Worried-Mom's first day of dialysis tomorrow :/

[NikaYvonne]

Hello Everyone,

I'm new to this site and posted in a different forum earlier. I'm 19 years old and just really need support as my mom will be starting her first session of dialysis tomorrow. Here is what I posted earlier today:

Hello all,
I am new to this site and I am so glad I've found somewhere to vent. I don't even know where to begin. My mother has been in the hospital for almost a month now. It started out as the swine flu and turned into pneumonia(in both lungs) If she wouldn't have waited to go to the doctors so long I think the pneumonia could have been prevented. Well she doesn't have the flu or pneumonia anymore(Just when we thought she was better) they diagnosed her with renal failure......? I remember about 3 months ago they diagnosed her with kidney disease(from diabetes) but now her kidneys are only working at 10%...maybe less...? I've been doing sooo much research ever since they said she will have to go on dialysis and I really think that the doctors could have realized that her kidneys were failing a looong time ago. for about 10 or more years now she suffered from severe itching(She pulls her her out to get rid of the itching that is deep down in her scalp) She has had problems with swelling now for a very long time, very fatigue, vomiting and so on, but the doctors just never knew what it was. She is 45 years old, had a liver transplant 3 years ago, has different medical problems and now kidney failure. I just don't know what to think....I love her so much and wouldn't want anything to happen to her. The doctors say that they want to start dialysis soon, but want to wait to see how the kidneys function in the next couple days which I don't understand since she has been in the hospital for a month(3 different hospitals)..I just don't know what do think. I've heard and read a lot of different stories about dialysis, I'm just scared for her. They are going to put the access site in her neck since the veins in her arms are so tiny, it's just crazy to think about. I feel so bad for her, wish I could do something. I would donate my kidney to her right now if I could.......Sorry for rambling on.......


UPDATE:
I'm sure there is, we are all new to this. My mom called me not too long ago from the hospital and they said they are giving her first dialysis session tomorrow. I'm pretty scared, but at the same time I'm relieved that they are actually going to treat her since she has been in the hospital for almost a month with hardly any treatment. She really wants me or somebody to be there with her when she gets it done because I think she is really scared to. I don't know what to think. I just hope everything goes well. I just want her to feel better. They are going to put the access site below her neck. Please say a prayer for her. I will keep in touch and let you know how it went.

[NikaYvonne]

Also I forgot to mention that this just happened so quickly. The whole time she was in the hospital, they never even really talked to her about dialysis. She gets the idea that it cleans the toxins out of your blood, but that is about it. I've been doing so much research so I can help her through it. I know a very important thing is her diet. The first 1 1/2 weeks she was in the hospital, she didn't eat anything. Just drank a little bit. Her appetite is coming back slowly and she picks at her food and eats very little. She has been drinking a lot. I'm just worried that she will not follow the right diet, or not even eat and it will put her at risk on Hemodialysis, any advice on this?

[Hanify]

Hopefully she'll start to feel better soon!  There are lots of threads on here about diet - you can search by topic.  Good luck!

[ceejster]

Hi NikaYvonne - I've been in your shoes and it sucks, but things will get better. My mom was very ill and in the hospital for weeks and then a surprise renal failure diagnosis.  But wow, a liver transplant and now this? Your poor mom! At the very least, once your mom has been on dialysis for a little bit things should get better and her appetite should improve.

As impossible as it is, try and take it one day at a time. Don't forget to take care of yourself too - we will definately say a prayer for your family at my house tonight. Hugs!

[RichardMEL]

phew - sounds like she's had classic symptoms of renal failure for quite some time. It's amazing the docs didn't pick up on that (but then again I went to UCSD ER with a bloody painful foot in December 2000 - which turned out to be gout - I disclosed to them my full history of known kidney disease and all that and they had no clue. When I returned home my neph said "oh dear yes gout is common in CKD patients and promptly put me on meds... why the dolts at UCSD didn't twig to that is beyond me.. anyhoo I digress).

Try to not be scared about your mom's dialysis - it's designed to help her get better and curb those horrible sideeffects - swelling from fluid retention, itching probably from high phos levels, vomiting etc from toxins in her blood and so on. This should, over time, help her feel more normal.

Yes it is a worrying/scary time but remember the thing you and she need is information. Be prepared to absorb a lot and you (and she) SHOULD ask questions of the treating team about her exact situation.

the thing is that dialysis is there to make mom feel better and stop her slide - in this sense it is a good thing. Try to not be too scared - people do it all the time(sadly) but are, in general, dealing well with it. Hopefully in a few weeks to a month your mom will be more stable and feeling more like her old self - which can only be positive for you all.

 

[billybags]

NikaYvonne, You poor thing, sounds like you and your mum have been having a bad time of it. Having kidney failure can be a life changing time for all the family, you have to stay positive, ask many questions, research as much as you can. Your mum will feel better now she is on hemo, it may take time, it is like every thing else they have to tweak things to get what is best for you. Keep posting and let us know how your mum is getting on.

[monrein]

NikaYvonne, I'm so sorry to hear of all that your Mom and your family are dealing with.  Being informed is the best thing you can possibly do and be sure to ask questions about everything and keep on asking them until you feel completely clear on the meaning of the answers you receive. 

Sometimes, following a liver (or other organ)transplant, the kidneys fail due to toxicity from the anti-rejection drugs.  Cyclosporine can certainly do this and so must be monitored carefully to maintain a decent balance .  My first transplant failed in this way after 23 years but that was a pretty long time so we seem to have done OK.

I wish you and your Mom the best of luck as you navigate this new situation and please ask us any questions that you may have.

[Stacy Without An E]

First of all, your mother is very lucky she has someone in her life that cares so much for her well being.  Some of us don't or will never have anyone like that to help us through Dialysis.

Second, until they can get her a fistula, the neck or chest catheter's (I've had both) are relatively painless, just uncomfortable and annoying from time to time.

Just be patient as your mother gets a couple weeks of treatment under her belt.  She may have some side effects while adjusting (nausea, vomiting, weakness, exhaustion) but once her body gets adjusted, she should do well.

As your and your mother endure these health issues together, you may find that you and your Mom will become closer than ever. 

That is one of the side effects that will last you both a lifetime.

[galvo]

Nika Yvonne, it's a trying time. Spend a lot of time going through the posts here. It will give you great understanding, and with that understanding things will be a lot less scary.

In the last three weeks, I have been rushed to hospital, had a neck catheter inserted, had it removed and replaced by one in the chest and have undergone 10 or so bouts of dialysis. I'm feeing much better than I was, and your Mum will be the same.

She's very lucky to have you and now the pair of you have us!

Best wishes to you both. You keep in touch.

[lizabee]

Sorry to hear about your Mom, hopefully she will start to feel better with the dialysis.  You will definately find support here!

[RichardMEL]

So we want to know - how did mom's first day go?

[Mimi]

I hate to hear your Mom is having such a terrible time.  I am not on D yet
but when I go on I will know what to expect because of this board.  Keep reading and you will get all your questions answered.

By the way Welcome to IHD.