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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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 - 6:52pmThis Comment
Thank 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
This Comment
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