Tuesday, March 28, 2006

I’m home and this is where I want to stay. After about four weeks in the hospital, I’m sick of that place. I got two more units of blood before I left and I’m finally getting some energy back in my legs and my body. I’m very lucky to have the doctors that I have. They were all there checking in on me and making adjustments. This time I went in with a bloody nose and then in the morning when I was going to have the pack removed from my nose I was very light headed. I didn’t know what that was about but I couldn’t even stand up. I had to go right to ER.
The first thing that happened in ER was that my heart started to beat fast and the doctor there had to first get that back in order. I just don’t understand where this is coming from and why I’m getting it but she took care of it after a while. They did give me the shot that makes you sick for 5 seconds. I got through that and I was lucky that they didn’t have to give me a shock this time.
I did my dialysis there without lidocane and it wasn’t that painful.
Today I have to arrange for my transportation to U. of Penn and then for the Sleep study on May 3rd.
I also have to start up my PT and the home health aide.I started to get to know all the nurses and that’s when you know you’ve been in the hospital too long. At Brick Medical Center they were all very nice. I had a great team of doctors and they all work together. That’s a good thing. It was nice knowing that my Renal doctor was working with my pulmonary doctor and the heart doctor was right there working with them. Each time I needed a specialist they came in and they had the benefit to read all the notes and know what was going on. I liked that they didn’t hesitate to take X-rays, give me blood, draw blood and test it. They did a great jog.
Now, I just have to move forward to my Lung Transplant. I saw another person today on TV that had a lung transplant and talked about breathing. That’s the most important thing I want…. To be able to breath again.
I’m very happy with the energy I have today. It could be from the blood transfusion, the iron and other vitamins I’m getting. What ever it is that my renal doctors are doing is working.
Today, I’ve been resting. Like I don’t rest all the time but there’s nothing like resting at home. In my own bed..
My niece Carleen just brought me over a nice lunch and a dinner. In a little while I’m going to take a shower and get a good night’s sleep. In my bed without the sounds of alarms going off or people yelling for help. Hearing “Code Blue” over the speaker system and watching everyone run. I just want to sleep with my heart rate at around 90. That would be great.

Monday, March 20, 2006

On April 24th I will return to U. of Penn Hospital to meet with the Lung Transplant doctor and continue my tests. This is a Monday so I’ll have to reschedule my dialysis but I’m sure dialysis will understand and help me do this. They know how important it is to me. I’m also going to arrange transportation so that I can bring my scooter. I remember the last time that It was very hard to get around that hospital. The scooter will make it easier for me.
My strength is gradually coming back. I’ve been walking around more and more. I have a rehab person coming here to help me. I want to get in top shape so I’m ready for the transplant when it comes.
I emailed Johnny in Italy and he will be able to come and stay with me during the procedure. It will be good to have someone living with me for a few weeks or a month, until I’m back on my feet. Johnny will be good at that because he also makes me laugh.
I just talked with Nancy, the head Transplant nurse. She’s very nice and they all seem so supportive. The transplant give me great hope to be able to do things some day. I just want to walk around without oxygen and I want to walk along the ocean.
I can’t write much now because I get tired easily. So I’ll continue a little later on.

Sunday, March 19, 2006

It’s Sunday and I’m finally back home after about 21 days in the hospital. I came home and then had to go back with the same thing. I had no energy. They gave me a blood transfusion ( 2 units) and now I’m feeling much better. I’m getting back to normal. I will just relax today and then tomorrow after dialysis I’ll start to catch up on all my bills, correspondence and phone calls. Today I’ll also email James at U of Penn so they keep me moving towards the transplant.
Last night I had a couple nose bleeds. It’s because I get very dry from the O2. I’ll ask the Community Surgical if they could bring me a moisturizer.
Fish is look good. I gave him water and food. Everyone seems to be amazed that he’s still living. I had him since November 14th. He’s a very strong fish. I’m going to get some plants for his fish bowl.
I can feel my energy coming back. I don’t know what that was all about, but it sure isn’t fun having no energy. Good thing my doctors knew what to do.
I have to take prescriptions to the pharmacy and I have to have my doctor tell me about the medications and when I should be taking them.
I think my sister is coming over this morning and bringing me some breakfast. I’m going to make some coffee and toast.

Monday, March 13, 2006

I was so excited today to see that Jim, one of my Lung Transplant nurses emailed the scheduler to get all my tests moving again. I want to get this lung and move one. It’s getting harder and harder for me to do things. I don’t have a lot of energy and can’t walk very far. As a matter of fact, I can only walk steps. I sure hope I get some energy back soon so I can at least walk.
Dr. Albanese is scheduling a Sleep Apnea test for me. They think I might have that. Once of the doctors said he was watching me and I don’t breath when I’m sleeping.
The next thing I have to do is get a lung x-ray. I have to schedule that but I’m just waiting to get the energy.
My sister, Rosemarie, was here today and brought me over some dinner. I had sword fish for lungh. Santo was here cleaning and doing the wash and a visiting nurse was here just for a few tests.
I have to lay down again.

Saturday, March 11, 2006

I’ve been in the hospital for two weeks now. I went in during dialysis. My heart rate was over 187 so they rushed me over to ER. There they gave me an electrical shock to get my heart back into the right rhythm. It worked. Then I was put into ICU for about 8 days where they monitored my heart for those days. After that they sent me over the Telefloor where they also monitored my heart for the other days. Finally I was released but very tired. They had to switch my transportation to a driver that would pick me up in a wheelchair and bring me into dialysis.
I have to call U of Penn and talk with James Mendez, RN so that I can back on the boards for a lung transplant. I’m starting to get my energy back but its taken a little while.
Denise, my niece, was here this morning and brought me over breakfast. I really needed that too. She helped me get my pills organized and threw away the trash. I’m so lucky to have my sisters and my nieces and Eric here to help me. I don’t know what I would do with out them. It’s so important to have help at home when you’re sick and I’ll really have to get it all together for the transplant. Especially the first couple weeks after the operation.
Today I want to email U. Of Penn so they know I want to keep this moving.
It’s a beautiful day out. About 65 degrees. Sunny and crisp. I’ve been resting a lot but each time after a sleep / rest I seem to have a little more energy. I hope this continues to better.
Denise will be back later on to make me Salmon dinner. I can’t wait. When I retuned to my computer after two weeks in the hospital I had over 600 messages. I’m the spam king. I wish I could figure out how to delete it all at the same time. It was a waste of time pressing “delete” for each one.
I just had to go to the phone and answer it. It was a fund raiser and I had to do all I could do to answer the phone. What a pain in the butt. I was very nice to him even though I wanted to slam the receive in his ear.
My legs are very weak from being in bed for two weeks. I’m trying to exercise them but it’s not easy. Yesterday, Dr. Albanese (Renal) gave me Antibiotic (Vencomyerson?) and told me that I didn’t feel better today to go into ER. I do feel a little better. I’m getting there. I have to have a chest x-ray and blood work. I also have to make an appointment for the heart doctor (he’s the one that wants the blood work).
The RN from the hospital was here and she’s going to work on getting me a bed, a walker and aid to make me breakfast a couple days away. That would be good.
My breathing is pretty good today. I’m using Xopenex and Spirva. They seem to be working. Xopenex seems to be best for the heart, rather than Albuterol.
Fish bowl is clean and fish is happy again.