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MelodyL 09-08-2015 08:29 PM

Quote:

Originally Posted by DejaVu (Post 1169612)
Hi Melody,

Just checking in.
Thanks for the updates.

I am sure it will be nice to settle in at home today, once you both get home. :)

:hug:
DejaVu

Hi All.

Happy to report he is home, safe and sound and I'm not letting out of my sight until he finishes all the antibiotics for his Negative Gram bacterial UTI.

I don't know how he does it. All the stuff he has been through and he has the appetite of an elephant. lol

So keep praying. The prayers worked well. And I really do thank you all for your support. There I was sitting all alone in that hospital room and I had you all talking to me on this forum. Helped a lot.

Love ya
Melody

MelodyL 09-08-2015 08:36 PM

Quote:

Originally Posted by ger715 (Post 1169699)
I know you have your sprouts and Methyl B12; but; you really are AMAZING. I don't know how you keep up with all that is continually going on. Alan sure is the center of your world as you must be in his.



Gerry

Hi Gerry:

I'll be honest. We are all each other has in this world. We have great friends in the neighborhood but unfortunately family is another story. And since I'm a bit better in the health department (I call my self an Amazon, lol), I really have no choice but to step up to the plate. I probably have OCD because I have to plan everything. I knew that I would have to make meals so I did and froze them, so when we came home, I just popped them out of the freezer and put them in a pan, covered for a good 15 minutes and VOILA, dinner.

But I did treat us to something naughty tonight. Dunkin Donuts/Baskin Robbins (on Tuesday) has a buy one sundae, get one free.

If you think I would pass this up, forget it. It was DELICIOUS.

Something called Chocolate mousse pie ice cream. Only one scoop but with the toppings, I had a ball. I think I deserved a little treat.

Tomorrow back to sprouts and hopefully some Tempeh. Now THAT is awesome in a sprout salad. lol

Melody

DejaVu 09-08-2015 09:16 PM

Welcome Home!
 
I am thrilled to read you and Alan are home! :D

Wishing you both sweet "chocolate mousse pie ice cream" (with toppings) dreams! :winky:

Just think, you can sleep in! :)

:hug:
DejaVu

ger715 09-09-2015 10:37 AM

Quote:

Originally Posted by MelodyL (Post 1169704)
Hi Gerry:

I'll be honest. We are all each other has in this world. We have great friends in the neighborhood but unfortunately family is another story. And since I'm a bit better in the health department (I call my self an Amazon, lol), I really have no choice but to step up to the plate. I probably have OCD because I have to plan everything. I knew that I would have to make meals so I did and froze them, so when we came home, I just popped them out of the freezer and put them in a pan, covered for a good 15 minutes and VOILA, dinner.

But I did treat us to something naughty tonight. Dunkin Donuts/Baskin Robbins (on Tuesday) has a buy one sundae, get one free.

If you think I would pass this up, forget it. It was DELICIOUS.

Something called Chocolate mousse pie ice cream. Only one scoop but with the toppings, I had a ball. I think I deserved a little treat.

Tomorrow back to sprouts and hopefully some Tempeh. Now THAT is awesome in a sprout salad. lol

Melody


Melody, I sure can use some of your OCD. You really have your "act" together.

On the naughty side; hubby brought home from Costco a box of 15 Haagen Dazs chocolate covered almond ice cream bars. We have been treating ourselves, after dinner, nightly to an ice cream bar each (originally had cut one in half, put my half on a plate and left his half on the stick; but 1/2 each didn't last long enough so now we each have one of our own).

Glad you an Alan have each other, the love and caring really shows.

Both of you are in my prayers.


Gerry

MelodyL 09-09-2015 01:50 PM

Well....right now I'm not speaking to him. I'm not kidding. I just unloaded on him like you don't know. Want to know why?

After EVERYTHING I have done for him, this morning I even went to the local Walgreens which is a 10 block walk for me (with my bad knees), got his prescriptions, went shopping, brought home his favorite chinese soup, came into the house (from 85 degrees outside WHICH I LOVE because I have arthritis), and walked into this FREEZING A/C house and I understand that he likes it cold and I don't. But I usually give him his hours of a/c then I close it and he is always fine because I have this fan pointed at him and he's always fine with that and then I get to warm up a bit.

I walked into ice cold living room (at least to me it was ice cold), I walked over the A/C, closed it, looked at him and I said "For just 5 minutes". He started yelling "no no, Can't you go into another room"?? We have a three room apartment. I spent the entire morning, cleaning, disinfecting, washing, etc. etc. and he had the nerve to tell me to GO INTO ANOTHER ROOM.?

You don't want to know what I said to him. Right now I'm not talking to him

I'm just so fed up. Sorry to vent but I'm am not wrong.

Melody

DejaVu 09-09-2015 08:34 PM

(((((( Melody ))))))

You have given a lot, Melody. It's in your heart to do so. It's just fine to also make your needs known. ;)

Much Love to You and to Alan.

:hug:
DejaVu

ger715 09-09-2015 08:54 PM

Quote:

Originally Posted by MelodyL (Post 1169842)
Well....right now I'm not speaking to him. I'm not kidding. I just unloaded on him like you don't know. Want to know why?

After EVERYTHING I have done for him, this morning I even went to the local Walgreens which is a 10 block walk for me (with my bad knees), got his prescriptions, went shopping, brought home his favorite chinese soup, came into the house (from 85 degrees outside WHICH I LOVE because I have arthritis), and walked into this FREEZING A/C house and I understand that he likes it cold and I don't. But I usually give him his hours of a/c then I close it and he is always fine because I have this fan pointed at him and he's always fine with that and then I get to warm up a bit.

I walked into ice cold living room (at least to me it was ice cold), I walked over the A/C, closed it, looked at him and I said "For just 5 minutes". He started yelling "no no, Can't you go into another room"?? We have a three room apartment. I spent the entire morning, cleaning, disinfecting, washing, etc. etc. and he had the nerve to tell me to GO INTO ANOTHER ROOM.?

You don't want to know what I said to him. Right now I'm not talking to him

I'm just so fed up. Sorry to vent but I'm am not wrong.

Melody



Better to have a place like NT to "vent". We're here for one another.

I think you have been stressed to a point where just a little of appreciation would have been nice. Hopefully, when he thinks over his lack of giving you a little time and space without being uncomfortable, he will feel badly about his behavior. Both of you have been through so much.

With his having been so ill, he's probably looking for more sympathy and not realizing your needs as well.

Hopefully by now things have settled down a bit with the two of you talking and just enjoy being home together.

Take care of you too!!:hug:


Gerry

Hopeless 09-09-2015 10:02 PM

Oops, I guess I should not make this post as I do not want to offend you, Melody.

You BOTH have valid points. You do need to get some acknowledgement from Alan for all you do. I do appreciate the fact that the colder temps make you miserable and that the warmer temps are more comfortable with your arthritis.

I happen to be like Alan,.... I need the temps LOW. I am absolutely miserable if the temp goes up even the slightest amount. I can't sleep, can't breath, and I get very irritable when I am not cool.

I have gone through the battle of the thermostat when I lived with another person. Similar situation, the other wanted it warm and I wanted it cold.

My poor argument was they could add more clothing, put on a sweater, robe, jacket, etc. I could not take off any more clothing, I was almost in my birthday suit as it was.

No, I am not taking Alan's side here. I am just saying I understand how he feels but also how you feel so unappreciated.

Hope you can forgive him and start talking again QUICKLY !!! It is good that you expressed your feelings. Just don't hold a grudge. It will only make YOU feel bad.

When Alan requested you go into another room, I would have responded, NO, YOU go in another room.

Oh, and remember you came in from the outdoor heat, so you probably felt the colder temps even MORE than if you had not been outside first.

MelodyL 09-10-2015 09:15 AM

Quote:

Originally Posted by Hopeless (Post 1169953)
Oops, I guess I should not make this post as I do not want to offend you, Melody.

You BOTH have valid points. You do need to get some acknowledgement from Alan for all you do. I do appreciate the fact that the colder temps make you miserable and that the warmer temps are more comfortable with your arthritis.

I happen to be like Alan,.... I need the temps LOW. I am absolutely miserable if the temp goes up even the slightest amount. I can't sleep, can't breath, and I get very irritable when I am not cool.

I have gone through the battle of the thermostat when I lived with another person. Similar situation, the other wanted it warm and I wanted it cold.

My poor argument was they could add more clothing, put on a sweater, robe, jacket, etc. I could not take off any more clothing, I was almost in my birthday suit as it was.

No, I am not taking Alan's side here. I am just saying I understand how he feels but also how you feel so unappreciated.

Hope you can forgive him and start talking again QUICKLY !!! It is good that you expressed your feelings. Just don't hold a grudge. It will only make YOU feel bad.

When Alan requested you go into another room, I would have responded, NO, YOU go in another room.

Oh, and remember you came in from the outdoor heat, so you probably felt the colder temps even MORE than if you had not been outside first.


Hi.

First of all i have to clarify a bit. this has nothing to do with breathing , wearing more clothes. this had to do with entitlement issues. he thinks he is right. he really does. he thinks my job is to take care of him and do everything because he has neuropathy. this is a man who doesnt believe in Valentine's Day, or any gift giving occasion. i found this out many years ago when my birthday was coming up. someone wished me an early Happy Birthday. and he realized my birthday was coming up and he actually groaned and said OMG , now i have to buy you a gift? This is a testament to a mans character when he feels like that.

I immediately knew exactly what I was dealing with. he has not changed, he will never change. i belive he has Aspergers. he has all the traits.

this means my feelings dont matter. as long as he is taken care of, is fed. etc. etc. Because any man who can say that to a woman needs a good swift kick. his sister COMPLETELY agrees with me. thats why i dont do laundry any more, i send it out. makes a big difference in my life. so alan at 68 will never get thst lightbulb moment thst WOW MY WIFE TAKES SUCH GOOD CARE OF ME"'' oh he will say thank you and such. Honestly, it means nothing any more. and yes, i am in therapy and this has showed me what i can and cannot expect from him.

Not an easy life. But i am up to the task.

I just had to clear up certain things. we lived around the corner for 23 years with no Air cond. only in the bedroom. imagine that.

but lets go back to his health and change my venting. he is still taking his antibiotic, takimg a cranberry pill. i am not giving him colloidal silver until he finishes the antibiotic and hopefully his hospital visits are over. we still have the urologist. the podiatrist and god only knows what else coming up next week.

and i have to go with him because we use ambulette service and his trips are all exhausted and i use whatever trips i have left. this saves us $24.00 Round trip. we just say its my appt.


Do you think a man who doesnt believe in buying his wife a present is going to pay for car service??

so far so good. oh he gets his new custom molded shoes and orthotics in a few weeks

melody

Hopeless 09-10-2015 11:03 AM

Hi Melody,

I do apologize. I really was talking JUST about the temperature. I had no idea Alan was such an inconsiderate person to you. I guess I got the impression that he was usually a really super duper fellow from the way you have spoken of him. About his "fan club" with the girls in your circle of friends, etc. About how you DO take care of his every desire and need. I thought it was a mutual thing. Sorry to hear that you are so under appreciated.

If he is using his health (neuropathy, etc.) as an excuse for his behavior, that won't cut it as you have your own health issues. I know of your diabetes and your arthritis and there is probably much of which I am unaware.

I was just commenting on the irritability I get when I am "hot". Guess, there is more to it with Alan than just temperature related irritability.

You just reinforced my happiness with living alone. :)

MelodyL 09-10-2015 04:30 PM

Hi, no need to apologize, I enjoy your comments.

In any relationship, one usually gives more to the other. And this guy's a pip. I only hope there are no more emergency calls to paramedics. My knees can't take it. We had two days of pouring rain here today.

But I got to sit on the porch and chat with my landlord. To me, that is heaven because I never had a porch before.

And then (when I'm able to go), there is always my friends at Dunkin.

And these fans of his call me every day and go: "How's Alan, give him our love, hugs and kisses' and I get hysterical. He LOVES the attention, I mean, what man wouldn't?

I'm used to his ways. He's not going to change any time soon.

One day at a time. No fever, no sweating, peeing just fine. That's all I care about.

But if he decides to get frisky, that's when I'll bop him. rofl.

Melody

Hopeless 09-10-2015 04:40 PM

Quote:

But if he decides to get frisky, that's when I'll bop him. rofl.

Loved it. :) :) :)

DejaVu 09-12-2015 05:18 PM

Hi Melody,

Thinking of you and of Alan.

You have had a very hectic couple of weeks. I hope you are getting some rest and some "fun time" in when you can do so.

:hug:
DejaVu

MelodyL 09-12-2015 09:45 PM

Quote:

Originally Posted by DejaVu (Post 1170641)
Hi Melody,

Thinking of you and of Alan.

You have had a very hectic couple of weeks. I hope you are getting some rest and some "fun time" in when you can do so.

:hug:
DejaVu


Hi there.

Today was his first day out since he has come home from the hospital. We took a bit of a walk and he wanted Chinese soup for lunch and two egg rolls. I mean, this man can EAT. lol

Seems to be healing up nicely. What else can I ask for?

I really thought this was going to be it because when they mentioned the word septic and I looked it up I said to myself "uh oh".

So we shall see what the urologist says on Wednesday.

Will update.

Love ya, Melody

ger715 09-12-2015 10:44 PM

Well Melody,
 
While a little appreciation would be nice; I think a lot of his coming along so much better than anticipated has been the care of a loving wife; even at times if she feels like "bopping" him for a lack of a better term. Who knows, that might be what he needs; maybe a light "bop" would do.:D


Gerry

MelodyL 09-12-2015 10:49 PM

Quote:

Originally Posted by ger715 (Post 1170698)
While a little appreciation would be nice; I think a lot of his coming along so much better than anticipated has been the care of a loving wife; even at times if she feels like "bopping" him for a lack of a better term. Who knows, that might be what he needs; maybe a light "bop" would do.:D


Gerry

I completely agree with you (and so would Alan if he wasn't so THICK),

lol

Melody

DejaVu 09-20-2015 06:22 PM

Hi Melody!

Have been thinking of you and of Alan.
I hope all is going well, things are stable, you have caught up on some rest and are enjoying life!

:hug:
DejaVu

MelodyL 09-20-2015 08:31 PM

Quote:

Originally Posted by DejaVu (Post 1172369)
Hi Melody!

Have been thinking of you and of Alan.
I hope all is going well, things are stable, you have caught up on some rest and are enjoying life!

:hug:
DejaVu

Its hard to believe but so far so good.
Thanks for all the warm wishes. Much appreciated.

Melody

bluesfan 09-20-2015 11:34 PM

Hi Melody
Glad to hear things are going smoothly at last - you deserve a break. Hope it continues that way for a good long while. :)
bluesfan

MelodyL 10-01-2015 11:58 PM

Quote:

Originally Posted by bluesfan (Post 1172448)
Hi Melody
Glad to hear things are going smoothly at last - you deserve a break. Hope it continues that way for a good long while. :)
bluesfan

Hi everybody.

Just wanted to update and perhaps get some feedback. Alan has seen the urologist twice since he had the infection (turned out it was e-coli) and pneumonia. God Bless this man but he checked out A-OK and his lungs are clear and his urologist (we just saw him a few days ago) said "we tried to grow a culture and took blood and there is absolutely no more infection in his body and no signs of pneumonia'. So I thought I could breathe.

Then he said "We have to wait a few months and then we'll do a biopsy" I looked at him and said 'oh, you are definitely going to do a biopsy". (Because Alan had atypical cells which they found during the the TURP and he said they MIGHT do a biopsy after he heals (which is about 3 to 4 months).

So I said "but you weren't sure you needed to do a biopsy" and he hits me with 'Well, he has transitional cancer cells'. He then proceeded to explain to me that when they do a biopsy they need to take samples from different places (I know what this means). I looked at him and said "Oh, you need to see if it's age related cancer or Prostate Cancer". He said "that's exactly right". I then asked 'What if it's aged related cancer, what do you do"? He said "nothing'. I then said "What if it's prostate cancer, what do you do?" and he said "Oh, we just do radiation and that's that, it's no big thing"

Well, I looked up this Brachytherapy and while it's no bigee, I get that there's no danger of me getting radiation from Alan, that is not why I am writing (and I wrote to Glenn and he will probably see my question here also).

It seems that when they send a man home after he gets seed implantation, they put him on Flomax.

Alan can't take Flomax, that's why they did the TURP. It seems that men need a little help in the urination department after he gets brachytherapy.

So if a man cannot take Flomax (because if he takes it he will faint and I'm not going through that again, with broken noses and paramedics and hospital stays, I simply cannot do that, it's all on me and well, you know what I mean)

I did not know that (about the Flomax after prostate surgery) and yeah I know, I'm looking way into the future because he didn't have the biopsy yet but he's going to and I have OCD, so I need to plan stuff.

So if anyone knows what they put men on (when they can't take Flomax) to help them pee, I'd sure like to know what I will be facing.

Alan presently is on Finasteride and will be on it till November 1 and then one month off it. Then we see the urologist on December 2nd and while he is in no rush to do any biopsy and he believes Alan has age related prostate cancer, I myself do not know this and I would like to know what, if any, he might put Alan on to help him urinate after a possible seed implantation.

I'm not neurotic yet but believe me, when this is all on one's shoulders, one needs to prepare. I do take one day at a time, and I do have friends but honestly, I can't talk about this with any of them. So that's why I come here.

If anyone has any input, please let me know.

It gets hard sometimes to have it all on my shoulders. I'm just enjoying the fact that he doesn't have orthostatic hypotension anymore, due to Flomax. He's not on it at all and I don't want him to have to be taking it again.

Thanks much

Love you all,

Melody

Hopeless 10-02-2015 12:42 AM

Hi Melody,

Thanks for the update and sorry to hear the news. I have some people I can ask that might know. They worked in oncology and did the seed implants on patients like Alan. Not sure if they will know about the AFTER meds, though, but I will ask. They worked in radiation oncology.

So glad you stay on top of things. It is better to seek out all the answers BEFORE and be prepared. Good for you.

MelodyL 10-02-2015 05:27 PM

Quote:

Originally Posted by Hopeless (Post 1174946)
Hi Melody,

Thanks for the update and sorry to hear the news. I have some people I can ask that might know. They worked in oncology and did the seed implants on patients like Alan. Not sure if they will know about the AFTER meds, though, but I will ask. They worked in radiation oncology.

So glad you stay on top of things. It is better to seek out all the answers BEFORE and be prepared. Good for you.

Hi there. Thanks so much. I have heard from Glenn and he said there are other meds (other than Flomax) that they can give him.
And thanks for asking the people you know for some additional info on seed implantation.

Much much appreciated. Who knows? he might need it, he might not.

He doesn't seem to care. But I do. I want to know what I am facing.

I am now going down to sit on my landlord's couch and get hysterical watching her go all oooh and aaaaah while watching QVC.

lol

Thanks much, Melody

MelodyL 10-17-2015 10:28 PM

Hi everybody.

Just wanted to update you all on what's been happening to Alan.

His foot ulcer returned (because he neglected to change orthotocs in his custom molded shoes). He has had this foot ulcer on and off for years. We even went almost a full year without it recurring but this year, well, lots of things were happening.

I was doing what I always do, wash with saline solution, add solicite or medi-honey, and then put gauze and wrap. I would do this once a day. I knew it wasn't healing and I was right. We went to podiatrist last Tuesday who said "He needs Iodosorb". It's extremely pricey but we had no choice.

Since last Tuesday I've been applying it twice a day and changing his bandage. The doctor sent him home with a Cam Walker. He doesn't put his foot on the floor.

Next Tuesday we go back to the podiatrist and from there we will go to Hanger Clinic (the people who made his most recent custom molded shoes and orthotics) and they will cast him for yet another Crow Boot. We've been down this road almost 8 or so years ago. The Crow Boot from that time cannot be used again. His foot has changed.

So hopefully his insurance (because he's diabetic) will cover this Crow Boot and hopefully he will heal. I don't know how using a Cam Walker or a Crow Boot will help this ulcer heal. It's off loading. I know this. But he's still walking on his foot so how on earth can a foot ulcer heal (unless a person is COMPLETELY off his foot) when wearing these things.

He has had boots up the kazoo for the past 9 or so years. The Crow Boot was the one that, with continuous wear), his foot ulcer healed. That's when he began to wear custom shoes with custom orthotics. But he has to remember to change the orthotics every 4 months.

So we cross our fingers and toes and hope that this thing heals. In a few months, he will then have to go for a biopsy of his prostate.

I'm doing it all now. I don't know how i do this. But there is no one else so I have to do it. I'm just happy that because it's 47 degrees outside here in Brooklyn, NY, I have a landlord who gives plenty of heat. Thank god for that.

We have to be grateful for the little things in life.

And I am.

Good Night. Will update you after we go to podiatrist next week.

Mel

Hopeless 10-17-2015 10:49 PM

Thanks for the update.

Have they ever treated Alan with hyperbaric oxygen for his foot?

Wishing you and Alan the best and a quick improvement with his non-healing wound.

I will be looking forward to your next update.

MelodyL 01-26-2016 11:43 AM

Quote:

Originally Posted by Hopeless (Post 1178164)
Thanks for the update.

Have they ever treated Alan with hyperbaric oxygen for his foot?

Wishing you and Alan the best and a quick improvement with his non-healing wound.

I will be looking forward to your next update.

Hi all.

Well we just endured the Blizzard of the century here in Brooklyn, NY. Alan has been going nowhere because there is no where for him to go. Usually I join my friends at Dunkin at night (I don't eat anything I just sit with them). It's my release. Anyway, his ulcer is all cleared up. The podiatrist wants him to continue to wear the crow boot until he is seen again. He can't be seen because we are housebound due to the snow. So he can't go anywhere. He wears an off loading shoe in the house. I check the foot every day. It's all healed. His next appointment is god only knows because the side of my house is like a mountain but I get to go out and go around the back into the driveway, then onto the street, then down to the avenue to shop if I need anything. Alan can't do any of this because of the narrow spacing, his need to use a rollator and he has no snow wear.

Now here's my next update. Alan took a PSA test 10 days ago and it was faxed to his urologist and we have an appt on Feb 3rd (if we are not snowbound of course). This appointment (as worded by the urologist). "Let's see what his PSA is and that will determine if he needs a biopsy of his prostate"

I just called our doctor and one of the girls there gave me the PSA number. It was 2.18. I forget what his previous PSA was but it was around that number.

I just texted his doctor and asked him the following question "Does a PSA number of 2.18 indicate that Alan will need a prostate biopsy?"

I am close to our doctor and we text back and forth. I am very lucky in that vein and I never abuse that privilege. We are also FB buddies. Imagine that!!

So I am putting it out there. I know that doctors order tests for various reasons but if Alan does not need a prostate biopsy, he doesn't want one. I told him "You have the right to refuse anything you want to refuse". His uro had been saying "He might have age related cancer, or actual prostate cancer, the cells can go either direction, blah blah". I get this.

So guys, he's peeing fine. Has a good stream. Doesn't get up all night to pee. Just pees like a regular man pees (sorry to be so blunt).

So what do you think the urologist will say? Do you think the psa of 2.18 is indicative of a prostate biopsy?

Thanks very much to all of you

Sincerely, Melody (aka Sproutlady)

UPDATE UPDATE UPDATE.

Just found his previous PSA. It was 2.41

MelodyL 03-15-2016 04:59 PM

Quote:

Originally Posted by Hopeless (Post 1178164)
Thanks for the update.

Have they ever treated Alan with hyperbaric oxygen for his foot?

Wishing you and Alan the best and a quick improvement with his non-healing wound.

I will be looking forward to your next update.


Hi all.

I want to run this by you. At his most recent urologist visit the doctor said "you know they have something new and instead of a prostate biopsy we can do an mri" I said 'oh, so it's not invasive" He said 'Exactly"

Well, they sent him for the mri. He came out in 30 seconds. Because of his neuropathy and twitching they could not do the test.

So tomorrow we keep our urology appointment and we will find out if the doctor thinks he should go for a prostate biopsy. I ran this by his primary care physician who said "He does not need a prostate biopsy, his PSA went down from 2.41 to 2.18 so he does not need one'. I'm glad I ran this by Alan's doctor.

Alan doesn't want a prostate biopsy, his doctor doesn't think he needs one, but this urologist is very thorough and I know we have the right to refuse this but what can I say, how do we word it if indeed, this urologist says: "Well, there were those pre-cancerous cells and while I do think it's age related, I feel........"

Please, people, tell me how to word this. Thanks

Melody
And if you want to hear what we've been doing regarding his psoriasis, I just posted on the auto immune forums. I've got him on Flax seeds and other Omega 3 foods.

Thanks much

Melody

Hopeless 03-17-2016 11:46 AM

Hi Melody,

I wish I could help you with the "wording" of your response should the doc strongly advise a biopsy and you and Alan wish to refuse. YES, you (rather Alan) has every right to refuse if he desires that option.

I know exactly what you mean about the "wording". I am in a similar position wishing to refuse a medication prescribed for me that has too many "complications" for my liking but the doctor is insisting it is absolutely necessary. (Also, cancer potential related.) I attempted to state my reluctance during the office visit when the drug prescription was being written. I seem to lose all "tact" and come across as not trusting his medical expertise. THAT was NOT my opinion. I DO trust his judgment in his specialty and if I did not have so many "other" conditions, I would probably have little concern about taking the med. BUT, reading the literature on it, it will affect my other medications for other illnesses and conditions and I am not as sure as the doc that the med is really as necessary as he feels it is under my overall health.

Sometimes I think "specialists" get tunnel vision and do not put as much emphasis upon conditions and illnesses that are outside of their specialty expertise.

I guess I would suggest to you, that you state your feelings to the urologist in the same manner you expressed it to us, here.

It is sad that patients have to be concerned with the "ego" of the physician and not want to "step on their toes". Yes, they have more medical training and knowledge than the lay person, but ultimately, it is the decision of the patient, after being well informed. Sometimes docs just want to cover all bases and be sure they have not left something unchecked.

Bottom line, tactful communication is NOT in my treasure chest. I hope someone with those skills will respond.

I think your post is well stated and I would state it just that way if confronted with the need for a response.

Best wishes to you and Alan.

bluesfan 03-18-2016 12:38 PM

Quote:

Originally Posted by Hopeless (Post 1204782)
Hi Melody,

I wish I could help you with the "wording" of your response should the doc strongly advise a biopsy and you and Alan wish to refuse. YES, you (rather Alan) has every right to refuse if he desires that option.

I know exactly what you mean about the "wording". I am in a similar position wishing to refuse a medication prescribed for me that has too many "complications" for my liking but the doctor is insisting it is absolutely necessary. (Also, cancer potential related.) I attempted to state my reluctance during the office visit when the drug prescription was being written. I seem to lose all "tact" and come across as not trusting his medical expertise. THAT was NOT my opinion. I DO trust his judgment in his specialty and if I did not have so many "other" conditions, I would probably have little concern about taking the med. BUT, reading the literature on it, it will affect my other medications for other illnesses and conditions and I am not as sure as the doc that the med is really as necessary as he feels it is under my overall health.

Sometimes I think "specialists" get tunnel vision and do not put as much emphasis upon conditions and illnesses that are outside of their specialty expertise.

I guess I would suggest to you, that you state your feelings to the urologist in the same manner you expressed it to us, here.

It is sad that patients have to be concerned with the "ego" of the physician and not want to "step on their toes". Yes, they have more medical training and knowledge than the lay person, but ultimately, it is the decision of the patient, after being well informed. Sometimes docs just want to cover all bases and be sure they have not left something unchecked.

Bottom line, tactful communication is NOT in my treasure chest. I hope someone with those skills will respond.

I think your post is well stated and I would state it just that way if confronted with the need for a response.

Best wishes to you and Alan.


Hi Hopeless and Melody

Like you I sometimes have difficulty putting into words exactly what I need to say when I'm in the doctors office - (time pressure, short-term memory problems and fatigue all contribute).

Sometimes if it's something that I feel is important or complex I will write a letter to the doctor prior to an appointment so that they have time to consider my position before we discuss it.

Also if I feel there is any misunderstanding during an appointment I will write a letter after, either "seeking confirmation" or claiming "confusion on my part".
The effect of this is that the doctor actually pays more attention to my input.

In this day and age, when communications are rushed or limited to the doctor looking at only what is current on the computer screen, having an old-fashioned letter, outlining your position, and including any relevant medical history (eg adverse drug effects), can be constructive.

I would also suggest to try and keep any written communication as short and straight-forward as possible - keep emotions, speculation, anecdotal internet information etc out.

Melody - All the best for reaching a mutually agreeable plan with the doctor, for ongoing treatment for Alan. :hug:

MelodyL 03-18-2016 05:10 PM

Hi to you both. The appt was this past Wednesday. I walked in with a bag of my sprouts. The doctor's eyes lit up. He's a good guy and a straight shooter. So I'm waiting for the NEWS. He takes him into another room, comes out and says "we did a urine test, his urine is still a little dirty" (Alan's a non medicated diabetic who is so controlled by me and his diet he hasn't had anything BAD in two weeks). I looked at the doctor and said "But his urine is a pale color". He says: Oh, no he doesn't have an infection, but he still has colonization, remember when he was hospitalized for that ecoli UTI, well, there is still some colonization going on and we want to nip that in the bud" Since I trust this guy and he has kept Alan's prostate alive and kicking since the Turp, I'm not going to say 'no, he ain't taking no anti-biotics".

So he prescribed a 30 day regimin of Keflex. I give him Kefir, we ordred the probiotics which should arrive in a few days. All in all, this man eats like a champ. Absolutely nothing refined. I grow about 70 percent of what we eat (organically). He seems to love it. But he does get that look and says 'oh, I miss ice cream, can't I even have the no sugar added". I said 'if you look at the ingredients in those things, there are things you can't pronounce, so no you are NOT eating any of that stuff, go and have an apple" So he does

I have resorted to making the most delicious no sodium curried chicken with tumeric and cumin and I have it read at night when he gets the munchies. He eats it and goes 'OMG, this is great". So thank god I found something for this man to eat. He lost weight, and the doctor was very pleased.

Oh, about the prostate biopsy. As the doctor was passing by my chair I looked at him and said "no prostate biopsy". He said 'no, don't worry"

They also took blood for the PSA Test.

They seem to know what they are doing, and I definitely know what I'm doing as far as growing food and feeding this man. Someone (very kind person) mailed me some holistic cream and the container says "Calendula Offianalis Cream" which is supposed to help with skin conditions. This is day two for that one. She also sent him some Hypericum Perforatum Cream that MIGHT be helpful for his neuropathy. He tried it last night. Did nothing. Today my back was killing me, I put some on my back, guess what? It helped me.

Hey, whatever helps, I'll do it. These containers are 1.5 oz of the creams. People are so kind in this world.

So, for the present, he's not getting any biopsy, we see the uro guy next month. He's eating an anti-candida diet, he likes my sprouts.

OH, FUNNY STORY.

Alan whispers to me earlier "Mel, I think I had a parasite" I said WHAT??? I then asked him "Did you grab your stomach, did you have diarrhea?" He said:

"No, but there was this stringy thing in the toilet bowl when I went to the bathroom." I burst out laughing, went over to my rack where I grow my food and held up the bean sprouts and pea shoots, and said 'Did it look like this?" He said "oh"

Oh, indeed!! rofl.

I know we have photos on this forum. I'll try and upload photos so you can see what I grow in my house.

Thanks guys, Melody

MelodyL 03-18-2016 05:19 PM

Just uploaded a photo
 
Hi there. Just uploaded a photo which shows you what I'm growing in my living room. I use a power sprayer which you pump and then press the button and it waters in a continuous motion. I do this twice a day.

I grow my bean sprouts (there's a photo of my pea shoots in my album) and other stuff in my kitchen. I try and do things as neatly as possible. All organic and they taste fabulous.

Then I go to Dunkin Donuts at night and stare at everybody who eats all those sugar filled creations. Alan could never do that. They try and send him home donuts. I say "Please don't sabotage us'. We all laugh.

Regards

Melody

bluesfan 03-18-2016 09:40 PM

Melody

Your sprout 'condo' is way cool! :cool:

Glad to read you're holding your own with the doctors.

MelodyL 03-22-2017 04:08 PM

Hi there.

Just wanted to update (aside from my getting hit by a car in late December, and having a metal rod and pin implanted and then going into a nursing home for a month (this is ME I'm talking about), right now I have a question about Alan's visit to the urologist next week.

Alan urinates just fine. But....at the last urologist visit (6 or so months ago) he had a bit of urine retention and the doctor wanted to put him on one of those prostate pills. I looked him in the face and said "you know he can't take any of those pills, he takes one step and he faints because it drops his blood pressure" He said "okay, we'll check it again in 3 months"

Well, it's been over six months because I got hit by a car, was in a nursing home and Alan was all alone in the house, caught some kind of virus that left him in distress and I couldn't reach him from the nursing home so I sent my friends up to my place to check on him (his own family refused to do this) and my friends found him so bad off they called 911 and rode with him to the hospital. He was severely dehydrated but was stabilized and the next day, he was released. ???????

Because this happened again one week later (as I was being released from the hospital) (this is mentioned on another thread but I don't know if any of you know this). At the exact moment I was released from the nursing home, Alan could not get off the couch in the lobby and they had to send an ambulance for him. Same problem. Dehydration. They (this time) kept him over night. Sent him home the next day, filthy, dirty and never cleaned his underwear. He took a cab home. When I saw how he came in the door I almost died. I put him to bed (me with a broken hip yet, and nursed him for 2 weeks, giving him Spirutein shakes three times a day. He had no protein in his body. Took a while but he passed that episode.

Now we come to why I'm writing. His urologist called and said "I see that Alan postponed his appointment till June". I said that we are going to all these appointments and we can't afford the co-pay and besides we spent yesterday with Dr. Fred (our primary) who is also a dear friend. I explained it to Dr. Fred about why the urologist wants him to come in. It's to do a urine retention test and if needed, TO PUT HIM BACK ON ONE OF THOSE PROSTATE PILLS. Dr. Fred knows why Alan doesn't want to go back on those meds. He doesn't want the risk of falling to happen again. I mean three times, three ambulance visits, a TURP. Give me a break.

As I'm explaining all this to the urologist he says 'I understand but we need to see if he's the same or retaining any MORE urine than he was the last time. When I asked him what would happen if he WAS, he just said 'Well talk about that when he comes in". THEY NEVER TELL YOU ANYTHING.

And he said "we care more about Alan's health than his copay so come in anyway.

So Alan is going in next Wednesday and they'll do their ultrasound wand thing when they measure urine retention.

What I'm asking here is WHAT ARE OUR OPTIONS if (even though he has a good stream), he is retaining urine?

He absolutely refuses to be catherized again (he got a UTI last time and got ecoli and pneumonia). Can't say I blame the guy one bit. And if he takes the meds, he could fall.

So are there any other options? Need some advice here. I have explained to him the importance of doing Kegel exercises to maintain good muscle control. I think he heard me this time.

Thanks to anyone who can help me.

Melody


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