Thursday, February 23, 2006

I talk with many people that have COPD but most of them seem to be able to get around. They go shopping and they are doing things. I don’t to do a lot of things. I am mostly sitting and everything I do I get out of breath. I mean everything. I tie my shoe, I’m out of breath. I get up to get the remote control, then I’m out of breath. Sometimes I forget I have COPD and I jump up and do something fast and then I will suffer because I’ll have to deep breath until I can get my breath back. It’s a good thing that I’m used to it because it would be very scary if I didn’t realize that I will get my breath back.
I’ve been drinking more that I usually drink and eating more then I usually eat. I’m eating because of the medications that I’m taking. WOW, am I eating and I’m loving it. Today I had Fettuccini Alfredo for breakfast, after eating three English Muffins and a cup of tea. For Lunch I had two roasted turkey sandwiches, with a bunch of treats in cluding cookies, candy and a glass of chocolate milk with malt. I also had pineapple juice, one of my favorites.
When I left dialysis on Wednesday I weighed 121 lb and that’s much better then what I was. I used to leave at around 116 lb and that was getting too low. Tomorrow they will take off the fluid for the weekend.
This week I want to prepare for my U of Penn appointment with Dr. Ahya. I want to do everything I can to pass the tests so that I can get on the lung transplant list. It would be so nice to be able to breath. It’s all about quality of life. I have a good life but I just can’t do anything extra. I miss birthday parties, dinner parties and even short trips to see my family. I can’t just jump up and run out. It takes a lot of energy to do anything.

Wednesday, February 22, 2006

They took off about 8 lb from me today in dialysis. That's a lot for me but I felt very good after it. I'm feeling good today. I get a little out of breath when the temp in my house goes up to or over 75. I just shut off all the heat to try to bring it down to about 60 to 71. I think that's where I breath the best. In the summer I keep the house very cool and I breath better with that. If you've been watching TV I'm sure you're sick of talking squirrels and talking Gekkos. I really hate the talking Gekkos. It's an insult to our intelligence that we are listening to a gecko. For that I would never buy that car insurance. .......................................................................................When I came home from dialysis I went right for the fetticini Alfredo and loved it. I have to go back to that store and get more Italian treats.

Tuesday, February 21, 2006

My breathing continues to get a little better with the medications. The only problem that I have is that my pulse rate goes up to 170, it goes from 128 to 150 and then higher. It's probly my predisone and Lavaqin doing this but I'll try to call Dr. Kerr today just to make sure it's OK.
I called transportation to double check on my ride to U. Of Penn for March 2nd. I have to check back with them on Feb 28th to make sure it's happening. They will also be changing my transportation to dialysis so I have to keep on that. They say they don't pick up until 6:00AM so if they do that then I'm going to drive. I don't want to get there that late.
Sherry is coming over today for lunch.

Monday, February 20, 2006

I'm feeling much better today. There's nothing like a good hit of cortisone and a few tabs of predisone. These combined with Lavaquin has my pulse up a little high. It was about 130-140 through dialysis. By the time I got home my pulse was normal. If it spikes again then I'll call Dr. Kerry (Pulmonary) but Dr. Albernese thinks it's the new mediations as well as Advair. I'll keep an eye on it. I'm breathing a little better but still have to do things very slow.
My weight today is 121 lb and that's pretty good. I'm gaining a little weight and I have a very good appetite because of the medication I'm taking to increase it.
Tomorrow I have to make the arrangements for transportation to U. Of Penn. I'm looking forward to seeing Dr. Ahya and moving the Lung Transplant closer. That is going to be so awesome if I 'm able to get new lungs.
My niece Carleen was here today and dropped off some food. Turkey sandwich, Chicken Cordon Blue dinner and a meat ball dinner with pasta. She also helped me pick up some stuff off the floor so that Santo can vacuum.
Sherry will be by tomorrow for lunch with the girls. I have to pick up a gift for her birthday and also get something for Robert and Mark.
ADD girl down the hall drops me off my newspaper in the morning with out me knowing it . I was wondering how my paper was getting here. That is very sweet of her but she's very hyper. More and more the little old ladies are saying hello to me.
It was a good dialysis today. One of the ones where I felt the best after dialysis. I'm sure it has something to do with me being 121 lb.

Saturday, February 18, 2006

I feel like I haven't on my blog for a week but it's only been one day. I went to Dr. Kerr yesterday and he gave me a shot of cortisone and a week of predisone. As well as an antibiotic. He said I might have an infection in my lungs and the antibiotic will be a better way to see if it is an infection. The only other way to know is to go inside and look and he doesn't want to do that. He looked at my Xray. I was not breathing when I went in there. I could only walk about three steps at a time without getting out of breath. The cortisone started working very fast. I love it.
On March 2nd I go to U. Of Penn and I'll take the Xray. They might know what is best for me. Dr. Ahya may know more about this then Dr. Kerr. I would like to know if I should take another Xray in a couple weeks to make sure the infection is gone.
Rosemarie brought me over coffee and a jelly donut. Janet called me and we laughed this morning. Denise called and then talked with Rosemarie about her condo. I'm going to take a shower and then go to get a massage. I really need one today. Sherry is having a birthday dinner tonight but I don't know If I'll be able to make it there. I would like to because it's at a Japanese restaurant and everyone will be there.
I didn't win the lottery this week and it's up to about 170 million. Maybe next week. Ya whoo.
New water in the fish tank, Twizzler is happy now. My sister, Rosemarie, throw the rocks in the bottom of the fish tank. Poor Twizzler must have thought he was being bombed.
....well, I didn't go to get a massage.I just didn't feel up to it and I still getting out of breath easily. I'll try next week. Plus with all the medications I'm on right now, it's best to just rest and sleep. I also won't be able to go to Sherry's birthday dinner tonight. I think that would be too much for me too. It's not until 4Pm. I sure wish I could go because it's at a Sushi Resturant and I love that.
I'm going to go rest now and let the meds work.

Thursday, February 16, 2006

I'm not breathing very easy today. I don't know why but I am going to try to go outside and do a little shopping. It's going to be in the high 50s today so I want to take advantage of that. I need a few things and it's going to be getting cold in a couple days. Tomorrow it's supposed to rain. I don't understand why I'm having a little trouble breathing. I have to make sure it's not the new sheep skin that I got from Caroline. I sure hope not because I really like it. I'll put it away for a couple days and see what happens. I was breathing easy the other day.
I took some of that new medication for my appetite. It's actually a medication for cancer patients but I'm taking it for the side effect that it has on cancer patients. As soon as I saw the description of the drug, I called the pharmacist and asked her.
I've been up since 3:00AM. I took a shower and then had a big breakfast of pancakes, bacon, tea, a banana and all my medications then I went back to sleep for a little while. I got up again around 4:30Am. I'm used to getting up early for dialysis so it's not unusual for me to be up early. I like the mornings.
I'm going to shower and go out for a little while.

Wednesday, February 15, 2006

When a lung transplant was first mentioned to me I thought would be impossible for me. I didn't think I could ever do anything like that. Now, I can't wait to see if I will qualify for a transplant and I can't wait to get on the list. I hear so many good things from transplants that couldn't breath and now they can walk around, breath and live a normal life with the exception of taking about 30 pills or so. I don't care about that. I just want to live a normal life. Now I have to just watch things go by because I can't really participate in things. Today, I'm taking it easy. I have to do everything slow. I did pick up my X-ray from the hospital and I picked up my prescription that is supposed to increase my appetite. We'll see if it works. I have to rest a little now.

Tuesday, February 14, 2006

My home was about 75 degrees and I was having a little trouble breathing. I lowered everything to about 71 degrees and then it was easier to breath. I had to sleep with the window open and that also helped me breath.
Everything I do I have to do slowly. If I do anything too fast then I'll get out of breath. Today I have to make my way to the Ocean Hospital so that I can pick up my X-rays for Dr. Kerr to look at and to take to U. Of Penn next Friday. I'm looking forward to finding out just what the "infiltration" is on my left lung.
COPD is such a strange disease. One minute you can be breathing easy and the next you're struggling to breath. I have to do a lot of the perched breathing so that I can control my breathing. That seems to help the most.
When I sleep, I sleep best with a pillow next to my chest. It raises my chest up a little and lets me breath easier. When I first lay down I have to adjust my breathing. When I first lay down, it's hard to breath. Then I gradually start to breath. Sometimes I have to get up and start all over again or I have to sit at the end of the bed for a few minutes.
I wonder if you start breathing deep breaths right away after a lung transplant?
Dr. Albanese lowered my dry weight to 55 kg, which is about 120 lb. But I left dilalysis at 117 lb or about 53.5 kg. That was after they put a full bag of saline back into me.
Well, it's rest time again. I'm just going to lay down for a little while.

Saturday, February 11, 2006

I was taken by the report from Dr. Kerr. It's difficult when you really don't understand what the doctor is talking about and then you might jump to a conclusion. I'm feeling better today. I'm breathing easy today but I have to really take it easy. I have to move slow so that I don't get out of breath. I did a treatment this morning as well as Advair. We are expecting a snow storm this evening that could bring a foot of snow or more. Denise is coming over this morning and bringing me breakfast. I'm getting crepes from IHOP. I can't wait because I'm very hungry. I haven't really had too much to eat the past couple days. I haven't had a big appetite. I eat but I only eat a small amount. One of my doctors prescribed a pill that will increase my appetite. I'll pick that up today. I'm also going to pick up a nice piece of fresh fish from the co-op in Pt. Pleasant Beach. I have to eat food that is attractive. I don't like to eat food that is covered with lots of stuff. I like simple cooking without gravy or sauce all over them. I like lamb chops, steak, fish (flounder, monk, Talapia, salmon, trout, red snapper). I also like lobster. I like lobster a lot. On Monday afternoon, I'll pick up my X-rays from the hospital so I can take them to Dr. Kerr and then the week after to Dr. Ahya in U. Of Penn Hospital. I am concerned that it's a couple weeks. Do I have something that they should be dealing with right away. I'll ask Dr. Kerr about that. I guess it's all up to what the "infiltration" on my upper left lung is. The Winter Olympics have started on TV from Torino, Italy. Now it's time to get ready for the storm that is coming. I want to make sure I have enough of everything I need in my house.

Thursday, February 09, 2006

I received a call from Dr. Kerr, my pulmonary doctor, that the report from my CatScan shows an "infiltration" on my upper left lung. I'm not sure what that means but he asked me to bring the xrays in to his office when I go there next Friday. He also said I should take the Xray and the report to U. Of Penn so that Dr. Ayha can look at the report and the xray. It always makes me nervous when I get news that I don't really understand. I got a knot in my stomach but I'm feeling better now. I tried looking it up on the internet but I really couldn't understand what they were talking about. I have been feeling pressure in my chest when I breath in hard. This has been happening for about a week now. I have to go to sleep early tonight. I have dialysis in the morning. Then I'll have a nice long weekend.
I can't wait to have energy again, all the time. I think that's one of the biggest complaints that I have is that I would like more energy. I feel like I have energy when I'm just sitting down but then when I get up to do something I realize that I don't. I sleep too much. The TV preachers are really getting carried away. They aren’t just asking for donations now they are asking for $1500.00. As I went through the stations with my remote there isn’t a time when I pass by Benni Hinn when he’s not asking for money to buy camera equipment or showing someone being cured from an incurable disease. I feel sorry for the people that are all caught up by him. Especially the elderly. They are actually getting old people to sign over their estates and suggesting they will be getting into heaven. There should be a way to stop them.

Wednesday, February 08, 2006

I slept all the way through dialysis this morning. That made it go very fast. I was very tired after dialysis so I just came home and slept for a couple hours. My sister picked me up a turkey sandwich and some potato salad. I ate that when I got my energy back. It takes a little while to get your energy back. They gave me Iron today so that should help me out. I left weighing my exact dry weight 53.0 kl.
I'm so bored with music. I was listening to POD. They are the cross over Christian group. They were on Jay Leno singing "When will we sing a new song...". And that's exactly what I was thinking. They music all sounds the same. We need some new blood and I wonder where it's coming from.
I'm tired of Beth Holloway.
the other day Barry Minkow was on TV talking about how he was a "genius" and a "Master mind" and that we should use his "genius" to help other corporate heads so they don't do the same thing he did. He screwed the rug business of millions. He served jail time. What makes them think they are "Master minds". They are idiots. They got caught and served time. The news is always talking about the 9/11 master minds. This would encourage others to want to be a "master mind". They have to stop calling them master minds and start calling them what they are.

Tuesday, February 07, 2006

I haven't been able to get on my blog for a couple days. There was some kind of bug that wouldn't let me on. Isn't that strange? I'm not feeling great today so I'm going to make my way over to the doctor to see what he can do. I just feel kind of bla. Maybe I'm getting a cold. I can't stop sleeping. I'm tired all the time. My dry weight has been around 116 lb and I would like to get that a little higher. I actually feel better if I'm around 118 lb. I do eat but I can't seem to gain weight. Today I'll take out a steak. Last night I had lamb chops. The night before that I had Monk Fish. I have to arrange to pick up my Xrays from the Cat Scans that I did last week. I'll get them for Dr. Kerr's appointment next Friday and then keep them for my appointment with Dr. Ahya (Transplant doctor). I also have to pick up the comments from the doctor that read the xrays. This morning I had pancakes.

Sunday, February 05, 2006

It's superbowl Sunday. I feel pretty good but my legs hurt. The top of my leg. It's very odd. I also want to talk with a doctor about my cyst on my head. I would like to get that taken care of. I would like to know if I could do something to build the strength in my arms and legs? I'm not sure about my left arm because of my fistula. I'm sure I won't be able to make it through the entire superbowl game. I'm getting tired. I've been sleeping a lot this weekend and 4:00AM comes up fast so I might go to bed early. My sister gave me corn beef sandwich for dinner. They were having a superbowl party but I'm not really into parties because I'm most comfortable at home with my oxygen. I feel better here. I ate my sandwiches at home with cream soda. It was very good. I also ate my Renagels with my dinner so I don't get a phosphorus build up.

Friday, February 03, 2006

I just got an appointment for Thursday, March 2, 2006 at the U. Of Penn Medical Center. James Mendez, MSN.CRNP helped me and I'm finally moving forward again towards a lung transplant. I'll bring my Cat Scan from here with me and I'll have a series of tests including echo Cardiogram, meet with Dr. Ahya and then do a PFT at 12:45 PM. I already arranged for transportation to bring me there. It takes about a hour and a half to get there and I don't want to get lost like I did the last time.
I have to tell them to have their phones fixed. Even the voice activation couldn't understand "Lung Transplant Department" when they ask you what department you want. There's nothing more annoying than having to repeat yourself to a recording.
I'm feeling very good today. I want to ask my pulmonary doctor about Spiriva. It might be time to add that medication but I want to check and I don't want to pile up with medications and be over medicated like I was.

Thursday, February 02, 2006

I talked with this guy named Woody today. Woody got a lung transplant about a year ago. He's over 65 and he's doing great. He said he's traveling and breathing without Oxygen. I asked him a few questions and he was very nice.
I called the U. Of Penn and asked them to please reschedule my appointment. Mica said she would call me by 5:00pm with the appointment but she didn't. I'm getting concerned about them. If they are that busy that they can't follow up with someone then maybe they are too busy. I'll call them again tomorrow.
I'm cooking myself lamb chops. Broiling them. 5 minutes on each side then an addition 2 minutes on each side. I hope they come out good.
Tell me, who really needs an omelet maker. A pan that flips the omelet! This is really stupid. I can't believe there are people that can't flip their own egg, they have to a special fying pan to do it.
I got a catscan today for Dr. Kerr and I'll pick up the xray before going to the appointment with him next Friday.
I'm just doing one main thing a day and I'm taking it easy the rest of the day. Sometimes I can feel like I'm getting a cold but I take Tylenol and I rest. I'm also trying to eat protein and force myself to eat. I don't usually feel like eating unless I have something that I really want. Today I made myself lamb chops and they were good. I had that with Cream Soda. I already took my night time medications and I'm going to go to bed early. 4:00AM comes fast.
I talked with Susan Segal today. Susan is a long time friend, a photographer and she's raising her son in Napa, California. I told her about Bill Turner. Susan told me that she talked with my brother Joe and Joe asked her for her info in case they had to call her. Susan said she was "stressed". She does get stressed easy plus she has a nine year old and I'm sure that alone could be stressful. I told her I would visit her when I get my new lungs.
Today is Ground Hog day and yes, we'll have six more weeks of winter.
I have to have the cyst on my head checked. It's making me a little nervous. Maybe they can just remove it for me.