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| | (1 recommendation so far) | Message 1 of 25 in Discussion |
| | From: Adam (Original Message) | Sent: 2/5/2008 6:09 AM |
My name is Adam. I am 46 yo. I was just diagnosed with PKD a couple of weeks ago. My mother had PKD as did her father. My mother passed away from cancer back in 1992. She had started dialysis in her late 50's, and while she was doing ok on dialysis, it complicated her treatment for cancer. In other words, it could not be treated as aggressively as it would have been had her kidneys not been impared. I always hoped (obviously) that I did not have PKD but it was always in the back of my mind. I always worried that some routine blood work would show something wrong with my kidneys that would require more investigation. It was'nt till I started having persistant pain in my left lower back that I went to my GP. When he found some blood in my urine he ordered a CT scan and, well my life changed forever. I know that it may be irresponsible of me to still wish that I did not know I have this. After all, it gives me an opportunity to "reinvent" my life. Eat healthier, exercise more, cherish each moment....but the truth is, I wish I did not know. It is the fear of the unknown that scares me. I am a single dad of an amazing 9yo boy. I am so worried that he to might have PKD, and I do not want him to know that I do. The progression of this disease is another unknown that frightens me. Knowing that I have PKD will allow me to take steps to slow the progression. My fear is how will I cope with the progression. As I write this I keep contimplating if I should submit it to the group. It makes me feel weak to express to you all how scared I am. I know that I need to face this and own that fact that I have PKD and that is not going to change. How I cope with it will define the rest of my life and right now I am having a hard time figuring out exactly how I am going to cope....... Any suggestions on how you overcame your initial fears to reach the level of acceptance that I see from so many of you as I read your posts, would be greatly appreciated......Thank you so much. |
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| | From:  PKDmom | Sent: 2/6/2008 10:30 PM |
Adam, I just wanted to add that you and your son are absolutely adorable!!! Thanks for sharing your picture! ~Marlene~ |
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| | | From: Gena739 | Sent: 2/6/2008 10:42 PM |
Adam, Hi.. my name is Gena.. I have (pkd) so did my mom, and her dad too! Now I have a new - kidney, and was on dialysis for a few years, wasnt so bad! As far as what I went through.. my mom towards the end.. never had any health problems beside her kidneys, they say..people with pkd on dialysis do the best! My mom for was always throwing up..gettin sick the last 6 mths.. I always feared that this would be me.. it wasnt ..went "bulistic " over it.. when it didnt happen to me.. I realized every one is different.. I never had any Pre-problems with it.. I did drink alot/ had some migraines. .monthly related tho..if you know what I mean.. and that was it.. when I found out I had pkd, I was hysterical knowing my past (mom/grandfather..that was that..but I know after I had found out.. btw( was pregnant at the time ) I used to worry.. where did the worrying get me for 20 yrs tho.. my sister on the other hand.. didnt worry.. she tried to share me up..but lemme tell ya.. it changed my life for the better and I looked at life differently and enjoyed all the day/years ahead. .didnt really dwell on it.. I guess you could say too..I have my two girls to keep me busy.. there is a book out called "The Secret" I suggest you read it cause it changes alot of peoples lives for he positive.. we just bought the movie! Gena~ |
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Adam,
Welcome to the board. I'm 39 (soon to be 40) and I was diagnosed when I was 16. My father found out he had PKD shortly after and had his transplant when he was 42. Of course now that I'm approaching 42 I was initially concerned that I'd follow in my fathers footsteps. But considering, I'm doing better than my father was when he was my age. Hopefully I'll remain where I'm at for sometime before I'm in need of a transplant. It's very true that no two PKD patients are alike.
My recommendations to you are to find a good nepholigist to follow you. Eat healthy and moderate, caffeine, alcohol, and especially salt.
Pauline
From: [email protected]
To: [email protected]
Subject: Hi
Date: Tue, 5 Feb 2008 19:42:00 -0800
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Hi
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From:
Adam
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My name is Adam. I am 46 yo. I was just diagnosed with PKD a couple of weeks ago. My mother had PKD as did her father. My mother passed away from cancer back in 1992. She had started dialysis in her late 50's, and while she was doing ok on dialysis, it complicated her treatment for cancer. In other words, it could not be treated as aggressively as it would have been had her kidneys not been impared. I always hoped (obviously) that I did not have PKD but it was always in the back of my mind. I always worried that some routine blood work would show something wrong with my kidneys that would require more investigation. It was'nt till I started having persistant pain in my left lower back that I went to my GP. When he found some blood in my urine he ordered a CT scan and, well my life changed forever. I know that it may be irresponsible of me to still wish that I did not know I have this. After all, it gives me an opportunity to "reinvent" my life. Eat healthier, exercise more, cherish each moment....but the truth is, I wish I did not know. It is the fear of the unknown that scares me. I am a single dad of an amazing 9yo boy. I am so worried that he to might have PKD, and I do not want him to know that I do. The progression of this disease is another unknown that frightens me. Knowing that I have PKD will allow me to take steps to slow the progression. My fear is how will I cope with the progression. As I write this I keep contimplating if I should submit it to the group. It makes me feel weak to express to you all how scared I am. I know that I need to face this and own that fact that I have PKD and that is not going to change. How I cope with it will define the rest of my life and right now I am having a hard time figuring out exactly how I am going to cope....... Any suggestions on how you overcame your initial fears to reach the level of acceptance that I see from so many of you as I read your posts, would be greatly appreciated......Thank you so much. |
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| | | From: Adam | Sent: 2/7/2008 4:09 AM |
I am so appreciative of all your replies, kind words and encouragement. The PKD community is so fortunate to have a group of such caring and supportive people. It is comforting to know that I can come here for support. Hopefully sharing my experiences will be helpful to some....Thanks again...you have made me feel very welcome and I am so glad that I did not let my fear of appearing weak stop me from sharing with all of you.  |
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Dear Adam-
Welcome, welcome welcome! And please, of course, ask any questions, and keep us posted (to whatever extent you're comfortable with ...) on how things are with you.
And thanks for your gratitude and admiration for the wonderful group Bridget started here. How does it feel to be - not just a question-asker, but also- to have become one of the supportive caring wonderful folks- too? (Adam, anyting you post, ask, etc. etc.- helps the new person, or the shy 'just lurker' with pkd out there too. Don't forget that- you're as much a support here as a seeker of support... Some of the most informative or helpful past 'threads' were questions, or requests for information, community support, etc.)
Thanks very much to you- very glad you found us!
love,
-jeanne
More new features than ever. Check out the new AOL Mail!<br/>
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Hi Adam .. strange how some of our stories are similare. I am 42, was dx 6 months ago, have a 4.5 yrs old son... so I can relate to pretty much everything you say. 1st I would like to welcome you to a great support group, and my message is to all the others.. thks so much, for your kindness, support, advices are just amazing. What I have really learned .. beside all the md stuff ... Pkd has impacted us one way or the other, either personally or with one member of our families, you'll have good days and bad ones, you'll be overwhlemed with info.. just enjoy living, be prepare to make some changes (they are not all that bad.. and yes I will drink as much coffee as I feel like it .. Note to myself), have fun with your son, some things are way worst in life than what we have, I know it does not always feel like that..but when you put everything in perspective..and btw no one is weak, don't ever feel like that .. you just need time to process everything that is coming your way so fast .. Sincerely Patrice |
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Hi Adam. I know the hardest thing to do when you first get the diagnosis is to tell someone, to actually say the words out loud. I was the same, and it still is overwhelming sometimes. I found out about the disease at age 21 and am 47 now, but it took some time to accept, and to realize that it wasn't the end of the world as I knew it. I had many years with little or no problems. I am extremely lucky, with only mild high blood pressure and occasional minimal pain. I have lead a very normal life and have raised a great son, born after my diagnosis. He's 17 now, in his Junior year, thinking about college. You can do this. If you need to talk, feel free to email me at [email protected]. Takes Care, Shelly |
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| | | From: VickiO | Sent: 2/12/2008 5:01 PM |
Adam, Welcome to the group! The picture of you and your son is great! Don't think we have all reached the same level of acceptance. I was diagnosed a year and a half ago and I am still dealing with the fear and bouts of depression. The depression comes less and less frequently as time goes on. It helped me to get as much information as I can about PKD (kept me busy anyway). The less time you have to think about it, the better off you are. Concentrate on what you can do, not what you can't. Think about things that have nothing to do with PKD. You are not weak. You are normal. If you ever have to deal with an unknown issue in the progression of PKD, this is the place to find support. Vicki |
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| | (1 recommendation so far) | Message 19 of 25 in Discussion |
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hello adam! this is just a quick note to let you know even us dudes are having a hard time figuring this out! i also was dx in 2006, out of the clear blue with no family history of this! its two years later and im still trying to figure out what the heck happened? it literally scared the *&*@% out of me!! hang in to this site and learn all you can from these people who have been there ! these people have a lot of wonderful info to pass on ! I read the posts daily! good luck! ,, hawkman112757.... indiana |
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| | (1 recommendation so far) | Message 20 of 25 in Discussion |
| | From: pkdLin | Sent: 3/8/2008 8:20 PM |
| Adam and others, Never again use that work weak when referring either to yourself or pkd pts. in general, and that's an order. Trust me you will come to know how strong you are and that's from someone who knows. Ok, so you're a guy with pkd; do you think that means voicing your "concerns" means you're breaking a guy rule? Gosh, I certainly hope not. Pkd can be scarey enough to scare the strongest of people and we've all been scared now and then; it's normal. If ever it becomes a concern and you don't want to post on the site you can email just about any of us and I guarantee we won't consider you to be weak. I think if truth be told we are very strong, and even more so in numbers so we have to stick together. I'm glad you guys are here and at least this lady thinks a strong man is one who can admit things and get help. It's the weak ones who are afraid of breaking those guy rules that are really weak. Lin. |
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| | (1 recommendation so far) | Message 21 of 25 in Discussion |
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Hey Adam,long couple of days,had not been on the intro board since early of last week.So many good people,great discussions,so little time.I checked my email and saw a reply from Lin to your post.(I had to look for your 1st message,so many replies it was on the next page!)1st thing,every word Lin said is fact.period.The good thing that you did was click (submit.)I am a 45,a guy,single parent.I have been in your situation.It is overwhelming at first.STOP AND TAKE A BREATH.Each day things will get clearer and more defined.We all do it day to day.It can be a challenge,but before long you will be more worried about what your(teenage)son is up to besides stressing about PKD.This is a very good place to talk.Adam,I have only been on this site for a few months and it is one of the best decisions that I have made.If there is any time that you would like to talk to me off the boards please feel free to email me.BUT WHY,WITH ALL THE GREAT WOMEN HERE!THEY ARE THE BEST. |
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| | | From: Adam | Sent: 3/9/2008 7:48 AM |
I read all of your replies and all I can do is smile. It is so comforting to know that there is a place I can come to where people can relate and understand. No matter what comes up for me in regards to PKD, I know that there are wonderful people here who have been though it and can help with reassurance, comfort and guidance. What a tremendous group. You all have already helped me so much, and I hope that my experiences will help and reassure others. In my first post, I said that I wish that I did not know that I had PKD. I see now that was short sited. The changes that I have made in my diet, exercise and general outlook on life already have me feeling better than I have for a long, long time. Yes, I am still scared, and yes, there is still the anxiety of "the unknown", but I find myself concentrating less on the those things and more on what I can do to have a happy, fulfilling life. Thank you everyone! |
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Hi Adam, I read your post and remembered myself when I found out. That was 30 years ago and I have now been on dialysis for 3 months. When ESRD came I was afraid all over again. My faith helped me get through it. I pray for you and your family. In the years to come I am sure there will be more treatment for PKD. Your son will surely benefit from this if he even has the disease. You are doing the right thing by talking about your fears. Just hang in there and know that we are all in the same boat and know what you are going through. Deb |
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| | | From: pkdLin | Sent: 3/9/2008 5:06 PM |
Hi Adam, Just do the best with what you were given! When I was first dx. my sons were very young but are now 31 and 35. I spent too many days worrying that they would be motherless at a very young age but that did not happen. My husband worried that he would be without me, but I'm here and he's gone, go figure. I'm here, you're here, and that's what counts. Take good care of yourself and have fun so that will be the memory that your family and friends have of you . It's nice to remember the person, and not the disease. I think we all give too much time and throught to pkd anyway; leave some time each day for the fun guy, the father, whoever.
Tool, like your attitude! Lin. |
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Hi, Adam! I just recently read about you and the thread of replies. I am assuming you know something called "The Serenity Prayer". Please let me know if you don't know it. You mention the "unknown." Among other things your job is to minimize the scope of that unknown. As you can tell, there are plenty of sources of information available. The more you educate yourself, the smaller the realm of the "unknown" becomes. Think of how you were when you first started your occupation compared to now. You are on an exciting (not necessarily pleasurable) "odyssey." With an attitude of "somewhat detached curiosity" (as best as you can have that), you will gain many appropriate "coping skills" that will allow you to move forward on this path to achieving as fulfilling a lifestyle as possible! As far as "telling" others, someone once said, "The Truth shall set you free." I "told" others by handing them a brochure describing PKD. You will quite easily find out who will be supportive and who won't by their response to the information. That knowledge alone will save much anxiety. You'll know who your REAL friends are!!!! I guess you know that you have REAL FRIENDS here! Blessings! Coach Richie |
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