Catheter probllems

When I left the hospital on Wed. I was given a number to call on Thursday. My dressing had seeped on Wed. night so at least I knew that had to be changed, but I was not given instructions how to do this, nor was I given supplies to do so. I called the number yesterday, (Thurs.) and the infusion department did not have a record of me or orders for me. I called my Dr.’s office, knowing he was out of town, but left a message for his assistant. I did this several times. After several more calls, I got the assistance of someone in the infusion department. She said she had left a message for my doctor earlier but she would see what she could do for me. I never received another call. Today, I decided I had better just go to the hospital to go to my Dr.’s office and see if I could get helped in person. If they couldn’t help, then I planned on going to the ER and staying there until something was done. I was not given blood thinner meds to stop any clotting in my tube and no instructions on its care. A catheter of this kind has risks of infection, blood clots and sepis.....When I got to my Dr.’s office, his assistant said he had left a message with the on call doctor. Apparently he had gotten my messages but didn’t let me know. It took about two hours, but he managed to get me some help in the infusion clinic. Course, he didn’t tell me that until after waiting for a while, I asked him what was going on. (He needs some lessons in communication!) My Doctor will not be back in the office until Wed. The infusion department flushed out my catheter with saline and heparin, an anticoagulant. Then they changed my dressing and scheduled me to come every day around 3pm to do the same again. They said they would cover me until Wed. when my doctor will be back. Their supervisor said they needed to do so to legally cover the hospital’s butt.... I was surprised they said that in front of me but I think they were shocked that I had been left high and dry after such a procedure. Apparently, my doctor had left orders for me to get the catheter put in. The department who does that had an opening and put me in at that time, hence the short notice. After it was placed, there were no further orders so no one knew what to do. The infusion department mostly works with cancer patients and does not deal with my kind of catheter. I think one of the problems is the nurses do not see this type of catheter too often. In fact, I was told that the 3 nurses who helped me today would be gone this weekend and I needed to explain my type of catheter to whomever is working this weekend. They said they were just covering me until my doctor gets back and I won’t be seeing them when he does. I think the other problem was the assistant did not follow up with me or with the on call doctor. I think he just assumed I was taken care of. And you know what happens when we assume....we make an ass of ourselves. Anyway, I think I will be in the ICU the end of next week getting my medication started. In the meantime, you can catch me at the hospital every day around 3 pm.

Catheter

I received a call yesterday afternoon to get my catheter put into my chest today. It was an experience that I don’t want to repeat as it is painfully uncomfortable. But the team were so nice and tried to make me as comfortable as possible. I have a tunnel catheter that comes out above my left breast. The tube goes inside up my neck and then down into my juggler vein. Tonite it is pretty sore. I have to call my Dr. tomorrow and I imagine I will go into the hospital soon to start the med, remodulin. The food and drug administration approved a inhalation form of the drug this past week but the drug won’t be available for a few months. My dr. didn’t think I could wait for it since when I saw him it was still going through the approval process. Tomorrow we are checking out a program through Sutter that may work for Brian, for in-home care, meds, drs. and everything he would need. I have great hopes that we can get involved in this program. They would be on top of any new meds that may work for him. He is doing ok. He can still laugh and joke with me. I am worried about him when I go into the hospital since he depends on me so much and is scared when I am not around. Four days could be a long time for him. But he can come and spend the day with me in my room and will have family around to care for him. I just like to keep him happy and not worried.

Friday I saw my pulmonary Doctor in the morning and my Rheumy in the afternoon. I am going to go on the IV medication, Remodulin. It is one of the medications delivered by a continuous infusion, meaning the drug is delivered steadily to the patient through a small pump outside of the body into a permanent catheter intravenously in my chest. I am still going to be taking the Letaris and the Rovatio (a pill containing the active ingredient in Viagra), in addition to this new drug. Romodulin costs about $100,000 per year, in addition to my other drugs including the Letaris which costs $60,000. At some point you have to say how much is a person worth and these orphan drugs are way too expensive! I would like to think I am worth $200,000 a year, but the government doesn’t think so since they don’t pay me that much in social security....The bionic man was worth 6 million and that was in 1974. I guess I am small potatoes compared to him...but then I am not saving the world....
In order to improve the flow of Remodulin, I will also begin taking Coumadin, a blood thinner. REMODULIN is a type of medication called a prostacyclin analog. It acts similarly to the prostacyclin that is found naturally in the human body, which helps keep the blood vessels open and working properly. Prostacyclin medications work by opening the blood vessels and may reduce the buildup of cells around the blood vessel walls. Blood returning to the lungs is pumped through the lungs by the right ventricle of the heart. Blood pressure in the lungs is ordinarily rather low, for example 20/10, in contrast to body blood pressure which is usually around 110/70.Resistance to blood flow through the lungs puts a strain on the right ventricle. At early stages, the right ventricle is able to compensate but as the resistance increases and the pressures go higher, the right ventricle cannot keep up. At early stages, shortness of breath occurs with moderate physical activity but as it worsens, it takes less and less physical activity to cause shortness of breath.
The pressure in the lungs can be elevated for several different reasons in scleroderma. The left ventricle can become stiff or weakened, leading to back pressure into the lungs. This is called heart failure. The distinctive problem in scleroderma is narrowing of the small lung arteries from progressive scarring of the inner lining of the small artery which is what is happening to me.
I won’t start on the drug until probably September. I have to have the catheter put in and there is a lot of paperwork for that and to get the Remodulin...when I am finally put on the drug, I have to be in the hospital for 4 or 5 days to make sure I can take it ok and I am trained in the care and use of it. This is the one drug that is stable at room temp so I won't have to carry an ice pack with me in addition to my oxygen and the drug pack.
So, I know what my plans are for the rest of the summer...What are yours?

Will You Still Love Me?

“Will you still love me if I forget your name or who you are?”
“I would be sad, but I would still love you.”
“Will you still love me if I wander from home and forget where I am?”
“I would be worried, but I would still love you.”
“Will you still love me if I forget day or month it is?”
“I would tell you it is a beautiful day and I would still love you.”
“Will you still love me if I cannot dress myself or brush my teeth?”
“I will help you to dress and to brush your teeth and I would still love you.”
“Will you still love me when I am angry or depressed because I don’t understand what is happening to me?”
“I will understand, and I will still love you”
“Will you still love me when I cannot take care of my family? “
“I will take care of our family for you and I will still love you.”
“Will you still love me when I cannot taste your wonderful cooking?”
“I will continue to cook special foods for you and I will still love you.”
“Will you still love me when I cannot remember our wonderful life together?”
“I will tell you about our wonderful life together and I will still love you.”
“Will you still love me when I cannot walk?”
“I will carry you and I will still love you.”
“Will you still love me when I cannot sit?”
“I will hold you and I will still love you.”
“Will you still love me when I cannot smile at you?”
“I will smile for you and I will still love you.”
“Will you still love me if I don’t know the words to say I love you,?”
“I would be very, very sad, but I would love you more!

Dog days of summer

I love the summer and the heat. With Raynauds, I have an aversion to cold, cool, and lukewarm. And I love the sun. I hate rainy days as they make me depressed. The sun just makes me happy. Brian is happy to sit outside with me until it gets too hot. Kim and Wayne have such a nice backyard and deck that it is always calling to me. My vegees are doing great, tho I have only had one red tomato so far. I have a ton of green tomatoes and they will probably all turn red at once. Summer and home grown tomatoes....nothing better....and watching Kim and Jenny decorate a Christmas tree in the middle of July. Jenny’s Harry Potter party is next weekend. We see the movie and then party. The theme is Christmas time in pinks, lime green and aqua. Love the dog days of summer!

Time

Wayne and Kim and I are on a quest for information. If something should happen to me tomorrow and I needed my oxygen, Kim and Wayne don’t know how to use my oxygen tank. So I am writing down all the info I can for “in case of” and we are searching for other available help for Brian and I. Kim and Wayne go back to school the middle of next month. I may need some help for myself and for Brian soon, especially when I have doctor appointments. So we are finding out what community services are available to us. It has been almost a year since I was diagnosed with Pulmonary arterial hypertension. My doctor and I knew I had it before my heart cath but I put off the cath as long as I could. My DLCO on my pulmonary function tests a week a go is down, consistant with the prognosis for my pulmonary hypertension. I have used up almost a year of my time already. Time flies when you are having fun! So we are trying to get things in place for the care and help we will need in our future.
I have no problem talking about myself and my prognosis and what I will need. But it is so heart breaking to talk about Brian, my love and my soul mate. I had figured I would take care of him to the end of his disease process but that probably will not be a reality for me. I promised him I would take care of him. He is able to deal with Alzheimer’s because he knows I will take care of him. I pray for a cure or a treatment that stops the Alzheimer’s process for Brian. And I pray for time so I can take care of him.

Anniversary

Brian and I celebrate our 38th anniversary this Friday, June 19th. As always, it amazes me that we have been married that long, twice as long as I was single. It amazes me that we knew what love was when we married as we were such young kids with no experience outside of our families. It amazes me that our love has endured for all these years. I think waiting five years to have kids helped us to establish a life together and to fully explore our love for each other. We have always made our marriage a priority, much to Kevin’s amazement that we would want to spend time alone, away from him. He would call his Nana if we were going away and complain and then stay with her and Papa and be spoiled all weekend. Wendy was happy to see us go; I guess she threw the best parties then!
When we were married, videos were an unknown. We tape recorded our vows and somewhere in storage is that tape albeit damaged by now. Cellphones were unknown as well and 8 tracks were in vogue. We bought a huge stereo with 8 trak cabinet only to have 8 traks phase away two years later. We also bought a beta which has the same history as the 8 trak. The first time we got HBO was amazing to us too. No commercials! Whodathought? Lamaze was big...it had to be thought up by a man...giving birth, no drugs...what were we thinking? And I did it again! We saw Elvis in Tahoe the year before he died. I had tried for 3 years to get tickets and finally got tickets for Kim and Wayne and Brian and I. Brian loved Elvis and his music and has been so happy to have seen him live. Rabbit ears were the norm and with aluminum foil and rabbit ears, you could get any of the three big alphabet channels, (abc...) You could buy a car for $3000 brand new! And your payments would be less than $100 per month. Our first apartment only cost us $99 a month and our first house was $235 a month AND IT HAD CENTRAL AIR!! A McDonald’s lunch was under a dollar too, including fries and drink. Microwaves were unheard of and dinner had to be planned in the morning so the meat would be defrosted by dinner time. You had to defrost the freezer once a month and make your own ice. Tap water was all that was available and a drive-in movie in the summer time was the best fun!
Ah, time flies!