We record spirometer readings twice a day, morning and night; taking the best of three breathings, sometimes four. His numbers have been impressive, until March 18th, when they began to decline. Ultimately, that decline would be a significant drop of 30%.
Being new at this, and admittedly naive, we didn't want to over react. We were nervous over the weekend when his numbers continued to fall. We were both concerned but not really sure what to do. Clay felt fine, thought maybe he was just having a hard time with the spirometer, maybe a mechanical failure, blah-blah-blah. You know how this goes -we tell ourselves that we shouldn't worry when we're faced with something that we may not want to really acknowledge. So we decided that we'd let it ride until Monday.
And I need to state right now, that the transplant team is awesome. We have phone numbers to call them 24/7, they encourage everyone that when in doubt - call. It was our choice to do so or not.
So by Monday his stats continued to decline. Rather than make the call, we decided that since we already had an appointment with Dr. R at the clinic on Wednesday morning we would just wait until then - unless something drastic came up. I guess we hadn't recognized we live with a new definition of "drastic." Suffice it to say that we will make that call in the future whenever "in doubt" rather than waiting for something to slap us in the face again.
Wednesday morning we go to UWMC, have labs drawn, chest x-ray, and pulmonary diagnostics. The latter is what we were really interested in to either confirm his numbers dropping or that his spirometer was at fault. When his numbers were done it was obvious that we weren't dealing with mechanical failures.
Dr. R didn't even get completely in the room before he saw the diagnostic results report on Clay's lap before he turned around and said he would be back shortly. His departing statement was priceless. He said "I thought we would be having a well baby exam, obviously not." UWMC is a teaching hospital, Dr. R had his Fellow student come and go through a battery of questions with us.
Once he left, we sat in that room waiting for nearly an hour. It went so long that I finally opened the door to the exam room to make sure that staff would know we were still there.
When Dr. R, and his Fellow, came back in Dr. R explained that it appeared Clay was in rejection but it could also be a result of an infection, although there didn't seem to be any visual signs of that (fevers, etc.). He went on to say that we had been waiting so long because they were trying to juggle/reschedule the afternoon schedule to get Clay in for an immediate bronchoscopy in order to determine what was going on.
Dr. R was wonderful, got Clay right in for the bronchoscopy, participated personally. When it was done Dr. R said that he didn't detect any infection but prescribed antibiotics just to make sure. He took a small biopsy of the lung to determine the possibility of rejection, but would begin immediately to treat Clay accordingly. (By our next clinic appointment on March 30th the biopsy report confirmed that the issue had been rejection. Rejection is most common during the period of two weeks to 6 months with occurrances decreasing after that. Gratefully, there was no indication of infection, and we're still grateful to purchase those spendy antibiotics "just in case.").
Which meant that Clay would receive 1,000 milligrams of prednisone by IV for three consecutive days, beginning right there while he was still on the table from the bronchoscopy.
This is the 2nd bronchoscopy that Clay has had and we must say that Sharon, the nurse we have had both times, is absolutely awesome.
Granted, she dispenses very nice drugs, which we are truly grateful for. But she is also a caring, humorous, and attentive woman/nurse. Each time we have been there, she has been wonderful with Clay, both before the drugs and after, as well as spending whatever time is necessary with me, explaining findings, what to watch for in the next 24 hrs, and making sure that Clay is safe to go home.
We had a prescription for antibiotics for 7 days. It was one of those that cost an exorbanant amount, even with insurance. Our share of cost was $125! Do the math, they are obviously one of those intense strains. Years ago, I had a bronchial infection that just refused to go away. Ultimately, I got a prescription that cost an arm and a leg and it finally did the trick. Something wonderful must be in those expensive short term antibiotics because they seem to win the battle every time.
Just a footnote here, an editorial actually, while I am a firm believer in "better living through chemistry," I also find the cost of prescription medications abhorant. Let's just leave it at that, don't even talk to me about the cost of R & D and how pharmacy companies deserve the horrendous costs they extend to the public. Enough said, don't send me letters.
Clay was then scheduled to come in Thursday and Friday evenings for his IV prednisone. It has to be 24 hours between doses and by the time we were done with the bronchoscopy, and his 1st IV dose it meant that we would need to come in the following two days around 5 PM. The IVs took an hour each.
Anybody have an idea what a 1,000 milligrams of IV prednisone is like? I was sure that Clay would just push our car home rather than sitting in the passenger seat. It wasn't quite that drastic but a dosage of that magnitude always has an impact. I thought he should be climbing the walls and hanging from the ceiling although he wasn't.
Clay said he felt wired - uncomfortably so. Said he could almost feel the strength being sucked out of his legs and arms. This set Clay's improvements back by about two weeks. As we know, every medication has it's positive and negative side. Here is what Clay has dealt with:
- Visually a huge increase in hand tremors. (While this has been an issue with Clay since transplant, it was surprising to hear him say that his hands shaking have been more embarrassing than when he was carrying around oxygen tanks.) But after all those steroids, Clay had a hard time carrying a cup of coffee across the room, dialing the phone, buttoning his shirt, even brushing his teeth! This is an issue that continues to improve but still is noticable.
- Another by-product of steroids is that it attacks large muscle groups; quads and arms for example. Clay had been doing pretty good at starting to get up and down the stairs, part of his daily exercise. After 3 days of massive steroid dosages all progress was totally wiped out. We have spoken with other recent organ recipients and they too have this same problem. Squatting down is fine, it's the getting back up that becomes impossible. Even today, Clay walked into a retail organization, the floor was wet, his foot immediately flew out from under him, and it was impossible for him to get up without assistance. (Another editorial here, I was not with him, but had I been I would have been so very vocal about having staff rush in and help out!) Thankfully, one good size staff did walk in behind him, help Clay up, and no injuries were incurred.
- Then there is the issue of bruising and skin becoming thinner. Clay has bruises up and down both arms from the number of blood draws and IVs he's undergone. Amusingly, he went for his latest blood draw, exposed both arms, and told the phlebotomist to choose anywhere she might want to attempt. Her reply; they certainly didn't set the bar very high! We so agreed!
What we have learned:
- We will now call if two consecutive days of stats are down trending
- That just because he has had one incident of rejections does not mean that he will have any additional; but it does mean that we have to be more vigilant to watch for changes
- Just because Clay feels fine doesn't mean that something isn't going on. When the transplant team has said that watching the stats daily is the true measure of how a person is doing it is ACTUALLY TRUE! To ignore this and wait until you feel the effect of rejection just means that you have waited too long.
We have not been fortunate enough at this time to have any contact with our donor family but we hope that we will soon. Clay has been writing his letter to the family this past week, not an easy letter to write. Will let all know when he's able to complete it and especially should we be fortunate to hear from the donor family.
