Updates – This Extrovert is in Hibernation Mode #Health and Wellness

The last cliffhanger I left you with for my first 2021 post, my husband’s illness, my nonfunctioning leg, and our shower ceiling caving in, have been keeping me quite busy lately. The onslaught at everything coming at me has put me in introvert mode. I am 99 percent an extrovert and one percent introvert. When I get in introvert mode, it’s an introspective thing where I need to close myself in – not quite at the part where I’m digesting things and trying to find my way around what seems my new life.

When I get quiet, my mind is very busy. And until I can come to resolutions and/or acceptance I need to go within myself, not ready to share with others what I haven’t yet digested myself. So for those good friends of mine who check in with me daily and silently know that when I’m ready I’ll spill, thank you.

I feel right now my life is at a crossroads of many things – some I can’t peg, yet, I know are brewing, and some I’m having a difficult time facing. I don’t know if this past year was a catalyst for or if because of the isolating life we’ve been living alone together 24/7, it has allowed me to watch and be part of as my husband’s health issues persist. In a flash I seemed to have gone from wife to caregiver.

As I long for the days of Covid to pass so I can resume living, I’m just as anxious about when the time for living does come back. Because the living I’ve known for over 20 years now, is not and will not be the same. Since just before the new year, my husband has been accumulating fluid daily. This happened five years ago when he was first diagnosed with Cirrhosis of the liver. He was drained and put on two types of heavy-duty diuretics. One in particular was specific to pulling fluid from the liver area. The combo finally got properly dosed and worked well for the past five years. Then late last fall, a side effect of one of the pills, retaining too much potassium, was raising hub’s levels and had to be cut down. Thus the fluid buildup came back – except it’s not going away anymore so he’s now that guy who Dr. B told me about five years ago when I asked him if this fluid retention would come back. He’d told me he had patients who had to have a paracentesis every month, but maybe my hub would be luckier, I’d hoped. We had a good ride for five years, but now my husband has been going every two weeks for draining (Paracentesis). They can only get out approximately four of the ten litres he carries (we know by weight). Four days later he gains it all back. Last week I spoke with Dr. B and he’s moved the procedure up to once a week. We have to sign consent papers every time he has this done because of course the danger of inserting the long needle in his side with a drain tube, guided by ultra sound, done by a radiologist, has its risks. Today is drainage day again, thankfully.

My life has changed so much, considering there’s been no real living going on. Last February we were in Mexico, we came home mid March and the next day was lock down. My husband fell ill the day before travel home day, and life has been unwell ever since. Just like that, snap, our lives changed, during lockdown. My husband will not be going back to work of course, so I never got to experience that transition time from when he went to work a few days a week and loved to run errands, giving me my personal time. He always needed to be busy. So he got involved, voluntarily with some household jobs – emptying dishwasher and the many garbage cans. Then he’d take some garbage down the end of the hall to the chute, and the rest to the recycle bins in the parking level. It gave him something to do and he enjoyed it. I don’t enjoy it quite so much, but I’ve relieved him from his duties. The days before draining days he walks on a walker because his legs are like lead.

Current prognosis on past events:

So it took three weeks and various shades of yellows, greens blues and purples, but as of four days ago, I can walk proper without limping. I’m pretty sure I tore my calf muscle. It was painful and only a few days later the bruising was down my whole calf, ankle, and foot. I was using hub’s walker for over a week. So I guess there wasn’t enough excitement when I stubbed a toe bang on, precisely to the corner of the TV stand. I don’t remember feeling that kind of pain in many years. After sitting down and holding my foot for ten minutes til the initial throb wore down, I hobbled to the freezer door, below the fridge doors. I opened it and put my foot right among the frozen vegetable bags and stood there with the door opened for a good five minutes. It helped a lot. The pain was gone. The next day however, 3 toes and half my foot up were purple and I couldn’t move two toes. But, as of this writing, I have movement back. I am definitely blaming this shyte on Mercury Retrograde. Our shower was fixed and retiled almost two weeks ago, and we’re awaiting the new shower door. Until then, I’m grateful for the clear, shower curtain and temporary bar they put up for the meantime.

Two nights ago I had to call 911 as my husband slid to floor trying to get out of bed at 130am to go to washroom. I could not lift him for all the tea in China and was forced to admit my defeat and call for help. I realized my superhuman powers are limited after watching two EMS guys struggle to finally get him up. They were very kind and gave me some helpful tips  to help ‘seniorize’ things at home. They are also going to set up some help to come in a few days a week to help with hubby, so I’m looking forward to that part.

So yes, as you can see, there’s a lot I’m swallowing right now as my first priority is my husband, but in my head and as I witness my husband’s health decline, it’s all still so raw and very tough for me to witness and accept, as I’m having to learn to accept that things will never again be the way they were.

So that’s my update. I felt since I’d posted about the mayhem going on in my life, my readers at least deserved a follow up.

 

Never take life for granted for it can be snatched in the blink of an eye.

 

©DGKaye2021

bitmo live laugh love

 

We Are Home – On the Road to Recovery #Gratitude

 

On the Road to Recovery

Maya Angelou Quote - Nurses

I found this memo pinned on to the bulletin board at the nurse’s station in the hospital today and just loved it. It is so true that when people extend kindness and compassion and can care for others in their most humiliating moments – those people are always remembered.

 

My husband has been to North York General Hospital a few times now for surgical procedures, and a few times in the ER, which ultimately led to another visit in the surgical department. I remember quite a few nurses for their compassion, but it was also nice for a few to come up to me when I was sitting beside my husband while waiting in pre-op. Three of those nurses approached me to say hello. They were the ones who commented on how well I take care of my husband. So you see, it’s not only us finding compassionate nurses, but them also noticing the compassion their patients receive from others.

 

Even the best of healthcare systems could always use more nurses. I know how much they are relied on, and I had a few 12 hour days where I had plenty of time to observe. As good as the nurses are, they just don’t have the time to give more than the required attention to a patient because they have too many patients to take care of. So I do my best not to bother them for things unnecessarily. And I know how exhausted they must be looking after so many for many hours. But I’m an old pro at finding things in the supply cupboard and pantry without having to ask for things. When we demonstrate to the nurses that one of their patients isn’t as needy as others, they are quite willing to do other little favors for me when asked. It’s all in the giving to receive.

 

I was so touched by the beautiful comments you all have left me not only here, but on other social media and by email. My husband came home yesterday after a long 5 days in the hospital. They kept him in emergency most of the weekend hooked up to various cocktails to halt the bleeding until Monday’s procedure was done by my husband’s own gastro-enterologist, who happens to be an amazing person and doctor. Only 3 days before he was rushed into hospital we had visited Dr. B in his office for a follow up from the prior 2 week past emergency visit at the hospital, which turned out to be a completely different issue than this visit. Dr. B had scoped him both ways previously and told us all was calm and gave us his blessing to head off to Mexico (supposedly 2 weeks today we’d be leaving for the winter). But after hubby was taken into the operating room to be scoped again down his throat, Dr. B came into the recovery room and announced, “Deb, you guys won’t be going anywhere for a long while.”

 

Apparently, as my husband’s age progresses, so does his liver disease. With this disease, pressure mounts on the portal vein which runs from the liver to the heart. As pressure mounts, something called varices can grow, not unlike small varicose veins that have a potentially fatal propensity to burst in the lower esophagus, which is what happened. The treatment is a ligation banding where they insert ‘elastic-like bands’ through a scope to tie off and strangle that vein to kill it from further bleeding. The scary part is that it can happen again somewhere else. A most frightening and horrific thought to ever have to experience that again to say the least. He was also put on some other new meds – beta blockers, to try to keep the pressure from surging on that big portal vein.

 

They say it changes people when they have a life and death experience, in the same way a person who smokes a pack a day couldn’t imagine how a heart attack could change their life until it happens. I remember my own heart surgery to remove a tumor. I was petrified that I may never wake up afterward. And when I did, and realized how close I was to the possibility of dying, and surviving just makes you see the big picture – a little bigger.

 

We finally came home and had our melt down moment together after he cleaned up, shaved and napped at home. On came the tears with apologies for putting me through these last 5 days, the thank yous for saving his life and being there for him 24/7, and his realization that he was lucky to survive. And out came the emotional sea that had been welling up inside me for those same 5 days. But we are home now. And as Dorothy says, “There’s no place like home.”

 

D.G. Kaye Worn Out
Worn out but grateful

 

 

Right now we are focused on recovery – getting his strength back, his hemoglobin back up, adjusted to the new meds, and my mission to fatten him up. I also ordered a baby monitor to help give me peace of mind so I can put one monitor in the room he’s in and the base where I work so I can hear him calling. This will certainly ease my ongoing  concern I can’t hear him calling from the other side of our condo, saving me with my paranoia from having to get up every 5 minutes to see if he’s okay.

 

And so begins his road to recovery and me slowly getting back to a mountain of things to tackle to catch up on life that was put on hold this past week. And once again, I want to thank the so many of you friends who left comments and messages for me with love, wishes, and prayers. It has meant the world to me to know how much I was thought of, and that you are all my circle of community and friends, a community I missed being a part of very much. So just know how grateful I am.

Thank you gratitude

 

Wishes and Prayers, #Health and the Road to Victory

gratitude

Once again, I’d like to thank you all for so many wishes, prayers and good thoughts you’ve shared with me here and in your hearts for my husband’s recovery.

 

I’m touched by the comments I’m still receiving from so many, and dropping by to ask how my husband is progressing. I was going to post earlier this week, but to be honest, I’m superstitious, and I was afraid I’d jinx the progress by talking about it. Now, it’s been one week since my hub has had the paracenteses at the hospital, and although, we’ve still  been running to doctors appointments and therapy treatments almost daily since last week, I’m over the moon to report that although still not as strong yet as he was before, my husband is feeling so much better.

 

After the last drainage, 4 liters of fluid was taken out of him, leaving him with a weight loss of almost 9 pounds. He wasn’t feeling as energetic afterward, as he did the first drainage, and then he had an awfully painful test last Friday, which didn’t help things along, but he could breathe with ease once again.

 

Saturday hub was lethargic, but I was thrilled that he hadn’t gained back an ounce of fluid. Sunday he felt a burst of energy, and insisted that he was taking his car by himself, to get gas and a car wash. I was filled with worry to let him go out on his own, almost feeling as though my child had just gotten his license and was going out driving alone for the first time. But I felt compelled to give him back some independence. I worried the whole half hour he was gone but managed to refrain from calling him.

 

Monday, he finally lost 1 pound. Tuesday he lost 2 pounds. Wednesday, another pound, and Thursday he lost 2 more pounds! Somewhere between altering the diuretic prescription and the I.V. therapy from the naturopath to help push the fluid over to the kidneys, his body began pushing out the excess fluid by itself!

 

I’ve been overwhelmed with happiness for the progress that is finally happening after a 2-month road which seemed to have no end. I was petrified that his body would never cooperate with treatment to rid itself of excess fluids, and that he’d become ‘one of those patients’ who would have to go for drainage every two weeks for the rest of his life.

 

I know it’s early yet, and treatments, fluid retention, and drugs are still being monitored closely by doctors, and ESPECIALLY by me, but the improvements I’ve seen in this past week are nothing short of miraculous. Along with hub’s progress, his personality and sense of humour have also returned. Although it’s still early in recovery to be certain what the status quo will be, I can’t help but feel that this long nightmare is on its way to becoming a distant bad memory.

 

Next week hubby wants to go into work for a few hours on the days he doesn’t have doctor appointments. If I feel he’s up to it I’ll set him free. And I don’t mind saying, I’m happy not to have to be the chauffeur anymore. I hate driving, lol.

thank you so much

Once again I just have to say how grateful I am to all of you for the kindness and support you’ve shown. Besides the worry and fear I lived through these past few months, it was your prayers, comments, and conversations I’ve had with many of you that helped keep me sane and grounded; as though I had a place to come to where my life still felt familiar. I cannot thank you enough, I’m blessed to be part of such a wonderful community of friends. Thank you. ❤

The Waiting Could Kill You – #Healthcare

 

tick tock

My hands feel as though they’re roped and tied.

 

The last update I posted on my documented journey of my husband’s illness, we were off to the naturopath’s office. As always, Dr. Eric was wonderful. He went through all the medical files and gave us some inspiration. He gave my hub some naturopathic remedies, and set up an I.V. therapy program twice a week for him to help build up the important levels of the liver to help it function better.

 

Although we are hopeful things will take a turn for the better, and the new diuretic hasn’t helped, I also haven’t heard back from the requisition that Dr. B sent to hospital to order my husband another draining by a radiologist, last Wednesday. My hub has gained back all the fluid that was drained at emerge last week, within 4 days. It took all my patience to wait Thursday and Friday for a call, and then pass what felt like a very long weekend as he sits in discomfort, waiting.

 

I’ve left messages at Dr. B’s office, and emailed him. The phone is always so busy, difficult to get through. I’m pretty well-versed now on the symptoms of this disease, and this fluid build up can potentially become dangerous. If I could just get hub to this damned appointment, I’m going to request a port be inserted in his stomach, so in future, I won’t be at the mercy of the failing health care system.

 

This procedure has to be done with the aid of an ultra sound in order to see exactly where the fluid is pooling, and to make sure the needle doesn’t go into an organ. My naturopath informed me that if he gets a port put in, that there is a health care service I can call when his fluid builds up, and they’ll come to my home the same day to drain, without needing the ultra sound.

 

I just cannot comprehend how my husband’s situation isn’t serious enough for the hospital to follow up more closely when it’s a known fact the symptoms of his disease.

 

I’m beginning to believe more and more about a story a doctor friend told me a few years back — that health care for seniors is not at the forefront of medical system’s bureaucracy. I am beginning to believe that there is some sort of conspiracy in the priority of who gets attended to first.

 

A glimmer of hope: As I’m writing this, I just received an email reply from Dr. B’s kind secretary. She informed me that the requisition was sent out as we were told, and she has left several messages for that department to try and find out why it’s taking so long, and she said she would keep calling to try and move things forward.

 

To be continued.

This post is a follow up to the original post #Health #Caregiving and working with the Medical System.