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Support for families dealing with cancer and other serious illnesses (Part II)

Started by Angela Wright · · 👁 34 views · 3.6K replies

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crimsoncanyon3 crimsoncanyon3 Newcomer
1 message
joined Apr 2020
#3361 ·
Chris Mitchell4 said:I’m checking back into this thread after more than six months away.
To make a long story short: about a year ago, my dad (59) was diagnosed with Stage 4 lung cancer.
He went through six rounds of chemo at Mayo Clinic, followed by some maintenance therapy. Last November, he also had palliative radiation on his brain.
Once the maintenance treatment wrapped up, the cancer flared back up, so he was sent to Jordan for immunotherapy, where he just finished his second cycle.
His general condition might not seem all that bad if it weren't for the agonizing pain he's dealing with in one hip and knee.
The pain flares up whenever he moves, so he spends almost all his time lying down, trying to avoid any necessary movement or even just turning over in bed.
What can we do?! Where can we find effective painkillers (since Ibuprofen 800 isn't doing anything at all), or should we be looking at different ways to manage the pain?
Please, I need help or advice!
The pain is terrifying; neither he nor my mom can get any sleep at night.
The primary care doctor prescribed some patches, but those aren't helping with the hip pain either. The specialists haven't offered anything concrete yet.
This has been going on for over a month and a half now.
Who should my parents reach out to?

Using ibuprofen is essentially using the weakest tier of the three main levels of pain management, and it’s definitely not enough for a situation like this. Usually, the oncologist handles the prescription, or they might refer the patient to a specialized pain management clinic.
I'll send you a private message.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3362 ·
Chris Mitchell4 said:I’m checking back into this thread after more than six months.
Long story short: a year ago, my dad (59) was diagnosed with Stage 4 lung cancer.
He went through six rounds of chemo at Mayo Clinic followed by some maintenance therapy. Last November, he also had palliative radiation on his brain.
Once the maintenance treatment wrapped up, the cancer flared back up, so he was sent for immunotherapy at MD Anderson and has completed two cycles.
His general condition might not seem all that bad if it weren't for the agonizing pain he's dealing with in one hip and knee.
The pain flares up whenever he moves, so he just stays in bed constantly, avoiding any necessary movement or even turning over.
What can we do?! Where can I find effective painkillers (because Ibuprofen 800 isn't doing a damn thing) or should we be looking at other ways to manage the pain?
Please, I need help or advice!
The pain is horrific; neither he nor my mom can sleep at night.
The GP prescribed some patches, but those aren't helping the hip pain at all. The specialists haven't recommended anything concrete either.
This has been going on for over a month and a half.
Who should my parents reach out to?

I'm sorry I'm just seeing this now, but I hope it's not too late to offer some advice.
Bone pain is most often caused by bone metastases, which, in cases of lung cancer, usually respond very well to palliative radiation—it can provide quick relief.
As for the pain itself, you might want to look into the pain management clinic over at Draskovic Street under Dr. Loncar. Managing acute pain is really the specialty of anesthesiologists. They titrate doses of a cocktail and teach you how to adjust the dosage based on the situation.

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Joseph Evans95 Joseph Evans95 Newcomer
6 messages
joined Sep 2019
#3363 ·
My father is currently battling metastatic prostate cancer, and over the last few weeks, his legs have weakened to the point where he can't walk anymore. It’s possible the metastases have hit his spine, though I suppose there could be other factors at play too. He’s seeing a neurologist this Wednesday to discuss getting some physical therapy started, but I was wondering—just in case this isn't strictly due to the metastases and there's a chance he might regain mobility—has anyone had any luck getting insurance to approve rehabilitation at a medical spa or wellness resort? (I realize the odds are probably slim... but I figured it wouldn't hurt to ask.)
loneskipper10 loneskipper10 Member
20 messages
joined Nov 2020
#3364 ·
So, we’ve got actual mRNA technology being developed as a cancer vaccine. Does anyone have any recent updates on this, and how effective are these mRNA shots actually proving to be against tumors? I'm curious about what kind of real-world potential they have as a treatment.
Donna Cook Donna Cook Newcomer
2 messages
joined Jan 2018
#3365 ·
Has anyone ever come across a blueberry-flavored nutritional supplement?

My dad had surgery for colon cancer at Mayo Clinic, and they were giving him this blueberry drink there that actually tasted pretty good.

Now he’s on Support which comes in cappuccino, chocolate, and some fruity flavor that he just can't stand. Since this has been going on for months, he's totally over those options and really wants something blueberry.

I honestly haven't even been able to Google which brand made that blueberry one, and I have no clue if you can just pick it up at a pharmacy without a prescription.

Hopefully someone here knows a bit more about this. Thanks! 🙂
Ryan Fisher75 Ryan Fisher75 Newcomer
1 message
joined May 2021
#3366 ·
Donna Cook said:Has anyone ever come across a blueberry-flavored nutritional supplement?

My father underwent surgery for colon cancer at Mayo Clinic, and they provided him with a blueberry-flavored drink there that actually tasted quite good.

He is currently using Ensure, which comes in cappuccino, chocolate, and some fruit flavors that he just can't stand. Since this has been going on for months, he can't stomach those options anymore, so he would really prefer blueberry.

I haven't had any luck googling which manufacturer produces that specific blueberry flavor, and I am also unsure if it is available over the counter at a local pharmacy.

I hope someone here has more information on this. Thank you. 🙂

If you cannot find the specific flavor, perhaps try vanilla or an unflavored version and mix in some frozen blueberries? Or maybe another fruit my father might enjoy. Regardless, I wish him a very fast and successful recovery.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3367 ·
Donna Cook said:Has anyone ever come across a blueberry-flavored nutritional supplement?

My dad had surgery for colon cancer at Mayo Clinic, and while he was there, they gave him this blueberry drink that actually tasted pretty good.

Now he’s on Support, which comes in cappuccino, chocolate, and some fruit flavor that he just can't stomach. Since this has been going on for months, he's completely sick of those flavors, so we're looking for blueberry.

I can't for the life of me find out who the manufacturer was for that specific blueberry one, and I have no clue if it's something you can just pick up at a pharmacy without a prescription.

Hopefully someone here knows a bit more about this. Thanks 🙂

Maybe an Ensure blueberry or rosehip flavor?
https://ensure.com/nutrition-product...-protein-drink

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Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3368 ·
Looking for some thoughts on my dad's latest labs—he's 78.

Tumor markers pulled:

CEA -> 11.5 ng/ml (normal < 5)

NSE -> 12.7 ng/ml (normal < 16.3)

CYFRA 21-1 -> 1.6 ng/ml (normal 3.3)

We're running these markers for a follow-up with his thoracic surgeon... we've been watching a shadow in his lung about 25 mm in diameter. We've actually been tracking this since 2010—so 11 years now—and it’s grown from 11 mm to 25 mm during that time.

My dad doesn't smoke, and he isn't showing any cancer-related symptoms.

He does deal with chronic osteoarthritis (he's due for a hip replacement soon) and ankylosing spondylitis. He's also a heart patient—survived a myocardial infarction back in 2010, which was also when they first spotted the shadow.

Since we have to wait for the surgical appointment, I was wondering if anyone knows if that CEA elevation could be linked to the arthritis or spondylitis... or if that lung lesion is finally starting to change after all these years.

Thanks in advance!
crimsoncanyon3 crimsoncanyon3 Newcomer
1 message
joined Apr 2020
#3369 ·
Nicholas Johnson8 said:I’m looking for some insight regarding my father's recent lab results. He's 78 years old.

Tumor markers pulled:

CEA -> 11.5 ng/ml (normal < 5)

NSE -> 12.7 ng/ml (normal < 16.3)

CYFRA 21-1 -> 1.6 ng/ml (normal 3.3)

We had these markers drawn for a follow-up with his thoracic surgeon because we've been monitoring a shadow on his lung about 25 mm in diameter. We've actually been tracking this specific spot since 2010—so 11 years now—and during that time, it grew from 11 mm to 25 mm.

My dad has never smoked, and he isn't showing any symptoms typically associated with cancer.

On top of that, he's dealt with osteoarthritis for years (he's actually scheduled for a hip replacement soon) and ankylosing spondylitis. He also has a heart condition, having survived a myocardial infarction back in 2010 (which is when they first spotted the shadow).

Since we have to wait for his upcoming appointment with the surgeon, could anyone tell me if this elevated CEA marker might be linked to his osteoarthritis or spondylitis? Or does the fact that this lung lesion has grown mean something is changing after all these years?

Thanks in advance!

There is no connection at all between the CEA marker and osteoarthritis. The fact that the lesion has increased in size indicates that something is happening, though I should note the growth has been quite slow considering how much time has passed. I would definitely recommend scheduling a bronchoscopy to get a clear look at what's going on.

---------
oncology.net
Nicholas Johnson8 Nicholas Johnson8 Newcomer
1 message
joined Aug 2021
#3370 ·
So, we did the X-ray out in that Small town, USA today—comparing it to the scan from a year and a half ago shows the lesion is stationary, hasn't moved an inch. After keeping an eye on this for 11 years, the surgeon says the changes are basically nonexistent...
Regarding the CEA marker, the surgeon mentioned it doesn't really have much to do with the lungs for diagnostic purposes—could be caused by a whole host of other things like rheumatoid arthritis or spondylitis... but he still wants us to get a GI workup just to rule out the digestive system. For what it's worth, the last colonoscopy five years back was totally clear.
Elizabeth Perez76 Elizabeth Perez76 Newcomer
4 messages
joined Oct 2021
#3371 ·
Sending big, warm, empowering greetings to everyone here

I’ve been following this group for about a year now, searching for answers and finding comfort in all the experiences you share.

Why reach out now? Well, while I've been learning about metastatic colorectal cancer over this past year, we just hit another tough diagnosis—one where, unfortunately (or maybe luckily?), I can't find much information online.

It involves someone very close to me, a young person (born in 1991), who was diagnosed with a sarcoma in their sternum with metastases spread along several points of the spine. They've done multiple biopsies, but it seems to be a really rare type because they've only confirmed it's a sarcoma; they aren't certain of the specific subtype yet, though they suspect it might be Ewing sarcoma.

I know some of you here have fought through sarcomas yourselves, alongside your family members, so I was hoping to hear about your experiences.

A friend has an appointment this Monday with an oncologist, Dr. Smith, at the major city hospital, and in the meantime, the family is trying to get in touch with specialist centers elsewhere to send over samples for a second opinion.

Thanks in advance to anyone who can find the time and heart to reply!
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3372 ·
Elizabeth Perez76 said:Sending big, warm, empowering vibes to everyone following this thread.

I’ve been lurking here for about a year now, searching for answers and the kind of support you can only find by reading through everyone else's lived experiences.

Why am I posting now? Because during this past year of learning everything I could about metastatic colorectal cancer, we hit another ugly diagnosis—one where, unfortunately (or perhaps fortunately?), there isn't nearly enough information available online.

It involves someone very close to me, a young person (born in '91), who has been diagnosed with a sarcoma of the sternum with metastases along several points of the spine. They've gone through multiple biopsies, but it’s clearly an incredibly rare type because the doctors have only been able to confirm it's a sarcoma; they aren't certain of the specific subtype, though they suspect it might be General Electric sarcoma.

I know some of you here have fought sarcomas yourselves or supported family members through them, so I’m reaching out to hear your perspectives and experiences.

A friend has an appointment this Monday with the oncologist, Dr. Smith, at the major metropolitan hospital, and in the meantime, the family is trying to reach out to specialized referral centers abroad to send samples for a second opinion.

Thanks in advance to anyone who can find the time and energy to reply!

When dealing with any sarcoma, the gold standard for treatment is surgical removal whenever and wherever that's physically possible.
The heavy hitter for sarcoma specialists in Europe is Dr. Casali in Milan, and honestly, the best move is to get in touch with him as soon as possible.
https://www.medifind.com/doctors/pao...asali/17903153

As far as the local metro hospitals go, Duke and Shante are the top dogs for sarcomas, though Shante is much easier to talk to and more open to discussing various clinical trials.
Rebecca Alvarez86 Rebecca Alvarez86 Member
10 messages
joined May 2021
#3373 ·
Hey everyone, sending strength to those dealing with this...
I need some input on what happens when someone refuses monotherapy—specifically a patient with glioblastoma. The plan was a cycle of 5 days of Temozolomid followed by a 23-day break. But after just one day, they’ve completely bailed because the vomiting and side effects are too much. They refuse to take another dose. To make matters worse, they’ve already lost control of their right arm and leg—they’re basically bedridden at this point.
Should we be bracing for a sudden, sharp decline?
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3374 ·
mistyjackal842 said:My dad is being discharged from the hospital to a facility in a suburban area, USA. He’ll be there for a month to start, and then I'll have to decide what comes next. Honestly, the feeding tube is the hardest part, but I guess it's just what has to be done. I don't really understand why he can't swallow anymore. Maybe it's just old age? It's not like he had a stroke or anything. If anyone has more info regarding feeding tubes, please let me know. The doctor was pretty unpleasant—she wouldn't even let me ask questions. If he could just swallow and eat normally, I’d take him straight home instead of these expensive facilities. Is there any kind of home health assistance available to help learn how to manage the tube?

It ended badly. My dad passed away at the end of August. From my amateur observation, the staff at the facility had absolutely no idea how to handle a feeding tube. First off, and this is the main issue, the tube was way too short. It kept slipping out constantly. No one at the facility knew how to replace it, either. It felt like they were treating it like some kind of toy, and in my opinion, it’s something that should only be managed in a hospital setting. No patient should ever be sent home or to a facility with such a short tube. Maybe he could have managed soft foods or yogurt, but I doubt he could have handled liquids. The facility wouldn't even let us try eating without the tube. I fought with them as much as I possibly could. In the end, I realized I was losing the battle for my dad. The general practitioner at the facility was incredibly rude; he only showed up to change the upper part of the urinary catheter. I actually ended up buying the catheter bags myself. I won't say they didn't try at all—they did bathe him, and they prepared special food for him—but that damn tube kept moving and causing him to choke. They just didn't know how to adjust it properly. I called the hospital, and he spent eight days at Dubrava Hospital, but honestly, they just made things worse. They released him to the facility in such terrible condition, which is where he eventually died. His arm was extremely swollen because, clearly, an IV had been running incorrectly for hours. He was covered in bruises and scrapes, and his shirt was barely even on him. There were no visitors allowed at Dubrava Hospital. I just don't understand how people can treat a bedridden patient like that. They lied to me and said he was being well cared for while they "waited for results."
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3375 ·
I want to thank everyone in this thread who tried to help me, even after my mother’s tragic passing during that 2013 healthcare strike. She was in severe septic shock because a serious hospital infection wasn't treated in time. I feel like I lost the battle for my parents' lives. I fought as hard as I possibly could—I had the medical background, even if my sister didn't. I truly wish everyone luck in fighting for the health of your own family members, but sometimes... well, sometimes the fight is lost before it even starts because of how our healthcare system is set up. Thank you all for the support; there have always been kind souls in this thread during the heavy grief I've endured. Life goes on. As for those who acted unconscionably while treating my parents, knowing they were at fault... may they live with their conscience. I know I couldn't live with myself, but apparently, they can.
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3376 ·
If there is any way my experience can help someone else dealing with bedbound patients—since both my mom and dad were in diapers, so I really had to learn the ropes—then please ask. When you're changing a diaper, you should position it so it catches everything, then gently roll the patient onto their side. It’s actually pretty straightforward, and honestly, one person can handle it alone. I changed both my parents myself. For Dad, the Ensure shakes just didn't sit right; they always triggered diarrhea. He was doing okay at home for six years, and I managed his care, even getting a hospital bed delivered to our place in the Small town, USA area. The swallowing issues started around New Year's. It happened in waves for him. There would be a few weeks where he could swallow fine, and then suddenly, it was difficult again. We had to do IV fluids at home for a couple of days, which is such a headache to organize in the summer because the home health aides all go on vacation, so they're hard to find. You have to buy the IV fluids and the tubing kits yourself at the pharmacy. And definitely buy pads. There were times I went through an entire pack of underpads in a single week just for Dad. This past summer was brutal, truly, especially since I was handling everything with Dad by myself. I miss him so much now. I resisted getting him a feeding tube for as long as I could because, in my mind, a tube felt like the beginning of the end. I knew a patient who had a PEG tube back when Dad was over at the Pulmonology ward at General Hospital, but that man was much younger than my father. Visiting those wards actually taught me quite a bit. The Pulmonology department at General Hospital is excellent; they really know how to care for immobile patients. But, if you have any choice at all, please try to avoid Dubrava Hospital. They just don't provide proper care for people who can't move. They really put my dad through it there; they performed invasive tests and... they cut him. They left him with an open wound. A nurse at the facility looked at me, pale as a ghost, and asked, "They made this wound deeper?!"

If anyone needs advice, I'll always be happy to help. You can change the sheets on a hospital bed by yourself, too. I used to change Dad's fitted sheets all on my own. I washed his hair myself. I even bathed him in bed. The only thing I ever needed help with from the home health nurses was repositioning him across the bed. You absolutely have to make sure the patient sits up somewhat; it isn't good for them to just lie flat all the time. Put a support behind their back—I used a cushion from an old couch and some pillows. As long as you are able, keep your loved one at home. It's better for them than being in a facility. But once you realize you just can't do it anymore—like I did—please, put them in a care facility if you can. I didn't want Dad to pass away at home; I was just too scared. After Dubrava Hospital discharged him in such terrible condition to the facility, I don't think I could have handled him alone at home anymore. Though, to be honest, the facility wasn't perfect either. But I shouldn't dwell on that. I fought as hard as I could, running between floors, calling those few nurses. We had enough caregivers, but they weren't trained. They weren't even allowed to administer medication because they lacked the training. Even the nurses at that facility weren't particularly bright. There was just one older nurse there who actually knew what she was doing, but she was only there for one day. In these facilities, they tend to group all the high-needs patients together in one room. So, don't be surprised by that. When my Dad first arrived at the facility, a man died right in that same room. I saw it happen and called the nurse. Just... prepare yourself for death and dying, because that is what you will be witnessing every single day.
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3377 ·
It’s going to be incredibly hard when you lose a family member, especially if you’re facing it all on your own. I had to go to the nursing home by myself to see my dad when he passed away. Even now, nearly two months later, I still find myself thinking about it every single night. He was so pale. I visited him at the facility every single day, and honestly, watching that happen... it wasn't easy. Just a heads-up, though—be prepared for people to pester you if you aren't vaccinated. I didn't even think twice about it; I just wore two surgical masks, even though the nurses and caregivers at the home often didn't bother wearing any at all. And prepare yourselves for all kinds of different home health nurses. One was a complete disaster, truly. She ended up getting too close with the visiting nurse, and since neither of them really knew what they were doing while Dad was still at home, I just had to step in and do things the way I thought was right. If there's just a minor skin wound, I'd suggest using Myrobact ointment or Byvacin and putting a gauze pad over it. That helped Dad's wounds heal so much faster while he was still at home. It worked way better than those dressings; they just didn't agree with his skin. You could use Trosur gel, I guess, but an antibiotic ointment is much more effective. You always need to have gauze on hand for a bedridden patient, along with saline solution and some lanolin cream for diaper rash. For Dad, the Hippov cream from Muller or the Drugstore was really good. Regular Bepanthen worked well for him too. Since he had such sensitive skin, those heavy greasy ointments, like the baby stuff or JGL creams, just didn't sit right with him. Change diapers frequently—it only takes a moment for the skin to get inflamed. I also bought an anti-decubitus pillow, but it wasn't great; it felt far too firm. It's probably better to just have plenty of small pillows so you can prop the patient up properly. That worked best for Dad, though in the summer, those pillows tended to get too hot. If you can, try to get an air conditioner for the summer months. Older people don't regulate their body temperature very well and can overheat easily. Our AC unit was pretty old, but as long as it worked, it was fine. Also, brace yourselves for mean comments. I dealt with that when I lost my mom, and certainly now that I've lost my dad. You know how they say it? It's a dog-eat-dog world. But that's just life, I suppose. Some people will actually take pleasure in your grief and suffering.
Don't expect the staff at the facility to be particularly sympathetic when a family member passes away. They tried to hit me up with all these extra fees, but I didn't feel like getting into a fight with them, so I just paid it the day Dad died.
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3378 ·
And please, don't let yourselves suffer like this—your parents wouldn't want that for you. Life just has to keep moving forward. I keep thinking back to what my grandma used to tell me whenever she was trying to cheer me up, since I was always such a nervous kid: "I know, I will, I can." I guess the sky's the limit, especially if you're smart enough to actually think for yourself.
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3379 ·
If you have a patient who can't move, you really need to massage their back to help get the circulation going. I used to use that Hypov lanonil cream from Muller—it comes in a tube and absorbs really easily, I guess. For his legs, soak them in a basin first, then apply the cream; for me, that blue one from Muller worked best. When he’s sitting up, make sure to put socks on him. During the winter, try to keep him covered up and maybe turn the heat up a little higher if possible. I actually picked up a space heater just in case the main heating ever goes out. It was just a basic coil heater from Elipsa. It really came in handy during the spring and fall. As for clothes, I think cotton is definitely the way to go—simple t-shirts and sweatpants. I mostly picked everything up at Kika. Even those long-sleeved cotton shirts for the transitional weather were from Kika. I did grab some thicker shirts and a sweater from Pepca and Kika though.
I bought those sheets with the character print from Our home. They're high quality and seem to last for years. We actually used my mom's old wheelchair, though Dad found it pretty uncomfortable to sit in. In the spring, summer, and fall, we would head outside with the physical therapist. She’d usually bring along some juice or a cookie for Dad to have while we sat on the bench. He wasn't much of a drinker, though, at least while he was still able to swallow. I suppose it's good to stay on friendly terms with the general practitioner so they can call in an antibiotic if needed. Someone who can't move gets sick so easily. For blood work, we used to call LabPlus Laboratory over in the Suburban area. They were incredibly fast and accurate; the results usually hit our email within a few hours. They've always been very precise and professional. Regarding hospitals, my only positive experience was with Holy Spirit Hospital. We went there for regular urologist checkups, and even recently when Dad had lung issues. They were helpful—they did a chest X-ray, diagnosed early-stage pneumonia, and they even gave him some paracetamol via IV right there in the hallway along with some saline. Then they called an ambulance to transfer him to Vinogradski to be closer to where we live. That’s where things got complicated, because they only kept him there for observation on oxygen, giving him IV antibiotics for two days. The oral antibiotic prescribed by Flexid was just too weak for him; Dad's fever kept climbing. I ended up calling emergency services, and they were very kind.
They told us his life was in danger and that he'd have to stay in the hospital. There was this moment where it felt like they were taking him off the oxygen he desperately needed... I don't know, almost like they wanted him to pass away at home. Since his temperature kept rising, I ended up calling emergency services twice in one night. In the end, they did keep him for six days in the pulmonary ward at Vinogradski. That department is truly excellent; the nurses work so hard. They change patients regularly, keep an eye on whether they've had a bowel movement, and stay on top of changing urinary catheters. While in that ward, Dad was on oxygen and had a nasogastric tube inserted for the first time. But the nurses there actually know how to handle a feeding tube; they follow a strict schedule, and visits were allowed for 15 minutes as long as you wore all the protective gear. Honestly, that was the only ward where the tube didn't seem to bother him.
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#3380 ·
Definitely pick up some saline nasal spray for an immobile patient, just so their nose doesn't dry out—and I mean plain saline, not those sea water sprays. You can find it at any local drugstore. Also, get some lubricating eye drops like Proculin tears or something similar; my dad's eyes were getting so incredibly dry that I had to apply drops several times a day. It might also help to grab those large baby pads; using them with saline solution worked well for me to quickly clean or rinse small wounds before applying antibiotic ointment. Make sure your doctor sends over some Myrobact antibiotic ointment; it’s always useful to have on hand. You can use sterile gauze to clean wounds, but I sometimes used the baby pads and it wasn't an issue. You should also get some child-sized nail scissors from Muller, and those smaller pads from Muller were great supplements for me to set aside since Dad has quite a bit of urinary incontinence. It’s enough to run a CBC, CRP, and a simple urinalysis—basically urine sediment. We used LabPlus Laboratory, a private lab from the Suburban area, where a technician comes right to the house to draw blood and picks up the urine sample on the way, so you can see if there's a urinary infection present. Just report the results to the primary care physician so they can prescribe antibiotics. I've mostly been handling all of that via email lately. If he developed a fever, we had to react immediately; usually, I’d call emergency services if it was the weekend. If it wasn't the weekend, I’d call a private medical service just so they could take us to Holy Spirit, because I had much more trust in their ER. You’ll pay $67 and wait about two hours for them to arrive. But then again, you have to wait for the ambulance too. The paramedics just decide whether to take him to the hospital or not, and they usually end up at Vinogradska, where they actually held a grudge against me because I wrote a formal complaint regarding my mother’s negligent treatment. They obviously held that against me since I was asking for an official hospital accountability report. So, yeah, regarding Dad and his health... maybe it would have been better if I hadn't written that letter about Mom. As for myself, I'm not afraid. Even though I ended up in an outpatient clinic for a sort of urgent procedure back in 2009—but that was before my parents got sick—nobody ever sent me back to Vinogradska based on where I live, nor did I even want to go there because I didn't trust that department. For regular checkups, it isn't an issue; my doctor scheduled Dad's appointments through the central referral system with a urologist at Holy Spirit. The doctors and nurses there were always so kind and professional, but unfortunately, for emergency hospitalizations, we had to go to Vinogradska Hospital. Once, back in 2014, Dad was kept for treatment at the Infectious disease hospital, but after that, they always sent him back to Vinogradska.

If there is anything else I can do to help with advice or medical knowledge, I’d be happy to. There is one specific ward where both my mom was back in 1999
, and Dad was this summer, which is the pulmonary ward at Vinogradska, and it is truly excellent. The nurses try so hard; they change the patients, there's a strict feeding schedule, and they even placed a feeding tube for Dad when he was on oxygen. They really monitor everything, including bowel movements; it’s honestly a top-tier ward. And the doctors are good—one was a bit unfriendly because she was busy working on the computer so I couldn't ask her anything, but other than that, everything was wonderful. Visiting was allowed this summer, and the information was provided once by a specialist resident, though she didn't seem particularly knowledgeable.

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