Bad to worse, just found out SO needs new kidney

[Begonia]

Oh dear!
Ok. You got this. One step at a time.
Sending you strength.

 

[GreenPapaya]

I'm so sorry. Sending many positive thoughts to you and I pray that he'll find a match very soon.

I keep on reading about diabetes and I'm terrified. I have a sugar addiction and am pre-diabetic. It is so hard not to eat chocolates. My husband on the other hand, has never been to a doctor. He's 43, overweight and eats a ton of junk. But he feels it's okay because he goes to the gym for an hour 4x a week. I hope he is right. With me having had cancer and our kids only 9 and 14 years old, I get very worried. Anyway, this thread reminds me to ask him again. Thank you.

 

[sarahb]

Thats rough news Kenny, am so sorry to hear it. I always try to remind myself to think about the things I am thankful for, & it seems to help. Not trying to minimize your situation, but trying to help you with coping. I had a PET/CT last week. Very scared. So my 'thankful' thought was this at that moment: I was so thankful I had quality medical care, as so many in this world do not. (It was benign.) As everyone has said just about everything I thought of before, I will say this again: try to take care of you. Emotional upheavals are like sawing wood all day. Its exhausting & you need to make sure you are in good shape to be the best support for your SO. Hang tough, you can do this.

 

[december-fire]

I'm so sorry. Sending many positive thoughts to you and I pray that he'll find a match very soon.

I keep on reading about diabetes and I'm terrified. I have a sugar addiction and am pre-diabetic. It is so hard not to eat chocolates. My husband on the other hand, has never been to a doctor. He's 43, overweight and eats a ton of junk. But he feels it's okay because he goes to the gym for an hour 4x a week. I hope he is right. With me having had cancer and our kids only 9 and 14 years old, I get very worried. Anyway, this thread reminds me to ask him again. Thank you.

Perhaps I should mind my own business, but I feel compelled to voice my opinion.

He's wrong.

What he's doing to his internal organs by being overweight and eating a lot of junk food doesn't get magically repaired by going to the gym.

For the sake of you and your children, he needs to see a doctor.

I hope your cancer is a thing of the past and wish you all good health.

 

[GreenPapaya]

Thanks December-fire. That's fine. I've been trying to tell him that for the past 17 years or so. My cancer is hopefully a thing of the past, I have a few more years of medicine left. I will need to stop buying chips, crackers and sugary stuff (stay away from Trader Joe's!). Thankfully he eats lots of veggies too, but will still eat a big bag of chips and a bag of cookies after those veggies. Weight and food is such a sensitive subject. Sorry for the thread hi-jack!

 

[mco312]

I'm so sorry @kenny. I hope your SO finds a match soon.

 

[kenny]

I hope you don't have to sell your FCDs!




Tell me about it.

There is a man within the family who is about 6' tall and must weigh about 25 stone / 350lbs. It's not muscle - it's just that he will eat endless amounts of crap and/or utterly ridiculous portion sizes.

I recall we went to an American-style diner once - he had a large main meal, but with a 'side' of an entire rack of ribs (which itself was another main meal on the menu), and followed that up with a 'Sundae to Share' all to himself. Made me feel sick.

He lives off 'energy drinks' and full-sugar fizzy drinks. He clearly has uncontrolled diabetes but refuses to acknowledge this or get it seen to. The last time he went to the doctor it was because he had a massive headache that wouldn't go away - the doctor told him it was because he had astronomically high blood pressure, and that if he didn't sort himself out, he'd be dead by 40. He is currently about 38.

With a third child on the way, and a first child that he shares with his ex (who does not wash the child, feed the child, wash any of the child's clothes, make the child clean their teeth or go to bed before 1am on a school night - which is basically child abuse in my book - seemingly because she's not quite right in the head) I would have thought that he would want to be around to make sure he can provide for the family and rescue his first child when they finally make a decision that they don't want to see their mother again. But nooooo....


I do understand that these things can be engrained in childhood before conscious thought, and that it can often be a mental health issue, but it is so frustrating to deal with. Treat them like a child and they will react like a child, trying to sneak 'treats' etc, but if they won't act like an adult and make informed, sensible choices, what choice do we have?!


Anyway, apologies, going off on a slight rant there...


I hope your SO is able to get sorted out and stay sorted out, Kenny.

Thanks OS.
I do hope that family member of yours sees the light.
It make take a health crisis though.

 

[kenny]

@kenny could he possible get into a diabetic rehab? One of my cousins is type 1 and was not following her diet, sugars out of control. She went into a hospital based diabetic rehab program to get her food under control.

Thanks, I didn't know there were diabetic rehab programs.
I'll look into it.

 

[lyra]

Oh yes, there are special rehab centers here too. My daughter's best friend's mother had to go to one. There also should be diabetes education programs available (free here, so hopefully same there) held at hospitals. Both patients and family can attend. I went to a special center last year called a Complicated Diabetes Center, or similar. There I got to see nurses, a nutritionist and an endocrinologist. It's kind of a preventative measure. My numbers were starting to slip and they changed my meds a bit and refreshed my memory so to speak. It really helped out because some of my ideas where much harsher than necessary, and it was causing me issues with low blood sugar. Anyway, there should be lots of help available. Compliance is up to SO. That is not a battle anyone else can win, to be honest. Hope he does well.

 

[Scandinavian]

Kenny, I don't know what to say. I'm so sorry! Life can be a 8itch.

 

[Nitedula]

I'm sorry to hear this. I hope a match can be found, and that you are taking care of yourself as well as of him.

 

[Arkteia]

Very sorry. Best of luck. Difficult times, he is so lucky to have you and his family!

 

[HappyNewLife]

hugs Kenny. I'm sorry you're going through this. Fingers crossed one of his brothers is a match.

 

[december-fire]

Thinking about you and wondering if tests have been started to determine if any of your SO's brothers are a match.

Try to take care of yourself.

 

[kenny]

First, thank you all for the good wishes.
It helps.

I owe several of you individual replies which I hope to get to in the next few days.
We're so busy now.

DFire, they haven't started the long process of evaluating the brothers yet.
Just getting SO onto emergency dialysis in the hospital has been the priority.

Normally it can take 2 or 3 months between the time the Dr orders dialysis and the day it finally starts.
First there are test and training and if they opt for that new type of dialysis it can take 3 weeks for the skin around the inserted tube to heal into a leakproof seal so dialysis can start.

Nothing is simple; everything is complicated and slow.
But he's been in the hospital four times, one week each, for the same thing in the last 2 months so they know know the kidneys are fully kaput!
But he is improving now that he has cleaner blood for the first time in perhaps years.
Kidney function can fall to 20% before the person gets medical attention.

About this other type of dialysis ...
It's called peritoneal dialysis, or PD. See graphic below.
Instead of the old type, where they drain blood, clean it, and put it back, PD involves no blood or needles (thank Glob! )
They pump 2 liters of a special liquid into the abdomen.
It sits there (making you look pregnant) for 4 hours while it somehow absorbs the same toxins that are absorbed by the blood dialysis machine.
Then, the liquid is drained out.
This is done in-home nightly by a machine, while you sleep.
Since it's done daily instead of 3 times a week your blood stays cleaner and you stay healthier.
Many can work once again, exercise and even travel.

SO is scheduled to start PD at home asap, which is in about 2 months.
In the mean time he'll get the regular dialysis at a center via a tube they just installed into his jugular vein.

There is tons of training he and I have to attend before this happens, even home inspections.

 

[yennyfire]

Hi Kenny,

I'm so sorry that you are dealing with all of this. I know quite a lot about dialysis and kidney issues, as my entire family (Dad, uncles, cousins and my sister and I) have polycystic kidney disease (PKD). My Dad and his brother have both had two kidney transplants each (the "shelf" like on a kidney is about 12-15 years) and my Dad was on dialysis for 3 years before his first transplant (luckily, he didn't have to go back on dialysis between the first and second transplants). That being said, I know it's new and scary and overwhelming, but you can do this! Your SO is so lucky to have you in his corner. I hope that this has been the kick in the pants he needs to get his health on track. As you know, they won't give him a kidney if they don't think he will take care of it. I hope that one of his brothers is a match!!

Know that we are here for you if you need to vent in fear or frustration. Sadly, it sounds like several of us have experience in this area and can offer some advice based on our own "lessons learned". Hugs to you Kenny!

 

[ksinger]

Kenny, I'm sorry to be so long in saying anything. I promise I've been reading from the start, and for what it's worth, I truly am very sorry you and your SO are having to go through this.

And this get's down to it, I have an acquaintance who is not a candidate for a transplant, and has been on dialysis for about 8 years now, and while he's living, he's not faring so well. I was so sad for you, and I was also afraid that anything I would think of to say other than "Geez, sorry." would be a big downer. I understand quite well that doom and gloom when you're in a tough spot is not always terribly helpful. But I see that things are so much more hopeful for your SO with the peritoneal dialysis - which my friend doesn't (can't?) use, and I didn't even know existed until now. How cool is that? It sounds like a much more endurable thing than going to a dialysis center 3 times a week. And of course, your guy has the hope of a transplant, which is the best.

I may not be one to offer sympathies all the time, but I do keep up and I wish you both the very best.

 

[azstonie]

Hi Kenny, glad to hear your SO was offered PD.

Re transplant and lifestyle changes/perception by Transplant Surgeon----with cadaver organs, Transplant surgeons want to see lifestyle that will promote longevity of the organ engraftment. When a patient brings an organ donation in themselves, these judgements aren't brought to bear one way or the other, the transplant typically takes place. The surgeon calls the shots if you bring no organ to the table.

 

[kenny]

To do PD the room (and especially the air in it) has to be sanitary, not to OR standards but dust is the enemy.
When you unplug the tube going to his jugular to connect it to the tube with the fluid there is a moment when dust can enter his bloodstream.
4 hours later it's vulnerable again when you have to disconnect and plug his catheter.

During connections NO airborne dust must enter the connection, and in-turn his bloodstream.
Infection is the main concern of in-home PD.

That means the room must be nearly dust free.
A room full of clutter means more things to dust regularly.
An empty room means quicker dusting of only the walls and floor and keeping bed linens very clean.
Currently that bedroom is CHOCK FULL of junk, nicknacks, collectables, tchotchkes, decorations etc.
SO is a junk collector ... not quite a hoarder worthy of an episode of a reality TV show ... but not too far from it.

They've told us they won't authorize the PD unless the room meets their standards.
This is a problem since SO admits gets self-worth from stuff he owns (he's certainly not unique there ).
Also he has enormous anxiety and fear of dying and dumping most of his possessions feels like a death-related process.

Everything is complicated.

 

[december-fire]

No kidding everything is complicated.

Kenny, your inner strength and humour will get you through this.

However, if it would help, I'm sure all of us here would be happy to purchase a FCD of your choice in recognition of your resilience in handling all of this.

 

[Matata]

Whatever happens, Kenny, I wish you peace. If there was any way any of us here could ease your woes, we would. All of us Kenny fans will walk this journey with you and give whatever support we can.

 

[lyra]

Would he accept the idea of renting a temporary storage unit? Then re-evaluate in 3 or 6 months whether maybe he could let items go? Just trying to be practical.

 

[Tacori E-ring]

I have a current patient on PD and she loves it. She has been doing it for quite awhile. The house needs to be clean which can be a barrier for some. Another patient was looking into it but has cats so they denied him. I get the sense it is more than that and he has admitted to having lots of stuff.

Regarding living donor...they can be turned down if deemed not physically or mentally healthy enough. It sounds like he has many options but even with living donor it is a long process sad

 

[Missy]

Kenny I am so sorry you and your SO are going through this and I wish you both all the best.
We are here for you when you want us to be and rooting for you and your SO all the way.

Life is Complicated. And challenging. (((Hugs))).

 

[rainydaze]

Kenny, I am so sorry for what both your SO and you are facing. You have always struck me as having incredible resilience; I hope that's true and helps pull you through. My best wishes to your SO, that he gets the kidney he needs and the wake-up call to help himself, and to help you help him.

 

[kenny]

Update ...

SO goes to surgery Friday to get that tube installed in his abdomen for the in-home daily (or nightly) peritoneal dialysis (which uses fluid instead of blood).
It's really good news that he got approved for that, since removing the toxins every day is better than letting them build up for 2 or 3 days.

He's currently getting hemodialysis (scrubbing the blood) at a Dia center 3 times a week, soon to be 4.
He's not tolerating it well (though it surely beats the alternative, dying).

He's like a yoyo - one day good, two days bad.
He gets excruciating cramps in his abdomen and his feet, which I think is related to how much fluid they remove from the blood.
Every other night he wakes up screaming/crying in pain.
Some days he can walk with a cane but mosts days he needs a walker, and some days assistance even with a walker to get from the bed to the bathroom.
The Dr. and nurses at the dia center says this is not unusual when starting dia, and they attempt to adjust the dia machine to minimize these issues.

He has so many medical issues, he's had at least one medical appointment every day for the last 3 weeks.
His income's gone and mine is slashed since I can't work much.

I have to drive him everywhere; he can't drive because he can't see well enough.
Decades of uncontrolled diabetes has damaged his retinas.
Last week they stuck needles in his eyeballs to inject some medicine.
In a month we'll know whether if it worked.

Happy Happy, Joy Joy.

 

[december-fire]

Kenny,

Thanks for the update.
I'm sure I'm not the only one who has been thinking about you and wondering how things are going.

Great news that your SO was approved for the in-home treatment, and I hope the surgery goes smoothly on Friday.

Is there a volunteer group who might be able to help by driving your SO to some appointments, staying with him at your home, or whatever would be an assistance to you?

I guess at this early stage you/your SO want you at all appointments, but trying to think of what might help you out a bit.

Continuing to send you positive thoughts and hugs.

 

[yennyfire]

Aww Kenny, this just breaks my heart. I am so glad he got approved for the peritoneal dialysis. That will hopefully improve his quality of life (and yours). I know it's all overwhelming and scary and I wish I could wave a wand and make it all go away. Sending hugs and support Kenny!

 

[Dancing Fire]

Kenny
That's a bit of good news... hope your SO feel better soon.

 

[BlingDreams]

Kenny, I'm sorry to hear that it's mostly still a struggle; I hope that the new treatment will ease some of your SO's pain.

I don't know you're handling it (seemingly) so well. It's one thing to help a spouse/partner if their condition is beyond their control but if they've knowingly let these problems develop (and even actively contributed to them) and have left you/me/whoever in the place where it complete upends our life... well, as I said I don't know how you do it. You must have a very tender heart under that gruff exterior you sometimes portray!!

Sending you big hugs, compassionate thoughts, and hope that the burden eases soon. Btw, there ARE usually groups that have volunteers to help transport patients so perhaps you can get some help that way? A break for you and the ability to possibly do more work. And is there anything we here at PS can do to help?

Hang in there...