 Patient Diary -- Lora Mausling
Monday, January 21 2002
This is my first entry. Where to start. I guess I need to start about a year before I found out that I had PPH.
I had seperated from my husband in Oct 98. I was desevasted to say the least. We were very happy together, or so I thought. We never argued or fought about anything. He was very affectionate to me all the time. I was very much in love with my husband. Everyone thought we had a great marriage. Then one saturday evening he said he needed to get some air. Said he would be gone a couple of hours. Well he was gone ovenight and I was a mess. I thought someone did something to him. Was just getting ready to fill out a missing persons report and he came home. Just said he needed some time away. That it was no big deal. First thing I thought of was he was having an affair. My mother thought I was crazy. Things were pretty tense that week between us. I was very upset. The next weekend he beat me up in front of our children. Knocked pictures off the wall. He left again and was gone over night. He came back the next morning and my mother was there. I told him he had to pack this personal things and get out. That is what he did. He was having an affair and he moved in with the lady he was having an affair with.
Shortly after he moved out him and his new girlfriend tried to kidnap my son. Who wasnt yet 2 at the time. I had my son in one arm and fighting them off with the other. My daughter called the police. They couldnt do anything to his dad cause we had not filed for divorce yet. But her on the other had I could file a complaint. So I did. She was just to stay away from me and not to come to my house again. This kind of stuff went on for almost a year. As you can see I was under some major stress.
My PH doc explained it to me that we have all this extra space in our lungs. That we have to use up that extra before we show any symothoms. That the amount of stress I was under is what caused me to start having my sympthoms.
It was the Saturday before Labor Day 99. I got up that morning with a very bad headache and major fatigue. Was having a little trouble breathing. I thought I was coming down with the flu. It carried over into Sunday and Monday. It just would not go away. Went back to work on Tues morning. Still have the same sympthoms. At the time I had been working60 hrs a week since June. As the day progressed my breathing was getting worse. I thought it was just from me being so tired. I had been at work about 12 hours that day. I got to where I couldnt walk ten feet without having to sit down and rest. I told them I was leaving. Since it was after business hours once I went out the front door I couldnt get back in. I barly made it to the car. I could not breath. I thought I was going to pass out. I work for a trucking co. The only way in is through the docks. There was no way I could walk back to the docs. So I decided to drive myself to after care. The company I worked for was out in the country. It was seven miles to after care.
I got myself there. At first they thought I was a diabetic. They ruled that out and did an ekg. They told me that I had had a slight heart attack and had called the ambulance to take me to the hospital. I was scared to death.
The took me to the hopsital and gave me nitro. That helped the chest pains but I was still having a lot of trouble breathing. They did an echo and seen my right side of my heart was enlarged. Went through a series of pulmonary funtion tests. All of this was done the next day in the hospital. My local MD doc told me I could go home if I took it easy. That she was calling in a pulmonary specialist. I was not allowed to return to work that week. Rest only. I seen him the next week. The first thing he said was that I had Pulmonary Hypertension. My mother was with me. We asked him to explain that to us. He said if I didnt have treatment soon I was going to die. First thing he wanted was a heart cath. We had decided to get a second opinion first. We went to see another pulmonary doc in Cincinnati. He said the same thing. Went back to the original doc and told him to set up the heart cath. By this time it was about the middle of Oct. Went to Columbus for the heart cath. They did a right and left side. The left side of my heart was in excellent condition. The right side was enlarged and my PAP was 110. This doc said he had never seen pressure that high before. This was on a Wed. that same Friday I get a call from the pulmonary doc telling me I need to go to the Cleveland Clinic. I thought I was a dead woman. Whenever you hear of someone going to the Cleveland Clinic you know that it is very serious. I had to be in Cleveland on Tuesday and to expect to stay there at least 4 days.
We went to Cleveland and met DR Schilz and Kathy Hague. They were wonderful. Went through all the tesing again. Including the heart cath. After the heart cath I started UT15. Had to stay in the hospital overnight and until I learned how to do my medicine and work my pump. I got to go home the next day. My life was changed forever. I had a lot of the side effects especially at the site. Just to get up and walk was painful or to turn over in bed was. I went back to work. In about a week I noticed that my breathing was starting to get better. At this time we didnt know if I was on the medicine or the plcebo. I knew I was on the medicine. I was responding so well. Had to go back for another heart cath in Jan00 at the end of my 12 study. My pressure went down from 110 to 80. My doc was very surprised. so was I. I have continued to do very well witht the UT15. Im wanting to go on the Tracleer if they will let me. When I first started UT15 I was a high stage III now im down to a Stage II. I still have my good days and bad days. I had to stop working and went on SSD. Now I am going back to college. Just started this month. Its going well so far. I just thank God for giving all the docs and nurse the knowledge to learn about this illness and able to help us all. Everyone take care.
Lora
Sunday, February 3 2002
I went to Cleveland Clinic for my yearly RHC this past friday. Everything went really well. My PAP pressure has come down more. Last year my pressure was at 59 im down to 42 this year. That was great news. Everything else looks good too. My doctor has left the Cleveland Clinic. UT15 is to be approved this week. Once it is approved I can go to any pulmonary specialist that I want to go to. Im looking at going to OSU. It is only about an hour from me. So ill just have to keep my fingers crossed that the UT15 is approved this week.
Monday, September 8 2003
Being A Long Time
It has been a long time since I have put anything in my diary page.
I am doing well on the Remodulin. It has helped me a great deal. Saturday was my 4 yr anniversary of being dx with PPH.
I got married last October. He is a wonderful man and father. He is in the process of adopting my son. He knew I was sick before he married me and still wanted to marry me. What a wonderful man.
I have been busy with volunteering at my sons school. My daughter is 16 yrs old now and learning to drive. She has had her permit for a few weeks now. So this is an adventure. Those of you who have not yet had the pleasure of a new driver just wait your turn is coming.
Last week we found out that now I also have diabetes. So this is just something else to deal with with the PH. Ive had some trouble accepting this. I know that there are going to have to be changes. What is life without changes?
Saturday, September 27 2003
Coping with Pain....Physical and Mental
Learning to cope with pain wheter it be physical or mental pain can be very hard to do.
Let me first talk about physical pain. I have been on Remodulin for almost four years now.
In dealing with the site pain. My site pain has not been that bad until last week. I was able to manage my pain and not have much pain at all. I was one of the lucky ones. Then last Sunday all of that changed. I had to change my sites three times in one day. I was in so much pain. I could not do anything at all. I was in bed most of the time. Last Sunday and Monday I was in so much pain that I just wanted to give up. I even told my husband that I was giving up and going to go on Flolan. I tried everything I had for the site pain and nothing seemed to help me.
My husband was so worried and upset cause he couldnt do anything for me for the pain. I had used up all of my good sites and every site was bruised or had knots and a lot of redness and pain. I had used my last good site and thought if this site will work long enough for the other sites to heal that I would be okay. Well a few hours later I got in the shower. After getting out of the shower I discovered that that site had come out while I was in the shower. I was very upset. I did not have another site to go to. I knew I was going to have to use a new site. I have heard from others that the hip area was a good area. So I didnt have a choice but to use the hip area then. Well it isnt that bad in the hip area. Hoping that this site will not get too bad until my other sites can heal up.
Then there is the mental pain of dealing with an illness with no cure. When I was first told that I had PH I had no idea what the doctors were talking about. I thought that they would give me a pill and I would be fine. As a mother of a two and twelve yr old at the time I was scared. I kept questioning God and asking him why me. Well why not me. What makes me better than anyone else to not get this illness. When the doctor first told us that I had PH and was telling us what we had to do I didnt hear a word he was saying. I remember my mother asking him what would happen if I didnt take the medicine. He said that someone would find me dead. Boy oh boy was I scared. I was 35 yrs old and a single mom of two kids. I prayed and told God if I had to deal with this illness that I could not do it alone. My father and stepmom were my biggest supporters. Having a support system is so very important in dealing with a life threatening illness. I have learned to take each day one at a time. Yes I still have those days that I feel sorry for myself and sit and cry. Now I am having more good days. There will always be the pain of dealing with this illness whether it be the physical pain that I have to deal with or the mental pain of dealing with PH.
For me trusting in God and letting him have control of my life has helped me in dealing with all of this. Having a great husband and family support system helps in so many ways also. I will continue to just take one day at a time.
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