I got to the hospital and this time only had to go to the main hospital, so we used the valet parking there. Getting to the registration room for the catherization was not very far and not a problem. The waiting/registration room was not very big and to me it was very crowded. More so than I expected. Iwas registered quickly. Most of my info was in the computer already so I just needed to show I.D. and get my medication alert band and hospital band on. Ummm, kinda gave me a red flag that this was a little more than what I had expected.
They have a monitor in the waiting room up on the wall. It shows a patient's first two letters of the last name, first letter of the first name, time registered, time taken back, and time operation begins, and time operation begins. I was registered at 9:45 a.m. it was long before I was taken back. They told me that once I was prepped they would get my friend to come back and sit with me until I went into the waiting room. One of the surgeons come in and explained that I would be awake during the procedure and be given medication in an IV to sedate and calm me. I told him I was extremely nervous. He said he understood and said that once I received the medication it would be no problem and when it was done I would see there was nothing to be afraid of...umm okay .
Two nurses came in and of course and gave me a gown and footy socks. Routine strip down, . After I changed and was on the table one asked showed me a paper with my meds on it and asked what ones I had taken that morning. I showed her the symbicort and ventolin as there was no time to do the nebulizer treatment and opted for my best standby quick med, . She had me sign release papers and authorizations. They also asked if I had advanced directives or a living will. Then one nurse was hooking up the usual machines heart monitor and bp and pulse ox. The other nurse shaved both sides of my groin area. She said that they prep both sides but the surgeon will only use one and just in case they can't get in on one side, they will be able to go to the other side. They asked if I had allergies to iodine, dyes or latex. No to latex. iodine and dye I have never had. They asked if I was allergic to shellfish and I said no. They still noted that I didn't know on my chart.
After this, my friend came to sit with me. He said he hadn't seen the one man for transplant that I had met, and he said he thought the other women for tx was in the bed next to me. About ten minutes the o r nurse came in. He told my friend that he would be able to come back as soon as I was out.
They wheeled me back to the room and there were five handsome young men there to greet me. They asked if I could walk. I said yes, and they asked me to get on the table. The table was very very narrow and they had to help me. They explained what they would be giving me in the i.v. Morphine, ativan, and another one that started with a p. They asked if I was allergic to any of them, or any sedation medication. I wasn't to ativan, but the morphine and other one I didn't know. They said they would just give me a little at a time and see how I reacted at first. They also put the oxygen on. No head net, as I expected.
All the young men were very respectful, nice, and cheery. They respected my modesty and kept me fully covered even while putting on the iodine on both sides. The nurses kept asking what I was allergic to and the one nurse leaning over me said that after they asked 20 more times they might be satisfied. I said I was actually grateful for that.
The surgeon came in and told me what he was going to do and said that I couldn't be put to sleep because it was too dangerous. He said he was going to go in through the right groin and check to make sure I had no blockages. He told me to keep my hand on my side and very still. He said I would feel pressure from the monitor but that he would tell me, and that I would feel my heart start to pump faster and more rapid but that he would tell me when he was going to do this. He told me I was going to feel a pinch because he was going to numb me. I did feel it. Then the one nurse came around and upped my i.v. meds and said that I didn't look a bit drowsy. I actually wasn't and I still felt very jumpy. After he went higher on the drip, I started to feel calmer. They told me they had everything at their disposal in the room in case of allergic reaction, so I shouldn't worry about that. The surgeon told me he was beginning the procedure. He told me when I would feel pressure and I didn't really feel that. He also told me that he was going to make my heart beat fast, I felt funny in my chest but not really my heart and it really didn't bother me. He told me he was half way through and then he told me when he was done. When he pulled the cather out the other surgeon leaned on my upper thigh. I felt hot and warm stuff run all down me. I thought I had wet myself and was too embarrassed to say anything. He stayed liked this for about five minutes. The surgeon said he couldn't "plug" me like he does because my viens were too small. Well, that just didn't sound good to me, but not like a real big red flag if it was under control. A female nurse came in the room and she got on the side that would be exposed when they moved me. After they moved me onto the bed, they wheeled me back to my recovery room. The male nurse said, see it wasn't as bad as you thought, did I break my promise. I will tell you, these young men talked to me in the o.r. like they would if you were standing in the room with them. They joked with you and all, they just really made the operating room a little less tense.
So, let me tell you about the machines in the operating room. Not really machine but monitors. There are five screens, but I only saw two lit that are on the one side of me, opposite of the surgeon, I did peek. I could actually see the cather and my heart on the screen. This is the screen that the surgeon looks at when doing the procedure. Above your chest is a square box that I think must be what transmits to the monitors, because it moved to the left when he said he was halfway done and they did both (right and left cath). Next to that, about at my shoulders was a plastic shield with a microphone. This was all covered in plastic. I think the purpose of this is twofold. One purpose is for the surgeon to talk to you during the procedure, and second...is to um well, prevent any matter from spraying at your face if that should happen.
I thought the worst was over. Nope, not for me anyway.
When I was taken back to recovery, there was still more to do. The nurse had to take out the entry tubes that the cather goes into. There is one for left and right. Both nurses do this, as one tube is taken out, there is a very great pressure applied while the other is taken out. After both tubes are removed, a vise grip is used. It looks like a jack and has notches on it for levels of pressure and it clamps down on your groin. I thought the thing was going to go right through me because the pressure was so great. The pressure is slowly taken back every five minutes. Then the nurse applies slight pressure for 20 minutes. They said it took longer because I wasn't plugged. Then you have to lay perfectly still in bed for four hours. Every hour they raise your head a little. It is absolutely imperative you not move as this may begin to make you bleed. if you have to cough or sneeze, then you need to apply pressure at the insertion site so you don't begin to bleed. Kinda scary. Ummm, no, very scary.
They then let my friend come back and sit with me. He sat with me the whole four hours and listened to me moan and groan and complain.....gotta hand it to him.
Laying in bed for four hours perfectly still was so so torturous. My leg has a tendency to jump and alot of the time I feel I must move my leg constantly just to be comfortable. Restless leg syndrome....somebody shouldn't told me about the laying still part. I asked the nurse to give me something to make my leg stay still, but they couldn't at that point.
Then the pain slowly returned. The nurses are very good about checking to make sure you are not bleeding. They allowed me to have anything I wanted to eat and gave me a turkey sandwich, gingerale, and coffee.
At the end of four hours, they walk you around and let you use the rest room. I was so grateful to be able to sit up and move at that time. The pain was horrible. My right leg had absolutely no strength. I walked and used the rest room. I was able to leave and needed assistance getting dressed. As I said, my right leg just felt paralyzed but I felt pain in my groin. The nurse explained I would be sore like someone punched me, but it was worse than that.
I know I am not the only one that feels the pain like this, because the woman that was next to me was crying when they took her for a walk and said she didn't want to walk anymore. This was the very nice funny lady I had met the two days prior also having a transplant.
She was released before me, and she stopped by my area of recovery and wished me luck and I wished her luck.
The man I had met in the tx sessions, was still recovering in the next area and I wished him well in the future. Since he lived so close I hoped that we would meet in a store someday both be breathing easier.
Anyway, you cannot remove the dressing for 24 hrs, and are not able to shower for 24 hrs. No lifting or strenuous activity for 2 days. Of course they release you with a list of things to look out for.
Today, I truly expected to be only sore. I was still hunched over and feeling a great deal of pain. My stomach is getting burst of pain also, which I guess is to be expected. I really couldn't eat much and did absolutely nothing all . I have urinated alot, and they said that would happen and drink plenty of fluids to pass the dye. Removing the bandage wasn't too hard except where the blood had dried. I wet the area a tiny bit to help it along. I was mostly scared that I would pull to hard and somehow start bleeding.
last nite, every time I woke up I found I was applying pressure in the insertion area. . In the instruction upon release, it says to do this if you begin bleeding again and it should stop. I guess in my sleep and subconscious...I wasn't taking any chances. . Oh geez.
I hope tomorrow I am not in so much pain. But, the brunt of the tests are over. there are a couple of loose ends; such as the tests that had to be rescheduled and finding a second support. I have told two family members about the support I need upon tx release and I have had no bites so far. I guess I will call the social worker to see what can be done.
I am tired and need to get some sleep.
Hope this helps others with their decision to be tested in the future.
I had this test done months after my first tests. They told me it was not to be done until everything else was clear.
I can really sympathize with you as it is not a very nice procedure at all. The worst part is lying still. My problem was my back statred to spasm and then I had to pee! I couldn't go in a bedpan so the nurse actually took me to the bathroom, the whole time applying pressure to the spot!
As soon as I got back into bed, the darn thing started to bleed. She applied more pressure and then it was okay...but scary.
you did good girlfriend! I did have this too and it's not pleasant at all........did you watch the monitor? I did and found it fascinating but a little freaky the worse is laying still........just not right
OK ladies...WOW...was nervous about having this but now think I'll be asking for a little more of the drip in the arm goodies. You three were really brave and when it's my turn, hopefully I can be as brave. I'm really a wimp with pain (which others would call discomfort ). This is truly not nice. At least, it's over and done and things can move on for you.
Aero, What a trial, the procedure itself would be bad enough but then to have to lay still for that long, OUCH!! I would be your support person in a heartbeat, I know someone will step up to the plate for you, even if it is a social worker. Praying for the best for you.
Like I have said before I admire each and everyone of you. You all inspire me. And Im learning to feel more comfortable with the idea of a transplant reading your stories, Because Ive been concerdering taking the plunge myself. So thank you so very much for sharing. Bobbi
Well, I know you're glad that part is over, and I wish it could have been less unpleasant(to say the least). I went with my brother when he was 8 and had no idea what his experience was after the procedure, and he's done it once as an adult and never told us about it. It gives me new understanding of what he went through.
What a great friend you have. I'm glad he's there for you and gives you comfort. I hope you don't have much trouble finding your second support team. As nice as you are it probably won't take long.
Thank you for helping all of us, too. You have made everything very real. I hope you sleep better tonight. Take care, Sue
Aero, you are so brave, I am not sure about the dye because I am allergic to shellfish, and iodine. Guess that would be something I would have to discuss with them. Hope you are feeling better. Please take care of yourself and thank you for sharing with all of us.
I am in AWE of so many of you, aero, you are so brave, wendy you are so brave too, I have so many hero's.
Hopefully the hard testing is over aero and you will be put on the list, and breathe fee and easily like you so deserve. I want you to be able to see many many sunsets and sunrises with Lakota and Grady, I wish one day you could come to Florida nd let me spoil you, I want to see you run.
Thought I'd mention this for those of you who are sensitive to shellfish and iodine, there is a pre-treatment for the iodine problem. You take 80 to 120 mgs of prednisone 12 hrs before the procedure and again 2 hrs. before. (the hospital told me 120, but because I was already on pred. on a maintenance dose for my COPD, my dr. said the 80 would be enough.) I had no problems with the iodine that I'd had on a previous test.
I too am having the pre-transplant testing done and even tho we're in different countries, your description of the angiogram could have been mine, except you are much more open and eloquent then I could ever be! It was a little scary and without a doubt the strangest test I have ever had anyways, probably due to the "conscious sedation", some nausea during the test and that crazy "vice grip" clamped onto your groin for an hour! I was lucky though, as I didn't have any pain to speak of after, just general fatigue and a little bruising. The other testing has been spread out over the last couple of months with a lot of trips to the Vancouver Hospital which is about a 45 minute drive, except bloodwork and other lab tests, immunizations, etc which I have had done locally (10 minutes away). Next week I go to speak with a psychologist and social worker at BC Transplant and the following week I see the transplant surgeon and hopefully get "listed".
Thanks so much for sharing and good luck the rest of the way. I'll keep reading with interest and maybe interject with comments on my own journey along the way as well, if that's okay with you. Oh and I sure hope you're feeling better today
P.S. I noticed how young you are and wonder if you have the alpha 1 antitrypsin deficiency and if you mind if I ask what you're fev1 is? I am 54 and my fev1 is about 14% at this point, no A1A deficiency, but a 30 year smoking history 14 - 44.(Dumb, dumb, dumb, dumb, dumb!!!!!)
P.P.S. Have been keeping an eye on you too Toni, and appreciate your frankness and honesty as well. I know it helps me a lot to read of your experiences, so I will try and be more forthcoming with my own if I think it might be of interest to some of you.
Toni, I had to use the bedpan in the last half hour. The young girl couldn't do it right and she had to another nurse. It was very embarrassing, as I have never had to use a bedpan, . Better get used to it huh. I bet you were so so scared.
I took off the bandage, not too much problem except some patches of missing skin and redness. I am very bruised and my leg is still very weak. I am experiencing some pain still and will give it a couple of more days before asking doc about it.
Deltagirl, in thinking about it and having had it all done, I believe the testing should be spread out over a couple of weeks. It is just so so draining on the patient and the caregiver. I guess I will get the Fev1 result when I go back. I worked around alot of chemicals when younger, parents both smoked, and yes I used to smoke. A1, I am sure they have tested me for it. I don't know if it is something can show up later or shows up when first tested. Good luck with the remainder of the testing.
Susanny, I read somewhere about the prednisone before tests if someone is allergic to the dyes.
Jackie, the procedure itself takes about 45 minutes, but with so much med in you it really flies.
I did glance over at the monitors once in a while, but didn't want to look too long. I know how I am about things, and I think that would have made me antsy.
Linndie, I would love to walk on the beach again with no problems.
I wish the best for all those considering taking the journey and testing for transplant. It isn't an easy decision to make. Even after consideration and final decisions, sometimes there is a little hesitation or doubt; if there wasn't, we wouldn't be human. But, as in all of life, nothing is ever set in stone and life is never a perfectly easy path to walk.