My pre-dialysis-days have finally come to an end...

[kickingandscreaming]

SPAM!!!  Lots of people will take advantage of an exposed email address.

[Paul]

Please tell me : Why is it not a good idea ? Did you go through a bad experience with it ?
Many thanks from Kristina.

There are myriad scammers out there running software that searches the web for email addresses. Posts here will remain for years, so although it is unlikely that any software crawlers will find in the short term, give them a year or two and Michelle2016 will be inundated with email from Nigerian generals and offers of a miracle cure for kidney disease. But the worst ones will be the "There is a problem with your bank account, please log in here and update (something)." and the "Message from Microsoft: A serious security flaw has been found in Windows that will allow hackers access to your private data. Please click here to download an update that will fix the problem." Both of these are designed to get Michelle2016's bank details. Most of us think we will spot the fraudsters, but that is when bad things happen. We get clever, the thieves get cleverer still. The only way to be 100% certain you will never fall for a scam, is to never receive them.

[kristina]

Many thanks K&S and Paul for taking the time to give the needed information and it is very much needed and appreciated and hopefully Michelle won't get any problems.
I do take your advice very seriously, because having kidney trouble (with or without transplant) gives us days, where we are intellectually not in top-form, but surrounded by some ESRF-mist, through which we can hardly see through and that can be dangerous for us ...
Thanks again from Kristina.

[kristina]

... This has been a strange day today and I am still very shocked.
I have just noticed (in another section of IHD), that moderator Cassandra has moved my topic "Correction" into the "off topic" section of IHD and that has shocked me very much.
If one member (Paul) is allowed to spread a lie about me (Kristina) and my answer has been put by moderator Cassandra into the "off topic" section of IHD, it seems that former IHD-standards and integrity have gone, meaning, that it is impossible for me from now on to rely on the truthfulness and integrity of IHD any longer.
If, for example I would ask in the future a question on IHD, how could I possibly rely on the truthfulness of the answer?
Very sad, but after such a shocking disappointment there is only one way forward and that is to move on ...
Bye bye IHD, it has been pretty good until now, but due to lack of trust from now on, that must be it ...

[UkrainianTracksuit]

Kristina,

You are a very intelligent woman and I am saddened that you feel this way. You know that I too have had issues in the past with this board (small ones) but that is part of communication, right?

Just a small clarification though. When a topic is moved, it is not done so with secretive or nefarious meanings. It simply does not belong under the heading or subforum under which it was originally posted. And so, moderators or admins move them, like housecleaning, to areas where they belong, so they can be better viewed.

For instance, the Correction was posted under Dialysis: General Discussion. As you know, with your experience here, that section is for the myriad of questions related only to dialysis. For your Correction thread, it did not concern any modality of dialysis, thus it got moved to a space where it could be discussed freely, and not be hidden among postings of say, oh, fistula questions or fluid loads. I hope you understand this. I am willing to bet my hat that Cassandra meant no malice when she moved it and was simply shifting the thread where it ought to have been. And definitely, she meant no ill-respect towards you. Those involved will better see it there.

Please take care and think this over. Kind regards.

[MooseMom]

Yes, exactly right, UT.

These types of incidents showcase the inadequacy of social media.  Misunderstandings of tone and intent are rife.  Communicating efficiently is difficult in front of a screen.  So much of communication is non-verbal.

I am glad this discussion has been moved to the off topic forum because it is always a good idea to, from time to time, discuss how we can better communicate on an online forum such as IHD.

[Paul]

If one member (Paul) is allowed to spread a lie about me (Kristina)

I'm not sure what you are talking about. I have disagreed with you, I have made comments about your posts or claims, and sometimes this discussion has got "heated", but I cannot remember ever making up a lie about you (and lying is not something I do). However if you feel I have posted something untrue about you and you have corrected it in the same topic, my original post will have been moved as well so people reading my post will still get to the post with your rebuttal. And if, for some reason, you did not post in the same thread but started a new one, then simply go back to the thread with my post in it and make another post in that thread with whatever point(s) you want to make about whatever I said. That way anyone reading whatever it was I said will still be able to see whatever it is you want to say about my comment.

[Michelle2016]

To Paul:

Thank you for reminding of me about the personal information.

Take care.

[Michelle2016]

To Kristina:

I just send you a private mail. Please let me know if you have any questions.

Take care.

[Michelle2016]

Hi, Kristina:

Following facts can affect creatinine level:

1. Water intake. At least 2000 cc or mL a day. Water helps to clear out creatinine from the blood stream.
2. At the beginning of transplant, the high dose of immunosuppressive med can affect the creatinine level.
3. Everyone is different. I know one story from another site that it took two year for one guy’s creatinine to come down from 2 to 1.3.
4. Don’t eat grapefruit.

Good luck and take care.

[PrimeTimer]

Hello,
I am very happy to share my recent good news. My kidney function was 19% before and now it has climbed-up to 23%, hopefully meaning, that my new kidney is still continuing in its own way to slowly pick-up and this after nearly three month ! Hopefully it continues like that for a little while longer  ....
I am quite ecstatic about the new development right now and the Doctor told my husband and me, that my recovery appears so slow, because the new kidney and I were already going together through a very rough time with the two nasty infections I had, one after the other. The first infection was due to my sharing facilities with one particularly not so hygienic female. But the second infection was a full blown urinary tract-infection and it became so bad, that at one point I was unable to tell the doctors details about where my husband and I are living and that was a very frightening and confusing moment ...
Fortunately the antibiotics helped a lot in my recovery from the transplant-operation and now it seems, my general recovery is going slowly ahead now and I also have to take less medication, possibly because of my weight (57 kg) with 1.67 meter in height and my blood-test-results are very satisfactory right now as well and that helps to reduce my medications etc.  ... and ... my new kidney happens to be a very good match ... and it seems to like being with me and my body and me like being with "it" as well...
The doctors also want to "put in" a "stent" to straighten a "kink" between bladder and new kidney in an effort to increase my kidney-function further and hopefully it is going to happen without complications ... 
I am so glad about the new development right now, because at one time I felt that my recovery-possibilities looked a bit grim and hopefully my new kidney picks up a little more function as well. That would make me even more happy and as it is right now, I am very grateful about how it is developing ...
Best wishes and good luck to all    from Kristina.

Kristina: I hope you see this and will consider returning to ihd. Your posts are meaningful and very valuable. After everything you've been through, I hope your new kidney is now working more normally for you. Did they insert the stent to help out? Reading the posts about transplants actually written by those who have had one is important to me and I'm sure to many others here on ihd. Please do consider returning!     

[kristina]

Hello, I have been wondering about a few questions and wonder if another transplantee has had any experience with it and if, how was it approached ?

For example:

Are there any common kidney-transplant "teething-problems", not only the ones directly after a transplant, but also the ones which can "come along" after a while ?

And, how common is water-retention in the bladder, which is altogether well-functioning, except for some water-retention?

How common are swollen ankles after a kidney-transplant, despite the fact that the transplanted kidney is well functioning ?

How well are kidney-transplant-teams approachable, not only for and about the transplanted kidney itself but also for the "host" of the transplanted kidney? Is there any human angle included in their medical care or is it scientifically approached only from the transplanted-kidney-research-angle and the human angle "falls side-ways" ?

Thank you for reading and many thanks for answering.

Kind regards from Kristina. 

[Cupcake]

My oh my Kristina you are pondering lots of stuff!. No post transplant surprises after a few months, except getting adjusted to new diet. I was told 'protein, protein, protein!' while on PD, then after transplant I wanted to take good care of my kidney so wanted to limit protein; but I'm so happy to be able to eat dairy again. I asked for a phone call to a dietician and she recommended to shoot for 70-80 grams of protein a day. Bone doctor says 3 dairy servings per day so that's a big chunk of that.

Water retention in the kidney-do you mean post void residual? I don't have that, but I do sometimes need to get to the potty in a hurry! Probably no worse than any other 62 year old woman. I blame Little Susie, my new kidney for working so darn well. Its a wonderful 'problem' to have.

Swelling in the feet? None. I used to monitor the appearance of veins across the top of my feet when I was on dialysis-if I couldn't see any, then I knew I was fluid overloaded a little (yes, I was also watching weight and blood pressure). Now every day I look down and see beautiful veins all across my feet up towards the ankles. A sight to see for sure.

Barnes Transplant in St. Louis assigned me a transplant coordinator that I email. Has been very responsive to my questions. Sometimes a hiccup getting labs back as I use a local hospital as its closer and sometimes they aren't great at getting labs to the coordinator. I feel like the doctor and nurse coordinator remember who I am (I had a telemedicine conference in March with the doctor) so I appreciate that; I know from my work in medicine that sometimes the patients you remember are the ones that had extra problems or something unusual, so I'm not sure that remembering my specific issues is a good thing, but it made me feel more special. I feel like early on in this pandemic Barnes could have given us more transplant specific guidance (when everyone was freaking out n March/April) instead of just an all-hospital generic notice on what to do if you think you have COVID.No notices specific to transplant. When I had my telemedicine appointment I asked the doctor about transplant and COVID, and she told me that if I get symptoms, to get myself to a transplant center ASAP, not some local yokel as my transplant meds may need to be adjusted. At that time I was down in Florida, and my goal was to avoid ending up in the Army Corp of Engineers temporary field hospital (tent!) that they had set up on the local polo field. Imagine!

Hope this is what you were interested in. Sorry if I ramble on. Take care!!

[Simon Dog]

I had bilateral pedal edema after my transplant, much worse on the right foot (transplant side).  I had multiple ultrasounds and everything except a dye based scan to check for iliac stenosis since it was not high on the docs differential and the contrast dye is not exactly renal friendly.   20mg lasix qd did not help, but adding 12.5 chlorthalidone worked wonders.  I am now backing off the lasix to see if I really need it.

I no longer sleep through the night like I did in my dialysis years and am back to the pre-ESRD protocol of getting up to vacate once in the middle of the night.

[kristina]

Many thanks for your interesting inputs, Cupcake and Simon, it is very much appreciated.

Cupcake, I am sorry about the protein you are asked to take in! Why is that? I was not told anything about my protein yet and I have always been a vegetarian & I must always keep an eye on my Potassium-readings.

It is interesting that you are with a transplant-coordinator! No such luck here. At least I have never had the luck of meeting one and I surely would appreciate some assistance and help. I do hope, you continue to do well and I thank you again for your kind input and please take great care, especially when you have to go to hospital and I wish you good luck.

Hello Simon,
Sorry about your experiences after your transplant and it really sounds terrible !
I also had some ultrasounds which needed kidney-unfriendly contrast-dye and I remember that they also had to put in a much higher dosage in order to see better what needed to be seen on the ultrasound.

I also don’t sleep through the night any longer and for me it is a bit frustrating, because I seem to lack some sleep on a regular basis and that makes trying to concentrate very difficult at times.
And sometimes I get the feeling – as a non-medic – that medicine is on occasion not quite refined enough yet and still needs to be worked out more, especially since each of us are individual cases with different needs, despite the fact that we have in common that we had a kidney-transplant. I wish you good luck and all the best and many thanks again for your kind thoughts and take care.

My biggest problem right now is for me to try and sort out my water-retention in the bladder, swollen ankles and the medical transplant-kidney-research-angle of most of the medics I currently consult with. Not only does it come over as if the human touch is missing, but there is also the problem of following so strictly some dialogue-boxes and forgone routes, when one should work together and not forget that there are frequent occasions, when it become necessary to try and think outside the dialogue-box in order to find a true constructive way forward.

Many thanks again for your kind thoughts from Kristina.

[MooseMom]

Hello, Kristina.  I've just seen your previous post and am concerned about the swelling in your ankles, although I don't know what that particular symptom means.  Any time I see a doctor of any kind, once they see I'm a tx patient, they always look at my ankles, so I'm guessing that something is going on.  Perhaps Simon Dog's experience will be helpful to you?

As far as I am aware, all transplant patients here in the US are assigned a transplant coordinator.  I contact mine via my tx center's "patient portal" on their website.  If I have any concerns or questions, or if SHE has any concerns or questions that are not absolutely urgent, we use this portal to communicate.  She will send me updated standing orders for my usual labs via the portal (called MyChart) and any other orders or information or instructions.

My local hospital is part of a completely different medical system from my transplant center, but they also use a MyChart portal which I also use.  Not only that, I can set up both MyChart patient portals to share information about my treatment/care/medications/medical history between the two hospitals.  I love having this asset!

I have to say that in my experience, all of the medical personnel I've seen throughout all of my kidney "journey" have treated me with great care and compassion.  I am very grateful but am sad to hear that you have not experienced the same compassion.  There have been times when I've been distraught, confused and frightened, but I've always been treated with care.

I hope you will find some answers very soon!

[Hereware]

You can get some relief from ankle swelling by drinking turmeric tea, but of course, consult your doctor for primary treatment.

[kristina]

Hello again and many thanks for your kind thoughts, it is very much appreciated. I wish our medical system could think and “work” in such a nice and appreciable humane way!

Unfortunately I have never ever come across a transplant coordinator who I could possibly approach for help and/or assistance. To my knowledge they do not exist in our health-system here.

It is unfortunately my personal experience that it is difficult to receive medical help if there is a medical problem occurring after a kidney-transplant, like, for example “my” constant abdomen pain which makes my life a complete misery, makes me wonder whether or not it is worth to carry on...  Of course, I had “my” transplant “done” but since then I was left to fend for myself and that is the reason why I honestly regret that I was on the transplant-waiting-list in the first place.

Since “my” transplant I have been in almost constant pain in the abdomen region for which there was no medical interest offered yet and no serious examination put forward yet for the past two years .

My personal impression is that if a transplant is successful (i.e. the patient survives alive etc., it means for the doctors that all is well and how a patient lives afterwards seems completely irrelevant, because, after all, the patient had “their” transplant, is still alive and nothing else seems to matter. Whether the patient lives in constant pain does not seem to be of interest... I give you one little example how difficult it is for me to fend for myself and you decide for yourselves whether "my" transplant was worth the bother :

I had a urine-infection and found myself in terrible pain. In despair I first phoned my GP for urgent help, but first of all I was number 5 in a waiting-list to talk to the receptionist at the GP-Surgery. After a long waiting-time my waiting-number finally came up, but the receptionist to whom I finally could talk on the telephone did not let me speak to the GP but instead tried to get rid of me by telling me that I cannot talk to the GP-doctor because I rang at the wrong time and I should phone back again and try again much later on “in the afternoon”. I told her that I was a transplant-patient and was in terrible pain with a urine-infection but this did not impress enough to receive any help. After realising there was no chance here, I told her that I shall try now urgently to phone  the transplant-clinic for urgent medical help, which I did, but there I also was not getting anywhere but instead was being send around in circles backwards and forwards and backwards again, with the result, as I was told on the telephone, that I had to phone the GP again “in the afternoon” for help. So, in the afternoon I went again through the aforementioned “time-waste” by waiting up my number to come along in order to convince the receptionist and then being given a chance to have the luck and talk to the GP? Fortunately one of the GP’s phoned me back very quickly, but nevertheless, the whole experience made me wonder what is the point of it all?  Can you see, what I mean?

I feel that since I had “my” transplant I need medical help and assistance much more than ever before, especially because of the constant pain, but since the transplant I can’t succeed in receiving the medical help I seem to need. It is just simply horrible. Was it all worth it? Of course not!

Adding to that: my situation of being in constant pain makes me wonder whether it would not be much more humane if doctors let kidney-patients just “fade away” instead of letting them go through the silent horror of dialysis-treatments, put them on the transplant-waiting-list, let them hope for a chance to live and hopefully continue with their career, let them have a kidney-transplant (no choice of i.e. which transplant-kidney etc. given) and then let them live in pain from then on? What’s the point of it? Was I just being kept alive to give some young “wanna-be-hopeful-future-transplant-specialist” a chance to start somewhere, i.e. on me? I wonder about this question, because for me there was nothing liveable for the past two years since the transplant and it seems, I certainly can forget my hopes of continuing with my career or "enjoying my life" and it honestly was not worth for me to bother so far and  ... I really do wonder ... especially since so very few transplanted IHD-members came back to tell of their experiences ... did they go through similar horrible experiences after their transplant ?

[iolaire]

Sorry to hear about your experiences and thanks as always for sharing them.

I really do wonder ... especially since so very few transplanted IHD-members came back to tell of their experiences ... did they go through similar horrible experiences after their transplant ?

I follow the IHD Facebook group now more that I'm not in the weeds of dialysis and there are few people there that have shared bad transplant experiences.  But overall it seems like a small number of people have chronic issues and another small loose the kidney quickly.

[PrimeTimer]

Kristina, I am so sorry that you are going through so much with your new kidney! I know from your posts how fastidious you were during your dialysis days pre-transplant and how well you were doing. Seems unfair that they want transplant recipients to take just as great care if not, more care with their new kidneys but then turn around and treat you like it is nothing. Your persistence tho obviously paid off and I hope you are back on track with feeling better. Perhaps they thought you'd break and just go away and be quiet but ha! they thought wrong! Glad you at least had the strength to hang in there. Please hang on to the hope for better days. I wish for easier times to come your way.

[SooMK]

I'm so sorry to hear about your struggle Kristina. After 6 plus years post transplant I understand how transplant is a treatment and not a cure. I feel like at any time some ailment will attack me and I'll be caught in some medical maze that takes over my mind and body with much second guessing and over thinking on my part. Most of my days are good but I try not to be surprised by my 1 to 4 day headaches or some days just not feeling "right". I think the continual pain you are experiencing is not right and you should be able to keep asking for help until it is figured out. I hope someone is able to help you and give you back some quality of life, otherwise what was the point. Best of luck and keep us updated.

[UkrainianTracksuit]

Hi kristina,

I am very sorry to hear of your situation. It sounds truly frustrating and no wonder it has led you to feel so defeated on the matter. Truly, I am sorry to hear this.

To answer your last statement enquiring why some transplant patients don’t come back here, who knows? On social media, some seem active, living their lives positively and no longer need this site. (At the same time, we knew that Aaisha.Dar suffered after her transplant and she has not been active?!)

I look at the wider transplant community as it is large. And not only kidney transplants. There are many, many people doing exceptionally well. There are exercise programs tailored to them, competitive sports for them, and to be honest, sometimes living a mundane average life is a success for them.

As iolaire stated, yes, some have indeed lost their transplants. Others that had serious health conditions ahead of time may be off of dialysis  but continue to live with the ill-effects of the pre-existing conditions. Sometimes, for some people, kidney disease and a transplant are only part of the puzzle, and not the entire picture.

It is a very complex question.

In regard to doctors, I honestly understand what you are saying quite a bit.

Usually, a transplant team follows you closely for a year, because it is that period that seems the most treacherous. At that point, appointments or even “contact us immediately” transitions to maintenance care of every 3 or 6 months.

You’re right in that they have done their jobs (a successful surgery and a living patient) in that regard. They monitor blood levels to ensure you are hopping along okay and really only have concerns if levels specific to their concerns are out of whack. A stable patient doesn’t present much for those higher ups interested in research, but they are great “practice toys” for fellows at the clinical level, if you know what I mean.

We are thus told to rely on our GP or local nephrologist for care for all other sorts of things. And further, as we know, GP offices under our respective systems are swamped, and sadly, mentioning that one is a transplant patient doesn’t necessarily get one ahead in the queue.

(A lot depends on doctor too. For example, I barely ever call my GP, but when I do, they know to call back, because it is something big.)

When it comes to pain, transplant teams are only concerned if it is accompanied by a fever, nausea, vomiting or diarrhea, as that combination suggests rejection. Other than that? “Talk to your GP!” Still, you should not be suffering to the point that you are questioning life.

I, too, have abdominal soreness after tx surgery. (Not like your unbearable severe pain.) When I get examined, it is visibly sore. The soreness gets overlooked because my blood levels show no problems, my urine output is good, and there are no issues with my urine (no infection, no blood to suggest a UTI or even a thrombosis.)

It was finally revealed to me that it could just be scar tissue and nerve damage. The longer scar tissue matures, nerves regenerate, and that increases pain.  That is at least my case, but that explanation was only provided to me like 2 months ago.

Attention always focuses on the new tx patients as they need to be watched more closely. It is probably more exhilarating for a doctor as well to have new or interesting cases than maintenance of patients that their bloods look “stable.”

What sort of abdominal pain are you having? Is it by the grafted kidney or other area? Can you ask for an ultrasound or other diagnostic imaging? Is this UTI related?

So sorry to ask these questions. You are obviously frustrated and I can understand why.

[kristina]

Many thanks Iolaire, PrimeTimer, SooMK and Ukrainian Tracksuit for your heart-warming thoughts and I am very touched by your kind replies. Thanks again.

I am still totally shocked, because only a very thorough intensive research gave me a chance to find out, that "my" chronic pain (in the right-side lower abdomen, just underneath the transplanted kidney) is medically considered as very common after a kidney-transplant, as mentioned in the included independent medical report  ...

Bad luck for me, that no-one of "my" kidney-transplant-team ever gave me any idea about a chronic pain afterwards or could have given me a warning before I trustfully went ahead with "my" transplant-operation ... Mind you, I am pretty sure that I would have taken the risk and would have gone ahead with the transplant all the same. But at least I would have had the chance to consider the warning and would have been given a better chance prepare myself for the worst. After all, the main reason for my getting on the kidney-transplant-waiting-list in the first place was my great hope to continue with my artistic career, i.e. continue with my paintings, having more exhibitions etc.

But as it looks right now, there seems to be hardly any chance for me to continue with my career and I am very disappointed about this and it is such a very sad situation ... and hopefully I have a chance to recover from this traumatising shock ... But even that seems very unlikely, since I am living now with chronic unbearable pain. It is also strange, that this chronic pain came on first of all very slowly i.e. on and off and then on again ...  but now it has developed into chronic pain 24/7 ...

I am also very surprised, that this medical report mentioned mainly obese patients, whereas I have always been very slim and what is usually referred to as "petite"... so, where does "my case" come into it then? I really don't understand ....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5258796/

World J Surg. 2017; 41(2): 630–638.
Published online 2016 Sep 16. doi: 10.1007/s00268-016-3713-9
PMCID: PMC5258796
PMID: 27637606
Chronic Inguinal Pain After Kidney Transplantation, a Common and Underexposed Problem
Marcel Zorgdrager,1 Johan. F. M. Lange,1 Christina. Krikke,1 Gertrude. J. Nieuwenhuijs,2 Sybrand. H. Hofker,1 Henri. G. D. Leuvenink,1 and Robert A. Pol 1
Author information Copyright and License information Disclaimer
This article has been cited by other articles in PMC.


 

[Hereware]

Our thoughts and prayers are with you. Think positive and have faith.

[enginist]

Hi Kristina--

I'm sorry that you're suffering.  I think that some of your symptoms suggest the presence of a UTI.  You should have that tested right away.  As you know, an untreated UTI can extend to the kidneys and cause pyelonephritis.  You could lose the kidney.  The pain you describe may well be a normal part of your transplant recovery, but it also may be a sign of infection.  I don't know how it works over there, but the health care system seems to be failing you.