2000 I had a Kidney transplant. Kidney failure due to PKD. 1st in family to show the disease (dominant). Learned I had it after having 4 children. 2 of them have it. They are in their 30's. So far no complications. My husband was to be my donor. His kidney was removed, cancer found in it. I saved his life, but didn't get his kidney. My oldest dtr was to be my next donor. 2 weeks before that surgery a cadaver donor was found. I have had no rejection episodes in 9 yrs and just know the kidney will outlast me. Went into depression with general anxiety for several years, under psychiatric care. Finally found the right combo of drugs 20mg of prozac and .25mg-.50mg of Xanex. Was on those for several years. The side effects of those kept me in la la land.
I have been exercising doing pilates and yoga 2-3 times a week. I am so strong that when I go to the ER they can't find anything wrong and want to send me home. The immunosuppressant drugs cover up symptoms of illesses I catch. I have been hospitalized since the transplant with pneumonia, and 2 admits for c-diff. I want to stay strong to help the docs and nurses and know what is going on when I get into the hospital setting. Last hospitalization was 5/2009 for a C-diff infection.
I have really had to educate my team of docs. I have a gp, oncologist, kidney doc, dermatologist, gynocologist, heart doc, and dentist. All of whom I see regularly. I go to Chandler Regional Hospital when ill because all of my docs go there. I want them to talk with each other and me to keep me well and for them to all know what is going on. So far that doesn't happen. I feel like a hypochondriac, professional medical patient, or science project.
I have had mouth ulcers because of a med change to Rapamune from cellcept. No thank you. It took me 2 months and a concoction from my dentist to get over that. This was last June.
My kidney docs office won't fax me personally with lab orders so last week I went to the lab and the orders were wrong (I caught it) Had to wait for the docs office to open to get corrected. Went sent this time just the gengraf number was requested with out a full CBC panel which is usual.
I see the kidney doc Tues. My hands, fingers, ankles and toes have been swollen for a week.
I took myself off the prozac and xanex last May. Now my appetite is out of control. I hope I can get put back on this Tues. I believe my seratonen level is gone wacko and my full switch is turned off. I have gained at least 10lbs.
During this time my younger sister has died and her oldest son has died. I have been able to hold things together so far. I feel like I am sitting on a time bomb, not knowing what will hit me next.
My husband found this site for me. I hope some info comes that will keep me encouraged.
Thanks,
Anne
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Moderator Note:
I removed AnneWilson's personal email from this public forum, and sent both women private messages in order for them to have contact privately without publicly displaying personal contact information.
If anyone is interested in further discussion with EmpowHER members, you can easily click on their username and send them a private message that is out of the public forum. We also have Groups set up for further in-depth discussion: Breast Cancer Discussion Group, and you can create your own Kidney Disease/Transplant group.
November 28, 2010 - 2:55pmThis Comment
I am new to this website, but just found out I have breast cancer (don't know yet what type or what stage). I have had a kidney/pancreas transplant for 12 years and doing fine, so not sure how this will impact things. I'm scared as expected... my sister who was never sick died 10 years ago after her breast cancer diagnosis. If anyone has comments or information to make me feel better I would be grateful.
November 26, 2010 - 2:55pmThanks,
Lynda
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Lynda, You are my sister in medical issues. I had a kidney transplant in 2000. Have not had any issues with the new kidney. But, of course lots of issues with infections and other side effects. In 2006 I had given up on well woman exams. I'm 67 and thought enough is enough. A close friend of mine was diagnosed with stage 3 breast cancer. I told her I would go one more time for a mammogram. I did in 2007 and stage one breast cancer was found. Mercy me, the type I have was enabled by my immunosuppressant drugs. It is not a tumor but more like buckshot. And they can't see it all, and know it will come back. Plan of treatment was to have a double mastectomy. I did without complications. Medication for this for me has been Arimidex. Just last Friiday I called my oncologist's office and told them I was quiting the Arimidex because the side effects were too much for me. Lots of joint pain in fingers, wrists,hips, ankles and toes. The nurse told me they would call back on Monday with what the doctor wants me to do.
I surely hope your breast cancer was caught at an early stage and you do as well as I have done. Keep up the warrior attitude and live a long and happy life. Even with limitations.
With love,
November 26, 2010 - 9:57pmAnne
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Thanks Anne. Once I know what I have and what the best course of action is I will feel much better. I have been on Prograf for 12 years, which I believe is the one that enables the cancer. Was that the immunosuppressant you're referring to? Forgive me because I'm new to all this, but what is the Arimidex for, is it a chemo drug? So many questions... but knowledge IS power. It is also comforting to know there are other people like me out there.
Thanks again and take care,
November 27, 2010 - 6:38amLynda
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So good to hear back from you. Prograf gave me too many side effects the most annoying was digestive issues. I am now on gengraf which is the old cyclosporin, I think. I also take cellcept. I also take drugs for asthma, pericarditis, high cholesterol ( which is caused by one of the other drugs). Also, bone strength, anxiety and depression. I see the dermatologist about every six weeks for numerous squamish cell skin cancer. I just recently finished 8 rounds of radiation to my nose for skin cancer. I am not into all of the knowledge behind the drugs I'm taking and what drug is for what etc. I usually just do what the good docs recommend and ask what the complications might be. Do we have a big choice? Apparently I have run out of room to type. If you want you can contact me directly. I live in Arizona. Where are you?
[personal information removed by Moderator, per posting guidelines]
November 27, 2010 - 11:52amThis Comment
Thanks for your email. I'll send you a note...
November 27, 2010 - 12:23pmLynda
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Lynda, You are my sister in medical issues. I had a kidney transplant in 2000. Have not had any issues with the new kidney. But, of course lots of issues with infections and other side effects. In 2006 I had given up on well woman exams. I'm 67 and thought enough is enough. A close friend of mine was diagnosed with stage 3 breast cancer. I told her I would go one more time for a mammogram. I did in 2007 and stage one breast cancer was found. Mercy me, the type I have was enabled by my immunosuppressant drugs. It is not a tumor but more like buckshot. And they can't see it all, and know it will come back. Plan of treatment was to have a double mastectomy. I did without complications. Medication for this for me has been Arimidex. Just last Friiday I called my oncologist's office and told them I was quiting the Arimidex because the side effects were too much for me. Lots of joint pain in fingers, wrists,hips, ankles and toes. The nurse told me they would call back on Monday with what the doctor wants me to do.
I surely hope your breast cancer was caught at an early stage and you do as well as I have done. Keep up the warrior attitude and live a long and happy life. Even with limitations.
With love,
November 26, 2010 - 9:57pmAnne
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Ladies,
Have you gone to get your mammograms done yet? My story could be your story. I gave up on having mammograms about 4 years ago. I was having so many other medical problems I didn't want to go for another test. It so happened that a friend of mine had a mammogram done and discovered she had stage 3 breast cancer. So I said "self" I'll go get a mammogram. Stage 1 breast cancer was found. I had to have a double mastectomy since it was the type of cancer that would come back to breast tissue. I have had no trouble dealing with losing my breast tissue. The mammogram saved my life so that I can enjoy life, my children and grandchildren.
Just call your doctors office and ask what you need to do to get a mammogram. They will tell you where to go and send lab orders to have the mammogram. All (I think) insurances will pay for the exam and if you do not have insurance the Susan D. Komen cancer fund will pay for it.
October is breast cancer awareness month and what better time to get yourself checked. Let's all stand up for ourselves and take charge of our own health care. What better gift can we give ourselves.
Have a healthy and great day.
October 7, 2009 - 5:10pmAnne
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Anne,
Thanks so much for your honesty and the details about your depression. It's very good to know that someone can recover from a depression serious enough to keep them in bed or housebound all the time. Your warrior attitude can definitely help others here! Especially those who are struggling with health or mental health issues right now. Your story is an inspiration that we just need to keep on with the fight when we know we aren't doing well, even if it's so hard to do.
Thank you again. I look forward to reading more from you!!
September 30, 2009 - 9:03amThis Comment
Boy am I ticked off. This is the second time I am writing this reply. Somehow I lost the first draft. Thank you Diane P. for your comments. I am back on the prozac following the inappropriate doctor issue and it is helping. I am resisting the xanex as long as possible because it shuts down my brain and makes me sleepy.
My depression lasted about 6 years. It took that long to figure out what medications would relieve my symptoms. Finally settling on 20 mg of prozac and .25 mg of xanes as needed. I was a little loopy for some of those years. But, it helped with the symptoms. I had been in bed all the time. I had trouble going out of the house. I didn't cope with decision making. I was not the take charge, organized old me.
My philosophy has been through this issue and all others. That there is light at the end of the tunnel of any issue that comes my way. I raised my 4 children the same way. If one way to solve a problem doesn't work try another way. Never give up (Warrior Attitude).
I find sharing my story and feelings and dealings that I have with this forum makes me feel supported by others and I hope by sharing my challenges I can be an example to others. We need to encourage each other and don't ever be embarressed about your challenges. They are learning experiences for others.
Have a great and healthy day.
September 29, 2009 - 10:29amAnne
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