Patient Diary -- Susan Jacobson
Saturday, November 15 2008
My Trip to Salt Lake
Hi everybody -- It's been great at the Salt Lake VA Hospital. I saw the PH specialist first, (2), then cardiologists (3). 10 vials of blood, arterial blood gasses, passed out during spirometry, had a right heart cath. Got a new CPAP with automatic pressures and increased oxygen to 4 liters at night. Bottom line: I was in acute heart failure. My former doctors were undertreating my diastolic dysfunction and congestive heart failure enough -- same with my lung problems. The new doctors promise to work harder at finding out just what is causing my PH so they can treat it appropriately. I felt so fortunate -- about 4 hours with the lung specialists, 2 hrs with the cardiologists and 3 hours with the nurse practitioner, who also gave me a new automatic blood pressure cuff. On travel: The airlines (United and Delta), were great -- they had oxygen waiting and were prepared for my flights. I didn't have to call oxygen desks and argue with anyone. They boarded me first, then had wheel chairs waiting for me to go to the next gates. They were all very nice and accommodating. I did not have the oxygen promised on my two Denver layovers like my VA letter said I would. I had to argue with the DIA assistance desk, show my letter, call my home oxygen company -- no one had my order. Finally the guy gave me a tank on the first layover. Going home -- not so fortunate. The guy at the same desk said, "Go to your airlines -- I have nothing to do with that." I tried to show him my letter from the VA saying I would have oxygen for the layover and he would not even look at it. He had oxygen tanks behind him but would not dispense one. I called the company supposedly responsible for the layover oxygen (Roth, Brighton); (yes, I'll name names), and they said to go to the DIA assistance desk. I told they guy it was about 3/4 mile from my gate -- would he call them and have them bring me the oxygen -- "No way." "Check with your ticket agent. The Roth Brighton guy called back and said he could meet me outside the airport at the arrival gate -- I told him I could not do it. At first he me to go to the ticket agent. There is no ticket agent here -- this layover is like, 5 hours. Then he said, again, go back to the DIA desk. I told him no way -- 3/4 mile away, and I'm not dealing with the idiot that says he has nothing to do with it unless he calls him first. He says he can't call because he does not have the phone number. I ask him if he has directory assistance and he says no. So ultimately told him, "forget it." So much for layover oxygen. My O2 sats are ok for the moment -- but I am going to insist on a portable concentrator next time. Lodging: The hospital Hoptel was great -- they had a room with oxygen and a patient dining room I could go for meals, as well as a few coffee shops. I stayed in a ward room the first night, because the "reservation" for the Hoptel somehow didn't go through and all they had was a room without oxygen. But everything worked out great that way. Mrs. Astor is green with envy. She is not "tricked out" or "Pimped" yet -- and she saw one Vietname Vet GI's rig -- 2 orange and 2 USA flags. Bell bicycle lights on each arm, cup holder, oxygen tank holder, horn that played songs -- you name it and this guy's got it. Rest assured Mrs. Astor will be better prepared for the followup appointments in late February! Happy ending: I feel better already. The increased oxygen and CPAP pressures must have dropped my pressures a bit -- from 45 to 32. Also, my heart feels more relaxed, and I feel like I finally have some competent doctors. I got to see my baby sister, and R.N., Capt. in the Air Force reserves, since she flew out just to be with me. We had a good visit and she was a big help to me in the hospital. We also saw the "Bodyworks" exhibit -- If it comes to your area, go see it! It's anatomy like you haven't seen before -- real human bodies in plastic and various parts featured, internal structures and such. Fascinating. Happy ending II: 303 342 0400 I guess the guy from the oxygen company felt guilty ---- He did arrange for the DIA assistance desk to deliver it to me after I called the number above that he gave me. So in case any of you need this number in the future --- there it is! DIA guy asked how to recognize me -- "I'm the one with my fingers turning blue!" Take care, everybody, and be difficult when you need to. Susan
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Wednesday, October 22 2008
Going to Salt Lake
I wrote a great post, if I do say so myself, and lost it while looking for my picture of Mrs. Astor. She is one Righteous Rollator, and I plan to trick her out with a horn, flags, a cup holder, turn signals, a light, her name in sparkles, you name it! The VA is arranging transport for me from Helena, MT to Salt Lake and I have appointments in pulmonology and cardiology November 12th and 13th. My hope for the visit is that they will do the right heart catheterization and try out various therapies on my pulmonary artery to come up with a treatment for my symptoms. I'm also hoping the treatment prolongs my life long enough for our good friends up north, the Canadians at St. Michael's Hospital, to finish their stem cell research and cure us all. Yay Canada, eh! November 15th is pulmonary hypertension awareness day and I am assembling a packet of information for my co-workers. I will be in Utah that date, so I will leave one for each of them. I feel they deserve some information. I hope not to scare them, but to help ease their minds that this is a rare disease and not contagious. I think they're freaked because they've seen me go from "Nothing wrong" to SOB to memory problems to the rollator and almost continuous oxygen use. Any suggestions what to put in my packet? I'm wondering how to handle Mrs. Astor, my suitcase on wheels, the portable oxygen concentrator I'm borrowing from the VA for the trip, my laptop (internet!), my meds (a drawer full), etc. Any logistics experts out there? Take care everyone -- I'm full of hope -- Susan
Mrs. Astor!
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