chiari angel

chiari angel

Thursday, November 29, 2012

Isn't it wonderful how music can be applied to so many situations in our lives? I have noticed recently that music has a way of calming me and helping me cope. A few months ago while in the hospital I was having a really rough time...I was in the critical care tower and very very ill. The nurses were sticking me with huge needles every few hours and had run out of places that were not bruised. I had become partially paralyzed and could barely move my arms and legs or even turn over in bed. Seeing one of the nurses entering my room with the dreaded needles on this particular day was more than I could bear. She reached in her pocket and pulled out her cell phone "close your eyes and listen" she said. Soft music filled my room and I immediately relaxed. After that she made sure I had music playing in my room at all times. I have a list of music I want to listen to when I have my transplant. I  love all types of music and listen to it all but piano music is my favorite.
One song I relate too recently is My Skin by Natalie Merchant. I never liked that song before and used to cringe when I heard it. I thought it was too "whiny". But I listened to the lyrics for the first time and understood what she was saying in this song. I take it to mean....Yes I am ill and have been for a long time. But I am not as fragile as I appear to be. I want to be treated like everyone else. I may look different on the outside and at times don't understand what is happening to my body but I am still me on the inside and need to feel normal. I don't want to be untouchable....

I had an appointment with my cardiologist this morning....yearly exam. I was so nervous about this doctor's visit,I guess I am so used to hearing bad news. But... Praise Jesus! Everything went very well! He was impressed with my blood pressure and heart medication is working very well. Also I have lost 11 pounds since this time last week. That is 11 pounds of extra water weight! He sent the paper work to my Transplant Team stating I was good for transplant and that I did not have to see him again until next year!! Now if only I would get that call!!!

Wednesday, November 28, 2012

Lately the lasix I take are not enough to get rid of the edema in my feet and legs and I have to"boost" it with a drug called metalazone. I spent much of the night walking the floor because the side affects for me are horrendous! I am cramping,dizzy and nauseated. However the swelling in my feet have gone done a bit and I can breathe easier. I have a love-hate relationship with this medicine. It works but comes with a price. It causes me to lose salt and minerals very quickly that I have to replace or else I end up dehydrated. A big no no for the kidneys! I know it sounds like it would be easy to stay hydrated but for me it's not because of the nausea and even water is hard to get down. Sometimes I have to go to the er and they give me liquid pottasium to drink. It is the nastiest stuff ever! Thick and bitter tasting!

I can't help but wonder what it would be like to have a normal working kidney...I don't recognize myself when I look in the mirror sometimes.  My sister was massaging my feet the other day and she commented that my skin felt like rubber. I barely have any feeling in them except for when the fluid shifts away from them and then they hurt! Sort of like pins and needles sticking me.

Tuesday, November 27, 2012

daily pills....

This is the amount of pills I take everyday.. 34 pills in all...and typical of most kidney failure patients.

Waiting for the phone to ring.....

This infection and pancreatitis has really taken a toll on me...but today I have felt better and think it may finally be the end of it! I made it through Thanksgiving without having to be admitted to the was touch and go for awhile. Thanksgiving night was really a bad night because I was so swollen and had a spell of not breathing well and coughing up fluid from my lungs. The next morning when I woke up I had lost 5 pounds of water weight! My doctor has me taking a large amount of lasix 'water pills' to try to help control the edema. I take 3 of these pills in the morning and 3 in the a lasix booster called metalazone. It does not always work and I swell so bad that now the skin around my ankles is breaking down. My aunt sent me a wonderful skin cream she found specifically for this problem and it helps a lot with the burning and itching.  Dry skin and itching is common with kidney patients and I have actually scratched myself raw at times. This is because of the high phosphorus levels in our blood .

Still waiting for the call from Vandy...I jump every time the phone rings. Maybe this week they will call....I am praying. In the meantime I have a lot of appointments coming up. Thursday I see the cardiologist for my yearly exam. I am hoping and praying there are no surprises. I have a couple of defects with my heart..LBBB  heart and a heart murmur. LBBB is a problem with the electrical system of the heart that will eventually require me to get a pace maker. I am still positive all this will work out...I have too much left to do and a whole lot to live for! Come on phone...ring!!!

Saturday, November 24, 2012


Just when I thought the antibiotics were working...woke up with pain in my side. Pancreatitis and UTI. This is my 3rd infection in  2 months. Lord,I need a break from all this!

Wednesday, November 21, 2012


Do you believe in Guardian Angels? I had the most amazing experience last Sunday night. I have not said anything about it for fear of being thought of as a crazy women! But...I decided it was too wonderful not to share. I went to bed around 10 p.m. feeling  horrible with this infection and pancreatitis and the extra fluid  in my body was worse than ever. I fell into a very deep sleep and must have rolled over onto my back at some point. All of a sudden I felt as if someone was rushing to my side and sat beside me on the bed. At that moment I felt like I could not breathe and was choking on the fluid that had gathered in my throat...the presence I felt sitting on my bed  reached out and touched my face and said ...' you are going to be okay'. I did not hear these words out loud.... but it was as if she said them to me without actually speaking them.... and I understood why she was there. In my mind I asked her what her name was and she said 'Holly". I took in a big gulp of air and she was gone. Next thing I know  I was fully awake coughing and gagging but breathing! I looked at the clock and it was 2:50 a.m. I got up and stayed up...I could not go back to sleep. I believe "Holly" is my guardian angel because I know I was choking in my sleep and not breathing when this happened. I can see my husband shake his head and roll his eyes at me over this...saying it was just a dream...but I don't think so.....

Monday, November 19, 2012

just a quick update...

We are still waiting on all the results from the tests for the transplant. I talked to my transplant coordinator today and she said everything so far looks good . Just have to be patient and wait for the call! I spent the day at Vanderbilt to follow up on my pancreatitis and labs show I also have a bladder infection as well as an upper respiratory infection. A round of steroids and antibiotics hopefully will clear it up. I thought for sure he was going to admit me to the hospital and was so thankful when he said lets give it a couple of days to let the antibiotics kick in. I rest so much better when at home in my own bed! I thought it was so funny when he looked at my lab results from  my kidney doctor and said,'you are on dialysis, right?' I said,' no,trying to hold off until my transplant ,then I won't need it'. He replied,' looking at these numbers that's impressive'.

Friday, November 16, 2012

Jesus calm my fear...

It is amazing how our kidneys work to maintain the health of our body. Not only do they act as filters to remove toxins from our blood,regulate salt and fluid, but also play a huge role in keeping our other organs vital and healthy. When the kidneys fail the other organs are being stressed as well. As I have said before I want this blog to show what it's really like to live with Kidney Disease and the effect it has. I have had trouble with my pancreas for a couple of years now and have been in the hospital twice for it in the past year. I was back at Vanderbilt today for my regular appointment, kidney function tests and follow up from my shoulder pain. What was thought to be my rotator cuff was followed by a pancreatitis attack and my doctor believes the two are connected.  I have been in so much pain today and my labs show that my pancreas enzymes are elevated with a slight loss in the very little kidney function I have left..The bad news is I have Chronic Pancreatitis and will have to be treated as a separate issue. I have to find out exactly how much of my Pancreas is damaged and the best way to treat it. My husband asked my renal doctor  if the kidney transplant would be a cure for these other health problems and she said it will make me feel better and give me a better quality of life but no it will not cure the other health issues and I will need to deal with them as well. In no way will this effect my ability to get the transplant but I couldn't help but feel a little discouraged at this latest news.I have to stay strong and positive! I remembered one of my favorite bible scriptures that has helped me deal with fear and worry all along this journey.

Matthew 8:23-27

23 Then he got into the boat and his disciples followed him. 24 Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25 The disciples went and woke him, saying, “Lord, save us! We’re going to drown!”
26 He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm.
27 The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him. 

I will remember  God's promise to calm the storm in my heart and ease my fears. 

Wednesday, November 14, 2012

It Was A Wonderful Day....

Here I am awake again at 2:42 am. I woke up with another mild pancreatitis attack.I am getting so used to being in pain. And  no way am I letting a little pain put a damper on the wonderful day I had!  My kidney swap donor and I finally got to meet in person today for the first time when we went in for blood work! It was one of  the most precious moments of my life. To finally meet the person who is going to be responsible for saving my life! My son and I were walking into the clinic and right away my donor and I recognized each other! It was a very emotional meeting. I instantly felt as if I had known her my whole life! It was proof for me that God brought us together for some purpose. I feel that even if things did not work out with the transplant we were brought together for a reason. She has become part of my family,there was this instant bond between us and my son and daughter felt the same way! Even my six month old grand-daughter took to her right away and could not stop smiling when she held her! Being so ill for so long I think I see the world and the people in it differently than I used to. It is hard to explain but it is as if I am watching and observing from somewhere else at times. I can see the beautiful spirit in the people around me. I don't know if that makes any sense but it is the only way I can describe it! Thank you God for your goodness and mercy and bringing this special person into my life!

Monday, November 12, 2012

How I Got From There To Here...

My journey has been a long one. Nineteen years to be exact. I was awaiting the arrival of my 2nd child. I had waited 8 years after the birth of my daughter to have my son and we were so excited to finally complete our family. Six months into my pregnancy I woke up with the worst headache of my life and noticed some swelling in my feet and ankles. My husband and I had plans to go to dinner that night and went even though I still had a headache. I thought getting out would do me good. But by the time we got to the restaurant I started to feel numb in my face,arms and legs. Immediately we left and came home to where my mother in-law was babysitting my daughter. Being a former labor and delivery nurse she recognized my symptoms right away and took my blood pressure. It was 240\130!! I was rushed to the hospital and was admitted to try and bring my blood pressure down. But after the third day  my blood pressure was still not budging. In and out of consciousness I started trying to pull out my I.V.s. I don't know why and I barely remember doing it. Next thing I remember I was being whisked away in an ambulance to Vanderbilt University Hospital where they are better equipped to handle, high risk pregnancy. It was my 32nd birthday. I remember being in the ambulance and waking up and the EMT saying 'Mrs.Mcgee, Happy Birthday!' He was holding a spoon and later realized it was used to keep me from biting my tongue during a seizure. I spent much of the rest of my pregnancy in the hospital. One day I was given the news by my team of doctors standing around my hospital bed. My kidneys were damaged. I probably had kidney disease for years and didn't know it since it does run in my family. I cried and cried. I had never been so scared in my life. Here I was given this diagnosis and about to give birth to my son with my young daughter at home. What I did not know was that IGA Nephropathy  is a long drawn out progression to kidney failure. The day after my son was born I was just getting settled in at home when I received a call from the hospital where my mother had been admitted a week earlier. She had passed away just 30 minutes after I had talked to her on the phone. I thought my heart would break, we were so close and I just could not bear to be without her. I had a newborn, was given the news about my kidneys, and I had to bury my mother all in the same week. So I pulled myself up and did what I had to do. I had to be strong. Over the next several years I did a lot of research about IGAN and with the help of a very good nephrologist and the right medicines I was able to keep things under control with minimal change to my kidney function. Then about four years ago I went through a very stressful period in my life and became ill with flu like symptoms.My blood pressure was out of control just like years earlier during my pregnancy. IGAN patients do not handle stress the same way others do. Being an autoimmune disease stress causes our immune system to go into overdrive and in turn attacks the kidneys leaving them scarred and damaged even more. Sitting in the exam room my doctor walked in and with a concerned look on her face said'What happened?' I had gone from stage 2 to stage 4 on my way to complete kidney failure and there was no going back the damage was done.Once again I sobbed right there in my doctors office. Immediately I was placed on the transplant list and an AV fistula was placed in my arm. I went home and retreated to my bedroom for weeks and looking back I now know I had a complete nervous breakdown. What a dark time in my life. But with a lot prayer and never forgetting that God would walk me through any storm I never lost my faith even when I was at my lowest point. Even though my health and kidney function continued to decline and now I am in stage 5 the final stage, I feel stronger than I ever have in my life. Not physically strong but spiritually and mentally strong. They say what doesn't kill you makes you stronger. Boy is that ever true!"I would rather have 30 minutes of something wonderful than a lifetime of nothing special!" -Steel Magnolias

Saturday, November 10, 2012


I am so tired tonight even though I slept the whole day. It was dark outside when I finally woke up this evening. The tiredness comes with the kidney disease. It is not the kind of tired you feel after a days work. It is a different tired. I feel it in every muscle and joint and walking  even to the bathroom takes all the effort I can muster. By the time I make it to the bathroom I am out of breath. Today was the day my daughter and I usually go to the annual Christmas Village together. Neither one of us went and she spent the evening with me at home. I promised her things would be different next year. Lately I find myself falling asleep anywhere,even sitting straight up in a chair. For this reason I do not drive more than the distance between my daughters house and mine. I am honestly afraid I would fall asleep at the wheel!The fatigue and feeling so cold all the time makes me want to crawl in bed and stay there.

Friday, November 9, 2012

I Promise to Pay It Forward...

On November 13th I will be meeting my donor for the first time!! I am so excited to finally meet the wonderful lady who will be donating  her kidney. Through the kidney exchange program this was made possible since we were not compatible  in our blood type. When I was first told I would need a kidney transplant and placed on the list I naively thought there would be a line of  family members just waiting to be tested. There were some that stepped forward but for various reasons decided not to or couldn't. Don't expect everyone to understand what it is like to live through illness on a daily basis. I have learned that you have to be your own advocate when it comes to your health. Don't be silent! You cannot simply sit back and hope for the best. Don't be afraid to reach out and ask for what you need. There are people in this world like my donor who just want to make a difference in someone's life. I promise after  my transplant I will find some way to pay it forward. I too want to make a difference in someone's life and to share the Blessings God has given me. Just to have a shoulder to lean on when things get rough can mean so much to someone. Or to be the voice for someone who can't speak for themselves. I hope this blog brings awareness to the need for organ donors as well as how day to day life is for people living with any kind of illness. And also how it affects the families of people like us. What I say on this blog is not always going to be easy to read  as I go through the transplant . But it is real and sometimes emotional. It is so helpful to write it down and I believe an important  part of the healing process.

Tuesday, November 6, 2012

Ready to Live...

I did not write this poem but it really hit home with me when I read it. Sitting on the sidelines is no fun. I am ready to get out there and live! I want to run and play with my grandchildren. Walk with my husband without pain and take those trips we had planned in our old age. I want to do all those things this illness has kept me from doing.

If not for you I could feel the sun upon my face...and play with my Grandchildren along the way. I could swim in the ocean and feel the warmth of the water as it washed over me. If not for you I could walk along the white sand with my husband and feel it between my toes as when I was a child...if not for you. If not for you my life would be free from pain ... if not for hair would still be long and flowing like sun spun gold… if not for you... 


Monday, November 5, 2012

Laughter and tears...

Wow! What an emotional week it has been! It really hit me yesterday when I broke down and just could not stop crying. I was going about my day as best as I could with the very limited energy I have. A short trip to the grocery store for the chicken I had planned for dinner and I knew I would have to come home and lie down for a while . Even the smallest tasks are just too exhausting these days . Sitting in my car in the store parking lot the emotions I  felt during the past week came pouring out. Just out of nowhere. I can't explain why or what triggered the tears. I think it is probably normal to go through all these emotions. So I just embraced it and let myself go with it. I guess some people would call it "wallowing  in self pity" but that was not it at all. I was not feeling sorry for myself..I was finally mourning the loss of the person I was years ago before this illness took over my body.My doctor jokes with me that I could give her lecture on kidney disease because I have been through so much. I have learned that   I am stronger and more resilient that I ever thought I could be.My body may be broken but my spirit is strong. And I also have realized that I  deserve to be healthy and happy. I always worry about the people around me and not so much myself . I know that part of me will not change. It is just who I am. If  someone around me is upset than I am upset too. My mother used to tell me that I carry the weight of the world on my shoulders and I guess that to be true. Because I also cried yesterday for the thousands of people who are still waiting for a chance to live a normal healthy life. I recently read an article that said last year alone 4,720 people died waiting for a kidney transplant. I am so thankful for my donor and my chance to get my transplant. I just cannot express enough how grateful I am to her for never giving up even when she was told we were not a match.Thinking of her and the gift she is giving me made me cry even more.. Sitting at dinner last night with my family and feeding my grand-daughter my mac and cheese for the first time I was hit with another emotion. Happiness and joy! In the movie Steel Magnolias there is a line where Dolly Parton says..."Laughter through tears is my favorite emotion". That is my favorite as well. That is how you know you are truly alive.

Friday, November 2, 2012


I am so very relieved and thankful tonight. After a very rough night I called my doctor this morning and described my symptoms. Intense pain from my shoulder down to my fingertips in the same arm where my dialysis access is located. I am also having upper stomach pain that has lasted a few days.My doctor said GO NOW to the er. They thought I could be having a heart issue since I  just had an infection in my jaw a couple of weeks ago. I was so scared,because that would have affected my transplant. Well, thank God it wasn"t my heart!!! I have a torn rotator cuff and my pancreas is acting up again. I get prancreatitis from time to time. This time probably from the antibiotics I took. When the doctor told me it was not my heart but the rotator cuff I wanted to hug him. I breathed a huge sigh of relief. When I finally got home I was greeted by hugs and kisses and the smiling faces of my kids and grand-kids. Thank you Lord for the many blessings you have given me!

Just hold on a little while longer...

I am having intense bone pain tonight in my left arm where my AV Fistula is. The pain is so bad that I had a panic attack earlier this evening. I woke up and went to the kitchen  and was met by my son who had heard me cry out in my pain. He put his arms around me and gave me a hug." Hold on just a while longer mom" he said "and all this will be over soon". My son has never seen me well in all of his 19 years. I am looking forward to this so much,just got to hang on.. I hate the way this illness has affected him,my son worries about me and I know he is going to need all the emotional support he can get while I am in surgery. He wants to know everything that is going to happen. From how long the surgery will take,what the recovery time is and what are the chances of me not making it through. He is too young for these worries. He told me he had a dream that we were at the beach and that I was healthy.  I know better days are around the corner and my kids will finally have a new mom!