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Author Topic: My pre-dialysis-days have finally come to an end...  (Read 78803 times)
SooMK
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« Reply #375 on: September 16, 2021, 11:24:53 AM »

So glad you are on the mend Kristina. I'm sure it will take a long time to recover. I hope being ravaged by the necessary antibiotics don't mess up your system too much. I know first hand how they kill the good with the bad. I hope this is the road back to your best health yet. Be well.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #376 on: September 17, 2021, 07:43:50 AM »

Dear SooMK and many thanks for your kind encouragement.
Unfortunately you are right and it might take me a long time to recover from this "episode" and unfortunately the antibiotics also "come along" with some not-so-nice side-effects, but at least I feel that I am on my slow recovery right now and try very hard to do my very best ... One day at a time ...
Many thanks again for your kind thoughts and I send you my best wishes from Kristina and please keep well. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #377 on: November 14, 2021, 11:20:44 AM »

... I was just going to answer MooseMom's lovely thoughts on another thread, when my health started to deteriorate a lot and hopefully it is not another Sepsis -Episode returning again?

Waiting for medical assistance/help and please wish me good luck, I certainly do need it.

Many thanks for your kind thoughts from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #378 on: November 14, 2021, 12:40:16 PM »

... I was just going to answer MooseMom's lovely thoughts on another thread, when my health started to deteriorate a lot and hopefully it is not another Sepsis -Episode returning again?

Waiting for medical assistance/help and please wish me good luck, I certainly do need it.

Many thanks for your kind thoughts from Kristina. :grouphug;

Wait, what?  WHAT?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
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« Reply #379 on: November 14, 2021, 05:52:43 PM »

Dear MooseMom and yes, there is another nasty "little UTI" taking place, but fortunately this time it was diagnosed well in time, I was put on lots of antibiotics (the very heavy cavalry this time), which gives me a much better chance to hopefully "get rid" of it eventually. The doctors want to really investigate this time why this is bothering so much on such a regular basis and I am very grateful for their care.
Please keep your fingers crossed for a little longer and many thanks again from Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #380 on: November 14, 2021, 08:22:53 PM »

Oh, dear!  I'm relieved to hear that you caught it in time because you surely don't want another episode with sepsis.  I hope the heavy cavalry will knock it out completely.  UTIs can become chronic, so I am pleased to hear that the doctors want to find out what is going on.

Thanks for posting, and our fingers will indeed be crossed.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
SooMK
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« Reply #381 on: November 15, 2021, 07:17:37 AM »

Oh no, Kristina! Good luck. UTIs have turned into my nemesis too.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #382 on: November 16, 2021, 04:00:03 AM »

Many thanks MooseMom and SooMK for your kind thoughts and please tell me SooMK, why are UTI's your nemesis as well? Do you also suffer because of "returning" UTI's?
I never suspected that a UTI could become so life-dangerous by quickly turning into a sepsis etc., if left without medical attention for a minute longer...? That certainly puts me under a bit of pressure from now on ... I was also told that because of the kidney-transplant as such, there is no longer a chance  to enjoy the luxury of a working immune system... I dare-say that before my transplant took place, I did not take such a possibility into account ... Of course, I was made aware of a compromised immune-system, but I was not quite aware of the life-dangerous medical drama of it ... After all, we do hope, don't we? It is definitely very complicated ... I also heard, that a sepsis can develop even from a tiny little paper-cut etc., all "things" I did not even have to think about "in the old days". I was also advised to regularly check-up on my temperature, as it could indicate a UTI etc.

I shall continue to do my very best and thanks again for your kind thoughts. The heavy "Cavalry" antibiotics are doing a very good "job" and I already feel a bit better again...

Many thanks again and kind regards from Kristina. :grouphug;
« Last Edit: November 16, 2021, 04:10:21 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #383 on: November 16, 2021, 09:02:02 AM »

I had a terrible uti in 2017. I ended up in the ER on IV meds. Took a lot out of me. The clinic said you need to see a urologist and he recommended hiprex as a maintenance. My system was pretty messed up with antibiotic side effects and at that time I wasn’t experiencing a uti so I said not right now. I started taking d-mannose, a supplement rec by my neph, although I know not all nephs are fans) and was clear for nearly a year. Then another one. My gyno was unavailable so my PCP gave me amoxicillin then recommended I see a urologist when that didn’t work. I went to a new doc and after a half dozen antibiotics with no lasting relief I gave up on antibiotics and the dmannose seemed to keep the symptoms under control. Eventually, after months, the infection cleared. I kept taking dmannose preventively but lowered the dose. Then about 6 weeks ago, another uti. I called my gyno and she prescribed macrobid which didn’t work. Then she prescribed ceftin which seemed to work fine. I thought it was gone. Then I started being really tired and then last week I had a fever. Called the clinic and now waiting for more drugs.

The NP said I needed to find a urologist who has treated transplant patients. She also said the labs need to be taken from the same place. The first urologist treats mostly cancer patients. The second urologist, I realize in hindsight was not a good fit. She would have me take an antibiotic only until the symptoms were gone. I live far from my clinic and have no local nephrologist. I’ll have to figure something out.

Sorry this is so long but you can see I feel your pain.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #384 on: November 17, 2021, 12:56:00 AM »

Dear SooMK, many thanks for sharing your thoughts and experiences and I do feel really sorry for your situation and I understand, we are practically “in the same boat”.

I am astonished, that your battle with UTI’s began about three years after your transplant in earnest, just about the same time when my struggle with “it” really became very serious as well. I ended up in the nearest ER, where I was put for 10 days on constant IV-antibiotics because of this resulting sepsis, with more antibiotics to be taken at home, twice a day, for another few days.
 
Frighteningly enough, when it happened again this week, I did not even notice “it” as such, as “it” was not even that obvious, but the doctors at the ER diagnosed “it” straight away and sent me home with lots of “heavy cavalry” antibiotics to be taken three times a day.

I don’t quite understand why this is happening, because “in the old days” I was not even a UTI-person and to my knowledge I have never suffered ever from a sepsis before. But since the transplant I have been suffering from UTI’s, and it first “introduced itself” directly after the transplant-operation, when I suffered instantly from two UTI’s, one after the other, whilst I was still in hospital, sharing a room and facilities with other female patients in the same room, with me being the only transplant-patient, which was a bit of an odd experience, to say the least and unfortunately it was not quite top-level clean … :'(

Strangely enough, like yourself, I also saw a gyno (just very recently), in my case a female GP, but “in my particular case” it was mainly because of my trying ever so hard to find a medical explanation and perhaps a medical answer and a way forward for the undiagnosed constant pain, but the doctor could not find anything “gyno-wrong” and unfortunately, that still leaves me with no medical answer for the undiagnosed pain ... :'(

I have not consulted with a urologist yet and perhaps that should be my next step?

I am very sorry for you to live so far from your clinic and the fact that you have no local nephrologist sounds very difficult to me and I do hope you can figure something out and I can truly imagine how stressful the situation can be, especially since we always have to “keep an eye” on the function of the transplanted kidney…

Please take great care of yourself and please continue to stay strong and many thanks again for your kind sharing and I send you my best wishes from Kristina. :grouphug;
« Last Edit: November 17, 2021, 01:16:30 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
tigtink
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« Reply #385 on: November 17, 2021, 03:33:11 AM »

I too have struggled with UTI's, both before and after the transplant. My sisters are all prone to them as well. My oldest sister was prescribed a low dose of Premarin vaginal cream to help prevent them and has had only 1 in the last three years. So a year ago, after having three in one year after the transplant, I asked the transplant center and my GP about the Premarin and they agreed it would be a good course of action. In the year since I started taking it, I have only had one UTI and that one was minor. They would not even have treated it if my creatinine had not been elevated. Going forward, the transplant center will be checking my urine every month. They will order a urine culture if indicated. Hopefully if I have another UTI we can catch it early. Apparently with age hormones decline and the membranes protecting against UTI's dry up. The Premarin helps restore this protection. It also avoids the need for prophylactic antibiotics which can lead to antibiotic resistance.

I was prescribed D-mannose by a urologist before my transplant. I took it faithfully for over a year but it did not help.
« Last Edit: November 17, 2021, 03:50:36 AM by tigtink » Logged
iolaire
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« Reply #386 on: November 17, 2021, 06:31:27 AM »

Going forward, the transplant center will be checking my urine every month.
My nephrologist who works at the transplant center includes a urine test each month as well.  I've wondered why its a standard test but from reading your all's challenges it completely makes sense.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
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« Reply #387 on: November 17, 2021, 08:23:18 AM »

Hello again and many thanks for sharing your thoughts and experiences, tictink and iolaire. I have been reading about D-Mannose Tablets and Premarin and hopefully one of them could be the answer for these debilitating urine-infections.

At the moment I am still on these latest heavy antibiotics (with typical side-effects) and I do hope I shall be able to go out for a little walk again very soon.

Many thanks tictink for your kind explanation about the decline of hormones with age and I am glad about your kind explanation about Prophylactic Antibiotics, which can lead to antibiotic resistance and I certainly could never take such a risk! Many thanks again tictink for pointing this out to me!

Many thanks for your kind thoughts, iolaire, and unfortunately, “my” transplant centre does not take a urine-test each month, in fact, they see me once every few months, but I shall ask them whether it can be arranged to have my monthly urine check-up at my local GP.

Many thanks again for these inspiring ideas of how to go forward from here and I appreciate your kind inputs about your experiences and thoughts very much and please take great care and best wishes from Kristina. :grouphug;
« Last Edit: November 17, 2021, 08:27:45 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
tigtink
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« Reply #388 on: November 17, 2021, 08:40:09 AM »

Iolaire, I had wanted regular urine tests for years but no one would order them. It was only when my creatinine crept up and they worried about rejection that they added the urine test to monitor the protein/creatinine ratio. Since I have a history of UTI's he also added a urine culture if indicated. I wish they had done that all along because I can have a UTI and have no symptoms. I can't help but think that can not be good for the kidney.
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UkrainianTracksuit
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« Reply #389 on: November 17, 2021, 01:31:39 PM »

I've just got to say that these recent posts give me anxiety.

I've never had a UTI in my life — before OR after transplant.

Obviously I'm asked at my appointments if I have burning and urine cultures are done every 3 months, but I've just been lucky I guess. Hopefully not jinxing myself now.

Since I'm sexually active, the transplant nurse made sure to give me a good talking to about prevention in that regard. But still...eep.
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SooMK
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« Reply #390 on: November 17, 2021, 01:50:12 PM »

I think UTIs are something some people are prone to and then once you’re immunocompromised they have a field day. I had had a few maybe 40 years before my transplant. I have used Premarin for a long time so there’s not anything more I can do on that front. There was a great article in the NYT a couple of years ago and this antibiotic resistance with UTIs is just getting worse. There are at home UTI tests. I have used them. But I didn’t suspect that was the problem. Maybe I should do an at home test once a month.  Right now I have finding a urologist who has experience with transplant patients within a reasonable distance from me on my to do list. Take care everyone!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
MooseMom
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« Reply #391 on: November 17, 2021, 08:33:08 PM »

For what it's worth, years ago my father was diagnosed with a very small malignant tumor in his prostate.  His doctor told him it was of the slow growing type and that just doing nothing would be fine.

My dad did not like the idea of having cancer untreated, so he opted to have radiation treatment.

This removed the tumor, but it injured his ureter in the process, and he had recurring UTIs for well over a decade.  The last time I saw him, I'd just flown in from the UK for the summer, and he was having a recurrence.  The next morning, he was in the hospital with sepsis as his UTI was of the antibiotic resistant sort.  He died the following night. 

The horror of it was that he didn't do the one thing his doctors asked him to do, and that was to drink more fluid.  I never saw that man drink a glass of water.  He said that he didn't like the way it tasted.  Can you imagine that?  He was happy to sling back antibiotic after antibiotic, but he wouldn't drink just two glasses of water a day. 

I mention this because I have wondered from time to time if some kidney transplant patients might unknowingly have had some damage done to the ureter during stent removal, setting them up for chronic UTIs in the future.  Do kidney transplant patients have more UTIs than the general population?  I'd never really thought about this.

I've never had regular urine cultures taken except for my annual labs, certainly not with my bi-monthly labs.  I wonder why?

SooMK, let us know if you find a urologist who has experience with our "special" population!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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When all else fails run in circles, shout loudly

« Reply #392 on: November 18, 2021, 01:59:58 AM »

Hi all, I hope you find yourselves well, or a bit better today.
I just thought I bud in to say that way back when I still had dad’s kidney I used to have UTI’s lots. Treated with IV antibiotics. Kept coming back. Went to urologist who did a Cytoscopi (sp?) UTI’s never came back.


I could only conclude that the Cytoscopi removed something that obstructed something in the urether which caused them.


Good luck all, love Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
UkrainianTracksuit
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« Reply #393 on: November 18, 2021, 04:12:55 AM »

Hmmm, this is all so interesting.

I don't have a transplant nephrologist (see a regular one), but I am followed by a urologist who is a transplant surgeon. For some reason, pancreas transplants fall under urology. Probably because in the beginning, they hooked them up (bad terminology, I know, it's early, give me a break) to the bladder for their draining. (Now it seems to be the bowel). Anyway, that team hasn't expressed any concerns over UTI besides, "any fever, burning when you pee?"

What are the best suggestions (brands) for these do-it-at-home tests? Seems like a worthy investment.

The other thing I wonder for us on Septra. Since that's an antibiotic generally prescribed for bladder infections and UTIs, and we take it for different reasons, does this provide some protection OR is it leading to the opposite effect? (antibiotic resistance)
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SooMK
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« Reply #394 on: November 18, 2021, 07:03:11 AM »

Really interesting info and comments here.

MM—Most of my life I was a terrible water drinker. I have definitely improved since my CKD diagnosis and even better post transplant. I do need to be more vigilant. I get complacent. 

After my transplant I didn’t even know I had a stent until I was told I needed to have it removed. I was sure I had a UTI leading up to the stent removal. I was told I did not. So I thought once the stent was removed all would be well. It wasn’t. The urologist told me I had overactive bladder and prescribed magic pills (Toviaz) and as far as I was concerned, they really were magic. After about 6 weeks I didn’t need to take them any more and all was well for a few years. But then in 2017 I had the worst UTI ever leading to sepsis and IV antibiotics. Then I went a couple of years without one and then I had another one, and so on. A normal immune system routinely deals with the usual Ecoli bad guys which are always around but not for some of us in our special group.

Cassandra—When I went to see my PCP after she’d recommended a urologist, she (the PCP) asked if the urologist had done a cystoscopy. She did not. I suppose my PCP decided to “stay in her lane” and said nothing. Perhaps that needs to be done.

UT—I picked up the at home UTI tests at Walgreens, a local pharmacy,  if you’re in the US. I went with the cheapest, I think they were about $15 for 3 tests. My every three month renal testing does not include a urine test. I’m going to ask this question of using the home test on a regular basis of ….someone. I do get the impression that the home UTI kits have a level of respect that my own opinion that I have a UTI does not. This new wrinkle of not even knowing myself seems to lead that an at home test kit is called for.

I thought that antibiotic resistance was personal and local. Something about the way they test for antibiotic resistance is not the same for every lab. If the lab does the "detailed" UTI test where they test it for resistance (which is more expensive and takes a few days) and they say, “here’s a script for macrobid which killed off your ecoli in the lab” and I take macrobid and either symptoms clear up while I’m taking it and then come back when I stop, or it does nothing at all even while I’m taking it—my ecoli has resistance to macrobid. This happened to me over and over again with different antibiotics. I now realize because I wasn’t going to a knowledgeable-about-transplants doctor consistently it’s made the situation worse. Perhaps the dose wasn't large enough or I didn't take it long enough. The transplant-aware doctor is going to know that I need a heavy hand with the antibiotics (although the side effects are awful).

During my research on UTIs and antibiotic resistance I read about the use of phages to treat UTIs which as I understand it began in Eastern Europe about the same time as antibiotics started being used. Antibiotics became very popular and overshadowed phage therapy but research on phages has persisted and they are used successfully with UTIs in some countries (I believe at an institution in Tbilisi) and some researchers think that it might be time to look to phages to help us. There is a wonderful book, “The Perfect Predator” which recounts how a doctor’s husband was saved with phages because she was a researcher and would not give up. Very readable and hopeful.


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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
kristina
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« Reply #395 on: November 18, 2021, 02:13:33 PM »

Hello again and many thanks tigtink, UkrainianTracksuit, SooMK, MooseMom and Cassandra for your kind thoughts, your sharing of your experiences and all this most useful information, it is very much appreciated and certainly gives me lots of hope!

Despite all the side-effects of “my” current “heavy cavalry” antibiotics, reading all your wonderful inputs, I feel already uplifted again and I am very grateful for your thoughts. Many thanks again from me, Kristina… I am still on these heavily “turbo-charged” Penicillin-medications and must take them for a few more days and, at the same time, I have to put-up with all these unpleasant side-effects … but, after all, I am still here and that’s what it is all about… I shall also try to find a way forward and with all the useful information you gave me here, I feel, I have been given lots of useful “ammunition” to tackle this problem much better from now on and I thank you all very much again.

Many thanks tictink for pointing out, that there can be a UTI which shows hardly any noticeable symptoms. That is very important for me to keep in mind and shows the importance of regular tests, just in case. Many thanks again.

Hello UkrainianTracksuit and you are a very lucky girl that you have not had any problems and/or experiences with UTI’s. You are certainly extremely lucky and I keep my fingers crossed, that it may continue like that. Could it be that you eat or do something special that keeps your immune-system so strong? Do you have a very special diet? I send you my best wishes and good luck!

Hello again tictink, I think it is for me a very good idea, to do my urine-test first at home, if in doubt, just to be either re-assure myself that all is well  and/or to know why to act quickly straight away. I have just now my do-it-yourself-test (Siemens Multistix ® 10 SG) at home and it seems quite easy to understand and for me it is much better to check-up first at home to make sure that I don’t get unnecessarily concerned about “it” and to know when to take action and rush urgently to the doctor with the result of my do-it-yourself-at-home-test. This do-it-yourself-test enables me now to feel a little bit more confident to get an idea about when to act urgently. Many thanks again!

Hello again MooseMom and many thanks again for your kind thoughts and I am very sad about what happened to your father and it is also very sad that he could not drink more water. But I do sympathize with him. Drinking liquid can be sometimes very difficult. Take for example our London drinking water. They say it is very safe to drink, but to me it does not really taste very refreshing on its own and I very much prefer it boiled and I prefer a 500ml drinking-cup of Camomile Tea etc. and later another one and my two cups of coffee’s a day etc. and I am very sorry that your father had a sepsis and I feel also very sorry for him suffering from a UTI that was antibiotic-resistant and I wonder how this could possibly happen? It is so sad! Many thanks again for mentioning it and please take care.

... I was wondering as well whether some damage could have happened during my own transplant-operation and “set me up” for future UTI’s? I do remember, that I had the operation-stent still “in place” for many weeks afterwards and I also noticed that something was wrong, when I was told it should have been taken much earlier.

Hello Cassandra and many thanks for your kind input, it is very much appreciated, especially the idea about a Cystoscopy. I feel very happy for you that the Cystoscopy did sort out your UTI’s, but it must have been a difficult and risky decision and go ahead with the operation with a compromised immune-system? Many thanks again for this interesting information and I shall ask my medics about it a.s.a.p.

Hello again UkrainianTracksuit, I just wanted to mention that I have asked my GP about it and have now a do-it-yourself-test from Siemens (Multistix ® 10 SG) and it is not too difficult to understand the do-it-yourself-check-up on whether or not there is a urine-infection. It comes with a colour-chart with which you can easily compare on the multistix-colouration the result, after having put one multistix into the urine-sample. But it is most important to keep the other unused multistix out of the light so that further check-ups are kept as reliable as possible and to keep them very tightly closed in a dark spot, because they are very photosensitive. Get the one you are going to use out of the box very quickly and close the box tightly again. Many thanks again for your input and best of luck-wishes from Kristina.

Hello again SooMK and again many thanks for your sharing your experiences. I also did not know I had a stent after the operation in November and had it removed many weeks later and by this time, I was already in a terrible state and I felt very unwell. I am very sorry for your horrific experiences and I very much appreciate your sharing, because it gives lots to think about and how to sort out “things” for a better and less stressful future. I also wonder about the antibiotic-resistance and I certainly have never ever heard about it before. It certainly gives me the shivers! And it sounds frightening!
Many thanks about your mentioning phages and I shall certainly try my best to find the book “The perfect predator” and try to get educated about it.

Many thanks again to you all for all the most useful information, it is very much appreciated and certainly gives me so much more hope how to become better educated and therefore much better able to tackle the problem. Despite all the side-effects of “my” current “heavy cavalry” antibiotics, I do feel already uplifted again and I am so grateful for all your wonderful and most useful inputs. Many thanks again from Kristina and I do hope I have not repeated myself too often and it was a bit difficult because I am still under these heavy antibiotics and they make my thinking a bit more difficult. Thanks again for your kind understanding and please take care and best wishes from Kristina. :grouphug;
« Last Edit: November 18, 2021, 02:27:11 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
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« Reply #396 on: November 18, 2021, 02:46:23 PM »

Hello Kristina.  I lived in Surrey when I lived in the UK, and I remember when my mother would come to visit, she'd always remark how good the water tasted.  Mind you, this wasn't "London water", but looking back, I remember really liking our water.  Whenever I visit now, I am reminded of how nice it tastes.

Where I live now, the water is OK tasting, but I use a filtration system that makes it taste nice.  It's called "Zero Water" and consists of a pitcher fitted with a filter through which regular tap water passes.  The filter is replaceable, and I get new filters at the local hardware store.  They're also available online.  I use this filtered water to make various iced teas.  What's important is that you get plenty of fluid, and I mention water in particular only because it is easy to get.  It's not just that my dad didn't drink enough water, rather, his daily fluid intake was well below what is recommended.  I have often read that older people just forget to stay hydrated.  I'm not sure that holds true to kidney transplant recipients, but maybe older people in general do forget to keep their fluid intake high enough.  Anyway, you might consider such a water filter for your convenience?

I'm glad you are feeling a bit better in yourself.  Our fellow IHDers have once again chimed in with a lot of good advice and insight.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #397 on: November 19, 2021, 02:33:25 AM »

Dear MooseMom and again, many thanks for your kind thoughts and also many thanks for mentioning the water-filter, that really sounds like a very good idea to look into and, you are absolutely right that our fellow IHDers have once again chimed in with lots of good advice and insight. That is extremely helpful for me and I am very grateful for all the shared experiences and thoughts and, my following up the advice makes me already feel a little better, because it helps me a such a lot to see a much more positive way forward.

About the liquid-intake you mention, I was told to drink every day about two and a half litres of liquid and at first, I was a bit surprised, because of my rather slim size with “normal” height etc., it seemed such a lot and at first it was a bit hard, especially straight after my years of total strict fluid restrictions (500ml) during my dialysis-treatment-years.

But then I quickly realized, how important it is, because the two and a half litres liquid every day not only keep my transplanted kidney very busy at all times and therefore the kidney keeps up its function as intact as is possible, but this amount of liquid-intake could also assist my body to help flush-out the toxic elements of our medicines? In any case, straight after the transplant, I really had to persevere in order to succeed, but then it became much easier to adhere to my two and a half litres of liquid-intake every day and now it is quite normal. The most important "thing" for me is to just "spread" my whole liquid-intake evenly through the whole day ...
Many thanks again for your kind thoughts and I send you my kind regards from Kristina. :grouphug;
« Last Edit: November 19, 2021, 02:49:43 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
UkrainianTracksuit
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« Reply #398 on: November 19, 2021, 03:05:00 PM »

I've been looking at these at-home UTI tests and put in an order for the 3-pack ones that I assume have to be the similar kind that SooMK mentioned.

I've seen the Siemens ones, but they seem like a little bit difficult to procure.

But, omg, I have to say, looking at these testing strips where colour has to be matched takes me back! When I was diagnosed with Type 1 diabetes (newborn), I didn't have access to a glucose monitor, until I was like 8. Checking blood sugar meant finding the level (at least a range) by matching the colour it turned to the key on the side of the bottle! And the same thing with Ketostix (tested for glucose/ketones in urine).

I know, babbling, but these things just take me back and I reminisce!

Hello UkrainianTracksuit and you are a very lucky girl that you have not had any problems and/or experiences with UTI’s. You are certainly extremely lucky and I keep my fingers crossed, that it may continue like that. Could it be that you eat or do something special that keeps your immune-system so strong? Do you have a very special diet? I send you my best wishes and good luck!

To be honest, I don't really do anything special. I'm vegetarian, but not especially a "clean eater" about it. (Meaning, I eat Impossible "veggie" burgers at a restaurant from time to time.) I drink alcohol (not abundantly). Nothing special.

It could potentially be that I'm under 40 years old and still have umm, normal membranes and lubrication "downtown"?

Could be just how I'm made? (as I know sometimes physiology makes some women prone to UTIs)

Nothing special at all!

OH! To follow-up on MooseMom's input, I do drink a lot of fluids. 2L is a minimum set from the beginning.
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kristina
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« Reply #399 on: November 20, 2021, 02:20:24 AM »

Many thanks again for your kind reply, Ukrainian Tracksuit and I am sorry about the Type 1 diabetes and know from a neighbour, how difficult this can be at times as well. Please take great care.
Fortunately, I have no problems with the Siemens UTI-test and fortunately there are many different UTI-tests for home-check-ups and I am just grateful to feel a bit more “at ease” by being able to check-up to get a better idea in the future…
Perhaps you are right and a susceptibility to UTI’s might be connected to how we are built plus our age etc. and in my case, it could not be connected to my liquid-intake, which is two and a half litre every day or my vegetarian food … but I would not be surprised if it could also be connected to our compromised immune-system after the kidney-transplant? I certainly have felt very vulnerable ever since  …
Strangely enough, I don’t remember many “battles” with UTI’s before my transplant, but since then I certainly have had some battles, plus the one where I was brought to hospital with a Sepsis, which needed me being hospitalized for 10 days with 24/9 on intravenous antibiotics, plus another few days at home on antibiotics. That was quite a frightening experience and I feel very lucky to still have my life plus all my limbs intact!
Right now, I do have to go through another two days of UTI-antibiotic-treatments and from then on, I shall try my very best to avoid UTI’s as much as I possibly can. thanks to the kindly offered advice and thoughts from other IHD-members and I am very grateful for that.
Many thanks again from Kristina and take great care. :grouphug;

The other thing I wonder for us on Septra. Since that's an antibiotic generally prescribed for bladder infections and UTIs, and we take it for different reasons, does this provide some protection OR is it leading to the opposite effect? (antibiotic resistance)
Hello again Ukrainian Tracksuit and your question here is a most interesting and important question! My own UTI-antibiotics are Penicillin and they are also not "only" for UTI's, but also for other different ailments and I also wonder, what the answer to your question could be, especially since an antibiotic resistance sounds very definitive and I wonder what doctors can possibly do to help in such a situation?
Many thanks again from Kristina. :grouphug;
« Last Edit: November 20, 2021, 02:28:09 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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