Won't do this again

M1

My partner got both a flu shot and the covid booster yesterday, and when i got to her MC today about noon she was in bad shape-confused, shaking, hurting all over, and she'd had diarrhea during the night. Appears to have been too much for her system to give them simultaneously. She slept all afternoon-some better when i left but i worry about how she'll be tonight.

Im scheduled to get flu, covid, rsv and pneumovax on Monday after getting the green light from the hematologist-but boy, i may reconsider!

Iris L.

I would never get them all together. After each influenza and Covid shots I had a reaction for about 36 hours. So I planned my booster for a Friday afternoon, so I would have the entire weekend to recover. I was uncomfortable, but I was prepared with acetaminophen and fluids. I had no reaction to pneumovax, and I have not had the rsv vaccination. In your case, with your medical history, I would consider spacing them out. Or just be prepared for unpleasant reactions.

Iris

Kibbee

I always get vaccinations on different days. Kind of a hassle, but that way if I have a reaction I know which vaccination was the culprit. Thus far, luckily, my reactions have been limited to a slightly sore arm for a day or two. This year, however, I’ll be getting the RSV jab for the first time so who knows if my luck will hold.

harshedbuzz

@M1

I hope your partner is feeling better soon.

I had the Spikevax and Fluad Quad vaccines 2 weeks ago. Same arm. 8pm appointment. It kicked my butt. I was useless than next day and slept about 18 of the next 24 hours. I even ran a fever which is rare for me. I tend to have a reaction to both, so I decided to power through one day of feeling very lousy vs 2 days of feeling moderately crummy. Much as I complain, I would probably do it again.

My mom's pulmo prefers the RSV jab be given solo as there is some data suggesting it is slightly more effective when done that way. Mom's got COPD and asthma. I suspect she caught RSV from her great-grandson a couple years ago which resulted in a 5-day stint in the local hospital so I want to do what I can to avoid that.

When I had Shingrix, I didn't have any reaction with the first shot beyond a sore arm. About like a tetanus shot. But the second was very like my reaction to those I had with senior flu vaccine or a COVID booster alone leaving me achy and tired. I understand this is pretty typical. My PCP and pharmacist both recommended doing the second Shingrix dose closer to 2 months after the first for best results.

I recently had Prevnar 20 with no reaction beyond a mildly tender injection site.

Anecdotally, among my family and close friends, those who got Spikevax seemed to feel a bit worse than those who got Comirnaty. Women I know tended to feel worse than men I know. It's sort of like the reverse of "man-cold". My DH and DS also got a flu shot and Spikevax and felt merely "a little under the weather".

HB

M1

I'm not looking forward to it--but am going to hold the blood thinners tonight and tomorrow morning, that's one reason I opted for doing all four at once. We'll see....I don't HAVE to hold them, but this is a matter of pick your poison...

MN Chickadee

I had both the same day and won't do that again, though I can't be sure I wouldn't have reacted the same to the covid booster alone since I tend to react. I wasn't as bad as your partner but had chills and body temp issues for 48 hours.

side notes: there is some evidence that having a robust reaction to the covid shots is a good thing and can point to the immune system being ready to fight off the real deal. Still hard for a PWD, I know.

Also, I got the pneumonia vax a few weeks ago even though I am not 65 because I have asthma, and had zero reaction. The pharmacist said most people don't have anything other than a sore arm. But if I were you I would space out those 4 shots, particularly the RSV one. My 82 year old dad's doctor and my own had some reservations about its side effects and risk and basically told both of us we probably don't need to get it, only people with severely compromised lungs where the benefits would certainly out weight the risk. I would want to have that one in particular alone to see about side effects since its new.

Chammer

I did COVID, flu and shingrix last October at the same time. (I did it on a Friday after work so I told my friends I went out for shots after work! 😁) Shingrix definitely made my arm sore but I felt fine. So I did the same last week since I had not gone back for the 2nd dose of shingrix yet. Wow! The shingrix vaccine hurt going in, my arm had quite a reaction and I felt pretty garbage-y for a couple of days... glad I don't have to do the shingrix again! DH had shingrix and pneumovax about 4 yrs ago and did the first 2 COVID vaccinations but refuses flu and now COVID boosters. I try to stay healthy so at least I don't make him sick!

harshedbuzz

Good luck today @M1

M1

Thanks HB...as it happens, the pharmacy had a refrigeration issue over the weekend so only flu and covid were available. No reaction as yet. Which is a good thing because my partner is quite ill, out of her head, not eating because of painful thrush. I've hired a sitter for the next three nights, a first.

Iris L.

Good to know about no reaction as yet.. How is the thrush being treated?

Iris

M1

Fluconazole, she can't do topical swish and swallow. We may be having to decide about iv fluids today.

harshedbuzz

@M1

I am sorry to hear of that development. One of the men my son used to volunteer with had thrush after having his tonsils removed. He was pretty miserable until the meds kicked in.

Iris L.

Years ago we used gentian violet (messy) or nyststin suspension for thrust in infants.

How are you feeling today, M1?

Iris

M1

No shot reactions for me other than a sore arm. We spent nine hours in the ER today before getting admitted tonight-they think she has both herpes and Candida esophagitis. Miserable. She's had minimal oral intake since Friday.

Iris L.

How awful! I am so sorry!

Iris

harshedbuzz

I am so sorry.

MN Chickadee

Oh my, so sorry to hear this. What a cascade of issues as her immune system struggles. I'm sure you will, as usual, do a wonderful job of advocating for her.

SusanB-dil

uughh M1 ! Sometimes it just feels like stuff piled on stuff... so sorry. Hope you stay as 'no-reaction' and she gets feeling better fast.

M1

Feels like we've had our share of rough seas lately. Have to remember dear Lady Texan's great habit of remembering to be grateful. We're both still here, we've both gotten good medical care. I can afford to hire a sitter. We have good moral supports. We love each other and she still tells me she loves me. It's a beautiful fall day in Music City.

Jo C.

M1, I am so sorry with what is happening with your dear Partner; how miserable that must be. Good she is receiving great care and I hope she improves very soon.

We had a shock; rough seas indeed. Our usually strong and healthy son in Oregon abruptly became very ill. Diagnosed with Anca Vascultis. (The bodies immune system attacks the body - organs and blood vessels.) Kidneys are affected and he has sustained a stroke. Unbelievable this is happening. I am so concerned on his behalf. He has no support system where he is in Oregon. Daughter away at university and he is divorced. He installs and maintains large radiology machines in multiple different med centers across two states.

Sadly, we are of no help - my DH is post op post back surgery and my mobility is not great and to top it, I have developed chronic coughing and SOB for the last week or so and will get to the doctor tomorrow as it is not improving. Our local son made the 12 hour drive to be with his brother; he can only stay about two weeks - so, so worried.

Then I remember to be grateful for son's excellent health insurance and good specialists. Praying and keeping all in my heart.

May your partner improve quickly, M1, and may she feel more peace. She is blessed to have you.

J.

M1

Oh jo that is a scary diagnosis, for sure, i hope and pray they will take good care of him, the newer immunomodulators have helped with these diagnoses so much but it certainly takes an expert for appropriate treatment. Keep us posted.

We meanwhile celebrated eating about 1/4 cup of Jello tonight.

harshedbuzz

@M1 A little Jello is a step in the right direction. My late sister always ranked hospitals by the quality of the Jello offering. Woe be the kitchen that included grated cabbage.

@Jo C. Is this a second bout of vasculitis for him? I seem to recall reading this once before. I hope they are able to put together and effective treatment plan and that he responds quickly.

HB

Marta

M1 and Jo C: holding you in my heart. We all care about you.

sunnydove

https://alzconnected.org/discussion/comment/186352#Comment_186352

That second dose of Shingrix is no joke. First one wasn't fun, but second one my arm was so red and painful for 5 days and felt like I had a bad flu for the first 3. I have since heard the second shot hits hard. Glad it's done!

sunnydove

I would do them separate for a few reasons. First, if you do them all together and have a bad reaction, you won't know which one caused it.

Second, as I get older I have found I have a stronger reaction to vaccines. No need to make myself feel worse and do them all at once. And I figure if I'm struggling with them, it will only be that much harder for my mom.

Third, her primary care said to get the RSV vaccination separately since it's a new vaccine so there are fewer studies about how the body reacts.

M1

This has morphed into an exhausting, serious hospitalization that teeters on the tragic and/or the absurd. She's now gone a week with no oral intake, serious pain and distress, ridiculous arguments about her standing pain meds-they expect her to be able to ask for them????-and the hospital acting like they've never had to provide a sitter for a patient with dementia. I've been spending twelve hour days there and am exhausted and frustrated. They expected to be able to manage her with a monitored camera in the room that would talk to her! Ludicrous! I lost it today. Which distressed her no end.

Jo C.

M1, I am so deeply sorry for what has not been happening for your Partner at the hospital. The lack of professionalism and not having a clue regarding dementia is appalling, but it is something I have run into multiple times. Seems we have to type up our own Plan of Care needs with explanations and reasoning to present so there is some sort of basic understanding and for the MDs to write actual orders to fill the broken spots.

I am also concerned on your behalf your needing to be there on a daily basis for such a long period of time, under stress, when you have your own care needs. Truly, can you ask your Partner's physician to write orders that would cover the lapses?

I was in hospital two years ago (missed diagnosis of kidney stone); anyway, my room mate was a woman somewhere in her 90's I think; she was in latter stages of dementia. She literally hollered loudly and screamed 24/7. She may stop for 20 minutes or so on a 24 hour continuum; but off she would go again. I had her with me for four days! No sleep for me and not a single understanding staff member. Place filled, no alternative rooms.

I did not turn on my TV as I did not want the poor woman to be frightened or upset by the picture much less the sound; kept my curtain drawn so she did not see me and kept myself quiet. She was totally ignored. If she had pain, no one was even trying to assess. The RN came to my bedside to give me a pill and mentioned how hard it was for the nurses to feed the patient as with each spoonful all she did was cough. (!)

Not wanting to sound like a smart ---, I mentioned, "I wonder; do you think she may be aspirating her food? Wonder if doctor knows she is doing this." Well; that got some attention and a swallow eval was ordered. HOWEVER: this patient's doctor ( a messy, unkempt looking old fellow with NO bedside manner or speaking with patient; he was really a dilly. ) He ordered an Upper GI rather than a regular swallow exam because her swallow was off. What the heck??

In came THREE RNs who in concert decided to try and insert an NG tube into the poor woman . . . What????? OMG!!! You can imagine what ensued . . . the poor panicked patient screamed and screamed and thrashed and fought - two nurses were trying unsuccessfully to hold her down and one trying to get the tube down her nose - I was undone! Could not help myself in suggesting that was not good practice and perhaps best to cease the fighting the patient, etc. and let the doctor know the lack of being able to perform his order. Horrible.

Never in the four days that woman was in my room did one single staff member try to connect with her, speak to her, try to soothe her, assess for pain that she may have but could not communicate. Task orientation ONLY as required if a mess to be dealt with and then with nothing soothing to help.

I did not get any sleep, but overall my concern was for that patient. I even presented the staff with the connection for Alz Assn and for ALZ Connected as being, "very interesting and helpful.". All one RN did was to print it in small letters on a white board at the foot of the patient's bed and that was that. Eventually, they moved the patient to another room and I never did find out what happened to her. None of any of that necessary. So much missing. Overall; ignored.

As for my own experience with my LO; same sort of experiences you are having whether in the ER or Inpatient setting. Rare staff understanding and me realizing a HUGE hole in the education of medical people in regard to dementia patient needs, etc.

And yes; I did indeed type up concise bullet points re my LO and what she could and could not do; what she could communicate or not; etc. and the plan of what would be needed in care. Asked that the points be included in their Plan of Care and to let staff know. Helped a tiny somewhat but not a lot.

Stick to your guns and get the Docs to write orders that must be followed. May this soon have some settling and please do not forget to care for yourself. I am so very sorry.

J.

MP8

M1 and Jo C., your stories broke my heart. I am learning that the lack of understanding among medical professionals is broad and deep. Thank you for sharing your experiences.

M1, I hope your partner's condition improves soon. Please take care of yourself as you advocate for her.

M1

It's truly absurd. Get here this morning to find that they'd let her pull out yet another iv -sent a male attendant who "gave her privacy" in the bathroom and that was that. Also got a ludicrous call from an orthopedic consultant who had been called-by whom i don't know-because she had complained of leg pain. duh, they werent giving her her meds for her known scoliosis. I thanked that woman and reminded them that she could not give an accurate history.

mommyandme (m&m)

Soooo frustrating and horrific! I’m so sorry!

MN Chickadee

How awful. Do you know how much longer they expect to keep her? Sounds like she can't get out of that setting soon enough.