2006 Conference Story
Bright and early Wednesday morning June 21, 2006, we’re ready to go but let’s go back to Tuesday. The car was loaded to the point that we didn’t have enough room for the condenser. It was a choice of that or my clothes and you know which one won out. I had asked my oxygen supplier for a transportable liquid oxygen tank so I could fill my Helios Marathon and not have to worry about a refill or changing tanks every couple of hours while at the conference or on the way to the conference. The liquid oxygen portable took up half of the back seat and when they put in the condenser that took up the other half of the back seat. I still had to pack a wheelchair and suitcases; the wheelchair took up most of the trunk space. Then bags of medicine (I’m on Flolan); coolers for the ice packs; it all had to fit in the car. Well, the condenser lost out. If I wanted a change of clothing, something had to stay. I’m so glad they brought everything over on Tuesday and we had enough time to reorganize and regroup. Thank you HCS. We calculated how much oxygen I would use for a two day round trip including sleep time and each day at the conference and ordered a condenser from Minneapolis for the evenings/sleeping. It would be close but it should work. Extra tanks of oxygen were put in the car – just in case. Have you ever noticed how we PHer’s live a “just in case” life?
I-80, here we come. Eight a.m. and we’re on the road. My husband Tom was driving – his favorite pastime. If you knew him, you would know I’m jesting when I say that. I had to get permission for him to go with me; and if you know me you know he is not allowed to be my caregiver but that’s a whole ‘nother story.
Western Pennsylvania, now Ohio, the miles were passing by and so quickly, it gave me time to reflect. What was I doing here? Why was I taking a trip to Minnesota? With it taking two days to get there I had plenty of time to think and enjoy the beauty of this country, the farms, the wide open spaces, the skyline of the cities. We had Indiana, Illinois, Michigan (well maybe not Michigan but it sounds good), Wisconsin and finally Minnesota to go through. Again, why? Because I have PH and PHA is putting on their 7th International PH Conference. I was looking forward to the sharing, the caring and meeting all those who have this rare disease. Maybe I could help somebody; maybe somebody could help me, and that makes more sense. It’s such a scary disease and when you first comprehend what you have, you don’t know if you are coming or going. The need for sharing was over whelming I had to know more; I had to travel to hope. I was following a roadmap for a cure.
Over the past 3 ½ years, I have learned a lot about Pulmonary Hypertension and I keep teasing my Doctor that if I keep at it I will soon have my MD in PH. I have been poked, I have been prodded, I was placed in a cubical that looked like a phone booth and told to suck it in and hold it, hold it, hold it, now let it out and push, push, push. Those words are still fresh in my memory. I had special pictures taken, I was wired up and looked like a space alien, I had slime put on an instrument that looked like a microphone and rubbed on my chest. I said ‘nutuh’ to one DR when he said he was going to put a tube down my nose and take a pinch of my lung… he said ‘yahuh’. You name it and it was done. Any of this sound familiar? We’ve all been there. So I was following this roadmap to a cure and that’s what PHA is all about, caring, sharing and making us aware of what is out there in that big scary world of PH and maybe, just maybe a cure. Some of us can live normal lives, some of us cannot. Some have children with this disease, for others it may be a spouse or significant other. It reaches out to friends and other family members, all are affected by what we are going through. The effects can be devastating or they can be inspiring. I’ve been there, done that and don’t want to go there again as far as the devastating aspect of this goes; but the inspiring part is what keeps me going, the hope for a cure. I’ve met people who do well and have somewhat normal lives; this also keeps me going down this road I am traveling. I guess what bothers me most is how active and healthy I was before I found out I had PH and that’s why it is so important to me to make others aware of what this disease is and what hope lies ahead for all of us PHer’s.
Well, that wasn’t too bad. Twelve hours of travel and we are just north west of Madison, Wisconsin. And if you want to make an issue of it, it was only 11 hours as we crossed over a time zone. That was fun; we did it and didn’t even notice. Going around Chicago was a challenge with all the construction but Milwaukee – wooha. Construction and the rush hour traffic, it was not a nice scene. Where were Laverne and Shirley when you needed them? I wanted a nice dinner (I was tired of snacking in the car all day ~ peanut butter crackers, cheese sticks, cantaloupe, m & m’s and peanuts; just doesn’t make the grade) then early to bed, early to rise makes a man (or woman) healthy, wealthy and wise. Yah, right ~ don’t I wish. We needed to get up early so we could get an early start and then, Minnesota here we come.
Early Thursday afternoon we arrived in Minneapolis. What a beautiful city and so big – as my Grandson would say (he’s 3, and a big boy now) it’s huge. It was larger than I expected. We pulled up to the Hilton and unloaded the car, that poor valet; I hope I tipped him enough. The lobby was elegant and “huge”. I was impressed. I have been to other Hilton’s but their lobbies were half the size of this one. We were told that the PH Conference was on the third floor and in such and such a room. We went to our room and got a little bit situated then off to the third floor. We found the room and low and behold, it was a Director’s meeting and we were invited to stay. Tom decided to go back to the room. I got a little sampling of what they do. Very impressive. You folks are good!! After that I was guided to registration and they were still setting up but already very organized. I registered and then walked around a while, then back to the room. I could tell it was going to be a great conference.
Friday morning they had a special meeting for support group leaders and training. That’s what I need, I had just been asked to be a support group leader so I made sure I was there. Then at 1 p.m. it was the official opening of the conference: Supporting Research and Awareness. Wow, there is so much going on in the PH world and we are being made aware of it all. I am so thankful I came. At 3 p.m. the sessions started, my problem was what to choose for the next hour and thus it began. The sessions lasted for an hour; once in a while a break and then more sessions. Some were arranged so if you took one on Friday and missed another, it might be available again on Saturday or Sunday. I was looking hard at that program booklet; I wanted to get in as much as I possible could.
At breakfast, lunch and dinner we were presented with great informative topics: Roadmap to a Cure, Around the World (after all, this was an international conference), Journey’s with PH - DR’s and patients and then the Founder’s Dinner. Pictures shown, speeches given, awards presented. My brain was on computer overload with all this sharing. It was great. I was learning a lot and the caring, I don’t think I could write enough about the caring. Meeting so many great people, PHer’s as well as caregivers and the medical professionals, I could tell so many stories but that would take volumes. It was wonderful. I felt almost normal… The vendors were great as well; they listened, they talked and they also gave out hugs. Hugs were given out a lot by everyone and I need a lot of them. The vendors had so much information to hand out and lots of fun stuff too. I had to be careful, though -- remember the car was already full!
Sunday morning came too soon and after two more sessions, the conference was over but the roadmap to a cure will still continue.
We started our journey home and it took us five hours longer to get home than to get there. The traffic in Wisconsin was unbelievable, bumper to bumper traffic for hours on end. We finally found a motel just east of Chicago, another 12 hour drive, or would that be 13—nope, we hadn’t crossed over the time zone yet. Monday early evening, home at last, I was exhausted but it was a good exhaustion. I felt good, my feet and legs may not agree but I was fine.
I’m folding up the roadmap for now and going to bed. God Bless Us One and All.
Grove City, PA