I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: pelagia on August 05, 2009, 05:33:20 PM
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Dear IHD family,
Some of you will have noticed that I haven't been around much at all this summer. It's not because I don't care about you! I think of my IHD family often. I miss your stories, humor and wisdom.
This has been a summer of sadness for me. My husband and I separated at the end of May after 33 years together. It's not what I wanted, but I am trying to move on with my life.
Much more difficult for me to accept right now is that, as of a week ago, my not quite 19 year old son Will is on blood pressure med. We knew his bp was rising a bit over the last school year, but the college health center doc gave us a wait and see. The link to PKD looms over us. When he went to our doc last week for a full physical they measured protein in his urine. The doc wants an ultrasound done right away, so I am taking Will to the hospital this Friday afternoon. I am praying that somehow the protein in the urine will be a coincidence and not an indication that something more serious is happening now. Will had been training hard for a triathalon, and heavy exertion and emotional stress can both cause protein release, but perhaps not to the level they measured. I don't have the lab results in hand and won't have them until Friday, which is frustrating. I am worrying about my son's health and also about having a definitive diagnosis of PKD.
One of the most important things I have gained from participating in this community is a sense of how strong people can be during times of crisis. It inspires me to stay strong for my own well-being and because my son needs my support.
Please keep us in your thoughts and prayers. I will post an update about my son when I have more news.
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Pelegia
thank you for your pm's this summer -
I was so worried about how your son was handling your separation -
I found out I had PKD in college when I was 20
and I had no problems until many years later
I am praying for you
and thanks for planting a Cheryl flower
photo please
your dear friend,
Cheryl
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I am sorry about all the challenges life has thrown your way but I know you'll do your best to get through it. We are all here for you and care very much how you are doing.
With Will, all you can do is take it one day at a time. Please let us know how the ultrasound goes.
:grouphug; :grouphug; :grouphug;
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Oh, I am so sorry to hear this news. We ARE here for you, but from this end, warm thoughts and support seem so meager. I wish there were more I could do.
Please be strong.
:flower;
Aleta
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:cuddle; Linda, you know we are here for you and please, please let us know about Will. I say a special pray and keep you both in my thoughts. You have been through enough. :cuddle;
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Tell him to not let the door hit him in his TRANSPLANTED ASS on the way out! OMG you SO don't need him. Linda.... RUN. His kidney won't last forever and you don't need to be his nurse and purse later on in life if this is how he is going to be.
:rant; OK! sorry~ I know it must be hard.
I hope your son gets the information he needs to keep his kidneys running for as long as possible.
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Im so sorry... I am with Rerun. :cuddle;
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I have no comment about your husband except... well, maybe its what they refer to as good riddance.
But for your son, I'm so sorry. I hope all is all right with him for a long time. I hate when such young people have to go through these things.
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:cuddle; I am sorry Linda that your problems couldn't be worked out. After 33 years I am sure you both tried.
Stay positive for your son. PKD is nasty but you will both deal with "what will be". Sending hugs. xox :grouphug;"
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Sorry to hear of your rough summer. Being there for your son is obviously your place right now. Keep your chin up and a positive attitude. I'm hoping for the best for you and yours.
:cuddle;
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Thinking of you and your family.
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:grouphug;
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:grouphug;
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Linda, you know how sad I feel about your breakup but I didn't know about Will and I am SO sorry to hear that, neither of you deserve all of this grief. You have been strong for me and for others on this board now we will be strong for you. I still have issues but I am here for you, we can lean on one another. As Rerun told me in another post - you can eat the elephant if you take it a bite at a time - such wise words, I will carry that thought with me and I hope you will too, we love you xxx
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pelagia -- you and Will are in my thoughts and prayers
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Linda, I hope you can feel the hugs and thoughts of strength that I'm sending to you telepathically at this moment. I know that this is a really tough time and the worries about Will must be unbearable.
You mean so much to so many of us and I want things to be better in your world. :flower;
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Linda, I am just heartbroken for you. I pray everything with Will goes ok Friday, we're here for you. xoxoxoxo :grouphug; :grouphug; :grouphug; :grouphug;
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I can only give you hugs and offer my prayers for your life to calm down a little. :grouphug;
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Oh I am so sorry for all of this! I will keep you and your son in my prayers. :cuddle;
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It is SO sad to hear that someone can just stop being married after such a long time. My heart goes out to you. Please know that I wish you all the strength to go on. I hope and pray that your son is o.k.
Hugs
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I am so sorry that you are going through so much. You have been missed here on the boards, and I'm sorry your absence hasn't been for good reasons. My thoughts and prayers are with you and your son. Hang in there, come back when you need to talk. :grouphug;
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I am so sorry and pray for you and Will. God will take care of the other one in his own time.
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I am hurting along with you. But at the same time, I know the strength of the human spirit. My caring thoughts are with you all the way, especially concerning your son. Be assured that your IHD family is with you for the long haul. :grouphug;
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Linda, I am so very sorry. Your plate is very full and I wish we could be of more help to you. I will keep you and Will in my prayers. None of this is easy for him. I can't imagine the pain and worry you are going through right now. How are you? Do you have family and friends to lean on right now? You know you have all of us and we are here around the clock. :cuddle; Are you doing OK? Come here any time you want to scream or cry. Sending you lots of love :cuddle; :cuddle; I am sorry.
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I hadn't posted yet, not because I don't care, but because I could not think of anything that might give you comfort..my heart goes out to your son. and of course to yourself. Finding yourself in a position you don't want to be in sucks so much. 33 years is a very long time, I am flabbergasted. I will be thinking of you, and sending positive thoughts your way. I am very sorry your going through all of this.
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:grouphug; I am so sorry you have all this to deal with. Praying that you find positive news for your son. I wish I knew how to mend your heart. :'(
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Linda, I am so sorry to hear about your ultra sucking summer, I will pray that your son has just hit a speed bump and will be back to normal soon...
Linda, breaking up is everywhere, but I can tell you that when it happens to a woman like you, the woman always ends up with a very full and loving life, you are well rounded and interesting and beautiful, grieve and then start living, I am sure you will be fine :cuddle;
Kim
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hoping that somewhere in this mess you will find some good news.
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Not sure when the doctor will call, but I saw the cysts with my own eyes. Couldn't miss them. It was kind of surreal because the moment the tech put the ultrasound wand to his skin the image of a kidney with what seemed to be a dozen cysts was on the screen. In a split second he went from "don't know" to "no question." :'(
He's going to a concert tonight with friends - thank goodness... I am going to have to think of something to do because otherwise it is going to be a long night. I need to shut my brain off.
Thanks again for your kind words and support.
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:'( :cuddle;
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Linda, I am :'( here with you. So very sorry. :cuddle;
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My heart is hurting for you. I don't have enough words to tell you how upset I am for you and Will. I think there are lots of Moms here that are crying with you. I am sorry. :cuddle;
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Here is hoping that your summer of sadness will soon turn into a fabulous fall and then winter of all happiness.
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Thinking of you.
:-*
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:grouphug; :cuddle; :grouphug; :cuddle; :grouphug;
There are no words, except I'm so sorry.
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I am so sorry to hear about your son. It must be so difficult for you because we always want to protect our children from the lousy things life brings. I hope he will become well educated in the issues of PKD so maybe he can prolong the health he has. With a loving mother like you, he has a lot going for him. I am sorry about your marriage too. So much to bare all at once. Hang in there.
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:cuddle; So sorry to here about your marriage - try to look to the future. Sorry to hear about your son as well. Hope he has a long time before he has to deal with the results of kidney failure.
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:cuddle; Linda, I am so so sorry. I'm here if you need to talk. :cuddle;
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I think Will is handling the PKD news reasonably well. His uncle, who also has PKD, called him last night and I overheard part of the conversation. There was a bit of humor about being part of a "special club."
I've printed off some info from the PKD Foundation website for him. We talked about what is happening with the clinical trials. He is going to try to double his water consumption based on the current research (as I posted in a different thread). This seems especially important given that he is a student athlete and is prone to dehydration, which works to increase cyst proliferation. Even though the water treatment is only in clinical trials, I see no harm in upping his water consumption within a range that is still clearly safe. He now knows what he can do personally to maintain the best kidney function possible. His doc put him on lisinopril, which is one of the two bp meds being used in the Halt PKD study. His bp is coming down into the low normal range.
One lingering issue is that I still don't know why he has protein in his urine at this point. The doc tried to call me late on Friday afternoon, but I was at a movie. Hopefully I will speak with him on Monday.
There was a thread here on IHD a while back about getting adult child tested. As much as I was opposed at the beginning to the idea of scheduling Will for the ultrasound, I now think it was the right thing to do. You can't be proactive if you are in denial.
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Sorry for your sad summer, Pelagia.
I think it is not a good idea to do PKD test for adult child, since we have not had a medicine to deal with it and it may have some implications for future health insurance. I tested it by myself in my mid-20s to confirm my PKD, but the result did not help me much.
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Linda, just to let you know you and Will remain in my thoughts xxxx
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Had a week of vacation and now it's back to reality. My son is in the midst of a 24 hour urine collection, which will allow the doc to do a better assessment of his urine protein levels. Hopefully I'll know something more by Friday.
Here's some good news - As luck would have it, my dad has a connection through a mutual friend to a senior physician and PKD researcher at a major university hospital. I had a chance to speak with him today. He is optimistic that treatments and therapies to significantly slow cyst development in PKD are not too far off. For now he suggests that we focus on controlling my son's blood pressure (130/80), keep him very well hydrated (see this post about water and pkd: http://ihatedialysis.com/forum/index.php?topic=15144.msg267490#msg267490 (http://ihatedialysis.com/forum/index.php?topic=15144.msg267490#msg267490)), and find a nephrologist here in Virginia who keeps up with the research and clinical trial results. All of this is doable.
Now I am feeling optimistic too. :flower;
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I'm glad that there has been a positive upswing.
:grouphug; :grouphug;
Wishing you the best.
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Linda controlling the BP is so huge to helping slow things down, Dani's Dr also has seen BP meds can help lower protein in urine also. I hope things go well for Will, and also for u as I now this is stressful on you. xoxoxoxoxox :grouphug; :grouphug; :grouphug; :grouphug;
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:flower; Linda, that is some good new. I will keep you and Will in my thoughts and prayers. I am happy to hear you had some time off. :cuddle;
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I'm glad you went outside the box to a new PKD doctor. Seems like you would have just used Stephan's. I think this is a good thing.
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:thumbup; Sounds like a good plan!
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It does feel good to have a plan and it sounds encouraging Linda (of course I wish it didn't have to be at all). Hope you had a good vacation and I think of you frequently. :cuddle;
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Glad to hear there is some good news. I will be anxious to hear how Will's test turns out. :cuddle;
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I am happy for you guys. That is good news. What treatments did he tell you about?
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MM- If you are asking about the clinical trials, you can read about them at this link http://www.pkdcure.org/ResearchMedicine/PKDClinicalTrials/tabid/142/Default.aspx (http://www.pkdcure.org/ResearchMedicine/PKDClinicalTrials/tabid/142/Default.aspx).
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The doc called this morning about Will's 24 hour urine collection test. He said the protein levels are within normal range now and the bp is under control. :)
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Oh, Linda,
That is wonderful news! :2thumbsup;
Aleta
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Great news to precede the return to school. :flower;
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:cheer: :cheer: :cheer:
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:waving; Oh Linda, that is some good news. You can breathe now. :cuddle;
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:bandance; :bandance; :grouphug; :grouphug;
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SOOOOO Happy for you and your son!!!! :grouphug;
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33 Years, is a Long, Long Time. This is Sad, My Prayer, will be that God, gives You, Comfort, and Hope, during this Stressful time, with Your Husband and Son.
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The doc called this morning about Will's 24 hour urine collection test. He said the protein levels are within normal range now and the bp is under control. :)
:2thumbsup; Oh I am so happy - that's what we wanted to hear. :cuddle;
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With all you have been through you are not going to miss a note when it comes to Will's kidneys.
Good to hear that things are normal for now.
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Linda I am so pleased to read that Will's results are normal. I hope they stay like that for a very long time, preferably for ever. Bless you both, I wish you good health and happiness.
Rose xx
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miss you pelagia...we have sooo much in common now...how are you doing?
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You may miss your husband, but you must have less stress now that he is no longer in the picture. I was wondering if Will has joined our community yet. He may enjoy and benefit from our combined experience with kidney problems. You know his friends may have a hard time understanding what he is going through, but we all know. You are a great Mom, sorry you have to go through this.