Hi I'm Mary "Rookiegirl"...

rookiegirl

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Hi I'm Mary "Rookiegirl"...

« on: October 23, 2007, 06:11:16 PM »

Hi Everyone. My real name is Mary. I'm 36 yrs old, wife and mother of 2 girls (13 & 17). I was diagnosed with IGA Nephropathy back in 2000. Don't know what really caused the Kidney Disease. The only symptom I had prior to going to the doctor was a severe headache that just wouldn't go away. Come to find out, my blood pressure was too high. I have never had any conditions dealing with HBP. They did all kinds of test (Urine, Blood, Ultrasound). At that time, my creatinine level was above 1.0 I was immediately put on HBP medications and was told to watch my salt and avoid high protein. A year later my family and I moved back to NC from GA. I started seeing a Nephrologist at Duke. My meds change several times to get my HBP under control. I had a kidney biopsy in 2002 which didn't go very well. I was told I would only be in the hospital overnight and should be able to go home. Unfortunently, I was there for 5 days because they couldn't stop my bleeding. I had to have blood transfusion. Later on on top of my regular meds, my doctor prescribed 3 consecutive IV Steroids treatment to see if my creatinine level will go down. During this time, I was around 3.5. I puffed up like a balloon all over. I was so miserable. I tried taking fish oil tablets which didn't work because I had a hard time swallowing huge pills and I had to take 12 in the morning and 12 in the evening. I was not a happy camper. Creatinine level increased again and my doctor wanted to do another kidney biopsy in 2004. I really couldn't understand why so many biopsy? My doctor told me its a way for her to determine what treatment prevention to take. I agreed to it and this time, thank God, I went home the next day from the hospital. Of course my meds changed again. I have been taking Cozaar, Doxazosin, Calcitrol, Torsimide. These meds kept my creatinine level steady. It would creep up slowly until now.

About 3 months ago, my doctor at Duke new a Nephrologist that is well known and specialized in Peritoneal Dialysis. I started seeing this new doctor at Wake. He immediately treated me for my Anemia which I have always been told "borderline". He put me on bi-weekly Aranesp shots and one Iron Infusion. These two combined help produce red blood cells. My hemoglobin counts was around 8 and he wanted it around 12. I know it is working because my hemoglobin now is over 10. As for energy, I really can't tell. I never really felt weak.

We talked about treatment options. So he sent my husband and I to a dialysis option training class. I immediately knew which one I wanted. Peritoneal is what I wanted due to my lifestyle. I still work full time and my kids have so many activities.

End of September 07, received a phone call from my doctor's office. I was told my last blood work shows that my creatinine level is at 5.9 and they wanted to schedule a Tenchoff Catheter. I just broke down and cried at work because I couldn't believe this is now happening, so fast, so soon. I called my husband to let him know and I had to go home because I couldn't stop crying. The entire week, I felt really depress. You see, so much happened this year to me and my family.

Earlier in February 07, I lost my mother who battled lung cancer for 6 years. She went into the hospital in mid January and I was told by her doctor that her cancer has spread from her Lung to her Liver and she only had 3 weeks or 3 months to live and she needed Hospice Care. I agreed to put her in Hospice and broke the bad news to my brothers/sisters. I have 2 brothers and 3 sisters. I'm the oldest. Our mother passed away Feb 4th. God is so caring, loving, and understanding. The last 4 days of our mother's life, we were all by her side. The moment we all took a break and stepped out of her room, we were only gone for 1-2 minutes. Our mother passed on. It took all of us months to forgive ourselves because we were all upset that she passed on alone. It took a good friend of my mind to make it clear to me that my Mom and God spared us the hardship off seeing her last breath. I had to arrange all the funeral service and tried my best to be strong.

After we layed our Mom to rest, the following week, I felt sick and was out of work for almost 2 weeks. I guess my body, mind, spirit was just tired. I really can't say if the stress caused my health to decline?

So anyway, I had my catheter inserted on 10/3 and had my first dialysis training on 10/22.

Day1 PD Traning: I had to do 24 hr. urine collection. They did blood work. Started me on CAPD. During the fill time it wasn't so bad. I dwelled for 3 hrs. My first drain didn't go so well because I had Fibrin that was preventing a good drain. Close to the end of the drain it was very painful. The cramping, oh my Gosh, the cramping. It hurt so bad. It was 10x worst than menstrual cramp. The second bag fill, they injected Heparin in the solution to break down the Fibrin. I was told Fibrin are protein that past thru the Peritoneal membrane and sometimes clump up. The Heparin breaks down the clump to make it easier to drain. While dwelling, It was difficult to walk around. I kept feeling that pull especially on my sides. I couldn't eat lunch because I was so bloated. I lost 4lbs. on my first day.

Day2 PD Training: They gave me the 4.25 bag because they wanted to pull as much fluid and wanted to "challenge" my body. My ultrafiltration was 750 the first round and 800 the second round. I was in so much pain. The cramping after the drain was horrible. The full sensation was terrible. It was difficult to breathe. Again when we broke for lunch, I couldn't eat. I lost 2lbs on my second day.

The nurse kept saying once my body adjust to the fill and drain the discomfort should go away. I wish I could be optomistic about this, but the pain really makes it hard for me to believe it. I can't understand why the first fill and drain is not as painful and the second fill and drain. I really hope that it will get better.

Tomorrow is my 3rd day training. We should be going over the APD or CCPD training.

Thanks for letting me share,
"Rookiegirl"


	Logged

2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy

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