! Please take care of yourself and this is your time to be the patient. It may be a shorter term but now, you need all the love and support!
Title: Re: No, Not ME, doc!
Post by: kickingandscreaming on March 27, 2019, 05:27:18 AM
PT, I can't speak of cellulitis (and hope I never can), but I sure can relate about not being able to breathe.  THE MOST SCARY THING IN THE WORLD!  Finally, my pulmonary doc put me on Singulair and Breo Ellipta and my Asthma is (knock on wood) controlled .  But there is always the threat of an upper-respiratory virus that could take me down.  And then there was that "little" incident called Potassium Toxicity when a taper course of Prednisone triggered my blood sugar (Type 2) and released a ton of Potassium (7.7) and set my heart aflutter in the ER.  So I empathize and hope that you are breathing freely very soon.   
Title: Re: No, Not ME, doc!
Post by: cassandra on March 27, 2019, 10:47:36 AM
Get well(better) soon PT


Lots of luck, strength, and air, Cas :flower;
Title: Re: No, Not ME, doc!
Post by: Paul on March 28, 2019, 01:54:47 PM
Hope you feel better soon.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on March 28, 2019, 08:45:10 PM
Thanks everyone for the well wishes. Had blood tests. Have to get an echocardiogram next. Just to rule some things out. I miss sleeping in a bed. Heck, I miss sleeping! Had weird nightmares about poisonous mice on the loose while hunched over the kitchen table last night with a couple of pillows. Intentionally. Cannot breath lying back yet. Lying down also hurts my legs right now because of the cellulitis. Like the doc suggests, from now on I am going to shave my legs using an electric shaver to lower the risk of cuts or breaking the skin from a razor blade and inviting bacteria in. Meanwhile, the chair in the living room is better than the kitchen table but I have to alternate to deal with body aches. I don't even mind the side effects of the Prednisone right now. So long as I can breath I will gladly satisfy the cravings and have some of that carrot cake that hubby brought home.
Title: Re: No, Not ME, doc!
Post by: PrimeTimer on October 13, 2019, 12:30:00 AM
There is no better feeling than sleeping in your own bed. Actually, there is no better feeling than getting some real sleep! I am still on oxygen therapy 24/7 so sleep with tubing up my nostrils but back to my own bed and that feels pretty great. I have Pulmonary Sarcoidosis. Don't know how long I have to be on the O2 but despite the inconvenience of dealing with long tubing that tangles up around my feet, rolling a tank around on wheels and still waiting for a POC (portable battery-operated oxygen contractor concentrator) to be delivered, the extra O2 makes me feel better. I can complete 1-2 tasks a day, just depends. I am having to rely a lot these days on poor hubby -the one who goes to dialysis 3x a week and working a fulltime job. Was hard enough that one of us are sick, kind of tough when we both are. We do the best we can as we can.

Our description of a "good day" has changed but really, we try not to bog ourselves down with depression or negativity. If we can get things done around here (perfect or not) and not have it end in complete disaster, then that is a "good day". If we can still smile and laugh together and still get concerned about the weather and what to eat for dinner and what to watch on TV for the evening then we've had a "good day". It means we are alive and living. I hope to venture out tomorrow and even do a little cooking. Showering and dressing has become a chore but I've found my rhythm. I don't go anywhere without my oximeter. Or the O2. I love my husband and thank him every day. He gets me whatever I need. Sometimes it's hard for me just to get across a room so he will bring me whatever I am wanting, whether it be a glass of juice, box of Kleenex or a hairbrush. And I can't thank him enough. It is frighteningly too easy to take each other for granted. That's the scary part. So we are facing the challenges together....dialysis and sarcoidosis. We don't like growing old or sickness but we do like each other. Really, a love like no other. Our families haven't a clue but I guess they try. Too bad our priorities are different from theirs...But we have our little life here and despite all the doctor appointments, dialysis, nose tubing and machines and insurance co-pays and surprise balance-bills from hospitals, we are plugging away at a life where we make each other happy. No matter what. To say that our relationship is still intact is a "good day". We've decided to stick around a while and choose life. 
Title: Re: No, Not ME, doc!
Post by: Cupcake on October 13, 2019, 06:06:12 AM
what a great attitude and its so lovely to hear of your devotion to each other. Thank you for sharing your positive outlook. You are a treasure.
Title: Re: No, Not ME, doc!
Post by: MooseMom on October 13, 2019, 07:33:10 AM
You certainly have your priorities straight!  I don't have a thing to add as you've said it all!  My best wishes to you both.  :cuddle;
Title: Re: No, Not ME, doc!
Post by: cassandra on October 13, 2019, 01:15:33 PM
I wish you many more good good days sweathearts

Lots of love, Cas
Title: Re: No, Not ME, doc!
Post by: Marilee on October 13, 2019, 08:33:21 PM
Golly, PrimeTimer, this thread started more than six months ago! You and your hubby have been through the ringer this year and your outlook on life is humbling to me. Bless  you and your hubby for choosing to live - and LOVE.
Title: Re: No, Not ME, doc!
Post by: kristina on October 14, 2019, 07:04:31 AM
Hello PrimeTimer,

Difficult times in our life become so much easier when we can share it with our soul-mate!

And I am very happy for you both that you have found each other and can be together !

Best wishes to you both from Kristina. :grouphug;