We sometimes get confused with an outdated belief that recovery is a process in which a person continues to get better day by day. Granted, there is some room for a hiccup or two along the way; but generally it's full speed ahead, the worst is behind you; while it may hurt today, just remember that it will hurt less tomorrow. Sound familiar?
Was to me. But I can personally tell you that there is no straight line in the process of transplantation. Certainly not pre-transplant and definitely not post-transplant. I have no doubt that many areas of health care can claim the same; but let me remind you that my personal knowledge and story here are limited to lung transplants. This is the personal story of Clay's transplant journey, others may have a different journey.
Tomorrow morning marks two weeks out from transplant; his "2nd birthday" as it is often called. If there is any one component that our kids and I have just turned - looked at each and said over and over again it is "I just can't wrap my head around this whole thing!" It is amazing! The fact that it is almost routine is also amazing - hard to wrap your head around, ya know?
There is so much we learn daily through this process, many of them I hope to share in this blog, some just show their value at the moment, some I will never be able to describe. At the darkest moments I remind myself of the many people in our support group who have had transplants and have said time after time; regardless of how difficult the journey may have been for them (varied so much person by person) they wouldn't hesitate to do it all again. Having said that......
This week has been a challenge. It began with Clay very disappointed that he wasn't able to have his chest tubes removed to go home. Doug (right lung) was discharged Friday night, Clay had hoped to do so on Saturday.
Clay's spirits were definitely starting to dip, he was tired of being in the hospital, felt his recovery should be just as good as Doug's, and wanted it all to happen at once. Which was aslo that same time we heard his white blood cell count was increasing and not knowing why; if it was an infection or beginning of rejection.
According to our transplant info book rejection issues begin to surface the 2nd week after transplant, which is where we were. And, of course, we talked with staff a lot about this! It is difficult to determine in the early stages we've been told. Clay wasn't displaying any signs of an infection, which was good. But as they watched him day by day he also wasn't displaying any signs of rejection either, which was also good!
Now add to that, he starts having shortness of breath. Over the weekend he had done 6 to 7 loops of the floor walking with the nurse, son Douglas, and me in tow. Now he could barely get two done and those were with oxygen. Moving around his room he quickly became short of breath and discouraged. Then come the rice krispies, then wheezing, and more shortness of breath. None good signs. As a result; Clay develops panic attacks that he wasn't able to breath, that one lung wasn't enough, and that he wasn't doing as well as he should be so that he probably wasn't going to survive.
By this point, I had no idea what the heck was going on. Wednesday morning Clay had a panic attack prior to Douglas and I getting there. His nurse (whom we have the utmost respect for) made the decision to give him something to stop the panic, smallest dose adivan (sp) made. Boy, it sure didn't set well. Shortly after Douglas and I arrived he starting having hallucinations and lapsed into completely incomprehensible dialogue. I was about ready to start my own panic attack.
I spoke with the transplant Social Worker to ask her to find someone who was IPF post-transplant with one lung that could come and speak with Clay. No one else could deal with that anxiety better than a person who has lived through and with, that same reality. I also asked the doctor's to find some type of anti-anxiety med that worked with everything else he is on (which is one heck of a lot of stuff!), and doesn't make him worse than he is, and asked for answers on what the heck is going on ! Having over 20 yrs in healthcare is either a help or puts me in the position of knowing just enough to be dangerous. Either way, I pushed ahead.
It's taken several days but I can tell you that by the time I left the hospital today Clay and I both feel better. In fact, Clay said that today was the absolutely worst and best day he has had so far.
The worst: at 3 AM he woke from a dream (which are so disjointed right now anyway) and suddenly felt unable to breath breath. Pushed the nurse call button, not his nurse but another responded, started instructing him to remain calm, to breath slowly, deeply in, and deeply out. By then his own nurse came in, started asking questions about how he was feeling, ect. Clay said that ultimately there were about 10 nurses in the room, they were all calm, working with him on the issue, helping him to breath, first with an oxygen canula, then a face mask for 100% oxygen. They kept him calm, took vital signs, checked various things, and ultimately he began to feel better. Said that he felt cared for, trusted the nurses around him, secure that he was safe in their care. Lastly, he was given a vapor nebulizer that helped to clear his airways.
After that he was able to do a lot of productive coughing that also cleared his airways. When it was over he told a nurse that he was breathing better than he could ever remember. He has routine nebulizer treatments clearing out the "junk" in his lungs that tend to settle in the bottom. He had a respiratory aid that was attempting to do the same thing that he still using in conjunction.
We have a prescription for an anti-anxiety medication that he can use should the need arise but isn't a routine so it doesn't add to his long list of medication he already has for the remainder of his life.
During this same time, Doug was back in the hospital, only a few rooms down the hall. I was able to speak with him and his wife, Kathy, found out that wheezing and shortness of breath were something that they had also been dealing with. Doug had been in the ER on Sunday for wheezing, given laxis to reduce fluids, then shortness of breath led him back to a hospital admit; where he too was given a nebulizer to help him cough up the phlegm. Doug was discharged home this afternoon, nebulizer in hand to be utilized 4 times a day.
The best: having a new confidence in the staff here at UWMC, believes he is going to get better and go home, and can now talk himself out of the panic attacks. Also, he has the additional information now that he is not experiencing anything that different than Doug (his source of comparison).
He can see now that the only difference between why Doug was discharged and he wasn't is because of his chronic pain issues that have had to be addressed and that the chest tubes that won't seal. It has also renewed his determination to consume those 13 servings of protein a day to promote healing!
Clay's pain, either from the chest tubes or chronic neck pain, are under control most of the time right now and we are assured that he is not over medicated but still comfortable. There is more to his belief system that I feel is important to cover but I will do that in a separate blog.
For now, I want to say how much we miss Brandon and Celeste, the first of our children to come to town. We thank Helen for stepping to watch our grandchildren and allow them to come and help us. They did a wonderful job of supporting Stefane and I, encouraging Clay, and making sure that his ICU nurses made him their favorite!
Thank you to our son Douglas for being here this week and helping me out both at home and at the hospital. Thanks to his wife Val and daughters for allowing Douglas to get out of the terrible East Coast weather of Massassachuttes and leave the shoveling to Anika.
Thank you to several of Clay's group friends that have been wonderful in emails, blog followers, and visitors in the hospital. It has meant the world to him. Plus, it commits him to the group in the days ahead when he's up and about again.
To our good friends Ellen and Jack, thank you so much for responding to my call for cheerful visitors. I know you would have been there anyway but Clay was in need of brightened spirits.
To Adam, a special friend, that has visited Clay and continues to provide support.
To wonderful friends Mark and Marjorie who visited in ICU bringing "virtual" flowers for him since he could not have the actual.
Every email and card are given to Clay to read and appreciate. Please keep them coming.
Karen; we are love the invitation to come out and play - you are on! Just give us some time.
Nancy, your daily cards have been a wonderful smile for Clay, thank you so much.
This weekend, we have friends Opal and Bruce flying in from Denver for fun and support.
It is times like these that make a person realize how much they matter to those around them. Thank you all, keep sending your encouragements to Clay as we continue on this journey.
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