I Love You

“I love you,” Brian said for the first time in August 1969. They are the sweetest words he has ever said to me, other than “I do.” Not a day has passed since that first time that Brian hasn’t said those sweet words to me. Now, with his Alzheimer’s he says them at least ten times a day. I get him his breakfast and he tells me “thank you, I love you.” I help him with his shower and he tells me “thank you, I love you.” I help him with his clothes and he thanks me and tells me he loves me. I help him in the bathroom and he tells me thank you and he loves me. I get him a drink and he thanks me and tells me he loves me. I never tire of hearing those words, “I love you.” It is the last thing we say to each other at night. Almost daily we see signs of Brian’s Alzheimer’s progressing....I dread the day I don’t hear those sweet words any more.

Loved

If what had happened to me last week had happened to Brian, I would have been furious. I would have made sure that the correct things were done as needed. But I found out, when it comes to me, I am not vocal enough...thank heaven’s for Kim and Wayne. Kim got mad for me and did everything she could to help me to get the care I needed. I think everyone needs an advocate. I am Brian’s, and Kim and Wayne are both of our advocates. Kim and Wayne spent a lot of time this summer learning all they could about our healthcare, giving us much needed support and learning how to take over my remodulin and cath treatment should it be necessary. My sister, Linda, sat and learned about my remodulin and cath treatment too. Kim kept me in candy bars and Linda kept me in chocolate milkshakes during my ICU stay. Kevin took care of Brian each day while Kim and Wayne worked, since he works nights. The visits, calls and support I got from family and friends are so appreciated. You love me, You really love me! (Sally Field winning an oscar for Norma Rae). I am sorry nothing bad has happened to you so that you could find out how much you are loved by your family and friends. I guess I am the lucky one, in so many ways!

The Rest of the Story

While we were waiting for the x-ray, I convinced the nurse to call ICU and see if one of my nurses was working. She got Deedee (one of my favorite nurses) who explained to her the seriousness of the situation. After getting the x-ray, the ER Doc finally called my doctor who was not happy since by that time, the drug was out of my system. I didn’t see that ER Doc again. It was decided that I had to stay in the hospital until I could get another cath put in and start the remodulin all over again. Being that I was on coumadin, (blood thinner) I couldn’t have the surgery ‘til Monday or probably Tuesday, since it was a holiday weekend. I was given Vitamin K over the weekend to counter-act the coumadin and a specialist was called to come in on Monday’s holiday, to do the surgery. I was not happy to have to have the cath put back in since it wasn’t fun the first time. A father and son team do this surgery for Kaiser North and the first time I had the father do it. The second time the son put it in. His team was wonderful. I explained the pain I had had the first time and he said that they usually use the lowest amount of anesthesia possible and increase it if necessary. I told him that if I became extremely witty, as opposed to witless, then he needed to increase the dose. So he started with a higher dose and everything went much better (although I still can’t play the piano). After that, it was off to the ICU and I started back on Remodulin that afternoon as if I hadn’t been on it at all. I was feeling better on Thursday and came home. Now I keep a couple of loops on my catheter to allow for more give if the cath is accidentally pulled (yes, you may call me Loopy).
I should have died....if I hadn’t just started on the medication and was on a low dose, I would not be writing right now....I was lucky...and we learned what we need to know should something happen again. I have names and numbers to write letters regarding my treatment. I have a way to get hold of my Dr. in an emergency. There is a note posted on my file that says to call him if I have problems with my cath or Remodulin as well. Sometimes you have to learn things the hard way...Luckily the end result is good.
Thank you for all of you who kept me in your thoughts and prayers. Life would not be so precious but for the love of family and friends. And that is the rest of the story.

More of the Story

In the Kaiser ER, the on-call Doc refused to call my pulmonary specialist. He said he could figure out the problem himself. Only about 2 or 3 people per year are on this protocol with Kaiser Northern Calif. and so very few people understand what to do. And even if they know protocol with a chest cath, my case is different because it is a lifetime therapy, given 24 hours a day, 7 days a week. Interruption will be life threatening. The ER Doc went into his office to look up the drug. When he came back to my room, he again refused to call my Dr. saying that he didn’t know if he was even available. I told him that he would be available for this. Kim took my cell phone outside to call my Dr’s. office but only got the after hours recording. Meanwhile, the ER Doc decided to wait and get a chest x-ray to see if any tubing was left in my chest. X-rays take a while in the ER....The nurse decided to take out my stitches where the cath had entered my chest. I told her not to remove them, that special care had to be taken with the site. The ER Doc agreed with her, tho and so she swabbed it once with alcohol and removed the stitches (she did put a temp dressing on it). This was after I had spent the past 3 weeks being trained to clean my work area with alcohol; I can’t have a fan in the area as it may blow bacteria around; wash with liquid antiseptic cleaner for at least 2 minutes; dry with paper towels, (hand towels can carry bacteria); putting on first one glove and then a special way of putting on the second so as to not disturb the sterility of the gloves; using a mask; using 6 different swabsticks on the area, in a circle from the insertion site out, never returning to the center with the same swabstick; letting each dry, do not blow or fan on it (bacteria); skin protectant; antibacterial dressing; and the final transparent dressing. Even with such strict precautions, infections can occur and those are life threatening.. You become very protective when your life can be literally held in your hands. And this doesn’t include what is involved with mixing the Remodulin, and the sterilizing techniques and priming involved with the drug that actually enters my body. It is a time consuming process. The good news is that if I screw up, the only one I will endanger will be myself. More of the story tomorrow....

Long Night

I have been to Kaiser 42 days out of the last 58 days. I had eye surgery on July 13th resulting in multiple trips to South Sac Kaiser for follow-up. Then I had my chest catheter put in August 12 and have been to Morse Kaiser every day for flushing it with saline and Heperin. Then the past eleven days were spent in the hospital. After I had my cath put in, I wasn’t able to get a room in ICU until July 31 to get started on Remodulin. Other than a bad headache and nausea, it went pretty well. I got out of the hospital on Friday, September 4th in the afternoon. Around midnight, I was back in the ER. My cath had come completely out, without my feeling it. I had been having problems with the loop that gives it extra room in case the cath accidently gets pulled. I think it just worked itself out or having the strap from the holder across my chest pulled on it. I was sitting and when I stood, it hit the floor. Protocol is to call 911 to get an IV started in my arm and get the medicine flowing again, then get to Kaiser ER to fix the problem. Kim called 911 and after taking almost 30 minutes getting here, they refused to start an IV. I gave them paperwork authorizing them to do it and they still refused. I had them call the Accredo nurse who tracks me. The paramedic hung up from Accredo saying that “no nurse was going to tell him what to do.” Finally, Kim and I decided to let them take me to Kaiser rather than waste time arguing. Kim beat me to the hospital by 5 minutes, and I was in an ambulance! I tried to explain to the paramedics on the way that I only had a certain time frame and then my heart would stop. They told me that if my heart stopped, they had procedures to take care of it. They couldn’t prevent it from happening, but if it did they had the paddles. But, no procedure is going to get my heart going again when the remodulin runs dry. The drug is my lifeline. This was the start of a very long night. More of the story tomorrow....

The Top Ten things I learned from being in the hospital

There are worse things than getting an enema...Having your roommate get an enema for one.

Close the toilet lid before reaching over to wash your hands especially if your gown’s hem falls around your knees.

Cleanliness in a hospital is only as good as it’s housekeeping department.

Some people are not meant to be nurses.

Some people are not meant to be doctors.

ICU nurses are worth their weight in Remodulin (which is more expensive per oz than gold).

John F. Kennedy isn’t dead. His pleasure was to provide me with meals that met my specific dietary needs.

Stryker doesn’t just make an autopsy saw, they make beds too. They have you covered from start to finish.

Patients and their caregivers may know more about their disease process and the care necessary to sustain them than some health care professionals.

Time is critical. Sometimes just minutes mean life or death.

Remodulin

Well, my doctor is back and I go into the ICU at Roseville Kaiser on Monday to start the Remodulin. I may be pretty sick the first few days until we get my dosage adjusted. The nurse with Acreedo, the company who supplies Remodulin came over last night. She went over how to prepare the drug for infusion and how to change and clean my line. She was excellent in her explanations. It takes some time and strict adherence to cleanliness and sterility. Kim and Wayne sat with me through the lesson so that they understand what is involved in case I need help. They are so supportive of Brian and I, going to support groups and learning what they can to help us. We could not be going through this without their help. It is scary knowing I am going to go into the hospital only to get sick, when most times you go in to get better. The end result will hopefully enable me to breathe better. Sometimes you have to take the bad with the good and this is one of those times. I am happy to be going on Remodulin instead of Flolan which is twice as much work and has to be kept on ice. You know me, I love the heat and carrying an ice pack 24/7 isn’t my idea of cool. So next time you see me, I will be the one with the oxygen tank on one side and the Remodulin pump on the other. I will have to accessorize accordingly!