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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Anne,
I'm just now reading your story. I am so impressed with you. You have had so much to deal with, and yet you are in there swinging, taking care of business, moving on. You have a great attitude; many people in your position would still be dealing with depression or even paralyzed with inaction.
Can you talk about how long it took to get out of your depression, and what you attribute it to?
And did you indeed go back on the Prozac and Xanax? Has it helped?
September 29, 2009 - 8:44amThis Comment
Friends,
I have received a letter from my states' Medical Board re: submitting my complaint "Inappropriate body contact".
"The Board's investigation staff has thoroughly reviewed the information you provided and does not find a violation of the Medical Practice Act in the Arizona Revised Statutes. Therefore, the Board has dismissed your complaint".
I feel fine with the Board's decision. Some of you may think was the filing of the complaint worth it. YES!! I feel empowered because:
1. The doctor received a letter from his Medical Board advising him of the complaint.
2. A copy of the complaint will be in his permanent record forever.
I did my part by reporting behavior and actions I felt were very inappropriate and wrong. I want to urge all of you, if you are ever in this type of situation, with a doctor, to feel empowered. Take action!! Fill out the complaint form and fax it to the Medical Board of your state. You will be called in for an interview to relate your experience. I can tell you I was nervous about the interview. But, I was treated very respectfully etc. by the Medical Director and the Investigator. They want to know of any inappropriate actions by any doctor.
Have a great and healthful day,
September 28, 2009 - 11:09amAnne
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Shirelle,
September 28, 2009 - 10:19amIn case you don't know. I am a kidney transplant person also. I didn't have chemo or radiation following my mastectomy because they would destroy my transplant. But, catching it at stage one I was told all of the cancer was removed.
Anne
This Comment
Shirelle,
Hang in there, girl. You are a warrior and you will get through this event too. I think it depends on the type of Cancer you have in your breast. Mine was like buckshot rather than a tumor. It was the type that was supposed to go to my lymph glands. It didn't. I had both breasts removed because it was recommended. I was told my type of cancer would come back to the breasts if I didn't have all the tissue removed. I have not been unhappy with the decision. I am 66 yrs old and very body and fashion conscious. So, for me to be happy with the results (double mastectomy) I am grateful. I wear the prothesis size of my choice. It is like having breast implants without the surgery.
I can share more information about the prothesis after your surgery. I wish you good luck and fast recovery. I will cheer you on.
Anne
September 28, 2009 - 10:16amThis Comment
Hi, I have just been diagnosed with 1 stage breast cancer and I am immune suppressed from a kidney transplant - this time 4.5 years out. Previously I have two other cadaver transplants totaling 13 years.
My question is does anyone know the recommended course of treatment for breast cancer as to not loose my organ but still have an excellent chance for survival?
Thanks Shirelle
September 26, 2009 - 5:21amThis Comment
Thank you
September 13, 2009 - 3:18pmThis Comment
Just a little more information. LADIES GET YOUR MAMMOGRAMS. I had stopped having mammograms for a year because I was overwhelmed with other medical issues. A friend had her mammogram and came up with stage 3 breast cancer. So I said "okay, I'll go one more time". Stage one breast cancer was found. It was caused by my immunosuppressant drugs. My oncologist said it should have gone to my lymph glands but, murphy's law that I am it went to my breast. I had to have both breasts removed because it would come back. Doctor says once tissue is removed there is no more tissue to come back to. I now take Arimidex. Side effects are hot flashes and joint pain in my wrists, fingers, hips, and knees. By the way my friend has been cancer free for 3 years. YEAH.
I continue to be a warrior,
September 8, 2009 - 8:53pmAnne
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Hi Anne:
September 13, 2009 - 11:48pmI had my first Kidney transplant at age 16 which lasted over 34 years; I have been very blessed. My husband gave me a kidney on 2-14-07 and I have been well, mainly skins cancers only. I get my mammogram every year. This year my Gyn found a lump in my left breast and of course I'm worried since we do have an increased cancer risk with our immunosuppresives we take. Can't get in for Mammo until 9/28 but I am on the cancelation list. Do you think I should try and get it ASAP and I would like your honest answer on what you think my chances are for this lump to be cancersous. I feel it may be since it is tender and irregularly shaped. Also it is not deep within the breast tissue.
Thank you on whatever you can share with me and your story is incredible as I can relate.
Karen
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Karen, I just found your comment today. 9-14-09. I'm still learning how to get around this site. I am so happy your husband was able to be your kidney donor. I hope his health is stable and you continue to do well. Personally, I would want to have the mammogram as soon as possible, but then again I just worry waiting. If it is cancerous my recommendation and that is only my recommendation is to have both breasts removed no matter what. I belong to a breast cancer survivor group and I can't tell you how many of the women have had to go back a second time and have the 2nd breast removed. As a transplant patient you are not a good candidate for breast reconstructive surgery. Because if you get one infection along the long process everything has to be taken out. I didn't even consider reconstructive surgery but the docs make you go listen to the spiel (just to cover their bases) I have not missed my breasts one iota. I don't even use a mastectomy bra. I just bought bigger bras to accomodate my size D prosthesis. I got the size I want. I'm nearly 66 years old and still take care about how I look. I just face each medical challenge knowing I will get through it and can go on with my life. I sometimes feel guilty that I cannot work, but that feeling goes away too. I did raise 4 children successfully and put my husband through 4 years of Optometry school and worked with him for 15 years. I am a successful person in my way and I will be a warrior always. If you reply I hope I can find where to look again. I will encourage you all I can and just keep focusing on a good relationship with your doctors. I can relate to you and hope to be connected to you again.
September 14, 2009 - 1:49pmAll the best,
Anne
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You were told that the stage one BC was caused by your immunosuppressant drugs? Good grief! It makes one fearful of taking the drugs needed to treat one condition, if the result is going to be something more threatening.
I hope you don't develop lymphoma on top of everything else, considering your immune system is so compromised. Here's wishing you all the best of care and recovery.
September 11, 2009 - 6:42pmThis Comment