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no IV fluids because of high blood pressure? #197094
09-07-2018 09:15 AM
09-07-2018 09:15 AM
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ConnieT Offline OP
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ConnieT  Offline OP
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he was supposed to do an IV drip today to get fluids in him as he refuses to drink anything. The nurse wouldn't let him have the drip as he had too high of a blood pressure reading. He did not ask the numbers but said his blood pressure has been lower throughout this process. I would think as the doctor ordered the IV, he needs it. Maybe his bp is high because of dehydration???

any insight on this?


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197128
09-11-2018 07:15 PM
09-11-2018 07:15 PM
Joined: Jun 2007
Posts: 10,171
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ChristineB Offline
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ChristineB  Offline
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Connie, my thoughts are exactly the same as yours! Your husband needs to ask about these sorts of things!!! Im sure he is not feeling the best but he must pay attention to this sort of thing. He may not have his BP that high, some patients run high while others run low and for them its just how they are, its normal. Your husband needs to be his own advocate at times and ask about a nurse refusing his fluids. Whats the doc say about that? If it was me who was supposed to get fluids then when I got there the nurse refused them Id want to know why and have it explained to me so I had a better understanding of how this sort of thing can get changed by nurses. I suggest talking to the doc right away and getting to the bottom of why fluids were not given. Yes, you are correct... dehydration can wreck havoc on blood pressure readings.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197130
09-11-2018 07:37 PM
09-11-2018 07:37 PM
Joined: Aug 2018
Posts: 144
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ConnieT Offline OP
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ConnieT  Offline OP
Senior Member (100+ posts)
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Joined: Aug 2018
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he finally got his IV yesterday. I guess he did ask what his bp was and said it was 190/100. I've had mine go well over 200 in times of high stress so I know it scares the medical community but I survived and it came back down. They should have given him the IV on Friday as prescribed.

What's the oddest thing of this journey so far is that he feels better at week 5 than he did at week 1. Maybe he is using some of the meds offered? I don't know. the bad thing is his dog companion got run over tonight and had to be put down. Talk about a kick in the gut on top of all this sickness.

Watching someone suffer is really wearing me down. It's emotionally exhausting as I wouldn't wish this on anyone. As the nurse said day 1....this is the worst thing we could do to a human. I've been through a lot of tough stuff in my life but this awful and he's feeling pretty good these days. It's still awful.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197133
09-12-2018 04:30 AM
09-12-2018 04:30 AM
Joined: Jun 2007
Posts: 10,171
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
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Im very glad to hear your husband has had his hydration yesterday!!! This is a very important "pick me up" to those patients who are struggling to take in enough fluids. Try to get his doc to give your husband the IV hydration the day before and after his chemo too. This will help to flush that poison out of his system.

The dog being put down must have been a terrible tragedy to everyone! What a loss!!! Im an animal lover too and know what a special bond our pets have and how they enrich our lives.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197143
09-13-2018 06:30 PM
09-13-2018 06:30 PM
Joined: Aug 2018
Posts: 144
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ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
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Joined: Aug 2018
Posts: 144
he's getting IVs every other day now. He swallows about 20 oz of water a day so they told him to add pedialyte to his feeding tube. Because he does not drink enough, he is getting constipated. He has to add miralax twice a day and magnesium citrate until he gets the constipation under control. He has had 23/35 radiation treatments.

He told docs today that he was done with this treatment. Oncologist asked if he should pull out pics to show of what it looks like if he doesn't continue treatment. He said no. I said no...even though I was in dentistry, I don't want to see them either! So husband said he will finish out the last 2 weeks. Crazy thing is he isn't even taking any pain meds and we are near the end of the 5th week. He said his pain was a 4 or 5. Docs couldn't hardly believe it. I will say his body is really wearing down just the past couple of days though. He thinks he looks 80 yrs old. He doesn't but he said he doesn't recognize himself in the mirror. He has lost 30 lbs. I bought him a new smaller shirt tonight for something new to wear as he wears the same shirt every single day.

just an update. it is getting really weary for me to hear someone coughing, hiccuping and moaning day and night though. Hard to hear someone suffering.
Friends are getting me out of the house since I can't help him. He just has to get through this.

Last edited by ConnieT; 09-13-2018 06:31 PM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197147
09-14-2018 07:39 AM
09-14-2018 07:39 AM
Joined: Jun 2013
Posts: 253
alabama
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KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
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Joined: Jun 2013
Posts: 253
alabama
If he's managing without pain meds, that's still impressive ... and also not a bad plan since most of them can be constipating as well ... I have to monitor that myself, with my own meds. If he goes for those, make sure he increases fluids accordingly.

And again, ((hugs)) to you.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197151
09-14-2018 09:49 AM
09-14-2018 09:49 AM
Joined: Jun 2007
Posts: 10,171
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,171
PA
I just love how your husbands doc managed the "Im finished" statement!!!! I also attempted to quit when I was towards the end of my rads but the nurse and my son refused to even discuss it and said I was NOT allowed to quit. Rads gets progressively more difficult as time goes on. With 2 more weeks to go and the first 2-3 weeks of recovery being the worst of this, he still unfortunately has a bit of a rough road tile he can begin to feel better. Even if he had gotten away with quitting now, he still would feel progressively worse for a few weeks before he will start feeling even slightly better.

I agree with Kristen's pain meds comment. Yes, it is very impressive that your husband is able to go without the heavy duty pain meds most of us have used to get thru rads. Make sure your husband is being 100% honest with his docs and if he is in pain he speaks up and talks freely with his team. If he would need strong pain meds, the fentanyl patch works the best for most patients. BUT!!!! That kind of heavy duty pain killer will only work out for patients and caregivers who follow every single direction to the letter. If your husband wont follow all directions exactly to never to bend, fold, cut, rip, tear or otherwise compromise the integrity of the fentanyl patch and no long hot showers or baths while using the patch he could run into some MAJOR problems. We have had some members who innocently were soaking in a nice relaxing hot bath with the fentanyl patch on and they ended up in the hospital for nearly OD'ing. The long hot baths can interfere with the patch's time release function so all the medicine instead of slowly releasing it over time. Make sure your husbands doc and nurses are fully aware of your husbands dislike of playing by the rules. From what you have written to me it sounds like they are fully aware of their patients traits and are able to effectively handle them. The best thing about the fentayl patch is how easy it is to use, just peel off the backing and place it in a new spot every 72 hours, no measuring or checking if its been enogh time to take another dose of meds. The patch slowly releases pain meds so patients have a nice even dose.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197154
09-14-2018 10:33 AM
09-14-2018 10:33 AM
Joined: Jun 2013
Posts: 253
alabama
K
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 253
alabama
Gosh, yes, I wasn't even thinking of the patch and its special issues ... good call, Christine! The instructions on that always make me so paranoid! But it sure helps. Also, doing any of those things while trying to apply it can cause some of the med to wear off early (you get it on your hands or whatever, and then you wash off your hands if you're following protocol) so it's not as potent. Connie, when I finally broke down and begged for help ... because even though I'd admitted pain, they weren't acknowledging how bad it was ... they gave me a shot in the office and then sent us home with a Fentanyl prescription. It was a lifesaver, truly. I was using my regular meds to get through stuff (I have some tough meds anyway for migraine and such) but it wasn't enough for radiation burn. At least, not for me.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197156
09-14-2018 02:39 PM
09-14-2018 02:39 PM
Joined: Aug 2018
Posts: 144
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 144
he was refusing pain meds as constipation makes the pain around his feeding tube painful. his mouth...not so bad yet.

He can't keep anything down even from the feeding tube. so 3 times a week, he gets the IV fluids. He is in the fetal position in the car ride 2 hours a day and in bed. He is usually up and ready to go early to treatment. Today, I had to wake him right before we needed to leave. He just wants to sleep all the time and I don't blame him.

Yesterday was the first bad day. He was worse in the first 2 weeks, then had a couple of good weeks. It's been a roller coaster.

thanks to my support team above!!!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: no IV fluids because of high blood pressure? [Re: ConnieT] #197157
09-14-2018 03:16 PM
09-14-2018 03:16 PM
Joined: Aug 2018
Posts: 144
C
ConnieT Offline OP
Senior Member (100+ posts)
ConnieT  Offline OP
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 144
he was refusing pain meds as constipation makes the pain around his feeding tube painful. his mouth...not so bad yet.

He can't keep anything down even from the feeding tube. so 3 times a week, he gets the IV fluids. He is in the fetal position in the car ride 2 hours a day and in bed. He is usually up and ready to go early to treatment. Today, I had to wake him right before we needed to leave. He just wants to sleep all the time and I don't blame him.

Yesterday was the first bad day. He was worse in the first 2 weeks, then had a couple of good weeks. It's been a roller coaster.

thanks to my support team above!!!

The doc takes pictures at the beginning and during and after of people who refuse treatment. Sounds morbid but I see that it's a good idea. Some need that wake up call.

Last edited by ConnieT; 09-14-2018 03:37 PM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
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