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Kidney Disease- my journey


Nassie_girl

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Nassie_girl

Hi all,


Some of you may have followd my progress elsewhere on my kidney disease.


Over the last 2 years both my hsuabnd and l have had tests for a kidney transplant in the near future. Covid has slowed the process down somewhat.


Hubby is donating to me.


I was to be be signed up to the Kidney Exchange Program back in Feb and start that process of either hubby donating in the exchange if a match was found or directly to me if it came to the time where l needed it. He is a match but they still want the best match for me.


But that has been put on hold for now. The renal dr wanted me to have a mammogram, which l did early Jan. Got a phone call 2 weeks ago that the results showed something in both breasts and l needed a biospy in both. Saw the breast dr a week ago, had one biopsy Tuesday and the next one is this Friday. No idea what to think, just taking one day at a time.


I was a little bummed as l thought all the testing was over...


Started to feel some symptoms now and can no longer enjoy hiking or walking which has been hard to accept as l am super active, but have managed to keep working on the farm as my job.


Just wondered if any other Kidney Warriors out there

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Hi Nassie, I think I remember your story. I know read the story on oldEB of someone with a workup for a live donor transplant.


I'm so sorry to hear about the mammogram, that must be devastating for you to even contemplate any reason for postponement. Fervently hoping for you that they both come back clear.


My husband was a live donor for his sister ten years ago, last month. Another brother was a closer match (6/6, husband was a 3/6) but had complex blood vessels, plus kidney stones, so the donor was my husband.


The workup takes a while, doesn't it?


I can only tell you that both are very healthy. My husband had hoped that his low blood pressure might come up a bit, but nope, still low, however at 70 he now finds adding hydralite to water on a hot day, helps. SIL is also very well, and we're about to catch up in person for the first time since before covid (different states), but I know one time she was annoyed that her eGFR was 59, and missed out on 'normal' by 1. Hers was between about 9 - 12 for a while beforehand.


Look forward to hearing about your journey, and hope that your outcomes were as good as ours.

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Hills Mum Bec

Not a kidney warrior myself but my FIL donated a kidney to my MIL about 12 years ago when he was 69 and she was 68. They are both doing great, MIL was quite ill before the transplant.


Scary news re you mammogram. Sending you good luck with all you have to come.

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Nassie_girl

Thanks Bornagirl. What a wonderful husband you have. As someone who needs a kidney l found this is the hardest to accept a gift like this, espically from someone so healthy. Hard to think someone has to undergo an operation and they are not sick. I am more a giver then a reciever but learning to change my point of view and accept.


Hills Bec, wow thats an amazing age, as l know as they get older it is harder. Wishing them both well in health.

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Thanks Bornagirl. What a wonderful husband you have. As someone who needs a kidney l found this is the hardest to accept a gift like this, espically from someone so healthy. Hard to think someone has to undergo an operation and they are not sick. I am more a giver then a reciever but learning to change my point of view and accept.


Hills Bec, wow thats an amazing age, as l know as they get older it is harder. Wishing them both well in health.

 

I think most of us are more comfortable giving than receiving, so it must be a common response. I know my SIL struggled a bit, and even contemplated (not seriously, one of those brief things) not going ahead when her eGFR went up to about 15 one time. Fortunately she and my husband have always been close, and it's only strengthened the bond. I'm also close to her - both before and now it wasn't uncommon for either of us to call each other for a chat, so I'm sure that didn't hurt. Our daughter's second name is after her. I'm also close to her daughter (staying with her in a few months), so again, and extended family bond.


My poor MIL though - two of her children having major surgery the same day! At least there was a third sibling local (the one with the difficult blood vessels) to support her.


I do know of cases where family bonds have been reignited due to one needing a live donor, then the donor getting the cold shoulder once the sibling got what they needed, which would be crushing.


Would love to get updates on how you're doing.

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  • 2 weeks later...
Nassie_girl

Wow Bornagirl that would be hard on your MIl, l guess it will be the same with my kids with both parents going into surgery. You never really think of that when you are the patient..


Yesterday l had my other breast biospy, felt bad all day.. so fatigued and my legs were so sore l could hardly walk. But got thru the biopsy and was the same dr (different hospital) who did the procedure and she said that the first biopsy looks all good.


The hospital system was hacked into last week tho, so my biopsy was a few days later, but unsure if my appt tomorow with Breast surgeon will go ahead as they can't acess some of the files. Also see my renal dr Monday and again hoping that appt is happening. Still the unknown.


Hubby had an appt with the renal dr yesterday (so was out all day as mine was in the morning) only to find as we were walking to the hosptial that it was cancelled due to the system being down and can't access his files. But they said next appt is 6weeks away... How is that even possible as l thought this was urgent. He is the donor but to wait that long is crazy. So will have to call the renal nurse today to try and find out more.


I don't think my side (drs) will be happy with that...


So now awaiting biopsy results and seeing if appts will or can still go ahead.

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I've got everything crossed that both your biopsies are good news.


Yeah, six weeks, sounds like they're not realising what the appointment is for. You're having some rotten luck.


We had lunch with my SIL (and BIL) today, first time we've seen them for nearly 2 x years. Although they're interstate we do tend to see them reasonably often for various reasons. She is keeping really well. She and my husband call each other K1 & K2.


What age are your kids?

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Nassie_girl

Good News. All clear on the biopsies... Its a relief but also a little odd. As now the journey has changed somewhat again. I guess l was waiting for results and just focusing on that. Now that they all clear we can look at the transplant going ahead but now my brains says "you are still sick" think all the hype and scare does a lot mentally without you realising it.I am feeling pretty drained, with headaches, really sore legs and just tired.. But thats kidney disease l guess.


Off to see the renal dr on Monday. And after calling the renal nurse they got hubby in on Tuesday (ha to the 6weeks). I really love my side of the team.. they are really pushing everything and all for my good.


Hubbys gone away on a Father and Son camp (only overnight),, l felt like crap this morning and didn't really want him to go, but hid it so he wouldn't know and get out and have some fun and "normality" as its been a big draining week. He did call about an hour ago and woke me up asking how l was.. so maybe l didn't hide it well.. opss... But really l am all good.

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Woo hoo! Great news on the biopsies. Such a roller-coaster for you - it would be hard to keep your emotions even.


Glad you've got a good team, too. My SIL was pretty much in the dark. Don't know if I mentioned it above, when when she asked for some advice about how to go about talking to potential live kidney donors (she assumed there'd be support), the Nephrologist said bluntly 'just ask them!'. Fortunately she's an excellent communicator and wrote both potential donors longish letters, and sent them both a book on kidney disease.


She only knew what the donor was going through because we told her, and there's an awful lot you go through beforehand.

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Nassie_girl

Yes my dr just told us to be open about the converstation and tell them about it and you will be susrpised people will offer.


I attend church and mentioned my health decline in church and l had a few say they would donate, one l "thought you have no real idea what you are saying" and the other was my boss/friend... She even came to the info session but was never needed to be tested as hubby is the go to person.


But other then that how do you go talking about it? Even about the disease? I mean most days now l feel like crap, but who wants to hear that ALL the time.... So l just solider on as l can, but l am honest if l am really bad and just can't.


The past few mornings l have woken early like 5;30am and not been able to sleep due to headache or just feeling blah and no energy but can't sleep... And l just take it slow and it usually eases somewhat to make me at least somewhat human.


Was talking to a lady in church today and its hard b'c on the outside l look normal, l don't look sick but when they ask l tell them (only if they ask) and people are shocked at the smyptoms and l guess l am shocked b'c they are shocked.. But l guess living with it and having had family with it, there is nothing new... if that makes sense.


How did your SIL go with support from other family and friends? Sad to hear some have no support or they think they are not really that sick as they "look" fine. It has opened my eyes up to how blessed l am with my church family, family and boss.

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They live in another state, but the transplant was done here in Melbourne as her state doesn't do them. Probably their closest friends, are a GP and a medical specialist - her husband's a medical specialist too, so no lack of support there. With most around her knowing full well what an eGFR of around 9 - 13 meant, lack of support wasn't an issue. We knew she wasn't well, but we didn't know just how bad it was until she wrote, so that would have been very hard for her - both trying to make clear how bad it was.


We didn't see her until just before the surgery. I still remember one of the joys for her afterwards was the relaxation in diet - she could enjoy some summer fruits, previously too high in potassium for her.


Great to hear you have good support.

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  • 3 weeks later...
Nassie_girl

So hubby has been cleared with the BP issue. Not really an issue, but in his drs eyes his best outcome for Hubby is not to have the operation. Its frustrating but he has been cleared and now just needs to watch his BP or he may not be able to donate. He is on meds for it... Its super complicated. But l guess like they said they don't want to get to the day of the Op and do all the pre-checks and find we can't go ahead due to a issue like high BP.


So update is the renal surgeon (i think he is.. met so many diff people), rang us the other day, to go over the paperwork for Kidney Exchange. All approved and will put all the data (is that what you call it) in and then wait for a match. They will get an email when a match is found,we get the call then and then can go ahead with more testing before the Op.


So could be a 2 to 3month wait for the phone call to say there is a match, and then maybe another 2months when we have a match of testing etc...


Hubby is a match for me, but this dr seems relcutlant to do the transplant this way. There is a chance there could be rejection as we've had kids and the dna may wake up once kidney is in and attack the new kidney. So they want a better match.


Always looking for the best match.


See my renal dr in a week, so see what she says about it.


My function is stable (at last test a month ago) at 19% but all it could take is an illness like gastro, flu, cold etc.. for the kidney to decline more and meaning dialysis (and they are trying to avoid that).


So its just waiting,lm thankful l can still work as l sitting around at home would drive me nuts.. Life on the farm (work) is relaxing and keep my mind and body busy.. Housework is harder on the body.


I have my average days, my ok days and my bad days... I;m stubborn and just keep pushing thru it.. Otherwise whats the other option... sit there in gloom and think poor me... Im not bed ridden yet so l will make the most of what l can do now... I can't enjoy walks much now.. but thankful l can work still. And my boss's are amazing so l am sooo blessed to be there. My boss was one who offered me a kidney but they chose hubby instead.

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  • 1 month later...
Nassie_girl

Born a girl On the active list, means they have added you to the list of the Kidney Exchange and now just waiting for a match. Hubby is a match but they want a better match.


Had the 2nd dose of the pfzier today. So far so good. Last time l just had a sore arm and felt like l was getting a cough but that was all.


Been a bit up and down here, l think reality has hit hubby and he's better now but for a bit he was stressed and bit of anxiety but the dr and renal nurses have been great and keepping in contact with him.

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My best mate is 2 years post transplant, her DH was her donor.

She was on dialysis for 18 months and was getting sicker and sicker but due to her age she was not going to be shortlisted any time soon so her DH stepped up. They were 67 and 63.

It was a rocky and sometimes scary recovery due to her other health issues but she now has a eGFR of 52 up from 5.

I look at her now and I can't believe she is the same person.

Wishing you every good the luck for a most successful transplant. Thank you for sharing your story.

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Just popping in to say good luck and send you strength while you wait for a match OP. It must take a lot of patience. Hope you are feeling not too awful (that sounds quite lukewarm as far as best wishes go, but hopefully you get my meaning!).

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  • 1 month later...
Nassie_girl

Just to update.

 

We got the call about 2 weeks ago to say that they have found a match. And then found out this week date of transplant will be 26th August

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Sancti-claws

Oh that would be such wonderful news to receive!!!  All the best for a smooth lead up and exit from transplant!!

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little lion

Thinking of you, NassieGirl. What a long wait it’ll feel like. Hope you and DH stay healthy and strong in the lead up to the big day. 

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  • 3 weeks later...
Nassie_girl

A month to go 😃 🤨

 

And l lm feeling it.... 🥲 I am slowing down at work (work on a foliage farm) and ended up with another headache by lunchtime yesterday. Had to have an MRI due to migraines (to rule it out) and came oiut of that with a massive headache. I nearly burst into tears in the waiting room trying to fill out a simple form/patient history. Little things like that is just so hard. I can't concentrate, lm so tired (not sleep tired), l can't even walk far now (and l'm a walker). Im not interested in cooking or eating.. l don't even feel hungry.. but then if l don't eat l feel weak, and more tired... Walking up a hill (like 5min) feels like l've done a massive 20km day hike.

 

I have to go to the dentist on Thursday to get a tooth removed and clean up. And lm dreading it. I put it off last time due to a breast cancer scare... It has to be done.. better to do it before transplant then after... Have to take some antbotics before hand to stop any chance of infection. 

I try and be brave and strong, lm a warrior.. i don't think l need to say much as those around me (family and workfamily) can see it. Im just hard on myself.

 

On a postitve note its Donate Life week. Cant watch some videos/posts on it as it just too close to home.. and trying to keep my mind from negative things. My faith is what is keeping me strong, I know l can do this.

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little lion

Not long now. Does the transplant team give you much support to prepare? I’m thinking you’d probably need to make sure you keep eating well even though you don’t feel like it etc. Do you plan to work right up until your admission? 

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Nassie_girl

Transplant team have been great. Always aphone call away if needed. I see them pretty much monthly.

 

I planned to work right up, but will just take one day at a time... see how l go. I feel a lot better today but then l've had today off.. Now work Mon,Wed and Fri so have a day in between to rest.

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44 minutes ago, Nassie_girl said:

Transplant team have been great. Always aphone call away if needed. I see them pretty much monthly.

 

I planned to work right up, but will just take one day at a time... see how l go. I feel a lot better today but then l've had today off.. Now work Mon,Wed and Fri so have a day in between to rest.

My SIL in Tasmania got so little information and support. I noticed at the talks etc there were frequently both donor and recipient at them.

I was a bit shocked when we talked about it later to find out how much information we'd been given, compared with what was available to her, there.  She did come over a week or two earlier and talk to them then.  Fortunately for her,  being married to a surgeon meant that she wasn't bereft of information, generally.

Ten years later, and I rang her for her birthday today. :)

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