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Patient Diary -- Marilyn Delavan
Ozdel@aol.com
Tuesday, December 7 2004
It pays to shop around for a PH doctor.........
It's been 2 years since I was dxd with severe PPH. PAP 130, PVR 17 etc. I was unable to talk because I couldn't breathe. My organs were all failing, heart, liver, kidneys, lungs. I was quite the side show for the transplant unit. I remember a nurse sitting by my bed telling me I was not going to make it through the night and the hospital would like me to sign off my organs so someone else could use them. I looked at the nurse and he melted before my eyes..he turned into a water drop and disappeared. I remember seeing the splash on the floor...good riddens to you and my organs are staying put for now. The strange thing is this nurse kept returning and I couldn't figure out how. I learned later I didn't have enough 02 in my body and was seeing things. I really thought I was thinking ok but I wasn't.( I really was being asked to sign papers for organ donations which was pretty scarey when you are so sick.) The PH doc told me to go home and get my things in order because I only had a few weeks left to live...maybe 4 maybe a few weeks more. He said I needed a double lung, heart transplant and I was too old 54, and needed to lose 30 pounds or more and I was out of time. He also said something about punching a hole in my heart and then he told me not to worry about anything...then left the room. I cried and cried and cried between my gasping for air. Then the PH nurse dropped off a copy of the PHA Survival Guide 2nd Edition and I tried to read through the pages..praying the words would not melt away and that what I read would make sense to me. Flolan kept popping up and I asked the PH doc about putting me on that. He told me I was "too sick" and my heart was too weak for flolan and the hickman surgery. Then he told me to read the book again real good about when its time to have "the talk with your doctor". I hated him. I really hated him. He would not even try. He wasn't God. I wore an oxygen bag for a few days because I needed so much and I was switched to the canula on 5 liters/24/7 with digoxin, coumadin, lasix and sent home. I had some tests when I was in the hospital but still needed to have a sleep study done. I could not believe they were wasting my time with a sleep study when I was dying. I did not have sleep apnea and the sleep study confirmed it. I had tons of triplets in my heart beats and chest pain was getting worse. I was also fainting a lot more and I lived alone. I called the PHA 800 number as soon as I got home and I cried, sobbed and blubbered about how I was just dxd with PPH and the doctor said I was dying. The volunteer that answered the phone said I was not going to die but I needed to find a PH doctor. I told her I had a PH doctor and that is what he said. She asked me his name, hospital and then came back to the phone and said his name was not on the PHA list of PH doctors. Then she gave me the scientific PH doctors names and numbers that were closer to where I lived. I called the nearest PH clinic immediately for an appt and the nurse said they only take referrals and would not give me an appt. I called back and begged and then said someone would call me next week with an appt. I got an appt but it was for 6 weeks away and I only had 4 weeks left on earth. I cried and dropped the phone. Why won't anyone help me and give me the medicine I need so desperately? I am begging for medical care and I am so scared no one is listening. I don't want to die. I want to live as long as I can. I really don't have anyone to live for, no husband that loves me, or boyfriend, my daughter doesn't like me but I have this strong will to survive for some reason. I fainted and was out for a longer time. I woke up in a pool of blood in my hall by the bedroom. My nose was broken, smashed, and there were cuts all over my face. It was 4 AM. I tried to call my daughter but her phone was turned off. I cried. I did not want to call 911 because I just did not want to believe I was this sick...I was always healthy. Perfect attendance all through school and work and never had too many colds. I called the operator and she called 911. Then the firemen EMS were ringing the doorbell and pounding and I had no idea how I was going to answer the door....so I laid on the floor and pushed myself until I got there. It sounded like they were going to break the door down to get into the house. EMS took me to the local ER and I told them I had PPH. They xrayed my face and found multiple nose fractures but no bleeding from the coumadin. Thank God. The rest of my body was badly bruised from the fall when I passed out. I called the PH nurse at the clinic to see if they could see me sooner and she said I needed to have a RHC first. They did not like the other heart cath I had done. My appt for a RHC was not for another 6 weeks...I will certainly be dead by then and no one seems to care. So I called the RHC clinic and asked for an earlier date and praise God I got one for the next day. I went and this angel of a doctor said I had severe PPH and was starting me on flolan ASAP and was admitted to the hospital.I kept asking him if I was going to die and he said not today and once you get on flolan you should start feeling better. I was so happy...I cried tears of joy. He told me I had a good cardiac output for someone that was so sick and for so long and he held my hand and told me all will be well. The PH doc was on vacation and so was the entire clinic staff so this wonderful cardiologist was my doctor for a few days. I felt instant wellness as soon as the flolan IV was started. I could breathe, walk and I even took a shower in the hospital. It was a miracle. The new PPH doc was back from vacation and stopped by to see me in the hospital. I don't remember too much. He was there with the PH nurse and they looked at my ankles and left. Since I was doing so well on the flolan the doctor was sending me home...only I didn't have a ride home on they day they wanted me discharged so I was sent home in a taxi cab with my boxes of flolan supplies. I was so tired I kept falling alseep in the cab. I was so happy to finally have the medicine I so badly needed. I don't ever want to go through anything like that again. The PH doctor told me I could not be alone now. That I needed to have someone in the house with me to help me with my medicine and cooking, etc. There wasn't anyone to help. I was all alone. He just put his head down and walked away as if to say it won't work. The Flolan nurses came to my house to show me how to mix the medicine. They insisted I have a caretaker to learn the procedure. I told them there is no one just me. My daughter refuses to have anything to do with this. I was terrified the first few days that I would never remember what to do. My brain was empty from lack of 02 and my memory was shot. I said a lot of hail mary's and demanded the nurses come to my home until I can do this blind folded. It took about 10 days and then it clicked...I was making flolan. I was so happy I was crying...again. I went back to the PH clinic for my 6 week check up after starting on flolan and the doctor was smiling. They were calling me the poster child for flolan. He removed my oxygen canula and told me to walk up and down the hall....I was afraid to walk without the 02, for fear I would faint, chest pains and nothing happened...I was fine and I didn't need the 02 anymore. What a miracle from lung failure to 100% back in business. That was in 2 years ago. Today I am still on flolan and viagra trials. No 02 and my hallwalks are over 500 meters...1700-1800 feet. I live alone and take care of myself just fine...much to the complete surprize of the PH clinic. I am use to living alone so maybe that makes a difference, I don't know. I am looking for a part time job because I can't get SSD, don't have enough work credits in the past 10 years. I say my hail marys all the time and thank God for every second I am here on earth. My daughter is expecting a baby this Feb 2005 and I am so exited about being a grandmother of a baby girl. I keep praying my daughter will like me again. I really don't know why she feels the way she does but it is very upsetting and it hurts a lot. I have asked her but she says she does not want to talk about it. Sometimes I feel like she is mad because I didn't die when I was first dxd. Oops I have had a few more close calls during the last 2 years. My thyroid went beserk and heart racing and flip flopping and pulse of 150 plus were daily problems.I have learned to take myself to the ER at the PH hospital when it gets out of control and it seems like the docs aren't listening to me. Again the PH doc was surprized my heart was ok after this trying ordeal. I haven't had any line infections (knock on wood). My line did fall out a couple of times and I shoved it back in. Which I was told is a huge no no. So if it happens again I will go to ER and not put it back in. I also have had problems in the past few months with ulcerative colitis and that is no fun. I am praying again that I can go into remission with this disease and have maintenace drugs keep me going. Now I have 2 disability diseases, PPH and colitis and life goes on. My biggest concentration is on that new baby this is due in Feb 2005 and I pray that she is healthy, loved and happy. I know this grandma just loves her to pieces already. If there is one thing that I have learned from the medical profession when you have a terminal illness it really does pay to shop around for some one with the most experience and like someone once told me on the PHCentral post...keep going until you find a PH doctor that works and why not get the best...we deserve it.
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Sunday, December 19 2004
No one gets out of here alive......
I remember taking a college class called The Nature of Man (Woman too) and our assignment for the semester was to decide if our life on earth was all in the hands of fate or do we actually have control over what happens to us in sickness, health, wealth, accidents. etc.,remember this was back in the dinasaur days of the 1970's before, computers, gene therapy, cell phones and viagra. I was young and healthy and just assumed that I had control over my health and that is why I was healthy and if you were sick it was because you did it to yourself (ouch). When I was told I had severe PPH I was guilt ridden with what ifs. What if I had been diagnosed earlier would I live longer? Why didn't I realize it was my heart when the quack I was going to for 3 years said my heart was HUGE and it would never go back to a normal size...what if I had gone to a cardiologist then..maybe I would live longer. I told him I wanted to see a cardiologist and he said I didn't need one...what if I had fought him and gone to see one anyone. What if I would have been thinking straight in the first place. Yikes. I have quit beating myself up over what if's and decided what ever happens-happens. I am still here regardless of all the crappy medical neglect-treatment I got from doctors who thought there was no treatment for PH and just let me lanquish until the end and did not tell me I had PH either. I hate them all but don't have time to waste on them either. I had a friend who always had the best doctors, treatment, and care and she died inspite of it...when its your time..its your time no matter who is taking care of you. My dad use to say to me .."You want to make God laugh?"....tell Him your plans and his other favorite was "no one gets out of here alive"'.
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