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.
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. ❤
This morning while having my coffee on the balcony on an unseasonably warm and sunny day, I noticed a few police cars parked below in front of my building. Within the next hour there was a knock at my door- it was a policeman.
The policeman was doing a door to door check, as he held his cell phone up to me, showing me a picture of an elderly woman, asking if I’d seen her. The woman was missing, she had Alzheimer’s disease. She lives in my building with her husband and was last seen, caught on surveillance camera, exiting the front lobby around midnight. I told him I’d never seen that woman, as I don’t really know anyone in the building.
He proceeded to ask me if he could come in and have a look around. I asked him if he thought I was hiding some poor lost woman in my condo. He smiled and said it was protocol to check to see if she slipped into someone’s apartment. I began chatting with him, telling him that I was sure nobody else was in my home except my sick husband.
As my heart felt so sorry for this lost soul and her poor husband who had awoken to find that his wife was missing, I couldn’t help but ask the officer if she was wearing some sort of an identification bracelet. He said she wasn’t.
This incident stayed with me all day long as the police cars remained parked outside for most of the day. I couldn’t help but wonder where she may be, and if anybody cared enough to try and ask her if she’s lost. Even if she didn’t know who or where she was, someone could have picked up on that and called the police. I thought about her poor old husband whom she still lives with at home. I thought about how hard and frightening it must be for him to be with someone he loves who most of the time doesn’t remember him, and to now have to worry about what I’m sure was his biggest nightmare – her wandering off.
No, I don’t know these people, and there are millions of others out there with this frightening disease, and loved ones who worry about them. I just wanted to share this story for awareness. Although I’m sure many caregivers of people who suffer this disease may think they have a handle on things, the victims of Alzheimer’s and Dementia live in a different realm in their minds. They aren’t always aware of what time it is, what day it is, or even what era they are living in. I’ve heard countless stories over time about Alzheimer/ Dementia victims disappearing in the night while their loved ones are still sleeping.
Today I’m just advocating for those who suffer these diseases. If you haven’t already got an identification bracelet on your sick loved one, please look into getting one for them as soon as possible. It only takes one time for them to disappear and not be found, or worse, found dead somewhere whether at the hand of a sick individual or the elements.
I’m including a link here from the Alzheimer Society of Canada, supporting the use of Medic Alert Bracelets and services. There is some good information about supporting loved ones who live with these diseases. Alternatively, if you Google this disease and/or identification bracelets for these diseases, you will find links to information for help in other countries.
Today I’m reblogging my witty friend, Hugh Roberts‘ post about the reasons to unfollow a blog.
In the post, Hugh will go over some of the things that some bloggers may not appreciate about a blog, leaving them with the decision to unfollow. These are some great tips here from Hugh to help your followers stick around.
6 Reasons Why You Should Unfollow My Blog
“Unfollowing blogs. It’s something many of us don’t like talking about and something many bloggers seem to fear. However, one of the best things that will happen when you unfollow a blog is that it will free up your WordPress reader and/or your email box. The more you unfollow the more they will be freed up.
Why should you unfollow a blog and why should you unfollow my blog? . . .” Continue Reading
Tuesday April 19th arrived. I was beyond anger with no word yet from the hospital as I waited for them to schedule the paracenteses to drain the fluid from my husband. This requisition with the added note of ‘ASAP’ was sent out last Wednesday.
In spite of my fury, I put on my best optimistic looking face and took hub to the naturopath’s for his next I.V. therapy treatment. Just as we finished treatment and getting ready to leave, my cell phone rang. I grabbed it in anticipation, and was elated to see the call displaying the hospital number.
Here’s how that call went:
Receptionist:“Hello Mrs. Gies, this is xxxxxx Hospital calling from the imaging department. I’m calling to schedule your husband’s ultra sound for one week this coming Friday.”
Me:“Excuse me? You must be mistaken. First of all, he’s not having an ultra sound, he’s already had that. He’s been waiting a week for an ASAP request for a paracenteses. And please, don’t even tell me he has to wait another 10 days!”
Receptionist:“Oh my, this requisition must have come to the wrong department.”
Me:“YOU’VE GOT TO BE KIDDING!”
Receptionist:“I’m so sorry. Let me get this req over to radiology and I’ll call you back.”
Me: “Thank you! May I ask if there is a number I can have for that department in case I ever run into this problem again or miss your call?”
Receptionist: “Sure Mrs Gies, here it is . . .”
Me:“Thank you sooooo much.”
Getting that phone number was like striking gold. Previously, Dr. Eric and I were searching around the hospital website to try and find a contact number for the radiology department so we could try and find out what the delay was. But there was no number listed. Understandably, hospital departments don’t want people calling there randomly.
As hub and I were walking to the car, my phone rang again within minutes. I fumbled in my purse to get my phone as my hands were full of bags of new remedies and paperwork. Before I could retrieve it, my phone stopped ringing and went to voice mail.
I was so angry I missed THE call. I threw everything on the ground and screamed out loud, “Shit, shit, shit”. And then I proceeded to fish out the piece of paper with the number the receptionist had minutes before just given me. I dialed it and prayed to God that someone would pick up, no voice mail.
I was grateful when a woman answered upon the first ring. After her greeting, informing that I’ve reached the radiology department, I told her who I was and that I was sure she had just called me. She confirmed that she had. She then asked me if I could have my husband there the next day at noon. I could have kissed her.
Ironically, we had another appointment with Dr. B at his office the same day as the procedure, in the afternoon, 5 minutes away from the hospital, so that worked out well.
Wednesday April 20th, I took hub for the draining, and Dr. B had authorized that they could drain up to 6 liters of fluid max. He and I both knew there had to be closer to 10 liters of fluid in my husband’s abdomen, but there’s a limit to how much can be drained at one time.
I once again managed to finagle my way into the procedure room so I could be with my husband and listen to the goings on. But I became a bit disappointed when all the radiologist could extract was 4 liters (8 pounds). I’ve heard a few horror stories about some patients whom the doctors couldn’t get any fluids out of, so I was glad for what did come out, although still concerned about the remaining fluid.
After the procedure, we dashed over to Dr. B’s office. Hub was sore and exhausted, but feeling some of the pressure off his breathing. Dr. B ordered more blood work to be taken in a few days to test the various levels in his body after the fluid removal. I voiced my concern to him about the mix up with the requisition, and asked him how we were to proceed if and when my husband needed this procedure done again, without long delays waiting. Dr. B told me to monitor hub’s weight. He said he hopes he doesn’t gain it back, but cautioned me that hub may have to have more procedures, but time will tell. Dr. B said if I feel we need another draining done before our next visit, just let his secretary know and he’d push through the requisition himself at the hospital. He also said that if my husband turns out to be that patient who will occasionally need a drainage, he would authorize it so we could then call the hospital direct and make an appointment with them.
I’m hanging onto that radiology department’s phone number with dear life!
It’s now Thursday April 21st, The Queen’s birthday, my beautiful niece’s birthday, and my husband’s weight hasn’t gone up since the draining yesterday. I am grateful for good days. Tomorrow he goes for an unpleasant test (cystoscopy), booked over a month ago by his urologist. I asked my hub if he wanted to postpone it until he feels stronger, but he wants to get it over with, so I just hope everything goes smoothly and he can rest comfortably on the weekend without any medical drama or added fluid retention. This could possibly be the first weekend since our return from Arizona that he may feel well.
I’d like to once again thank you all for your wonderful kindness and support through this difficult time. You all know I’m a great believer in positivity, angels, and the law of attraction, so I know all of your good wishes and prayers are being heard because I can certainly feel them.
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.
Style sheets are used by editors to keep a succinct list of spelling, punctuation and capitalization uses of the author’s work to reference consistency throughout the manuscript. But style sheets are also beneficial for the author to use as well.
Using a style sheet for writers allows the writer to keep a list of their own preferences, for example: a certain way they prefer a word or phrase to remain with a different spelling or any other variation or preferred use to alert the editor to.
Below is a more detailed description about the uses of a style sheet bySue Archer.
“Your editor may have different ideas about style than you do. When you get your manuscript back, you don’t want to find out that some of your carefully capitalized words have been painstakingly lower-cased or that American spelling has been applied when most of your readers are in the UK. This will mean extra work for both you and your editor, which could result in higher fees. It pays to think up front about any preferences you may have, and call them out. . .”Continue Reading
My size 6 feet may be a lot smaller than my husband’s shoes, but I’ve been like an appendage to him since the onset of his illness, and I can safely say that I’m wearing his shoes through this journey.
Besides the fact that I am an empath – HSP personality , with a deep awareness of other people’s pain and emotions, I’m also somewhat of an investigative FBI, – not technically, but my husband often refers to me as one. It’s in my DNA to get to the bottom of the cause of every situation.
I’ve made it my business through the decades, facing illness, my own and family members’, to learn about diseases, pharmaceuticals, symptoms and cures, by reading numerous medical journals, subscriptions to health magazines, and years of discussions with my brilliant Naturopath. I have rapports with many doctors from past and present. I’m not afraid to share the things I understand with them and ask questions, and when it comes to my husband, as his advocate, I chase down doctors, get them to collaborate with one another by sharing what each of them deducted with other doctors on the case. I take him to every test, scan, and have been his full time nurse in hospital.
My knowledge, and respect for the medical care staff reward me with privileges I sometimes take liberties with, thus allowing me to follow my husband directly into procedure and operating rooms, until it’s time for them to do their job. I give them background information they may have overlooked, remind them of his allergies and medications, and kindly request that I can have a word with them after the procedure before having to wait for results.
Why do I do these things? Of course I do them to make sure my husband is getting the best care, but in today’s medical world, sometimes things can go awry.
With our health system declining from too many cutbacks, far away from what it once was, there’s a shortage of doctors, nurses and time. As a micro-manager, I like to do my best to keep on top of everything and try to get information as best I can. Backlog of patients waiting for tests, delays in receiving results, getting to some resolution of illness, can all take much longer than the ‘g-olden days’.
I’m writing this article to spread awareness. Yes, I’m also sharing some personal updates about my husband, but I feel that’s only fair to all of you readers and friends here who’ve been so supportive of me through this journey. But I’m also sharing the things I do to keep the proverbial ‘ball’ rolling in his case. These are things that some of you may not be aware of with your current health care systems, and blessed to not have to encounter them.
I see things all the time in the hospital. I observe. I see patients alone in their rooms with no visitors – sometimes all day. I see vacant halls sometimes with no nurse in sight. I hear patient’s buzzers going off and moaning for what can seem like an eternity to them before someone responds. I know when patients have been sitting in a soiled bed or diaper for a length of time because the stench through the hallways is a good indicator.
I was quite aware that I was the only one walking up and down the corridors, waiting to catch a doctor, after asking nurses approximately when he’ll visit our floor. I learned when the best times were to make requests and where to find the nurses when I had a concern. I learned how to ‘shop’ as my sister so kindly taught me while she stayed at my side.
The point I’m trying to make here is that when a loved one is ill, and/or elderly, and doesn’t understand legal jargon, and has nobody to advocate for them, they become one of many patients waiting for their turn, waiting to get fixed, waiting to go home. They are at the mercy of ‘time’ and if they know no better, just do as they’re told because that’s what they’re instructed to do, and they have no choice but to put their faith in what they’re told without questions.
We need to speak up and ask questions. We need to ask about medications and their conflictions with other meds.
We need to offer information about underlying issues that doctors may not be aware of because the patient forgot to mention or was unable to.
We need to know what to expect during the healing process.
And most of all we need to be there for compassion, support and encouragement.
I couldn’t turn off my brain on countless nights my husband was in hospital after feeling guilty leaving him late at night, knowing I had only a few short hours to sleep before getting up early to be back there by 630am. I worried he may not be able to reach the cup of water I left as close to the bed as I could without hampering his path to be able to get up with his I.V. pole and try to get to the bathroom. I worried that he may be stuck in a blood-soaked diaper for too long before someone could help him change. I worry about everything.
I know some of you may not be interested in reading long posts, nor be interested in all of the details of my husband’s illness. But for those of you who would like to follow the mystery of this journey and learn how I made my own deductions, kept on the doctors with insisting they do certain tests, and how I keep the ball rolling, you can click HERE to read more.
But for all of you, I’m making a list below of some of the methods I’ve learned to keep on top of my husband’s own medical situation, which you can take as pointers which may help you if you’re ever faced with an unfortunate illness yourself or with a loved one.