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You may have read my post about my husband‘s recent hospital stay due to a serious UTI causing sepsis. Yesterday we had a follow up visit with his urologist. We came away feeling like we had been hit in the face with a 2 x 4.

Basically, he said that we are in a "no good solution" phase with my husband‘s health. Having had a spinal cord injury for close to 50 years now, he has experience… lots of experience…with urinary tract infections.

What this doctor is telling us now is that in the future, if my husband gets a urinary tract infection, we have a decision to make…

1) Take a sample to the doctor and get a culture done to identify the bacteria and treat with antibiotics, or

2) Do not treat.

If we choose number one and treat the infection with anabiotic‘s, we are setting up a situation where the bacteria will become resistant to the antibiotics, the more he takes. And he will eventually have a urinary tract infection that no anabiotic will treat, which will almost certainly cause his death.

If we choose number two and do not treat the infection… If we are unable to manage it and get rid of it without antibiotics, that very infection could also cost him his life.

We have been aware of these medical realities for sometime, but it seems as though we are getting closer and closer to one of these inevitabilities.

I guess the reason that it is really a bit of a smack in the face at this point, is that although the doctor did not say it in so many words, he kept apologizing. He kept saying that there are two choices that we can make, and that the outcome is the same whatever we choose. I got the impression that he was very concerned about the type and the amount of anabiotic that my husband was given in this last hospital stay. He seemed to think that this could be a fatal situation for my husband sooner than later.

I guess what I’m looking for is anyone who might have some information / suggestions about alternatives.

My husband and I have spent quite a lot of time with homeopathy/natural alternatives to different health issues. But after our children were mostly grown, and with less financial resources, we have mostly used modern medicine.

I give him probiotics, cranberry pills and vitamin C every day. I take amazingly special care in being as clean as possible without a surgical room when I use a catheter to empty his bladder.

I guess I’m looking for any type of thing… any advice that anyone might have regarding other things that we could do.

I have tried to google a specialist in treatment of patients who are many years post spinal cord injury, but I almost always end up with references to doctors who treat spinal cord injuries in the hospital immediately after the injury, or recently injured people. I can’t even figure out who to go see; a urologist, a physiatrist, or who?

I guess I am resistant to accepting this notion. As you probably can tell by my situation with my husband pertaining to what we have been through in our marriage, I really can’t believe that there is "nothing else that can be done". I have had instances in my life where that perspective did not serve me, and other situations where it has served me very well…the not giving up thing.

The urologist told us that he very much prefers to go the "no antibiotics" route. He says that we can take cultures to him to be tested, but that he really doesn’t want to test them because he "doesn’t want to know". I’m wasn’t sure what that meant, but a friend who is a nurse said that it basically means that since there is no real way to resolve the issue and the impact on his life…no matter which route we go… knowing what the bacteria is wouldn’t change anything.

My husband told me yesterday when we got home from the urologist appointment, that he wants to take the antibiotic route. I asked him if he understood that the next round of anabiotic’s that he takes could possibly cost him his life. He answered "Yes". After a 1 to 2 hour conversation, he held his stance. He was not emotional about it, and didn’t seem to be in denial about the situation. I even asked him, even if our son was not able to get out of jail, and therefore never able to see his dad again, would he still choose using antibiotics and risking resistance to the point of a costing him his life. "Yes". When I asked why he had arrived at that decision, without pause, he responded, "Quality of life." And in truth, either route we take could have the same result.

There is no doubt that whatever he decides while being clear minded, which he is at this time, I will totally implement if he’s unable to, whether or not I agree. I’m pretty sure he trusts that fact.

But in my mind I’m going back to the homeopathic doctor and to anything I can find that might help with the smaller urinary tract infections. The ones that would not take such dramatic antibiotics.

I’m just looking for something more. And this is such an invaluable site with people having so many experiences, I thought maybe I could find some help.

Respectfully I am requesting that my situation resulting in me being on this site, and comments I have made regarding troubles between my H and I, or things I have come here complaining about, not be discussed on this particular topic. This is simply a wife hoping for some kind of insight into something that I haven’t thought about yet, that could give us an upper hand in this horrible situation.

I request that it be truly "off topic".

Thanks so much.

[This message edited by WhatsRight at 2:52 PM, Wednesday, June 8th]

My thought would be a support group--is there such a thing?

But my other thought would be that it is his life. Making sure that what days he has left are comfortable and that he is secure in his treatment decisions would be top of mind for me.

Maybe this will help you. Years ago, as a young woman of 18, I remember talking with my terminally ill grandfather. I never knew my grandfather as anything but somewhat frail, him having lifelong heart problems and having a couple of fairly serious heart attacks when I was much too young to remember/before I was born. He didn't use tobacco or drink--I guess he was one of the unlucky ones.

But we're having a conversation about a month before he passed and he told me he wasn't afraid to die, and that while he knew all of us would be sad and miss him, but was not afraid of what came after. If your H is open to it, maybe spiritual counsel would help as well. Ever since that conversation, I've been much more accepting of death as a part of life.

Cat

Oh, thanks so much for this. Awesome for you that you were so close to your grandfather.

I actually had the same conversation with my father when it was getting close (a few months) to his death.

My H and I are both Christian and have a church family. I don’t believe "fear of death" is the actual issue. My H seems satisfied with his decision and is not at all agitated or freaked about it. As far as I can tell. Slept like a baby last night.

I most certainly dread his death, if it comes before mine, but right now I am trying to implement whatever might be available, with modern medicine, alternative medicine - whatever.

I do want to clarify that we have no reason to believe that his death is imminent. It’s just that, depending on his next UTI, and how resistant it is to antibiotics my H has had in the past, it could be fatal. And he is most certainly headed in that direction. His decline is getting steeper and his plateaus are briefer.

I’m scared and just want to cover all the bases - do as much as we can. After that, it’s out of our hands.

WR, Maybe reach out to a naturalist doctor? They are fairly easy to find here in Northern California (no surprise) and/or a homeopathic doctor. My former BIL was a physiatrist who worked mostly with homeopathic solutions for veterans.

As for the damned if you do or don’t situation, my mother had that. She had a very aggressive case of late onset RA that was rapidly crippling her. Then she found she had colon cancer. After the cancer proved to be difficult to resolve, she was told they could basically treat one or the other, but not both simultaneously. And she evaluated her quality of life and opted for no treatment for either condition. She was 70 and no other underlying conditions at all- prior to the RA she took no medications at all. She was at peace with that decision until the very very end when her lizard brain fought hard, but of course there was no turning back at that point. And it isn’t what she really wanted. It was very hard to be there for her, but I have no regrets and actually found it to be one of the greatest privileges of my life.

I respect that you are committed to the care of your H and are seeking all options. Please remember to take care of you— his choices affect you and you need to process that. Being a caregiver is hard under the best of circumstances, and you have other issues that make it even more challenging. (((Hugs))) You are a really good person.

I’m scared and just want to cover all the bases - do as much as we can. After that, it’s out of our hands.

And the harsh reality is that it just might be out of your hands now. I would recommend that you, especially, get some care for yourself. Put your own mask on first, as we say here.

Cat

Thanks so much for the input and kind words.

My mom, a tremendously sweet woman, was also a total pill at the end of her life. It wasn’t easy to keep her at home - my sister and I - and she got some meanness at the end, but we wouldn’t change being with her.

Sadly, the southeast isn’t overrun with homeopathy and natural medicine. And ours moved to Florida. 😒

I do plan to look hard to find one here.

I know there are things that I can do.

He loves meat, and I am going to try to really cut down on that. He doesn’t eat fruit and vegetables much so I’m going to start juicing again like we did when our boys were young. I’m going to give him
alkaline water. Etc.

I got the impression that he was very concerned about the type and the amount of anabiotic that my husband was given in this last hospital stay. He seemed to think that this could be a fatal situation for my husband sooner than later.

It's not just that you are selecting for resistent bateria, it's that as you move up the chain of antibiotics and dosages to ones that work the side effects can become almost as bad as the UTI you are treating. Promoting C. Diff in the gastrointestional tract for one.

I would highly suggest finding an agency that offers palliative care. It's different from hospice in that you can seek aggressive treatment, but they help guide you through that process. They maintain contact with your H's primary physicians and help guide you through his immediate needs as they present. Any sort of long-term chronic illness that can be life-limiting.

Many palliative care agencies are affiliated with a hospice agency, so if/when it is determined that hospice is wanted or needed, the the transition from hospice care to palliative care is almost seamless.

In the meantime you can continue to research other options if that makes you feel better.

Yes, I think palliative care would be helpful. It would present a united front in dealing with whatever issues he might have. Also, it would provide me with someone to call when I’m not sure what to do about a certain situation. And the fact that people might could come to the house to help would be awesome.

It was suggested to us by a retired physician in our church years ago. My husband just can’t seem to wrap his head around it. He doesn’t see a difference between palliative care and hospice care. He believes they both have to do with people who are dying, and he doesn’t consider his situation a "dying" thing. He understands that under certain circumstances he could die, but he doesn’t consider himself in the process of dying. And if it is going to upset him, then I’d rather him choose whatever would make him feel more comfortable.

We are sad that our primary care physician and dear friend for over 30 years will be retiring in December. So my husband basically has one more visit with him in October. We have no idea who will be our primary care physician after December.

I don’t want this to sound like our situation is more "special" than anyone else’s, but it is a bit difficult to find doctors who sufficiently understand the nuances of spinal cord injury. And when they do not, it is always a crapshoot as to whether a doctor is willing to listen and be informed by the patient.

The last time I needed to speak with our doctor, he didn’t happen to be the "on call" doctor at his practice. So we spoke with another doctor. I was so disappointed when he got on the phone, but as it turned out it seem like he had a good grip on the implications of spinal cord injury and spoke in an educated way about autonomic dysreflexia, and intermittent cathing, and difficulty in reading symptoms, etc. So maybe we can find out who that was and see if our doctor thinks it would be a good fit.

You guys need a Palliative care dr to help outline goals of care.
Please reach out to your PCP and ask for a referral.

Also stop with the garbage alkaline water. That is nonsense. Zero scientific proof it works and the stomach is so acidic that it is neutralized upon hitting the stomach. You are just pissing water away. Rather make sure he is getting 8 8oz glasses of water daily. At minimum.

Yeah, I can see how palliative care would be good at this time, but he just won’t do it.

He drinks between 4-5 bottles per day of water - 24oz each.

We expressed concern re c-Diff while at the hospital. My mother in law died from cDiff after lots of antibiotics in the ICU for bilateral pneumonia. The dr told us the antibiotic he was given this time was not considered especially concerning re cDiff. (Those are my words-not his. I can’t remember exactly how he put it.). I am watching him closely for any of the symptoms.

That makes sense about the pH water. I have not given it to him yet. Just learned about it today from a friend. But if that is the case, how does his diet help with making his urine more alkaline? If they both hit the acidic stomach? So much I don’t understand.

For a number of reasons, I haven't been posting much lately but I have been following your posts. I am so sorry about your son's situation and for the pain it has caused (and is causing) you and, of course, for everything that he's feeling and going through. And now you get hit with your husband's latest health issues. I have a couple of thoughts I'll toss out.

My Dad was the strongest, healthiest guy in the world other than the damage to his brain from all his years of drinking. But one day, he fell off a ladder and hit a downward spiral of one thing after another. One of those things was C-diff. He was fortunate and did recover but it was scary, I won't lie. But from what they all told me, everyone knew what it was the moment they got near him - apparently the odor is unmistakable (they'd cleaned him up by the time I got there). So not sure that helps but tuck it away in the back of your brain for the day it might be a useful clue. And I'm not sure if it's always the case but, trying to be delicate here with my words, in his case it was explosive.

I hesitate to call it a tip exactly because I also eat meat and candy and bread and ice cream, etc., but I'm a firm believer in fruits and vegetables being the building blocks of life, the nutrients in them are what build us and what heal us and what protect us. And by that I mean real fruits and veggies. I realize you have to watch your dollars but I think it's worth spending the extra money to get real cranberry juice, not the kind where all the fiber and other things that make cranberries so healthy have been processed out. Or, as you said, make your own. I'm a firm believer that eating our fruits and veggies whole is what gets us the whole shebang of what they offer and we don't get the full benefits if we don't eat them whole. There are phytonutrients in f&v that haven't even been discovered yet and so the argument that, for example, maybe our bodies can only utilize the vitamin c in the apple if we also get the other phytonutrients with it seems to make some sense. There's also a segment of researchers who believe heating the fruits and veggies past a certain temperature "kills" the enzymes in the raw foods that help in digestion. It's sort of why someone can eat cole slaw by the gallon and be fine but eat one piece of cooked cabbage and has bloating to the nth degree. I've also read that as we age, our bodies produce less and less of the digestive enzymes we need to digest our foods so eating foods complete with their enzymes helps on that front. At any rate, I wonder if trying to get him to eat more fruits and veggies, even if you have to stir Cool Whip or mayo into them (I'm thinking Waldorf salad and broccoli salad, etc.), might help provide him with more natural immunity against UTI's?

And the good news is, even if I'm not correct about this, my "tip" can't cause any harm. Although since you said he doesn't eat many fruits and vegetables, maybe you should ease into it. Like maybe start with an apple a day cuz well,.....you know.

Sending virtual hugs for both of you and especially for your son. I think about him a lot and hope and pray it all works out for him.

[This message edited by josiep at 11:09 AM, Thursday, June 9th]

Thank you josiep for your post. I have missed "seeing" you here.

It is amazing that you mentioned my son. (Thank you! ❤️). I am sitting here in the courtroom waiting for him to walk through the door. Nothing is really going to happen today, just meeting with his lawyer for the first time and holding his case over to another court. But I think he wants me to be here, and tbh I haven’t seen him in over 7 months, and I just have to see him. I pray I hold it together. 🙏

I am one of those people who believe that high temperatures kill the nutrients. We tend to cook our food to death in the south. There is a joke that in the South, we have the healthiest drains, because of how we cook food in water and then pour the water down the drain 🙄

We are definitely going to juice. I’m headed to the store after court. I doubt I will ever get him to simply eat f&v, but when our boys were growing up we juiced every morning. And he loved it.

I think I am as aware as I can be about his risks from here on out. I am watching for cDiff symptoms so we can react quickly. The problem is that if we go to the hospital, I guess they would give antibiotics, and around we go. No way to know - that I am aware of - when that will cost him his life.

There’s really nothing to do except to fight for his health and wellness as much as we can for as long as we can. We have talked about this, and he is not afraid of death, or even intimidated at the threat of it.

On the other hand, I’m not ready, but I am mostly concerned about my sons. They have followed their fathers lead in stifling their emotions. And I especially don’t want my son who is incarcerated to lose his dad while he’s in jail when he can’t come to visit him at the end, or even attend the funeral. He has enough guilt regarding bad choices.

But enough of those thoughts. We’re just gonna do the best we can with what we’ve got. It’s all that we can do. And, by God, we’re going to keep our chins up while we’re doing it! (As much as is possible) 😊

WR,

My Dad was on a Cather for years. He was told that he would build up a tolerance to antibiotics as well. In Dad’s case it eventually turned into a kidney infection. Dad had what he called a ream job and is off the Cather. I can’t see why your Dr. would say no antibodics, the resulting infection would be painful.

It just doesn’t make a lot of sense to me. I did read eating chicken can cause more uti’s.

I’m not sure exactly what a "ream job" is as your dad called it, but I did Google it and… I’m guessing what I found was not what your dad had! 😳 But I’m so glad it was helpful for him.

Because my husband has no real feeling in his bladder and his bladder sphincter is paralyzed along with the rest of him, I can’t imagine a situation where he would be off the catheter. He does have the option of a Foley (or indwelling catheter) but that brings increased risk of infection.

With regard to not wanting to give my H antibiotics with UTI’s, the urologist is concerned about the bacteria becoming resistant to the antibiotics. Then, if he gets a UTI, the antibiotics would not be able to kill the bacteria.

So the choice is to treat the infections and with every dose, reduce their effectiveness against the bacteria…eventually creating a "super bug" that cannot be defeated and will take his life —- or not give antibiotics for UTIs, and hopefully get through them without the antibiotics. But, of course, eventually there would be a bacteria so badass that he couldn’t survive it without antibiotics, which would also cause his death.

Like 2 different routes to the same unthinkable destination.

I totally "get" both alternatives. My husband and I have always leaned toward homeopathic medicine rather than modern medicine, So not using antibiotics could be an option. It would at least work as long as the infections were small and we could wash them out with lots of water and other measures. The downside is is that he would feel miserable with those infections, and of course, eventually the badass infection would come along that he would not be able to fight off.

The route of taking antibiotics would certainly help my husband feel more comfortable with each infection, but as the bacteria build resistance to the anabiotic, eventually that badass bug would come and because it is used to all of the antibiotics and has figured out how to resist it, the anabiotic would not work, which would also causes death.

So it seems likely that this situation will take his life at some point.

Totally frustrating…totally sucks.

After speaking with my husband on several different occasions, he (we) have come to the conclusion that when he gets a less serious UTI, we will try our best to flush it out naturally. But if it does not improve, he will want antibiotics given to him to keep the infection from getting so bad that it could kill him, and to be able to feel relief from the pain.

Of course, the price he might have to pay for getting that relief from the pain could be his life. But if he left a UTI untreated and it got very bad, it could take his life anyway.

CRAZY MAKING!!!

I’ve spoken to so many different healthcare providers… Doctors, nurses, people who have been through this type of situation, and there doesn’t seem to be any way out of this "Catch 22".

I think my husband‘s plan makes as much sense as anything else, and I will be supporting it. I have doubled and tripled my efforts to be certain that catheters are as close to sterile as possible, and that I keep that area of his body is clean as possible. I will be working on his diet, and on supplements, and on paying very close attention to when we think a new infection may be starting. (Pain, appearance of urine, etc.)

Prayers and/or positive thoughts for him, please.

Thank you.

WhatsRight

I am so sorry you are in the difficult position. I have no advice but a Question, your husband has been quadriplegic for 50 years? I thought this was a newer injury from an accident that had happened more recently. I just read your story in your profile and see it was a diving accident.

You have taken wonderful care of him. You are amazing.

[This message edited by Gottagetthrough at 7:27 PM, Friday, June 10th]

I called my Dad and asked him about his ream job. It had to do with his prostrate, which isn’t applicable in your husbands situation. Prior he was given the option of no antibodics or antibodies with them reaching a resistance.

I read how not to die by Micheal Mcgregor, that is where I read about not eating chicken as it increases uti’s. Eating chicken may not be applicable in your husbands situation. I did read in it how to boost your immune system through various foods. I don’t know if that is helpful.

PricklePatch …

Yes, that sounds very helpful. I’ll order that book. I’m guessing the chicken is mentioned as a food to avoid large amounts of due to all the antibiotics they give them.

Gottagetthrough …

Thank you for that, but when we met, he was totally independent. And he actually took care of me in a way. He was able to travel alone out of the country, run his business, help raise the kids, etc. it has only been in the last 6-8 years that his body has started wearing out.

PS. And it will actually be 48 years ago this August when he broke his neck.

[This message edited by WhatsRight at 2:11 PM, Saturday, June 11th]

((((WR))))

No real suggestions, just lotsa hugs and love. I'm so very sorry that this phase of his life seems to be coming sooner rather than later.

Make sure that he keeps his dignity and that whatever treatment is or is not given is his choice. And let go. Just take things as they come. And also make sure to take care of yourself. You can't take care of him if you're running on empty!!

((((WR))))

Thanks Zen…

Today I saw a close friend, and I confided in her, even though I haven’t spoken to the boys yet. That was poor judgement on my part. They should take priority.

I’m trying to figure out how to tell them. I don’t really have anything to tell them, but rather the situation he is in.

I know that 2 of my sons will downplay this since it is not actually happening now. But my son who is incarcerated will FREAK.

I’m probably going to speak to them tomorrow.

🙏🙏🙏