Friday, June 30, 2006

My first night with my C-Pap machine while I sleep for my Sleep Apnea. I couldn't use it all night because it takes a little getting used to but I think I actually feel better this morning. I'm not tired like I usually am. .....I still can't get over the fact that this all could have been prevented if I was diagnosed with Microscopic Polyangiitis five years ago at Veteran's Administration in LA. I remember my first biopsy in Los Angeles at the West LA Veteran's Hospital. They had young interns shooting me in the kidney and I remember they kept missing. They must have done this about five times because I remember the doctor apologizing for missing and saying "this will be the last time". I was in pain because this is the type of biopsy that you have to be awake for. I would like one of my doctors to get the film from the first biopsy. To think all the time I was getting Kidney failure they couldn't understand why I was getting it. ....I have to get ready for dialysis. It's about 90 degrees out to day and that makes it hard to breath for me.

Thursday, June 29, 2006

I've been doing lots of research on Microscopic PAN but I can't seem to find anything that tells you that it might be possible to get back some lung capacity. Today I'm going to write a letter to all my doctors so that everyone is on the same page in regard to my treatments and the medications I'm taking. I want to make sure that none of the medications will conflict with cytoxan, chemo and my dialysis. I noticed in my research that I have to have constant blood tests to keep everying in check. Since I'm in dialysis every other day, they can take the blood teats and give me the report so that I can send it to my doctor.

Wednesday, June 28, 2006

I was watching the news today and it's all so frustrating. They are all saying the same stuff but the most amazing thing is that we are closing schools in Newark, New Jersey; we're closing child daycare centers because of lack of funding but we are sending hundreds of billions of dollars to Iraq. We are sending them something like 2300 Hummers for their police. Our police departments and our fire departments are going without or even closing and we have billions to help out others. What's wrong with this picture. We have to do something to change this. I sure hope the next generation can do this because this generation sure can't.

Tuesday, June 27, 2006

I have an advance directive but my sisters keep reminding me to make up a will. I'll do that this week. They said that if I don't then the state of New Jersey will keep everything. I have to tell them how I want to be buried and any info to my accounts. I do want to be creamated. I think that will be the easiest. Then the ashes can be put over the grave of my parents. That way we can save the cost of digging and I'll be right where I want to be. They can bring a plant and then dig a whole to put the plant in. When they plant it then can put my ashes just below the plant. Rosemarie and Janet can do that. I'll try to write something that they can read. What a thing to have to think about but everyone has to give these things thoughts. I intend to be around a long time but I'll get this all in order for them. So they stop asking me. .....I bought a new computer desk and a lamp for my apartment. I sure wish I could drink fluid. That's the worst thing about dialysis...not being able to drink. I have to keep sucking on ice cubes or taking little sips of water.
I have very dry skin from the dialysis so I went to a dermatologist and he prescribed Beta. Val 270/ Aquaphor 187. It comes in a big tub and I put some on. It works. My skin looked great after the application. .....I had loads of dreams last night. I had a dream about Enid and one about Bill Turner. I should write down my dreams as soon as I wake up from them. I think having sleep apnea makes me have more dreams because I go into REM more times then the average person. I wake up and then go back to sleep more times in one night. I don't know if that's true but that's what I think. ....It's Tuesday. No dialysis. Weather is bla. I was up at 5:30 am and then I had some tea and toast. I took my medications and a xopenex treatment, then I went back to bed to sleep off the meds. I still have a lot to think about in regard to the Chemo.

Monday, June 26, 2006

Dr. Kerr called me. I have sleep apnea and he's ordering me a C-pap machine to sleep with. This will keep me from when I stop breathing while I'm sleeping. I've been very depressed today. Just thinking about all the things going on in my life. I'm sure I'll get over it but it's not easy having all these things wrong with you and not knowing how you got any of them. The doctors don't even know. Everything I have seems to be a mystery. Dialysis was very good today. I've gained some weight. I'm about 124 lbs today. They took off about four pounds of fluid. I have to know try to get all my doctors on the same page if I'm going to be getting Chemo for my Microscopic PAN.

Saturday, June 24, 2006

Yesterday was a very busy day; starting with my 7:30 am meeting with Dr. Daniel Albert in the Rheumatology division of the U. of Penn Medical Center. Dr. Albert says there is proof that I have Microscopic Polyangiitis, a rare kind of disease that attacks the organs. In my case it attacked my kidneys and my lungs. He has suggested that I give consent for Chemotherapy and I take Cytoxan along with prednisone for three months then test my breathing and see if it improves. He and Dr. Ahya think That I can get back 20% of my lung capacity and I sure would like that rather than a lung transplant. Then maybe I can do the kidney transplant and get on with my life.
I talked with my friend Joan and asked her about Chemo. She’s on Chemo now. She said it’s nothing as bad as what I already went through. And yes, you will loose your hair but when it’s completed it will grow back.
I want to discuss this with my pulmonary doctor, Dr. Kerr and my renal doctor, Dr. Albanese. I should also check with my heart dr.
Microscopic PAN and I think the N stands for Nodosa is seen 1-3 out of 100,000 in the United States. So it’s not easy finding people that have already gone through this. But I will and if anyone knows anyone please let me know. If anyone reading this knows anyone that has taken the drug Cytoxan I would like to know what that was like too.
I know that Dr. Albert is talking with Dr. Ayha but it’s important that I get my doctors in New Jersey to talk with them; particularly my pulmonary, renal and heart doctors.
Right now I’m telling myself “yes” about doing it but that keeps changing. What I want most is to be able to travel without oxygen and then get a kidney so I don’t need to go to dialysis every other day.After my meeting at U of Penn I had to drive ( I had a driver) take me two hours back to New Jersey to have dialysis for 3:45 minutes. It was a good dialysis. I had lots of energy after it.
I have decided that I have to take “vanity” out of the picture. I don’t want to think about what I will look like without hair. It’s scary but I’m going to let it sway my decision. There’s more things worse then loosing your hair and don’t I know that.

Back to thinking about this and doing research. I want to find someone that has been through this. I can’t be the only one!?

Thursday, June 22, 2006

I've been feeling very good. Good enough to go to have dinner at my nieces house. I drove there. My only problem is that I need another O2 tank because I almost ran out of O2. Today I'm off from all appointments and then tomorrow morning at 5:00AM I go to U. Of Penn Hospital to visit with Dr. Albert. My dialysis yesterday was very good. I left with a blood pressure of about 130/70 and that's very good for me. I usually would have a BP of below 100 and would have to stay there until I was above 100. I must be doing something right. I have been taking it all very easy. I don't rush and I stay calm all the time. I also think that the celexia is working. It keeps me from getting depressed. It's about time to change the fish bowl. Twizzle is looking at me. I should also hear from the Sleep Disorder people. I'm sure I failed that one. My niece, Sharon, also took the test and she failed and has to sleep with a C-pap on. I'm sure her husband is going to love that. I got some bad news that my dear friend and oldest friend (I mean that literally) died yesterday. Enid Rodgers! Enid was one of the nicest and fun people I knew. She always called to ask me how I was doing. I helped her when she got her hip replaces. I took care of her in Los Angeles. I will always remember the fun I had with her. Her favorite wine: Pinot Gregio. Bless you Enid.

Monday, June 19, 2006

Last night was Sleep Disorder night. I slept over at the hospital but it was all set up as a hotel room. Not a Circle 7 but then again not a fancy hotel. It was about a $40.00 a night hotel room but I'm sure they will charge the insurance company about $2000.00. They attatched electrodes all over my body and monitored me sleeping all night with a C-PAP on. It wasn't too much fun. I'll get the report in about two week. I got up around 5:15 am and went right over to dialysis just across the parking lot. After that I came home and slept all day because it was so hot outside and so cool in my apartment. Tomorrow I will get my cyst removed and then on Friday I met with Dr. Albert in U. Of Penn. I feel very good but I still have all that sticky stuff in my hair from where they stuck everything on me. I have to take a shower and get it off.

Thursday, June 15, 2006

I have to call the Sleep Apnea person today and get the day that I’ll be sleeping over. I do have problems sleeping more than two hours at a time so I’m looking forward to this helping me there. I wake up tired.
My nephew, Mickey, is becoming a Monk and he’s coming to visit on Saturday for 21 days. I’m looking forward to it. When he returns then we won’t see him for a year.
I’m so sick of getting telemarketing calls. I even get them on my cell phone. I hate it. I sure wish we could stop it.
It’s about 6:00 am. I get up early. I have to change the fish bowl today. He’s been looking at me whenever I pass his bowl. I put a statue of a light house in the bowl so he thinks he’s traveling.
On a 1 to 10, today I’m an 8. or maybe a 9. I am so lucky to have my sisters here helping me. Everyone should be so lucky to have two older sisters that look after you2:11pm. I made my appointment with Sleep Apnea to sleep over on this coming Sunday; Fathers Day. They said they had a cancellation. I took it so that I can get this over with and I have no reason to celebrate Father’s Day.
I did something today that is a little embarrassing; Something that is very metrosexual: I got a pedicure and it felt great. Why is this just for women. I loved having my feet scrubbed with sea salt. It felt great. I figure this is summer and I may have to take my shoes off at a pool and I don’t want to have old looking ugly yellow toe nails. This was perfect. Now I want to get my shoes off as often as possible and I want to point with my toes.
I went shopping today. My home health aide is here today helping me.
I have to eat lunch, I’m starving.

Tuesday, June 13, 2006

This was a great day! I met with Dr. Ahya. We talked about the transplants. We’re going to take things one at time. First I’ll met with Dr. Albert and see what he has to say about the Microbiotic PAN possibilities. I’ll see him at 7:30 am on June 23rd. After that we’ll better. I told Ahya about Caroline being my kidney transplant and once we see what’s happening with the Lung then we’ll move forward on that. He asked me Caroline’s blood type and I didn’t know. My blood type is O+. If Caroline is O+ then we’ll be able to be a perfect match. If I’m just getting a kidney then that could work but If I have to get a kidney and a lung at the same time then it’s best to get both from the same donor.
I told Dr. Ayha about my sleep apnea test and he told me not to use oxygen on 4 at night because it would disrupt the natural way the throat works. I didn’t really understand it all but there’s only a few day before I get the sleep apnea test again; I waited this long I might as well wait another couple days.
I talked with Jim Mendez ( nurse for Dr. Ahya).
They all noticed that I gained five pounds. They also noticed that I was breathing better so Dr. Ahya scheduled another breathing test in six weeks.
This was a seven hour trip. It normally would take about 1 ½ hours to get there but we were in an ambulance that was using GPS and GPS totally screwed us up. They have to get that system down if they intend to sell the system. We finally made it after we told GPS where it was and how to get there.
I have to rest now. I’m totally exhausted. I’ll write more later.

Saturday, June 10, 2006

I recieved another appointment for Dr. Albert for 7:00 am on June 23. I'll be there. I want to get this all going. I also want to meet with the kidney doctor. I feel like I'm ready for a kidney.
Last night I had a dream that Lotus Weinstock came to me in my sleep and we laughed. Lotus was one of the funnyest women I've ever known. She died last year of a brain tumor and I will always smile when I think of her. Her book "The Lotus Position" is out there and she thanks me in her book.
Saturday with Sonia Milfort was great. Oysters, shrimp and lobster at Wharfside Resturant in Point Pleasent Beach. It was a beautiful day. I haven't been out like that in months. She came in from New York and then caught the train back around 5:30 pm.

Friday, June 09, 2006

I juzt want to get something in the blog today. It's been down for a couple days. I've been dealing with so much stuff regarding kidney transplants, Sleep apnea, lung transplant and just dealing with all the doctors and nurses. There should be one person that represents us and does follow on all projects. It's important to keep the kidney transplant moving. Someone has to stay on top it. It's very difficult for the patient to do this alone. If possible I would like to have a kidney by the end of the summer. ........Today was a great day for dialysis. I'm feeling great and I left with bloodpressure of 140/ , usually I'm way below 100 and I can't leave until the BP comes up above 100. .....Sonia Mifort is visiting me tomorrow. She'll arrive on train. I'm looking forward to it.

Thursday, June 08, 2006

I'm a little frustrated because it takes a lot to keep all these things going. I want a kidney transplant and Caroline has agreed to give me a kidney. I want to keep this all moving but it's not easy. There should be a person that coordinates the transplants and your medical appointments. I've been feeling very good and I have good energy. I have more energy then I've had in a long time. .......Dr. Kerr ( pulmonary) said that I'm doing great. He went over my medications. I had a list of questions ready for him.
I'm a little frustrated because it takes a lot to keep all these things going. I want a kidney transplant and Caroline has agreed to give me a kidney. I want to keep this all moving but it's not easy. There should be a person that coordinates the transplants and your medical appointments. I've been feeling very good and I have good energy. I have more energy then I've had in a long time. .......Dr. Kerr ( pulmonary) said that I'm doing great. He went over my medications. I had a list of questions ready for him.

Tuesday, June 06, 2006

I went to see Dr. Albert, the famous Rheumatologist, but he didn’t make it to the meeting. I guess that’s what fame does to you. I first had a 7:00 am appointment and then they switched it to 9:00 am and when I got there they told me he was going to be late. I asked “how late” but they didn’t know. I told them that I don’t have the entire day because I have to have dialysis. The secretary suggested I reschedule my appointment so I did for 8:00 am on July 21st. I’m very interested in getting in there and finding out about this new approach to heal me.
It’s Tuesday and I have an appointment with my Brick pulmonary Dr. I have a lot of questions to ask him. It’s always good to have all your questions written down because once you’re in the office you forget everything you want to ask. Well, I do anyway and you want to get the most out of your visit.
It’s a little rainy today but it’s still nice. Any day I don’t have dialysis is a good day for me.
I have to start my day. I have lots of stuff to day and Kim, my home health aide is coming around 11:00 am. I have to return a toy I purchased for Jenna. I also need to buy dish detergent.

Saturday, June 03, 2006

I had a little problem yesterday in dialysis. We tried taking off a couple extra pounds. I have gained weight and now weigh about 125 Lbs. I gained about 5 Lbs. so they took 5 pounds off me. We went for six because I wanted a little extra room for the weekend. But my blood pressure went down into the 70s and I got very dizzy so they had to put more fluid back into me and then I was ok. I also had trouble breathing for a little while. That was the first time that happened in weeks. I’m sure it was my fault.
Dr. Albert, the Rheumatologist, changed my appointment from 7:AM to 9:AM. Now I just have to worry about getting to dialysis in time back in Bricktown.
It’s Saturday…rain…lightning and thunder. Khol’s is have a big sale and if you go with a senior citizen then you get an extra 15%. ...........I tried to find as much info as I can on Dr. Albert at U. of Penn but there isn’t much except his education and that he was featured as one of the best doctors in the world. Hey, I have to check that out again. He was also featured in the Philadelphia Magazine. He’s a professor and got his degree from New York University. I still don’t know where I fall into this picture because most of his bio seemed to talk about Arthritis related problems. I sure have a lot to learn but I guess that’s why he’s the doctor. I always thought it would be fun to be a doctor as long as no body got sick or was bleeding. I wouldn’t like it then. But I would like hitting someone’s knee with a small hammer and seeing if they had a good reflex.
I changed my pick up time to 7:00AM on Monday morning. That’s a little better. If there’s no traffic then I’ll have it made.

Thursday, June 01, 2006

I had a great day today. I had Kim here cleaning and helping me around the house. Then I went shopping to pick up some bread, pineapple juice and Southern Fried Chicken legs. They were good. I can’t help but think about my meeting coming up on Monday. I heard the treatment was controversial but I don’t know how controversial it is. I’ll know in the morning, I guess.
I have to watch my fluid in-take. That’s the hardest thing about dialysis. You’re only allowed about 40 oz a day and that’s not easy when the weather is warm
It was about 80 degrees here today.
I’m going to take a nap.