first haemo treatment !

[brenda seal]

Well guys , Laurie had his catheter inserted yesterday morning and it was a tunnelled one in his chest . They took him immediately to dialysis - I was allowed to go with him . God I wish I wasn't allowed to go ! They wheeled him in with all these machines going all around us  , nobody welcomed him or made any attempt to put him at ease . They just went about their business hooking him up to the machine , hardly speaking to us and not explaining a damn thing . I could see the terror in Laurie's eye ( he only has one ) and desperately wanted to squeeze his hand but could not get close enough .
The blood started to flow through the tubes - they are much bigger than I expected and I am ashamed to say I had a mini melt down at that point and howled like a baby . The nurse left and I put my chair closer to him to reassure him as best I could - immediately he started to change colour and look very ill . The next time the nurse walked past I said I didn't think he was very well . She looked at him and then at the machine and said " Oh he's crashed , I will stop the U something and give him some saline - you should have told us before " .
They had him on the machine for four hours and every minute was torture for him . We finally got back to the ward and got him settled and he dozed off to sleep until lady in the next bed's visitors arrived including toddler boy twins who are very cute but very noisy . He asked me to put him in the wheelchair and take him for a walk , that lasted for ten minutes and he began to vomit so I had to take him back to bed . He then began to complain of blurred vision !
All in all it was the day from hell ! Can't wait to get back there today to see how he is . Going to be another stressful day for him as they are going to do some scans and a echo something on his heart to rule out any other reason as to why he can't eat and is losing so much weight . Keep you posted . Brenda

[MaryD]

It certainly sounds like the day from hell, Brenda.  I hope Laurie's feeling better today.  Keep posting!

 

[cariad]

Oh, sweetheart! You should have told us?! What is that? They explain nothing and then expect you to magically know when to call for help.

I found that dialysis staff are genuinely not used to patients who want to know what's going on. For me, asking a question here and there or just making a comment on the process got them talking a bit. Perhaps try asking them to narrate what they are doing next time they hook Laurie up. If you can get them to do this, just listen a few times and then ask questions once you've got the basics down. I was a mess after every dialysis treatment, but hopefully he will stabilize and this will get easier. I'm sorry it was such a nightmare this first go. Fingers crossed that it gets better soon.

[boswife]

this is so awful.  I read it earlier from my phone and have felt sick for you ever since.  I know the hurt and fear of the 'partner/loved one' and i nearly couldnt bear the fear and pain and worrys of our hospital stayes so im espacially worried for you as the partner. I know how hard it can be and i pray for strength for you so you can give him all he needs right now.  Poor dear man.. This just is awful and i so hope it gets better for you real soon.  We have had some good years now since that whole 'start' to get better because of dialysis, but it can be such rough going.  From being here for these years, it has helped me to believe that all will be ok, you just have to stick out these times till the road smooths out.  Bless you both and somehow get your rest so you can face another day giving him the care you will feel good about giving.  I wish you the best... with love from another whos 'been there' 

[MaryD]

How is Laurie going, Brenda?

[Rerun]

Ask them how often his Blood Pressure is being taken.  I'd put him on 15 minute BP checks.  Crash means his BP is low and they shut off the UF (Ultra Filtration) or pulling fluid.  You can see on the machine where the BP readings are.

So much to learn.  You can do it.     

[brenda seal]

The second treatment was on Thursday and did not go well - he crashed again , today was better and BP remained stable - they said they would only take a litre of fluid off him . He was very cranky today and I could do nothing right , which was encouraging as he has not had the energy to be cranky before . I sneaked a look at his notes as they put them on the bed as he is being transported from the ward to the dialysis department - freaked myself out - he is described as being severely malnourished and being wasted . His weight this morning - 59kg ! could not find blood test results and when I asked they said they were only numbers and not important at this point . He is still very weak and lethargic and not eating very much - he at least is trying to eat a little . The dietitian has been several times and keeps adding things to his meals and protein drinks . He has had scans and a test on his heart but no results as yet . Seems all that can be done is being done and I am just hoping each day for a little improvement . Two days ahead now until his next dialysis treatment , I can concentrate on trying to encourage him to eat . The dialysis days seem to wipe him out completely . Will this get better ?

[Mr Pink]

Hi, I've been following your story. I started dialysis last week. It was kind of tense on the first day, but has been a breeze since. I've felt a little bit better with every treatment. I know it is different with each individual, but I do believe that with every treatment, I will feel better and better. If your husband has the energy to be cranky, then that sounds like an improvement. The expectation I have is that it will take a few weeks beofre I feel the real benefits of dialysis, but having said that, I'm already feeling them. Maybe that will be the same for your husband. What ever you do, don't give up on him. The treatments themselves don't actually hurt as such, but with blood presure and a whole host of other issues, anything is possible. At 59kg, it doesn't sound as though there is much of him. His appetite will return as he improves. I'm not really sure what the policy regarding taking fluid off, especially since your husband seems to be fading away to a shadow. Hang in there. The first couple of weeks can be rough. This is when he will need you the most, even if it might not seem that way. Good luck.

[MaryD]

Cranky, hey!  That IS good news.

[Leanne]

So sorry honey.  But to be blunt, the dialysis bunch sound like bholes to me.  Telling you that you should have said something?  Since they failed to explain anything , how were you to know what to look for?  My first treatment they told me I might get sick or vomit even. 

A bit before I started dialysis, my appetite took a very long and distant vacation.  It took some time for it to return and when it did it was slow.  I have been on dialysis since november and still I have days of little or no appetite.  Nausea is a frequent friend to me also. 

Those machines should alarm when his bp is too low.  Also if my bp drops too far I feel nauseated and will sometimes have blurred or wierd vision.  Or clammy skin.  Thats just me but maybe that helps.  I have learned how it makes me feel and he will in time.  But his nurses should be on top of that.  Hugs to you both.

[lmunchkin]

Oh Brenda, I just posted on another thread of yours to update us.  Then I read this.

All of what you discribed sounds normal.  Over time as he gets regulated and they determine his Dry Weight it should get smoothed out.  Its not an over night thing, it does take a little while. But what did they find out on his scans?  Other than his kidney disease, is there any other complications looming?

Still lifting you both in prayer.  You guys are tough!

God Bless,
lmunchkin

[Grumpy-1]

Brenda  -  Keep asking questions.  Talk to your Dr about the amount of fluids they are taking off.  If it is too much and he is crashing all the time, the Dr should change the treatment prescription (the clinic sets the machine to what the Dr prescribes)  If Laurie is too weak to ask questions - you jump in there and be his voice.  You need to know what is going on with his treatments and the effects they are having on him.  Yes, the first couple times are rough, but as the treatments are adjusted to him and his needs, then it will get better.  If I remember right, I too lost my desire to eat at first, still haven't gain it back completely and that is after 3 years of D.  Grumpy

[brenda seal]

Thank you all for your encouragement . Well we finally have some good news ! His bloods have improved after 3 sessions and he is a lot brighter and trying to eat a little , has walked with a frame up and down the corridor and has had a shower with assistance and has even had an attempt at shaving! He has joined in the conversations with his room mates and started bossing the nurses round . Today's dialysis session went quite well until the end , they had him on for four and a half hours and this time his blood pressure remained stable . Close to the end he suddenly got a massive pain that started in his back and worked through to the front , they ended up taking him off as it was near the end and gave him oxygen - it lasted a few minutes until eventually the pain subsided .
As for the results of the tests and scans  - his heart is fine but they have found a lesion on his left kidney , it is very small but needs further investigation . The doctor said it was quite common for dialysis patients to have these lesions and as it is only very small they will just wait a year or so and then re-scan it .
Today he was seen by the head and neck clinic as he has numerous cancers on his face and has missed appointments this year as he has been so ill . They have organized to operate and do the whole lot in one go on 31st October , he will lose most of his right ear Oh dear !  The local kids already think he is a pirate because of his eye patch .
He will probably be discharged tomorrow and then they will transport him by ambulance back to the hospital three times a week for dialysis until he is stronger . We are very lucky to have these services available to us . The social worker came to speak to us today to ask if we needed any other help at home with cleaning etc. I politely declined this offer , it made me smile as even when Laurie was fit and healthy he never did housework - not in his job description he tells me .
In conclusion it has been a busy day and I am a mixed bag - happy he seems a little better but apprehensive about the challenges ahead . One day at a time hey ?

[Grumpy-1]

Sorry to hear about the cancers.  It seems that a lot of folks here have other major issues beside kidney failure and the those results.  I hope you both can keep up the good spirits and continue forward.  Keep us informed and again we are here for you.  Grumpy

[MaryD]

Brenda - That all sounds really good to me (except for his ear).  I wonder why they didn't do all this earlier, though.  You must be delighted to almost have the real Laurie back.

I will keep my knees crossed for Laurie on 31st.

 

[brenda seal]

Yesterday at dialysis Laure was assigned a different nurse - Wow what a difference , she explained everything and encouraged questions so I learnt heaps . She came by frequently to check on him and was efficient and charming . He is still finding it all very taxing especially the last half hour . The trip home and getting him back to bed is an ordeal but he seems ok the next morning . Still weak and eating small amounts but hopefully this will all improve with time . Two days off now YIPEE !!!

[Mr Pink]

Having a good nurse obviously helps. That won't always be the case, unfortunately. It sounds promising that you've noticed some improvements, albeit minnor ones. I guess the whole thing is a slow process. I'm two weeks in and feel much better. If he's feeling less that ordinary in the last hour, my guess is that they are taking off too much fluid. Once they assertain his dry weight, that should stop... hopefully. Keep hanging in there.

[brenda seal]

Mr Pink , I am glad you are already feeling better . I think I read somewhere that you are in Australia as we are . Are you in Sydney ? It seems the system here is quite different to America as dialysis is done in the hospital . I imagined everyone sitting around chatting and joking with each other as they received their treatment but I was so wrong ! The atmosphere is austere and depressing .

[Mr Pink]

Mr Pink , I am glad you are already feeling better . I think I read somewhere that you are in Australia as we are . Are you in Sydney ? It seems the system here is quite different to America as dialysis is done in the hospital . I imagined everyone sitting around chatting and joking with each other as they received their treatment but I was so wrong ! The atmosphere is austere and depressing .

I'm in Melbourne. I've recently been put into the care of a satellite centre. They seem pretty friendly so far. They've been very up front with a whole host of information. Most of what they have told me I've actually already learned from this forum. I couldn't imagine it being much different in Sydney, but I'll guess I'll find out for myself when I get up there at some point to visit friends. I agree that we're lucky to be going through this in Australia. It doesn't cost a cracker and most of the folks are pretty laid back. The folks at my base hospital are super stars, in my opinion. They're friendly, very professional, and have made me feel very comfortable going there. They made a rather difficult period seem not so bad. A big box of chocolates will be going there way come Christmas time.

[Whamo]

I hate hemo.  I've been doing it for over a year, and I'm switching to PD. 

[MaryD]

Brenda

If Laurie took months to get into his condition, it may take a while for him to make a decent return to reasonable health.  Hang in there!

 

[jeannea]

I think MaryD is right. The docs always said it was easy to get in bad shape and took forever to get back in shape. Take albumin for example. It can only take a few weeks to decrease to a really bad number. Then it takes months to bring it back up. I spent 23 days in the hospital a few years ago really sick. Then it took me 3 months to walk without a walker.

I'm glad he had an ok treatment. Even with different nurses or techs, tell him to ask questions any time he needs to. It helps to know what's going on.

[lmunchkin]

How are things going for Laurie now Brenda?  Is he finding some relief yet?  Been thinking of you girl.  Be sure to take care of yourself.

God Bless,
lmunchkin