I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: rimbo74 on January 05, 2007, 07:12:54 AM
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Hi everybody! I found this site yesterday and reading the post, its really nice to know that other young people are going through this just like me.
About myself. I'm 32 and live in Texas. When I was little doctors always believed that I had bladder infections because blood was found in my urine. At 12, a pediatric nephrologist decided to perform a kidney biopsys since I have a hearing problem along with blood in my urine. The test results came back and I had a mild case of Alport's Disease with no other problems (except hearing).
I have live a pretty much normal life, went to college, social life, married, one beautiful daughter, divorced, blah, blah, blah. Over the last 5 years, my kidney function has slowly decreased. In 2006 my body started to do wierd things. I have major heartburn with anything I ate, nose bleeds, muscle cramping, and morning that I woke up numb and couldn't find energy to get out of bed.
In November I had my annual Neph appt and it was found that my kidney function was at 8% and I need to be placed on the transplant list. My jaw dropped since I wasn't thinking this would happen until I was at least in my 40's. Guess I had too much fun and I speed up the disease. :beer1;
I go in next week to get my catheter for PD next week. I'm still awaiting to pre-evaluation for a kidney transplant through Baylor Transplant Center here in Dallas. The information I have read is very helpful and I look forward to coming to this site each day.
I'm still working (I missed a couple of days but boss is really helpful with my situation). I plan on working through all of this (I hope), I will be doing the PD at night while I sleep. I'm alone, so I hope I can do all that is needed. I do have a girlfriend that is nearby and supportive.
So that's the story about me.
:clap;
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I'm alone, so I hope I can do all that is needed.
Mark, I loved your Intro. But since you wrote it, something has changed: you're not alone now - WELCOME TO THE IHD FAMILY! :welcomesign; I'm amazed every single day by what I learn here, and by the encouragement I find, and you're more than welcome to share! :grouphug;
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Hi everybody! I found this site yesterday and reading the post, its really nice to know that other young people are going through this just like me.
About myself. I'm 34 and live in Texas. When I was little doctors always believed that I had bladder infections because blood was found in my urine. At 12, a pediatric nephrologist decided to perform a kidney biopsys since I have a hearing problem along with blood in my urine. The test results came back and I had a mild case of Alport's Disease with no other problems (except hearing).
I have live a pretty much normal life, went to college, social life, married, one beautiful daughter, divorced, blah, blah, blah. Over the last 5 years, my kidney function has slowly decreased. In 2006 my body started to do wierd things. I have major heartburn with anything I ate, nose bleeds, muscle cramping, and morning that I woke up numb and couldn't find energy to get out of bed.
In November I had my annual Neph appt and it was found that my kidney function was at 8% and I need to be placed on the transplant list. My jaw dropped since I wasn't thinking this would happen until I was at least in my 40's. Guess I had too much fun and I speed up the disease. :beer1;
I go in next week to get my catheter for PD next week. I'm still awaiting to pre-evaluation for a kidney transplant through Baylor Transplant Center here in Dallas. The information I have read is very helpful and I look forward to coming to this site each day.
I'm still working (I missed a couple of days but boss is really helpful with my situation). I plan on working through all of this (I hope), I will be doing the PD at night while I sleep. I'm alone, so I hope I can do all that is needed. I do have a girlfriend that is nearby and supportive.
So that's the story about me.
:clap;
Hey Mark,
Welcome to IHD (ihatedialysis.com) I hope you enjoy your stay. I to am 34 and I have a child. Welcome to the site and I am glad you found us. We have a lot of young people here on this site, so you are definately not alone. Hey you say you are divorced? Be sure to check out one of our sister-sites: http://www.renalromance.com it's a new site but it's really taking off, give it a look when you get a chance, maybe you can share some dating stories.
You said:
The information I have read is very helpful and I look forward to coming to this site each day.
Now that you said that, if you don't come and post every day I will have to fine you. I hope you understand, so you better come and check us out everyday. We average over 130+ new posts EVERYDAY :o This is the largest and most active dialysis message board on the Internet. So you found the right place to be.
Again welcome,
- Epoman
Owner/Admin
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Hello Mark,
Welcome to IHD. I'll keep this simple.
I look forward to your posts and I'm glad you like it here.
This is more like family than my regular family. Glad to have you here.
Sluff, Moderator
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Welcome Mark, good to have you aboard.
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Welcome to our community, Mark. We are so glad you found us, and at the right time too. There is so much here that can help you understand what you are going through. And I am glad to say that this has developed into a caring and sharing community. When you need to vent, just feel free. Look around the site and take advantage of all the marvellous things that have been developed with people like you in mind.
It is really great to have you with us. Welcome again. :welcomesign; :grouphug;
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Thank you for all the welcomes. :thx;
My surgery for my catheter is in less than a week. I'm really hoping the doctor will give me a lot of time before I start using the dialysis. I'm on my 3rd month of taking 26 pills a day to help with the toxins. I'm currently taking the following a day: Phoslo, Doxazosin, Sodium Bicarbonate, Calcitriol, Zocor, Furosemide, Lexapro (Anxiety), and Tramadol when needed for the aches and pains.
I'm hanging in there with all the medicine and can go about my day not on dialysis. I get fatigued easily and most days now, all down my spine generally aches.
My surgery is on the 12th, then I have my follow-up lab work and appt with my nephrologist. When starting dialysis, do Dr's cutback on the medication you are taking or do you still have to take the medicine too?
Thanks again for the welcomes!!
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:welcomesign;
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Welcome, Mark, You've come to the right place! I'm sorry for everything you've been through. I'm on PD at night on a cycler, I just started on December 26th. You'll find lot's of good advice here in the Home Dialysis section. Ask any questions you want, we've got a lot of people on PD who've been a great help to me. :welcomesign;
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Hi Mark, Welcome to IHD, i know what your saying about all the meds but hopefully once you start dialyzing they will take you off some of those pills since the toxins will be removed with dialysis.
Your little girl is so cute!! Well, i know you will enjoy your stay here and please do not hesitate to ask us for help with anything you may need and feel free to post any questions, comments or concerns of your own as well :beer1;
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:welcomesign;
You have come to the right place for support.
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:welcomesign; Glad to have ya here. To answer your question, you will most likely still take all those pills after you start dialysis. I am on PD, the cycler at night, and I take 30+ pills/day. Welcome again. :cuddle;
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Rimbo74: Glad to have you aboard. I sure hope you get a transplant soon. Anyone in your family offered yet? You will find lots of support at this site. There is usually someone online to answer questions or be supportive. Best of Luck and keep us posted on your progress.
:beer1;
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All my family and friends have offered. Waiting to start the pre-evaluation process, I don't even know my blood type yet. My mother and father are still alive and I have one brother, hopefully one of them is a match. I have also have been told by a lot of people they would donate one of their kidneys, we'll see how truthful everybody is when the time comes. :cuddle;
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Hay Mark, good to have you in the community.
:beer1;
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Welcome
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:welcomesign; Mark, from another Alport's person on PD. Best of luck on your catheter placement on Friday, be thinking of you. It is a pretty easy surgery, as surgeries go... just take it easy and follow the docs orders!
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:welcomesign;
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:welcomesign;
mark i know u said u are from plano....did you grow up in Freeport
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:welcomesign; A few of us are around your age (I am 33) and it is good to see a bunch of us around the same age here ;) :clap;
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Hi Mark welcome to the site
I, like you got this sprung on quick, but this site has taught me so much
Kim
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Mark,
I strongly urge you to inquire on the NxStage Home HemoDialysis machine. I believe it truly is the best way to go and also I had a fiscula put in my leg because the veins are bigger and the chances of complications are less likely plus it frees up both your hands to dialize your self with out having to depend on others daily. Check out ilovenxstage.com if you haven't already. I really think this can be less of a life altering experience and its somthing you would really be interested in.
Let me know how everything goes.
girl-x-treme
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Carolyn, sorry for the late response, but no, I have never lived in Freeport. I've lived in the following cities:
Monroe, LA
Little Rock, AR
Arlington, TX
Spring, TX
Dublin, OH
Lubbock, TX
and finally Plano
Update on me, I'm now on the transplant list here in Dallas. I found out that I'm AB+ which means I can except any blood type. Wow, a positive. I also have been using Baxter Homechoice for me PD. I pretty much feel good during the day which is suprising because I havent figured out how to keep the machine from waking me up at night for "Low Drain Volume". It's still great not having to do dialysis during the day!! :beer1;
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hello again, Mark, to solve the low volume issue, you may need to ask your dialysis nurse if you can set the drain volume lower. If I did not drink much during the day or sweat a lot my first drain was always too low. As for subsequent drains, you may be absorbing solution and your dwell times will need to be set shorter. Hope this helps. Best of luck.
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I'm still working (I missed a couple of days but boss is really helpful with my situation). I plan on working through all of this (I hope), I will be doing the PD at night while I sleep. I'm alone, so I hope I can do all that is needed. I do have a girlfriend that is nearby and supportive.
Hi Mark, first of all :welcomesign; Providing you keep yourself as fit and healthy as possible, you should be able to continue working, without to much difficulty. I was able to work full time for 10 years, it's only since I started having problems with my heart, I had to reduce my time at work. Unfortunately i am no longer able to work, but i intend to start college soon, (evening Classes) in Web Design, you need something to keep you brain active, I look forward to your future post's to see how you are getting on! :thumbup;
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:welcomesign;
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hello mark again, thanks for replying...My daughter jessica is on the home choice...yes, i know about the low drain volume alarm keeping you up...its keep jessica and me up all night also..i hope i fix that promblem.they have not put jessica on the list yet...but soon...take care mark....Btw welcome
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I read your intro and it said you were on the list at Baylor in Dallas. I was curious to know if you had to go thru the Dallas Transplant Institute for your evaluation. I am also trying to get on the list at Baylor in Dallas. I'm a little confused about the whole thing. I have been waiting almost three months and still have heard nothing. I've called and they tell me they are still waiting on approval from my insurance company. Also, if you could please give me a little insight as to what all the evaluation involves. :thx;
EDITED: Merged Thread, Direct questions can be done through a Private Message or a new topic under the proper section. This section is for introductions only. - Sluff / Administrator
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Hey Laurie,
Yes, I did go through the Dallas Transplant Institute. I had them list me at Baylor Univ (Dallas) and Baylor (All Saints).
Here is what I did. I submitted my application on Dec 13th. I had to call my coordinator, mine is Cindy Wright, who did they assign for you? Basically after you submit your application, your transplant coordinator will send your application over to Baylor's finance department. I believe Wakisha (214)820-6339, handles all financial approvals. :clap;
Now your approval process is between Wakisha and your case manager at your insurance. My insurance sent me a letter with contact information if I had concerns. I called the case manager to see if they have received a request for approval. I just kept calling everyday ALL three people until we got everybody what they needed. Basically I became my own coordinator. :D
The evaluation itself. Cindy setup me up where I did all my testing in two days (since I still work fulltime). These are the things you do for pre-evaluation:
Blood work (blood typing) - they take a lot of blood
Chest X-ray
Kidney, Liver, Gallbladder sonagram
Stool (take home test) ::)
Nephrologist Consult
Social Worker Consult
Transplant Seminar (1hr - you get to meet your transplant coordinator)
Nuclear Stress Test
Heart Sonagram
Surgeon Consult
Since you are listing yourself in Dallas, i take it you and your husband live near Dallas? If so, its great to know someone close by. Please feel free to ask me anything as it sounds I'm about 1 month ahead of you. I can tell you whats going on.
Here's my email: markrimbey@sbcglobal.net
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Thank you so much, you have been very helpful!!
And yes, I actually live in Ennis which is about 30 - 40 minutes south of Dallas.
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Glad I could help! :2thumbsup;
EDITED: Thread LOCKED - Sluff, Administrator