"Are you ready to be listed now?"
That is one of the questions that the transplant pulmonologist asked me today. Are you ready? I just sat there - letting those words sink in - or should I say trying to let those words sink in. I have thought about it and how fast everything has happened. I never in a million years thought it happened this quick, everything is just flying by at what seems like a record pace. I am sooo glad that I waited until after Christmas to do this, if I had all of these thoughts and worries and concerns running through my head 2 month ago my Christmas would have been insane and too much to handle emotionally.
My initial reply was a grin - and then an “I am ready to be listed, but I'm not ready for the phone call.” I am not ready for that phone call to come tomorrow or even the next day. I need a few weeks to let this new way of living sink in. I told the doc things have just happened so much faster than I was ready for them to happen. I just wasn't expecting all of this so soon. I thought I would have a few weeks after testing to gather myself and get back on my feet before listing was brought up.
Last night after my right heart catheterization the pulmonologist and everyone else I have met got together and discussed my case - along with others. The only people not present were the cardiothoracic surgeon(s), which are the people that actually take the organs out and put them in. They were transplanting a patient last night for something. The doc said that I am pretty much all but listed at this point. He said that everyone agrees and thinks I would be a wonderful candidate for transplant, and they think I would do very well post transplant. I could be listed as soon as next Friday (March 2nd). If I were listed March 2nd, I would be listed as inactive since I will be gone from the 3rd to the 11th. He said to just call when I came home and they could make me active on the list.
I am just amazed at everything - I asked the question of what kind of lung function I could expect post transplant with a double lung transplant and he said most patients are restored to normal range 90-100%. I was almost giddy - I actually wanted to cry. I don't ever remember having that much lung function and the fact that it is even possible makes me so happy and excited.
I asked several other questions that I will include farther down, but I wanted to share with all of those that have kept posted on the status of my situation that it looks as though I will be listed - actively - the week after I get back from Hawaii. Just think - this time last year I tried getting a part time job thinking I could work and now I will be waiting for transplant - GUH how quickly things can change.
Day SIX - Transplant Eval
9:30am & 10:00am - TC Pulm Nurse Report Visit (RN2) & TC Pulm Report Visit:
Well on to my questions:
Can you have pets post transplant?
I was told that birds are a no go - I need to stay clear of birds because the feces being in the open air and harboring bacteria can cause infections for me.
Cats are risky as well. For the same reasons that pregnant women need to stay away from cats litter boxes transplant patients have to stay away from that as well. The bacteria could kill a transplant patient and at the very least could make them very sick. I am not to have any contact with the litter box or have the cats on my bed or in/on my clothing and such. I have to try to not let cats/dogs lick me and I have to wash my hands after touching them.
Dogs are not as risky as cats because most dogs go to the bathroom outside - but I still need to be careful with dogs and petting them and what may be on their fur.
Also fish - I can have fish but I can NOT clean their tanks or touch their food - so honestly fish are out.
I asked if there was a pet that was safe to have post transplant and I was told that dogs would probably be the safest, but there are some risks with every animal. With a dog also you need to wear a mask and gloves if you bathe them.
What gauge needle was used for the catheter in my neck for the right heart catheterization yesterday?
It actually was not a gauge, it is too big to rank on the gauge scale. **FOR THE SQUIMISH DO NOT LOOK THIS UP UNLESS YOU ARE PREPARED TO BE FREAKED A LITTLE** It was actually a Swan-Gask 8 French needle/catheter.
What would be the situation for pain management?
I have heard some people are given epidurals and some that aren't. He said that it depends. If I am able to have an epidural then I will be given one during surgery. He said that sometimes they have difficulty oxygenating patients properly and have to set up a line in the groin to bypass the lungs and draw the blood out of the body and oxygenate it using a machine. In order to use that machine they need to use heparin to keep the blood from clotting while it is outside the body. Due to the heparin there are risks with bleeding involved with doing an epidural. If they are able to keep me oxygenated upon removal of the first lung - until the first lung can be replaced - then I will be given an epidural. If they have issues and I have to go on that bypass machine then I will not be given an epidural. He said that I am at risk for needing to be on bypass because I do have some pulmonary hypertension. He said with pulmonary hypertension patients are more likely to have difficulty oxygenating throughout surgery upon the removal of the first lung.
How long does the average patient stay "out" after surgery?
He said it varies the older the patient the longer they sleep after surgery, but typically with younger patients they are awake within an hour. Average stay in ICU after surgery is 3 days; average stay in the hospital after surgery for lung transplant is 10 days. He said I would be vented for the first day and I would be sedated some what throughout that. Unless there was a problem I would be taken off the vent after the first day. The goal is to have me up and moving as quickly as possible.
Is there anything that you recommend your patients NOT do or put themselves around after transplant?
They Recommended NO SWIMMING. They said private pools are better than public pools, but any pool or public swimming area is not recommended (i.e. pond, lake, river, ocean, pool, jacuzzi). They do not want you to do anything in those bodies of water that would involve you submersing your head completely due to the risk of ingesting the water. If you were to accidentally take in water and it got into your lungs it could burn your lungs (due to chemicals) or it could cause an infection. You can sit by the pool or lay/walk around in the pool - BUT DO NOT submerse your head. Also you have to wear sunscreen because with the post transplant medications you are more likely to develop skin cancer.
Other than that I asked a few questions about how the listing process worked and everything - stuff that varies per region really. Oh and one thing I found interesting is that typically they only get lung from 4 hours away at the most. A lung has a life of about 4 hours outside of a body - it has gone longer but 4 hours is the goal they try not to pass that marker.
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