No, Not ME, doc!

[PrimeTimer]

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.

[Kathymac2]

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.

Kathy

[Michael Murphy]

I thought I was suffering a bad asthma attack in October 2016, I treated it with a Xopex inhaler for 2 days and it wasn’t getting better.  Went to urgent care and was told I was having a major heart attack with no other symptoms then can’t 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. 

[MooseMom]

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.     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!

[UkrainianTracksuit]

Get well soon, PT! 

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!

[kickingandscreaming]

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.   

[cassandra]

Get well(better) soon PT


   


Lots of luck, strength, and air, Cas

[Paul]

Hope you feel better soon.

[PrimeTimer]

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.

[PrimeTimer]

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. 

[Cupcake]

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.

[MooseMom]

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. 

[cassandra]

I wish you many more good good days sweathearts


Lots of love, Cas

[Marilee]

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.

[kristina]

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.

[PrimeTimer]

This has been too long of a year for me. Living with Pulmonary Sarcoidosis has kept me homebound. Insurance company has kept me mad. Drug manufacturers make me feel even worse. Poor hubby doing his best working fulltime to take care of us and going to dialysis 3x week. Hives breaking out because the insurance doesn't want to cover some of our meds, despite the fact that these meds have been working quite well for quite some time already. Sometime I want to ask who my doctor is at the insurance company. I mean, they seem to act as if they are my doctor and know what is best for me and my wallet. Meanwhile, the meds that they do cover are not affordable. Not even with the co-pays anymore. They won't approve another cat scan of my lungs til I start over with some other tests first -but I'd say the fact that my oxygen level has sunk to 34 without the O2 up my nose is proof that I still have Sarcoidosis and it may in fact be worsening while we play around with any re-testing. By the way (lol) an O2 level of 34 actually felt okay. No choking, no feeling of death or anxiety. Felt rather calm, quiet and smooth, as if I could have just closed my eyes and drifted off to the next level. Wherever that may be...someday...I'm not afraid of death because if I was experiencing it, it was nice. Nothing terrible. Just unfortunately I need to be conscience in order to cook, clean or work. If I want to be dead, then I might think of just removing the old oxygen tube and go to sleep. Would be a nice way to go.     

I am just...….very tired. I want to get better. I have so much I want to do and so much I need to do. And hubby needs me! He needs me to be his partner to crack jokes together, watch stupid TV together, get back some sort of life and do things we can enjoy. And ah! What we'd give to worry less about things. We'd love the feel of a dog's belly wanting to be rubbed and his bark when you run and play and his warmth and companionship during cuddling. But everyday is just so hard now. Guess so long as nobody has turned us into a pumpkin we are doing alright. I just need to stop worrying and let whatever happens happen. Oxygen level of 34?! Life doesn't s/care /for/ me anymore.

[iolaire]

The spring buds are starting to poke out. I hope things start easing and looking up for you.

[cassandra]

 


 


Thinking of you, Cas

[MooseMom]

Ugh, ugh, and ugh, again.

It is just infuriating when you're trying so hard to just do what you have to do to survive and there are too many people in your damn way.

I was shovelling snow about 10 days ago, and just before I'd finished, my right leg slipped out from under me, and I fell hard sideways onto my left arm.  I was in such pain I could hardly get up.  I managed to get indoors to call my husband who came home and took me to one of those urgent care places (I didn't think I really needed an ER).

I didn't break anything, which was good, but since that day, I am so sore and so horribly bruised that any small chore is difficult.  Today was my first day back driving, and it was so hard.  I don't sleep well because I wake up in pain.  My right leg is very painful, too; I probably strained muscles I didn't know I had.

Anyway, my point is that all I had was a fall, but what you're dealing with is far more impactful.  When I think how hard it is dragging my bruised body around each day, I can't even begin to imagine how difficult things must be for you, PT.  I am so sorry that you're having to live this restricted, physically uncomfortable life.

May I ask...what is your prognosis?  Will it always be this hard for you? 

Yes, whatever will happen will happen whether you worry or not, but it's only human to worry.

Like iolaire said, spring is just around the corner.  The clocks change soon, and the sunshine will last longer as each day goes by.  I hope your days get sunnier.

[Paul]

PrimeTimer, you have my sympathies and are in my thoughts. I wish there was something practical that I could do to help.

[PrimeTimer]

Thank you to everyone for the well wishes. I haven't been doing so good. My O2 saturation levels have sank. So this past week I was sent to the hospital for a CT scan the insurance didn't want to do and a Bronchoscopy and pulmonary lymph biopsy and ended up in the ICU on a ventilator. Gee, wonder how they are going to feel about that! So things went from bad to worse but I am home now and just fighting nausea and trying to breathe without choking. They think they got enough tissue to biopsy, should know results in a few days. Meanwhile they are pretty sure I have Pulmonary Sarcoidosis but now with some permanent scarring. Nothing they can do about that. And the hives on my lower legs are a part of it  -the Sarcoidosis rash as they call it. My O2 has been increased and the Prednisone from 20mg to 60mg/day. Yeah, I am feeling that but helps with the breathing and no more hives. Probably will be adding Methotrexate to the mix. I just need to know what the game plan will be because honestly, it is the fear of the unknown that gets to me. I have a good team of doctors (except for the ones who work for the insurance company) and I am confident that "my team" will give me the education and tools to fight. Sarcoidosis shouldn't be a death sentence but apparently it's the drugs they treat you with that do the dirty work (side effects) or else the cost of the drugs that kill you. I am hoping for a quick turnaround because at some point I want to adopt a little dog for my husband and go on a short vacation altho I'd be just as happy to stay local and get out and do my own food shopping to cook up a big dinner for us. I'd be happy to go on a short walk outdoors. I'd be happy to order a nice dinner out somewhere and clean the apartment until it shines and sparkles again for us. I lead a rather boring quiet life and kind of like it that way. Being sick is not quiet nor boring. In fact, it's way too much excitement (puke bags, where's the nearest toilet, why does my heart want to jump out of my chest? Why am I shaking? See, too much damn excitement going on!) I want my slow and quiet simple life back . I want to be my husband's wife and the person I am right  now isn't. I don't even feel human. I don't know what I am anymore but if anyone were to ask, I want to be that woman who married a  fantastic guy who thought I was fantastic too -I said we were like 2 peas in a pod. And we are. Or were...gotta get better to be the other pea's pea pod.

[UkrainianTracksuit]

Look, PT, I don't want to be a downer, but my heart hurts so badly for you. There are no words to offer but I send all the prayers that I can. For real, when I read your posts, I see a fighter and a great wife, and that has not been lost. People take for granted the blessing of a quiet drama-free life. Sending love. 

[MooseMom]

Ukrainian Tracksuit has pretty much said it all.

I am truly saddened that you and your fantastic husband have had to deal with so much medical drama, and I am hoping that you will be able to return to a quiet life very soon.  There is much to be said for a simple walk in the park.

You're a great pea no matter what.

[PrimeTimer]

You're a great pea no matter what.

People take for granted the blessing of a quiet drama-free life. Sending love. 

Thank you, MooseMom and UkrainianTracksuit! BEST quotes ever!

[MooseMom]

How are you doing today, PT?