Hi Norma,

Sorry I haven't been around much. The kids are on holiday from school and husband has been off for two weeks, so we've been out and about a lot. The trouble is, it's very tiring! My eldest son had to pull me up a hill on Friday. My youngest then went down with a really horrible D&V bug, so I've been busy with him and making sure we minimise the chance of everyone ending up with it. In addition, my dog is ill and we've been up and down to the vets.

I had an ECG a few weeks ago, and all was apparently fine. However, part of the view of my heart was obscured by my liver, which was descibed by the radiographer as "very pretty" and "like lace" . I could have done without that. It just looked like a load of holes (the cysts) with very little surrounding tissue.

I hope your swelling is improving Norma. Just drinking water can help with fluid retention, as it encourages the body to get rid of more. Other helpful foods are : lemon, oats, celery, cabbage, beets, ginger, carrots, apple cider vinegar, cranberry juice, tomatoes, cucumber, watermelon, garlic, artichokes and asparagus.

Love to all,

Chewitt

hanging in, chemo taking a toll and I lose some of each week recovering from treatment. despite it all, transplant doing great after 9 years. hope for all waiting for or with a transplant.
sorry Chewitt things hitting all at once. enjoy the calm when it slows down.

Good to hear from you girls, I worry when no one is around, old age I guess! The swelling is slowly improving, don't know if it's the celery I am eating like a bunny rabbit or all the water with lemon that I am drinking. My body has been so used to diuretics that I have to wonder why they give them to us in the first place. If at my age, the body can retrain itself to eliminate fluid, why was I ever put on them to begin with. Oh I understand short term or other medical conditions but I have been taking them for probably 30 years!! ???

Anyway, I hope things calm down at your house chewitt and yes that is strange that the doctor would describe your liver as "pretty". Very strange, especially since you wouldn't normally see the liver at all on a heart x-ray??? I wonder how big your liver really is? Do you know? Doesn't sound good anyway. Helen, hang in there, you can do this but I know it must be so hard. I have been thinking about my sister these past couple days and missing her. I think I am losing my faith, the longer I live and the things I see, can't help but make me very unsure! Keep strong Helen! Are you able to eat ok or good enough anyway? Does your daughter come and help you, the one who is a dietician? I hope so! Well love to you both girls and let's keep on touch... Norma ...

Hey Norma, Helen, Chewitt, good to catch up with you all and hear how you are doing, it helps to have conversations with folks who understand, doesn't it?

I have been going through a long house remodel, which is very hard on me. I am a very much quiet (but not shy) extrovert, and highly sensitive, so this has been difficult. I had most of the summer off, as my brother-in-law who has been doing the work (thank goodness) took a long vacation, and then has been working on his house, but soon my kitchen will be completely redone. So my house has been all discombobulated all this time. As well, I have had a lot of company, most of which I really enjoyed. But now this last couple weeks, my blood pressure went up, so had to break down and take the meds that I have. Dr says that you can't just take them now and then, either take them full time, or not. So I am taking Bystolic, in small doses.

It is my 3 year kidney transplant this week, where I had to fly down to Seattle and my donor had to meet me there from Indiana. Good memories of all that, but I realize that the immunosuppressants have really had a toll on me, as well as the kidneys growing and taking up more space. I just try to take one day at a time here.... looking for beauty... Daylight is starting to shorten here in Alaska.

So glad your transplant has been doing well Helen, that's so awesome, mine is too. And I do hope that it continues, as well as the %*@# cancer goes completely away.

Chewitt, those technicians can really make some crazy comments, can't they? Dang. Hope you and your family make it past this bug and come out the other end strong.

Norma, thanks for checking in with us all. Glad to hear that the swelling is improving. I agree, what the heck where they thinking about a diuretic!? Dang. Perhaps your body is just detoxing from that and getting used to working without it, I sure hope.

Big hugs and blessings all around. I also hope that some of the others check in here!

Love
Heather

congrats on your 3 year anniversary Heather. every milestone is a miracle!

Good to hear from you all and to know others are still around if we need support.

Norma, my liver is ENORMOUS. I don't know exact dimensions as I haven't had a scan for several years now, but I can see and feel how large it is for myself. I look like I've swallowed two watermelons. Ho hum. Keep plodding on. Hope the swelling continues to diminish. After thirty years of diuretics that's a lot of adapting and is bound to take time.

Helen, keep strong. We're all with you in this. That is excellent news about your transplant. It's good to be reminded that there is hope.

Heather, three years! Where did the time go? I know what it's like having work done on the house, but it's great when it's finished. Hopefully you can keep your BP under control. I'm taking the smallest dose of Losartan and coupled with a very low sodium diet, this seems to be keeping things in check for the time being.

We avoided anyone else developing the D&V bug, but tomorrow is exam results day for my eldest son, so it's still not calm here! Also, I've hurt my foot, so that's something else.........

Take care everyone,

Chewitt

Chewitt, I was just reading about a woman from the UK, who came to the US for a liver resection. It was done at the Mayo clinic! They literally took 10 pounds of liver from her!! Some deroofing and cauttirazation of some enormous cysts so they won't come back!! She even sent a before and after pictures! It was amazing! You don't have to suffer like this, you can have a resection done and I can't imagine why they wouldn't do it in the UK? If I were you I would do some investigating, this is being done everywhere anymore! Her pictures were astounding! She easily looked as if she was 9 months pregnant, since the resection, her tummy is flat again! The regrowth is 5 percent a year, imagine how long it took for them to get that large! Investigate!! Lots of love, Norma ...

Norma, I saw a liver consultant about three and a half years ago and was told that I am not a suitable candidate for ressection. For this, an area of liver needs to be free from cysts, with one lobe being unaffected ideally. I have no discernable cyst-free liver tissue at all. The entire organ is filled with cysts of all sizes. Ressection would be would be pointless and dangerous. I need a new liver, but I'm not ready for that massive step yet. The policy may be different in the US, but that's what specialists here deem to be the most appropriate approach.

Chewitt

I don't understand why chewitt? The woman I am talking about had tons of cysts on the lobe they took off? I wonder why it would or would not make any difference? I think they are going to start doing it in the UK!! Keep your eyes and ears open. The woman I am referring to says she has her life back again and can even bend over now which she couldn't do before! 3-1/2 yrs. is a long time in PKD years! Go to a new liver consultant, you might be surprised! Love you honey and always thinking of you and Ruth! Norma ....

Norma,

One of the reasons is the very high rate of serious complications associated with ressection. As massively cystic organ is a difficult thing to work with. There is also a high tendency towards adhesions after this surgery, making future transplantation (which will still be necessary because ressection just buys a bit more time - it's not a long term solution as the cystic liver just keeps on regenerating) much more difficult. As transplantation of a huge cystic liver is already extremely difficult, it would not seem wise to complicate things further, or even make transplant no longer possible. Studies have shown that there needs to be at least 30% preserved liver tissue for ressection to be a viable option. I have none. I'm guessing that the person whose story you've seen had a diffrent clinical presentation from mine.

Chewitt