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,
Thank you so much for sharing your story. I don't know what to say...I can not believe everything you have been through, and you are staying strong. You are truly amazing.
One thing that struck me is your sentence about all of your doctors working at the same hospital, yet they are not communicating with each other regarding your conditions? I looked up the Chandler Regional Hospital, and you may want to speak with someone in their Quality Management Department regarding Patient Safety Goals (these words always get their attention!), as one of JCAHO's goals (the accrediting institution) are to:
- "Improve communication among caregivers" (which can include your team of doctors)
- "Accurately and completely reconcile medications across the continuum of care" (possibly substitute "treatment and prevention modalities" in place of "medications")
If this interests you, click on the link below to access the Patient Safety page:
http://www.chandlerregional.org/Medical_Services/053176
There may also be a Patient Advocate that you can speak with about your concern for your continuity of care at the hospital.
Best wishes, and I hope we continue hearing from you!
September 6, 2009 - 8:37pmThis Comment
Good grief, Anne - you've had, and are still going through, quite an ordeal with your health and care issues.
Just recently, a cancer survivor addressing my running group at a seminar said that only you know your body as well as you, your doctors are only taught out of books - and might have some experience with what you describe to them. She's the one who kept insisting that something was very wrong before a doctor bothered to check her further - she has breast cancer and just came out of chemo and a double mastectomy!
Thank you for sharing your story. You emphasize the importance of paying attention to the care you're receiving. I'm so sorry to hear about your sister and her son.
It's also terrific that your husband found this site for you.
Wishing you well.
September 8, 2009 - 6:52pmThank you for your comments. They are encouraging to me. I know My body has numerous issues and each one in itself is difficult to treat. My body is just a glorified machine. I want the mechanics to care about me and my body as much as I do. My oncologist and cardiologist are one of a kinds.
May we all be warriors and stay strong together.
The e-mail I received re: this notification tells me to keep sharing my comments and experiences. Believe me I could continue this discourse forever. Have you seen my recent post re: my visit to the kidney doctor? It just doesn't end.
September 8, 2009 - 8:03pmAnne
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
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 - 6:42pmHi 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
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
Thank you
September 13, 2009 - 3:18pmHi, 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 - 5:21amHi Shirelle
Thanks for your question and welcome!
I'm sorry to read of your breast cancer diagnosis but thankfully it has been caught at stage 1. This already increases your chances of survival.
When you ask about not losing your "organ" - are you talking about losing your kidney? Have doctors told you that this is a possibility?
September 26, 2009 - 5:58am