Hmmm gotta say I am in pain.
It didn't go quite like I expected and did have a problem getting through some things.
Arrived at 8 a.m. and went to where I was told for blood test. I was sent across to the other wing and had to get papers and go back. I got back and they said I was supposed to get labels and had to walk over again! I told them I just couldn't do it. I had no meds and had just gotten out of the cold and was trying to adjust. Some one volunteered and went and got the labels and by that point I broke down into tears. For absolutely nothing, but I thought this glitch was going to set the tone for the whole day. They took 19 vials of blood. After taking 9 vials from one arm, they took the rest from the other arm.
Walked to the next appts. which were all the consults and education sessions. This lasted from 9:30 to 11:30. The order was dietician/nutrition consultation, introduction to research, translant finance consultation, and social work consult. These were supposed to start at 9 but this delay was minor and things started looking up and I was feeling better.
The nutritionist said my BMI is on the low side and she likes it on the higher side; around 24 is where she likes her patients to be. Normal is 18-28 and I am 20. Also, she likes her patients to be 115 lbs. She told me to eat more fruits, yogurt for calcium, and take Flintstones vitamins since I don't take any vitamins. I did volunteer to participate in a study and will have to pull the papers on that because I don't remember it.
The introduction to research is just a study where when I have my transplant they take what is discarded from a bronchoscopy and the donor's bronchoscopy and use the cells. The donor must also consent. This study is to help determine why some reject earlier. So, since this bronchoscopy will be done at and after tx, I entered it. No extra trips will have to be done. I could have waited to sign the papers at tx. but wanted to just get done what I could. I can back out at any time.
The financial consult was my worry. Huh, it only took 10 minutes and I was told no problem. My insurance will cover the tx and all meds except for deductible. After tx, the meds usually cost about 3 to 5 thousand dollars a month. With the insurance I will only be paying about 20. So the one I was worried about, was the easiest to get through. Why did I hav ein my mind that meds after tx are only 500 or so....what was I thinking!!!!
The Social Work Consult was just to make sure I have the proper support after tx. I will need to have rehab at the center 3 times a week for 12 weeks. I will not be able to drive for 4 weeks. I have Grady, but I also need one other person. This will be a hard one for me. I really have to find one more support and fast. I was given some sites to read and I hope one is for the caregiver, so much burden for them.
11 a.m. to 12 p.m. the Lung Transplant Education Services were scheduled. There were four of us altogether. Three women and one man. One lady is just so so friendly and funny! This was informative but went all so fast. I did ask a couple of questions. Blood types and the affect of donors and I will get into it later. The other was meds for upcoming tests. I received a pamplet that I will read after all the testing and hopefully that will give some more info to look up. There is a support group that meets every second Monday of the month. This is where you get the lowdown on things because staff leaves it early and only the patients are there. I sure hope I can get someone to take me to one.
Lunch was scheduled for 11 to 1 pm but I didn't get downstairs till 12:30 and I just cant order something and eat it that fast. So, I snacked on some cookies and coffee and water.
1 p.m. I was scheduled for PFT and ABG. The ABG was to be first. It went horribly. I did not get the same person as last time and I was sure hoping I would. He was quick and efficient. I got the young lady I didn't want. Got back there and she numbed me up, fine. Then she tried to get the blood. She put the needle in three different times in three different spots. blood was coming out and beading on my arm and she was poking through it with like no direction at all. That was it, I told her she was hurting me even with the lidocaine. She called someone else over. She also tried twice and I told her my chest and lungs were burning. Then told her I was dizzy. I began getting nauseous and sweating profusely. Everyone's voice was in an echo chamber and I just couldn't answer their questions even though I heard them asking them. They put cold towels on me and took bp and called my dr. My BP had plummeted. It usually hovers around 107 or so and it was down to the 60s. My blood pressure started creeping back up and after I got sick I started feeling better. I sat there for about a 1/2 hr. I got through the pft but we did not do the abg. My doctor said I could do it the next day since I had to go back to that dept. for a six minute walk test. They said it was because so much blood had been taken that morning. I think I would have felt it much sooner than 5 hrs later. I believe it was something else. I had to have ice wrapped around my hand for the remainder of the test. But, they said I did a good job of not panicking, because I sure gave them a scare and Rapid Response was their next move if things didn't improve soon. But, I got through, and the next day I will attempt it with the other arm...but I want that guy!!!!
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Onto the radiology dept. Grady and the staff insisted I get a wheelchair since I would be back and forth for all the tests. So, I did. I had the Dexa Scan and that was okay. I think it was kinda neat. The the chest x-ray and ct scan. So, radiology was a cinch.
I am exhausted and trying to reschedule my meds for the next two days since I can take them for the remaining tests. But they have to be really early because of the final 6 a.m.. testing on Thursday.
I will have to post what all the blood was taken for at another time. It is a really long list. I will have to remember to ask for my copies when I go back to get the abg because I just totally wanted to run outta there but couldn't breathe!
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I am being honest about any glitches or snags or problems along the way. I am not trying to scare anyone by relating what happens to me.
Well I finally got out of the hospital at 5 p.m. and home by 6:30 p.m.
I hope tomorrow goes smoothly. Overall, today wasn't too awful, and I guess it could have been worse.
It didn't go quite like I expected and did have a problem getting through some things.
, You must of been terrified but you stuck right in there,Im so proud of you. You Go girl!!!! Bobbi