Hello! And welcome to our group! First of all your doctor must be INSANE!!!! Fatigue and every other symptom you describe goes hand in hand with PKD! Everything!! I can't write long now as I was just checking me messages but I will be back, rest assuredly! Give everyone a chance to read your postings and you will see for yourself! I hope you are seeing a kidney specialist, if not, it is imperative that you get to one like yesterday! You are not crazy, your doctor and husband are crazy! Lots of love, Norma ....

Thank you for your reply Norma!
Thank you. This is why I sought out a forum, I was starting to think I am crazy... I remember my Dad having naps all the time but he never complained... He did retire early though, at 55, so he had a lot more free time to relax ( rest).. He is gone so I cannot ask him and again, the doctors don't know enough about this disease. I don't think it is like other types of Kidney failure that they are accustomed too. I have seen a nephrologist about 11 months ago, I get to see him again in the summer. He did not seem to be a wealth of information either.. Just did my labs looked at my ultra sound and said see you in 18 months. I had a bad case of C diffe last year for about 6 months. Was close to being hospitalized but managed in the last round of intravenous antibiotics to kick it. It had a detrimental effect on my function which got down to 30 which is when they sent me to the neph. It is now up to 35 last round of blood work. It was really nice of you to make me feel that I am not losing my mind :-) Bless you! I am having trouble not just crying with relief.. At least someone believes me.

Hi Kbeck,

Welcome to the group. Hopefully you will be able to find support and encouragement here, as well as increasing your understanding of this disease. Some of the issues you describe, for instance the fatigue, are recurring themes, which leads me to believe that they are in some way part of PKD. My kidney function is at a similar level to yours and my nephrologist has also said that the fatigue I suffer cannot be attributed directly to the kidney function, though he is sympathetic. I think that there are multiple factors involved, which will occur in different combinations for each individual. I ascribe my increasing problems with early fatigue to:

1.Poor sleep (for various PKD related reasons eg. pain, discomfort, abdominal size, stress, needing the bathroom frequently;

2. The physical strain of carrying around the huge weight of massively enlarged organs for years on end;

3. Dealing with long term pain, which is very draining;

4 More recently, the added factor of anaemia;

5. Other, as yet, unidentified factor(s) linked to PKD are possible.

It can be difficult for others to understand this; they don't have your body so cannot appreciate how you feel. It can be frustrating for loved ones and they have to deal with their own feelings associated with your difficulties, too. This can put a strain on relationships and requires patience, understanding and a colossal effort in both sides - easier said than done. This is an ongoing process as you both adapt to changes.

I wonder whether you should be seeing your consultant more often than you are. When my function dropped to 35% last year, my consultant said that I need to be monitored a little more carefully now and asked me to return in four months (previously my function etc. were checked every six months). A lot can happen in 18 months.

It sounds like you are under a considerable amount of stress and lead a very busy life. It's not surprising that you're tired, regardless of the PKD. It's important to take time for yourself and to pace yourself (this can be difficult but I know that I suffer much more if I fail to do this).

The cortical thinning that you describe is not typical of PKD. Has any other cystic kidney disease been considered? I saw an abstract from a study which might interest you, but it's quite technical. It's about TSC2/ADPKD1 contiguous gene syndrome. Basically, the genes for tuberous sclerosis 2 and ADPKD1 sit close together on chromosome number 16 and it seems that it's possible to have problems with both genes. TSC2 sufferers can exhibit cortical thinning. If someone also had the PKD1 gene, there could be cysts with the cortical thinning. Just an idea.

I've rambled on a bit - hope it wasn't too much and apologies if it was. Look forward to hearing more from you; we're all with you,

Chewitt

Thank you very much Chewitt! That is certainly something I can bring up with the nephrologist this summer! It is very interesting that my Dad actually died after having surgery for a brain tumor which I have read is apparently common with this TSC2. He was just too weak from the years on dialysis and never regained full consciousness. I am back to my GP in May so I will also take this information to him. I agree that I need to take time for myself. Thank you for reaffirming that that too me. It has been my new mission. That I rest more and have some acceptance of, this is just how it is. WE all know that there are days that you can mentally understand this and others that make you want to curl up and cry. I know that in 1964 when my Dad was diagnosed with PKD it was such a new discovery that they did not know much about. At least we have made progress and who knows what is around the corner. You take care as well. Hugs!

Welcome KBeck, so glad that you are feeling like you are heard and understood. Oh my, I am sure I can say for all of us, yes.... And honestly, there isn't much we can do with friends, family, or even spouses. That sure makes it difficult, and I truly feel like I have been entirely alone in this, except for the folks here.

I had a transplant 3 1/2 years ago, and it was a person I had met online in a discussion forum who offered me a kidney. I guess that it is just certain types of people who are able (or willing )to hear and have compassion.

I had never heard of cortical thinning either... very interesting. But I have heard of the berry brain aneurysms, is that what your father had?

Yes, you do need to "be heard" here with us, as well as be seen by a nephrologist much more often.

Everything Chewitt listed, I can say... yes. been there, done that.

Please, continue to take care of yourself, very good care. Eat very good, fresh foods, get some exercise and try to find some ways to rest, and ease your soul.

Love
Heather

I had berry aneurysms, 7 of them and they were all clipped back in the hey day when they cracked your skull open and shaved all your hair off. Today is quite a different story! It's very simple.

I too have been alone in this journey almost all of my life! It's a extremely sad thing to endure but I guess we are tough, that's why we have PKD! Oddly enough after almost a lifetime together, my husband has begun to take an interest in this disease! We are 73 and he is 75! He even goes to all my docs apt. With me!! Actually I find him annoying because he has never gone before and asks my kidney doc all sorts of questions!! Very annoying! LOL. Hehe! Well girls, I have my very first UTI!! Can't believe it, after all these years! I must say it's very unpleasant! I never had any knowledge about them and people complain about them all the time, now I am complaining! This disease took so long to get ahold if me and now I am experiencing things that people with type I have, I am type II and it didn't get ahold if me until I was in my 60's! So that's my complaint of the day. Jim really doesn't want to hear about this one though! LOL. Hope you all are enjoying the snow in upstate NY that made it's appearance yesterday, the first day if spring!! Lots if love to everyone, Norma ...

You ladies are such wonderful souls!! I think I will have to push more regardless of what my husband thinks.. I think if I can get him to read some of this it will help him.. Yes !! Heather!!! That was it.. A berry aneurysm!... I have asked for a brain scan but have been told that there is no reason.. I don't put up a fight for myself I think!!! Because I am also hearing UTI's are an issue too... I had been fighting one non stop since my C Diffe and the doctor sent me to a Urologist that specializes in womens UTI's and he told me I should keep clean!!!!... Aside from sterilizing it could not be more possible to stay cleaner!!! But for all of you out there, I did find from my cousin in German ( she is my best support, she has PKD but it has not reared its head yet, and she has great doctors) a daily herbal solution. I don't know what it is, but I have not had one since.. She has sent me three bottles.. I will try and take a picture and any of you that may have a contact with a good herbalist might be able to figure it out.. I will need to figure out how to post that... I have not had a viscous bout since... And that is unusual. I have not gone this long without UTI for years!! I will let you know when I get it on my page..
Bless you all.... I just feel like crying with relief!!
Thank you so much for your kind words of support! I send my thoughts to all of you for mental peace for most of your days and knowing this is here for those bad days!!!!

Norma take care!!!

I got half way through my reply and my computer shut down. Darn. First of all yes, you will be tired. I sleep 10-11 hours at night and still fall asleep in the evening for about an hour watching TV.

Sounds like your experience with your dad was a bit like mine. Unfortunately I had 2-3 years that were extremely difficult and I never have recovered mentally from them. I suffer badly from anxiety and depression.

I wrote my dad's story on a blog on Kidney Connect:

http://kidney.ning.com/profiles/blogs/first-successful-cadaver-kidney-transplant-in-canada

My husband has never understood. He was an alcoholic and we were having marriage problems anyway a few years before he died. He told me I "whined" about my kidneys. I don't. I explain why I am tired and can't do things I used to do. And I'm just plain scared which he never seemed to "get". I told him that was the one thing I could never forgive him for saying. My older sister does get the being tired. She's 11 years older than me and remembers my dad a lot more than I do. She doesn't live near me but keeps in touch by phone.

I think you have to be your own advocate. If what your doctor tells you doesn't sound right then ask your GP for a referral to a different one. I did that but it turned out my neph just kind of disappeared and now others are trying to include his patients into his practise. Everyone, including doctors, is human and not all doctors have a decent bedside manner.

Good luck.

Unfortunately many nephrologist a do not understand PKD. If I were you I would look for one who knows about PKD. I went on pkdcure.org and found a nephrologist for my husband. It made a world of difference.

Kbeck, you really need to get a CT scan or whatever they are doing now to look for aneurysms! Especially in light of the fact that your father had them! All my children have been scanned and 2 of the 4 do have aneurysms! Fortunately they are very small and they get repeat scans thst show if there has been any growth, so far, so good! You need to tell that quack of a doctor that these are indeed inherited!!

Good luck honey!
Norma .....

Hi KBeck,
My consultant wanted me to have an MRI of my brain to check for aneuryms, but I haven't been brave enough to have it done. I absolutely loathe being in the scanner; it terrifies me and a brain scan is too much to contemplate. I have no family history so the consultant wanted to be sure. With a positive family history this is an important check to have as the likelihood of an aneurysm is increased. Your consultant doesn't seem to know what he's talking about. Push for the scan. We have to be our own advocates and having accurate infomation helps us to do this. My husband disagrees with this and thinks you can have too much information, so we have to agree to differ.

Chewitt

Chewitt,
Get the MRI/MRA done now! You can probably have someone else come in to the room and hold you hand since you don't want to be there. I did that with my husband when he had a brain scan; he was utterly petrified, so I just sat there with earplugs in and held his hand the whole time. Another option is to ask for music of your choice to be played during the scan (bring an MP3 player or CD; call in advance and see what format the music has to be in). The technicians can turn it up enough the you'll be able to hear it even over the sound of the magnets and with your earplugs in. Just remember to keep doing cleansing breaths and keep your eyes closed. In addition, your doctor may be able to prescribe a mild sedative if you have someone who will drive you home and/or assist with you getting home via public transportation (you can't have a sedative if you're going to drive yourself; it's not safe and we want to keep you around for a very long time!).

I wish I could be there for you. I would hold your hand during your scan and then treat you to lunch afterwards!

Cheers!
Ruth

Hi Ruth,

So, so good to hear from you. It's been a long time. With regard to the scan, I've had music in the past, but I still struggle with the panic of being in the small, enclosed space of the scanner. I can't bear the thought of the cage over my head as well. I've explained my fears and there has never been any indication that they will allow someone in the room with me. Once I was convinced that all the staff had gone and left me and even feared they were killing me. I hate it so much! It's also extemely uncomfortable lying still on a very hard surface for so long. It's years since my last scan but I could hardly move aferwards. I'm ten times worse now. I'm still going to need some convincing to go ahead with this. Thank you for your kind words,

Chewitt

Definitely call ahead of time if you can have someone in the room with you (as they're not going to be exposed to anything other than magnets and the person doesn't have a pacemaker or any of the other items that would prevent them from having an MRI themselves) and let them know that of course your friend/husband/hand holder will comply with the no metal requirement that you have to as well (acknowledging that up front may help). We asked on the spot for my husband's MRI and the technicians looked at us strangely and I simply explained that he was very nervous and I was an experienced patient, asked what I had to take off (just my earrings and wedding rings; my jeans with metal were fine as I wasn't going to be that close to the machine) and the tech put a chair in the room placed so I could hold Charlie's had throughout his head scan. It really helped him calm down (until then I had no idea that he was claustrophobic and I know he would have made it through without me based on sheer well) but having me there made it that much more bearable (and based on how hard he was holding my hand, he really needed someone there!). So if a big guy who hates hospitals and everything to do with them (but won't tell anyone) and won't leave me alone for more than a few minutes at a time when I'm in one needs his hand held for an MRI,
you can definitely ask for someone to hold yours!

If that's not an options, ask the technician(s) to keep up a running commentary with you the entire time, from the moment you arrive to the moment you leave. There should be a microphone in the room so they should be able to talk to you even if you're in the machine, and once they're at their station, they can talk to you the entire time. That way you'll know you haven't been abandoned.

I used to fall asleep in the MRI machines (at least the more comfortable ones). It was great for the head MRI/MRAs, but caused some problems for the ones where you're supposed to take a breath and hold it because the technician would have to come in and wake me up to get the next scan going!

You're strong. Call the imaging center and ask if you can have someone in the room with you because you absolutely need someone there to hold your hand or you're going to panic. Then schedule a date and find someone to hold your hand during the scan and plan to go out for a light lunch afterwards to celebrate your successful scan!