Oh gosh my friend!!!!! You have been on my heart, and I was looking for a report from you. Will continue to keep you in prayer, and hope that as you have seen some of our stories, it will encourage you and give you hope to keep on keeping on.....

I tell you, my cats were one of my biggest issues about having to go out of state for so long. I was so worried that something would happen to them while I was gone..... so I certainly understand your broken heart. Remember, you loved him well...... and it was a wonderful journey for you..... I pray that your heart will soon mend and those sweet memories will overpower the sadness. Blessings to you dear!!!!

Heather

Thank you for your kind words Heather. I'm glad you can relate to how I'm feeling about my cat- it is so raw and and I feel so guilty about not being there with him when he diee because I just know that he will have noticed. He was always so timid and I was the only one he really came to upon request because I was gentle with my hugs and cuddles whereas everyone else gave him rough tickles which I knew he was a bit unnerved by. My husband daughters and their boyfiriends stayed up all through night with him for 2 full days whilst he died peacefully- They continued to moisten his mouth and gently brush him so hopefully he had the best journey possible to his new life (wherever and whatever that might be). His brother Casper is pining- which is tough on us too. He is gonna get spoiled rotten and he is same age so we're alreay fretting about him aswell. I know these horrible feelings will pass and was very greateful to receive your reply- Thank you so much Julie x- Hope everything is still going well with you- I have been c\athing up on posts and journals but have not managed to read everything yet but can tell you that hqving found this site makes me feel as though I have my own private counselling service and really helps- especially when times ae rough. x

Hi, Julie!

Sorry about your cat.

But, as it happens, the grief you feel for your cat may be connected to the grief you MAY be subconsciously experiencing due to the "loss" of your "bodyparts." Yes. This is in fact a loss, even if the organs are diseased. Remember that they have done service above and beyond the call of duty considering the condition they're in.
Give due respect and honor to your organs. They did as well as they could.
And then, accept the "new reality" as you transition to being a dialysis patient.
You will adapt to this "new reality" sooner than you think. And remember, you are not alone!

Peace and Blessings!

Wise words, Coach. I remember reading something about women not being given enough emotional support after hysterectomies - they really felt as if they were losing more than just a body part and I don't see why losing kidneys would be any different. Has anybody experienced this?
Julie, so sorry about your kitty. It's tough to lose a dear pet, especially after such a long time.
Lisa

So sorry to hear of the loss of your pet. It is amazing the bonds we build with our animals. It sounds as though it was well loved by you and your family. He's in a good place now. I'm so sorry to hear about all your pain you've been having. You knew it was something different and I'm glad they admitted you to do further testing. If it is what it seems, your gallbladder, it makes sense to take it at the same time. Will your dialysis sessions always be 5 hours? Hope you eventually can get set up with them closer to home.Have they given you a diet (food) to follow. I am only assuming you will have to have some nourishment to build up strength. I've not gone through this myself but I'm keeping you in my thoughts and prayers. Nov. 2nd will be here before you know it. When you are able please be sure to let us know how you are doing. We are all thinking and praying for you. Andrea

Thank you all for such informative and positive responses and the kidn words about my lovely pet Pizza. I am in the dumps at the moment, and no matter how hard I try I am finding it difficult not think aout the risk factors and stats of me coming round after op. They have already explained that the risk is increased due to double nephrecctomy and low kidney function of now 8%, but they haven't explained that the sickness pain and vomiting being caused by gallbladder/liver is going to add to this risk factor. I was too scared to ask as my main symptom with this new 'condition' is that I am really struggling to breathe- and once panic breathing kicks in with the pain spasms I think I am on my last legs- because as you know hyperventilating makes breathing much more difficult.. I'm so worried about dying and it is only just hitting me really hard now- probably due to loss of my little PizzaPudding but also because the date is much nearer now that I thought- I had lost track of all time. I want to prepare my children 17 & 19 for the worst- no to worry them but to enable to me to tell them things I want to tell them for the future etc. Even though this is at the back of my mind for time being I also have added stress of kidneys being cancerous- which to be honest just feels like a dream at the moment and I don't think I have the mental and emotional capacity to even consider this at the moment. My husband is the love of my life and he has improved in his caring capacity bringing me food and drinks and pain killers- in fact showing a lot of concern. but realy what I needright now is some emotion from him- I need to feel loved ( and I do know deep down that he does love me) he has declined when I have approached him to make love even though I am willing to hide my pain to share some moments like this with him before I go in hospital. He can see I am getting sicker and sicker and I do understand why he declines but it just feels like I am losing my womanhood as well as everything else. Sorry to ramble on and on and on- it's early hours and I can't sleep and I just want to tell someone who is unaffected about how I am feeling. You have all been really exceptional friends in such a short space of time and I really don't know how I managed without people like yourselves before finding this forum. I start dialysis on Tuesday so will try to put a bit of an update on after my first session, but please don't be worried if you do not hear from me for while. Post op I will try to get my daughter to post a brief update of how everything is going and I will be back before you know it. Good luck tyo you all in your own journeys and we'll speak again soon. Julie x

Hi Julie,

I just you to know that you in my thoughts. I can't imagine how it must feel to have all of these things converging at the same time...the nephrectomy, dialysis and having the gallbladder removed, not to mention the death of your dear PizzaPudding (which by the way is the sweetest name for a cat!! Love it).

I can't know exactly how things will go for you, but I can speak from some experience. I too was worried I wouldn't make it through the nephrectomy. I mean, I believed I would do fine, but I had fears. I had enough fear to write my husband son and several friends "goood bye" letters in case I didn't make it. For me, writing the letters was therapuetic because it allowed my to make my fear real. It also allowed me to truly appreciate the good things about my life. Having to articulate my love for my family in written words forced me to clearly see how much love I have had in my life, and how much I have to be greateful for. That gave me a sense of peace.

Dialysis has its challenges but overall I found it to be very manageable. I did feel very tired and pretty "worthless" on my dialysis days. but on my off days I felt pretty good. I was able to get some things done, and even have some fun on my off days. Within about a month, my energy was better than it was before the bi-lateral nephrectomy.

Just yesterday I was remembering how difficult the emotional part of the journey was. I remember coming home from the hospital after the nephrectomy. I wasn't in pain, but I had such an overwhelmingly "different" feeling...a feeling of physical fragility, a feeling in my gut that was partially physical and partially psychological that felt strange and afraid but unable to express those fears to anyone because they were hard to define. As my body healed, those feelings also healed. My only advice is to let others take care of you even as you must also move and walk and challenge yourself physically to heal better. Take pain medication if you need it and do not accept that you must live in pain.

I'll be sending you good healing vibes and prayers for your health and happiness.

You are not alone.

argh! My posts are always rife with typos! I really can spell, I promise...

a word about grief and pets: I lost my beloved Catfish nearly 3 years ago, at the same time my brother was dying of liver cancer. the vets offered treatment that may extend Catfish's life for a very short time (his kidneys were failing) but with my brother's illness I felt I couldn't cope emotionally with both. my brother's journey ended just a month later. I still grieve his loss.
a few months later I had a dream of other cats from my past, all intertwined. I woke up crying as If I couldn't stop. I realized that I never really grieved the death of Catfish and was doing it now.
you are in a rough spot in your life, starting dialysis soon.
your dialysis probably won't take 5 hours but there is preparation and time after while bleeding stops. it takes a big piece of your life but you will feel better.
a word of advice, if you are still producing normal amounts of urine do not allow fluid removal. you will feel a whole lot better. you may have to fight with staff about it, they take a cookie cutter attitude toward dialysis patients and want to remove fluid from everyone because most dialysis patients do not pee. also do not cut back on fluid consumption if you produce ample urine, again, this is standard practice for most dialysis patients but PKD is a whole different animal and many in the dialysis field are not taught the difference between PKD and other kidney diseases. believe me, it will make so much difference for you.
of course if you don't urinate this doesn't count but if you don't you would have been on dialysis a lot sooner.
good luck.

Hello Alinds and Spiderwoman- Thank you so much for your words of support. Is this normal? I read replies to my posts and then re-read my post which I have usually typed up in early hours of morning when I am at my lowest and can't sleep and cannot remember having put half the things in it- It's really wierd - it's like my thoughts are subconsciously getting typed up without me knowing it. Does this happen to you (it must be the stress). During the day everything seems so much more clearer and I am more optimistic but that's probabaly because I don't allow myself time to ponder as much. I am so glad the feeling of hopelessness and fragility are normal because recently it feels like death could happen so easily when I'm feeling really sick,and I really don't know how the dialysis is going to hit me this week which could make me much worse for next week when I have my op. I will certainly bear in mind what you have told me Spiderwoman about the draining of fluid. Yes I do still produce urine although this is only a small amount, but to be honest next Wednesday that will stop when kidneys come out. I'm so glad you understand how losing a pet actually feels- I know this cannot be compared to a human life such as your dear brother, and I am so sorry for your loss, but I still feel as though my heart has been ripped out and I still have his 'brother' Casper who is a couple of months older although we raised them both together from being kittens, and now also feel worried sick about him. My husband and daughters are feeling pretty much the same and we are getting up in the night checking on him etc- the poor cat is being mithered all the time. Also he is obviously suffering aswell and keeps sitting alone with his face to the wall- and this is really upsetting to watch when we cannot tell him what has happened and where Pizzapudding has gone. I know things will get better and dialysis may be hard at first but will probably improve my quality of life especially when the kidneys and gallbladder come out. You never know the tumors may be benign and I might get listed for a transplant. I know I need to think positively so that the stress does not affect me physically so I will try my best. Thank you for being such good friends to me Julie x-
Oh and don't worry about typos- i've given up now- I should have had Typo for my username.

Hi Julie,
I hope you're not still awake as I type this! I am glad that daylight brings clearer, more optimistic thoughts to you. A word about preparing your kids - I like the idea of writing down what you want them to know about you, about life, about how much you love them, in case things go terribly wrong and your worst fears come true. I don't like the idea of you telling them in advance. Allowing them to live in denial is probably the kindest thing you can do for them. Actions speak louder than words, anyway, and loving behavior, openness about the joy they bring you, will give them more strength than a talk about what to expect, or warning them that they might lose you. WHICH THEY WON'T, that's what we're all betting on.
Sleep well.
Lisa

HelloLisa

Thank you so much for your advice and to be honest I have been thinking about this a lot over last couple of days- glad to say I've still not said anything yet. Lindsey gave me some god advice earlier to write letters to explain the things I need to say which only need to be given to them if the worst possible scenario happens (which I'm sure it won't)- so I'm planning on using my dialysis time to do this where it wil lbe in private providing of course that I am able to. I am feeling tons better today even though I am still in a lot of pain but the sickness and feeling of weakness and malaise has subsided for the time being so I don't feel as fragile as I did which caused me to have thoes real scary thoughts in the first place. I'm glad I am able to chat to you guys on here as you keep it real for me and always provide sterling advice . Thanks so much Julie x