Taking Care of Mom

Thursday, April 24, 2008

still at Mayo Clinic

We are back to look at an ischemia in the great toe on the left leg which has turned black ( gangrene). I have alos been very sick with pneumonia, with no relief in sight.
Wish us luck. Been here since 3/25/08

Thursday, March 27, 2008

Tammie Johnson- Nurse Coordinator

The settings on this blog do not allow me to go back and re-edit previous bog entries. Or I am just in need of computer literacy. I misspelled Tammie Johnsons name in a previous entry.
Her mother named her with this wonderful spelling. She is truly a great kidney transplant coordinator and all of her patients with the last name ending in " L" are lucky to have her.

Special Thanks also to Dr. McPheil of Vascular Cardiology. Had a wonderful talk to him today and felt redeemed on some previous business.
Also thanks to Dr. Cosio, heading the transplant rounds at RMH this week.
her blood presure medication has been recently changed based upon his observation.
We will anticipate progress of being able to maintain consistent doses.

Wednesday, December 5, 2007

Been real busy, but will be back soon to update you

We have a new nurse coordinator again, Tammy Johnson. A fine person, very understanding and thorough. We recently had an issue with my mom's prograf level. Tammy was very on the ball to make sure we were informed and our minds put to ease.
On another page, my research shows that
senna can possibly interfere with PTINR levels and may not be good for prolonged use by kidney transplant patients because it could cause dehydration.
Dehydration as you know, bumps up creatnine readings.
I am trying to research if Glucomann fiber is safe for kidney transplant patients to take. It is a good fiber for diabetic patients. I also learned that Omega 3 fish oil, Cinnamon, and Glucosamine and Condroitin is safe for kidney transplant patients. Mom has been on it for a month now. Although docs are not to verbal on what could be the potential benefit. Mom has noticed a reduction in osteo -arthritis symptoms. Kidneys like cinnamon. Cinnamon can drop your blood sugar so be careful.

Saturday, May 5, 2007

We Need A Foot Pump

The arterial flow pump now costs $4,000 seeking a way to get this neccesary piece of equipment for mom's survival and well being. Wish us luck. By the way we now have another new transplant nurse coordinator. Will give you details as soon as we know more.

Thursday, April 12, 2007

Mom's Foot Continuing To Heal

We had a little bout with her being allergic to a potential material in her special footware.
She developed some blisters. Thanks to Dr. Kavros, she is healing.
She is continuing to have routine boot therapy every 3-4 weeks for 2-3 days at a time at Mayo.
We decided to maintain her on on this therapy due to the overall benefit of the circulation.
Her creatnine clearance is 1.0 ! Amazing !
Prior to she was between 1.2 - 1.4 and had dramatic rises at times. Since boot therapy, her creatnine has remained stable between 1.0-1.2.
It is a pleasure talking to Barb, nurse coordinator and hearing the good news!

Saturday, March 3, 2007

New Nurse Coordinator and a problem with PTINR test

Well We have had a change of order and have a new transplant nurse coordinator, Barb Giles ( I hope I spelled her name right). She is the third coordinator we have had in one year. Mayo Clinic is very wonderful about following up on their transplant patients. One of the reasons why my mom selected to transfer her waiting points to Mayo is because they really have saved her life time and time over.I have a good friend that had a rejection episode and her Illinois transplant hospital did not help her, she was told to see her local nephrologist. By the time the rigamaroll all finished, her organ rejected and she was back on PD ( peritoneal dialysis again). Yes, it is hard staying in Minnesota for a long time, but every employee at Mayo Transplant that we have met has been extremely diligent about helping my mom with the illness epidodes she has had after transplant.
Mayo has a wonderful system of having a nurse coordinator watch your Prograf level and other blood test results and does a brief consult by phone each month. This is a wonderful privelege to have a nurse coordinator help us. it is comforting to know that we just starting talking to Barb and she has been so caring and helpful. We feel very lucky for mom to be watched over by such a wonderful person.

We went to Gonda 4 for a PTINR test and the machine was unable to register her result. Mary Ellen was so throrough about sending her down to the lab and she constantly watched the computer to give her a result. We were relieved to know she was on the safe side at 2.0

Sunday, January 28, 2007

A new month and good news!

My mothers foot has completely healed as of January 23rd,2007. We got the word at 9:43 am. a website is in the works to show off the before and after pictures. Many of the pictures of graphic at first but the healing is proof that amputation was not the correct alternative for her and circulation was the answer to my mother's prayers. She has a full foot to walk on and three beautiful toes left on her right foot.

Thank You Mayo Women's Heart Health Clinic - Rochester MN

Our First journey to Mayo Clinic was on 5/17/2004.
My mother had a low ejection fraction. She needed to receive a cardiac clearance to be placed on the kidney transplant list.
Her doctors in the Womens Heart Clinic at Mayo, helped her to feel well again and her recent electrocardiogram results shows good results.
My mother was blessed with being assigned to Dr. Sharonne Hayes and her assistant and Nurse Practicioner, Dalene Bott- Kittslaar.
In "Taking Care Of Mom", it is described in detail how Dr. Hayes helped improve my mother's heart function. She made it possible for her to be well to be placed on the kidney transplant list. We are forever greatful for knowing her and Dalene.
We would like to thank the following doctors who particpated in the care of her heart:
Dr. Sharonne Hayes,
Dalene Bott-Kittslaar( nurse practicioner and assistant to Dr. Hayes), Dr. Raymond Shields, Dr. Amy Williams.
My mother had 3 angiograms at St. Mary's Mayo Hospital. The doctors and nursing team there give superior care and were extremely attentive to her.
Dr. Raymond Shields helped care for my mother when she has a blood clot in her right hand and helped her to save her fingers when a hospital in Illinois wanted to remove them.
Dr. Amy Williams helped us through many difficulties with dialysis and dealing with the many mysteries of end stage renal disease. Her intervention helped my mother to feel better while on dialysis.

Thank You Circulator Boot Corporation

Thank You
Joe Mackowski
Maggie Macguiren Of Circulator Boot Corporation

You didn't know me from Adam, yet,you took all the time in the world to help a total stranger calling you from off the internet to help save her mother from an amputation.
You helped point me in the right direction.
You educated me about The Circulator Boot
( http://www.circulatorboot.com/).

You helped refer
me to:
Dr. Thom W. Rooke, Dr. Steven J. Kavros, Dr. John Filip (Bryn Mawr Hospital Philadephia), Dr. Horowitz ( Diabetic Foot Clinic, Jacksonville Florida).

You work so hard each day to help people save their life and limb. My goal is to tell every doctor I meet about how wonderful you are.

Another intregal part of her foot open wound healing was
Mist Therapy by Celleration Inc. (www.Celleration.com) .

Thank You Mayo Gonda 4 Circulation Boot Department

We wish to thank Dr. Thom W. Rooke,
Head Section of Vascular Medicine Gonda Vascular Center, Krehbiel Professor of Vascular Medicine Mayo Clinic College of Medicine.

We also wish to thank Dr. Steven J. Kavros, Associate Professor, Mayo Clinic College of Medicine.

Thanks to their intervention her two toe amputation has almost completely healed through circulation boot therapy and MIST Therapy by Celleration, Inc (www.Celleration.com) . She was formerly a candidate for a below knee amputation. We decided against having amputation.

Dr. Rooke and Dr. Kavros has carefully monitored and cared for my mother. Each day as I see her foot, I feel blessed to know she has two great doctors treating her. They have helped save her leg.

They have a wonderful team working in the circulation boot therapy room dedicated to helping people.

We wish to thank many of the team members.

Cindy Felty( Nurse and Assistant to Dr. Rooke),Tanya Oberg(physical therapist), James Ross(physical medicine technician, Steve Hanna( physical therapist,Sandy Wood, Linda Koski, Andrea Bradford, Sarah Ferdin, Melissa Redig. We have not yet named all of the team members. Please check back for more names to be added to this list.

We wish to thank Mary Ellen Easley for her excellent follow-up of monitoring my mother's coumadin levels.
This is essential with preventing further blood clots.
We also wish to thank Paul Denziel ( Charlton 9) of the infectious disease divsion. He followed my mother closely in the beginning, monitoring her white blood cell count and her antibiotics which helped with infection control while her wound was healing.

Why I created this page.

I built this page to spread the word about caring for a mother with several complex health issues, My mother has cardiomyopathy, congestive heart failure, diabetes, blood thinning issues, and is a kidney transplant recipient as of 12/14/05. Since her illnesses onset in fall of 2003. I have worked diligently to advocate for proper medical care. Being from Chicago,Illinois a place with 8 teaching hospitals. We chose to leave to go several states away to Mayo Clinic
( Rochester, MN).

In Illinois we had nothing but medical heart ache and dealt with medical service providers who had little or no answers.

Illinois had too poorly trained phelebotismists and nurses making egregious errors that almost killed my mother.

I can breathe easier having her medical care at Mayo Clinic. Visiting Mayo speaks for itself. It is crowded year round, through rain sleet or snow. The license plates of people driving from all over the United States and the buses carrying people from all over the world to the clinic.

I do not want for anyone to endure the suffering we have been through. Do not let an inexperienced doctor tell you that you have to accept a droppping heart ejection fraction. You do not have to have doctors constantly tell you with coldness " Well your kidney has already failed so the drugs won't harm you."

You deserve to be treated like you are going to live instead of being treated like you are going to die.

I am passionate about bird dogging big pharma and AMA to be treated with being presented with all of my options, not just the options that my insurance will cover.

In addition we fought to avoid a below knee amputation. We learned that amputation is not a sole option. You have other options to save your leg. Research, learn and advocate.