Man time flies when your having fun....or well...time flies, lets leave it at that...
The temperature here in Bethlehem has finally gotten out of the lung rupturing 20s and even touched the 40's for a few days. I took advantage of this break in the weather by going into the campaign office for a few meetings to catch up on things on Friday, out to Starbucks for coffee with friends on Saturday morning (Thanks Denise, Shannon and Barb!) and out to the Promenade Shops for a walk on Monday with Denise. My trips were very short, but it was great being out never the less. I was even able to walk the length of the mall slowly (with the oxygen on), so that was really nice. Plus I had a chance to get a white Mocha each time I was out, that is my little treat to myself for the effort.
The last few days have been spent mostly reading everything I can find about lung transplants and preparing for the fast approaching evaluation. I'm in crash course mode to learn about lung transplants, goal is to know as much as the Dr does....LOL...(those that know me know I'm only half kidding)
I thought people may be interested in the Agenda for the evaluation. The event should be quite informative I'm sure.
Tuesday Feb 2:
8:15 Arrive at Penn
Bloodwork & Drop off Urine (24 hour specimen)...Yes that's right 24 hours of urine baby!
9:00 Social Work Consult
9:30 Introduction to research
10:00 Nutritional Consultation
10:30 Transplant Finance Consultation
11:00 Lung Transplant Education Session
Lunch
1:00 Pulmonary Rehabilitation session
2:00 Ventilation/Perfusion Scan
3:00 Echocardiogram and Electocardiagram
Wednesday Feb 3:
9:00 Dexa Scan, Chest CT Scan and Chest X-Ray
Lunch
1:00 Pulmonary Function Test with Arterial Blood Gas (OUCH!!!)......Hate blood gasses
Thurday Feb 4:
6:45 am Cardiac Catherization....I will be sedated for this, then have to lay for several hours after before I can go home. Good news is the car ride back to Bethlehem is not an issue, I just can't drive.
Then on Feb 23rd:
9:00 Barium Swallow
10:30 Follow up appointment to review results of evaluation and recommendations.
We had a room booked at Penn Towers for the three nights, but after speaking with a few people have decided to cancel and go to another hotel. Apparently there are a few recently renovated full service hotels nearby for an equivalent price. For a $175 a night one should expect a little comfort. And for anyone reading and planning on robbing our house while we are gone, we have pet sitters coming to the house, oh and Dharma bites....
Other open issues are what to do with my CF related Diabetes over this time. and what to do about vacation....
I'm waiting to hear back from the Endocrinologist about how to handle my Diabetes during the fasting prior to tests. Since I have an insulin pump that continually pumps insulin into me to help manage my blood sugars, and I can't eat prior to some of the tests, my sugar level would keep dropping without further intervention. So I'm sure I will have to disconnect the pump and watch my sugar level, it's just a matter of when.
Another issue is on the 23rd I had hoped to be in Florida! I'm going to talk to the doctors and see if I can move the appointment ahead or not. If the potential outcome of this appointment is officially being listed, no way am I going to miss it. Other thought is potential position on list, I can't very well be in Florida if a call can occur. I find it hard to believe that it would happen so quick even if I do get listed right away, but who knows. We will get some clarification on this, but I hope not to miss my little respite in the sun.
An interesting tid bit......I was trying to look at the variables for listing (Lung Allocation Score, I will write about this more on a later date) and Since I do not know my blood type I did some checking. Since my dad is B+ and my mom is A+ I can be A, B, AB or O.....so basically anything....LOL....this was no help at all....just going to have to wait to be typed.
On a sad note, I can't believe the Democrats lost Kennedy's seat to someone so against health care reform and the super majority along with it. There is some serious irony there.....Since Massachusetts already obtained health care reform in 2006, they basically said we got ours....fuck you the rest of America (much like many on SS are saying). Being a person with a BIG pre-existing condition, this really upsets me. The plan going through the house now is by no means what I wanted, but it certainly is a good base to work from. I currently have a primary and a secondary insurance plan, and still am very concerned with the coverage needed for this life saving transplant. It's terrible that in this country of plenty that people are so greedy and self centered as to keep others from having the same care they have and withholding medicine and needed surgeries.
Man, I look at your schedule and brings back all the anxiety I had about those 3 days. I think you've got a good grip on things though, and you have any questions about particular tests or whatever, feel free to ask. Do you have facebook? I'll look for you on there.
ReplyDeleteYes I'm on FB
ReplyDeleteHi,
ReplyDeleteMy name is Sharon Ray and I am the assistant editor of Cysticfibrosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Cysticfibrosis.net offer a free informational resource to both the general and professional public on this terrible disease.
I hope you show some interest in building relationship, please contact me at sharon.cysticfibrosis.net@gmail.com.
Hey James,
ReplyDeleteLung perfusion scan is the worst of it in my opinion, even though the heart cath gets played up as super scary. Just so you're prepared, the perfusion requires you to breathe through this bi-pap like mask and feels kind of suffocating. It's okay -- you'll have plenty of O2 and it only takes about 15 mins -- but it wasn't comfortable. I've since been told that they let people bring in ipods to distract them. I so wish I would have known this during my exam.
Word to the wise: you only have to lie still after the cath if they go in through your groin. They went in through my neck and I was allowed to walk right after. But the neck has other potential issues too, so if you want to try this route be sure to ask the docs about it first. They can explain the difference.
If you look on my blog archive under August/Sept 2008 I blogged about each day of the eval. I didn't do the heart cath until May 2009, but all the rest of it is in there. Just my experience, obviously, but my goal was to give people an idea of what to expect. Also, do you have "Lung Transplantation Handbook: A Guide for Patients"? It's a bit outdated, but a very useful book. Worth the money, in my opinion, and available on Amazon.
Good luck!
It was great being able to share a Starbucks with you! Hope to do more of that in the future. Sounds like you have an excellent grasp of what's in store for you at UPenn. (I would expect nothing less of my Sheldon) And yes...I think by the time you get there you will know as much as your doctors. ;)
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