Our 1st Kerfluffel - but all is well.

We had an interesting week of March 21st.  Clay's spirometer readings had been going down beginning the last part of the previous week.  Spirometer readings measure the strength and capacity of the lung, showing strength/ improvement.  But is also an early indicator that something is going on; could be an infection, could be signs of rejection. 

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!

So we have now faced our 1st, and hopefully last, episode of rejection.  It came about just as we had been told it would, Clay would feel no different, it would only be apparent through his daily stats recordings. 

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. 

So there we are.  I am trying to put together facts of donors and recipients for my next blog.  I am truly blown away by the things I am learning.  In my most imaginative moments I would never have been able to come up with some of these true stories of familes, both donors and recipients.  It's incredible. 

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.

There's a new organ in our family!!

Don't you just love that title?  Of the few people I told about how I would name this post; half thought it was as funny as I did, the other had that momentary shocked look on their face and then didn't say much at all.  I think we can all agree just where their minds went, can't we?

It is now Day 61 since transplant. In my last blog (can't believe how long it's been since I posted anything - sorry!) I talked about our meeting with the surgeon in which he voiced his surprise that we hadn't seen the lung x-rays (he actually appeared disappointed that we hadn't reviewed his work!  And to be honest, it had never even occurred to us that we should even want to!) so we made sure that we did a few days later when we saw Dr. R.  We could finally put a visual on being told that it is big, pink, and beautiful.  And yes, it truly is.  It took a couple of weeks but we got a disk of his x-rays of our very own to hold forever and admire as often as we choose. 

And of course, we want to share with you as well.  Isn't it truly beautiful?  Do you realize we are actually looking at a brand new life for Claiborne  Wilkinson?  Right there!  On that x-ray.  How wild is that?  It continues to be difficult to truly wrap our minds around the extent of this whole thing.  And we were there and participated! 

As you look at this photo (taken 3-02-2011) remember that the new lung is on the right because you are facing Clay as the x-ray was taken  (mirror effect).  See how large it is, how  it fills the entire chest space?  Just to put it a little more in perspective, the dark oval shaped spot at the bottom of the lung towards the center of his chest is actually the top of Clay's stomach! 

Looking at the "old lung" you can see how much smaller it is.  It is under half as long (top to bottom) and roughly 2/3rd the width.  I believe in one of my previous blogs I had explained that with pulmonary fibrosis (IPF) the disease is literally lifted out of a person's body when the diseased lungs are taken out.  It is a disease solely in the lungs, doesn't travel anywhere else in the body, nor does it affect any other organs.  However, since Clay received only one lung he does still have IPF in his original or "old lung" and always will. 

The other lung is left in place for several reasons; since it will not endanger the new lung leaving it in place it maintains the integrity in that side of the chest and keeps other organs in place, plus it continues to make whatever oxygen contribution it still can.  In Clay's case it can produce about 15%.  Good thing his new lung is producing 75 to 76%! 

Besides its smaller size (as IPF kills off cells those areas of the lung shrink) you'll notice that the old lung isn't quite as distinct in the x-ray,  especially on the left and lower portion.  The foggy white appearance is the fibrous areas of the lung.  Which also explain why the new lung is so much darker on the x-ray - because it's all healthy and pink and breathing like crazy!! 

We have been asked a couple of times if Clay would get another lung transplanted on the right side sometime in the future.  The answer is no.  The surgeon determines whether a recipient can maintain with one  lung or if a double lung transplant is necessary.  There are some diseases in which a double lung transplant is the only option.  However, there is never a time that someone would receive two seperate lungs from two seperate donors. 

The surgeon expresses it best when he explains that part of the responsiblity of transplant teams is to be good stewards of the priceless gifts of organs.  If he can save two people (as in Clay's case) with single lung transplants then he believes he is obligated to do so.  If Clay had absolutely needed both lungs then he would have gotten both.  But to give him both when one would save his life would be a waste of one of them.  I believe we all are aware that need far outreaches available donors. 

Clay is getting stronger all the time.  This journey continues to astound us as we move through it.  I will make sure that I don't wait as long again to bring people up to date; there is much more to share! 

First follow-up apptmt w/surgeon; Day 25 with new lung

The short, but fabulous meeting, with the surgeon today deserves it's very own blog.  Clay needed to go to x-ray prior to the meeting, which we have come to understand is just normal standard procedures for every time we walk into the hospital. 

Once we're in the exam room, all vitals taken, nurse has left, that marvelous surgeon strides in (and strides he should!) to  deliver some of the best news to fall upon our ears since we received the call there were lungs available for Clay. 

Dr. Mulligan asked if Clay isn't absolutely thrilled with his x-rays?  Clay responded that he hadn't seen them, to which Dr. Mulligan then filled in the blanks.

His lung is in the exact position it should be, fully inflated, his breathing stats show Clay has 72% breathing capacity (compared with someone with no breathing issues at 100%), and way above the normal expectation for someone with his disease after transplant of 55%!!  Plus, he said that Clay can expect some increase yet!!  OMG!! 

Holy cow!  We had not heard those stats before.  If we had been told that after a transplant we could expect a 55% breathing capacity with new lung/s we don't remember it.  Not that it would have made any difference even if we had.  And prior to surgery, Clay had less than 25% breathing capacity!

Dr. Mulligan stated that Clay has the exact "ideal" outcomes that he wishes the team could get all the time.  He went on to say that if they could they would be in Stockholm with tophats/tails receiving awards (Nobel).  How often does one hear that from their surgeon? 

Dr. Mulligan also discussed Clay's beautiful new lung, reiterating that it is fully inflated, and went on to say that it fits his chest "perfectly" and if he had had a double lung transplant (as Clay had envisioned) the outcome would have been that Clay would not have been able to fully expand both lungs.  Which is necessary for the best long-term outcome.

After Clay's surgery Mulligan spoke to me in the surgery waiting room and had explained the reason Clay received the left lung (as opposed to the right) was due to during the whole process in 2001 when Clay was having the biopsy, followed by numerous complications, the surgeons at the time finally decided to glue (yes, glue) his lung to the lung cavity.  Right or wrong, it did the trick.  It also meant that taking that lung out was pretty impossible in the future.  But then, his surgeon at the time really felt that Clay was doomed and wouldn't live long anyway. 

I should also state here that Clay's chest was again glued shut after the transplant.  Which is probably different than the new lung being glued to the chest wall, but then, ten years has passed too.  Doesn't matter what the previous hospital may have done wrong, Clay is alive and absolutely well today and nothing else matters. 

Mulligan's intern (UWMC being a teaching hospital) then took out the sutures left from where Clay's chest tubes had been and removed all steristrips over the incision.  As Mulligan was leaving he said to drop him a postcard from time to time to let him know what  Clay does in the future, said he likes to hear the good news too. 

Is that awesome or what?

One week at home; Day 25 with new lung

Clay has now been home for one week; it is amazing the progress that he has made.  We were all a little nervous coming into the house, all our professional support was gone and it was now up to us to settle in and work out a new schedule for our lives.  Our friend Opal took this photo in almost the same spot that I took of Clay as we were leaving for the hospital.  He looks much better here.  And much lighter!  Not only is the portable oxygen tank gone, he also weighs about 25 lbs less. 

We were sent home with a new medication regime of 20 different prescriptions a day for a total of 52 pills.  Of which; 3 are anti-rejection, 3 anti-infection/anti-fungal,  an anti-osteoporosis,  a cholesterol reduction, a pill to lower heart rate/BP, another for blood clot prevention, some antacids, and various supplements and stool softners.  The easiest way to keep track of them has been to just number the bottles.

The anti-rejection dosages are going to change weekly as blood work is tracked for a month or two.  We are told that the levels will settle down and changes will be less frequent; but we should always be prepared for med and/or dosage changes.  He takes his medications only twice a day; morning and dinner time, which is nice since it means he isn't constantly looking at the clock to make sure he doesn't miss a timed med.

The entire transplant team at UWMC perform like a well oiled machine (usually! LOL).  The pharmacist came in several times to go over the medication list, explaining what each medication is for, watching Clay and I load his gi-normous pill box, have us state again what each med does, how many he takes per day, etc.  And gave us a sheet with photos of each medication so we know what to look for.  Of course, the medication appearance may change depending on generics and manufacturer but it's a great help in the beginning. 

We also have to take, and record, his vitals twice a day. Organ rejection begins in subtle ways that a person isn't going to feel  - until it's probably too late to stop it.  Which is why tracking these vital signs is so important to do twice a day.  

First is his weight, and the only vital to be taken just once a day. We have been astounded that he actually started having a problem by loosing weight daily in the hospital.  This went beyond just getting rid of fluids too.  He is currently at 198 lbs, finally seems to actually holding there, at least for the last several days, whew!  Who would ever have figured that Clay  would have that problem?  So watching his weight is an indicator that he might be retaining fluids which could settle into his lungs causing any number of issues. 

Then twice daily we take his temperature to watch for any increases that could indicate the beginning of an infection.  Then is the blood pressure and heart rate. 

Finally, Clay has to use a micro spirometer that measures two things; how much forced air capacity he can exhale in 1 second, and also how much he expells altogether.  This requires him to blow as forcefully as possible, and as long as possible, into a tube attached to a hand held meter box.  He puts so much effort into this that his face turns bright red and I get a little nervous that he might faint dead away to the floor. 

After watching him doing this several times I tried it myself, thinking of course, that I would be blowing much higher numbers than he does.  Wrong!  I wasn't even close!  My face was certainly red but obviously not from the effort I had put into blowing! LOL.  All his numbers are pretty consistent, however, we are still establishing his true baseline. 

The first couple of nights at home neither of us slept well.  Clay kept waking up in a panic, worried that he couldn't breath.  Which woke me up each time to talk to him.  By the 3rd or 4th night everything settled down and I can gladly announce we are sleeping through the nights now. 

Another adjustment has been Clay's body getting used to the bombardment of medications.   Suffice it to say that he is responding well as of today, his tremors are almost unnoticable, and many of the other scary side effects are gone.  I will be blogging about our hospital experience later, covering how his body reacted to medications there, along with his reaction to having a new lung that I don't think any of us had anticipated. 

Finally, Clay was told to walk, walk, and then walk some more in order to build his strength up.  At discharge a week ago instructions were to walk three times a day for 5 minutes each time.  From there he is to build up to 30 to 40 minutes a day within a month.  Between the major surgery assault on his body there has also been a huge amount of steroids given to reduce rejection.  Both of these have been zapping his strength and immediately taken energy from muscle mass.  He has felt so weak and washed out that it has been difficult to muster the energy to do even the 5 minutes at a time.  This picture was taken (again by our friend Opal) as we went for our 1st walk out on Alki Beach in quite a long time.  Our conversation was no where near as serious as it appears in this photo however! 

When we got back to the house that day Clay felt more energy and focus than he had in some time.  We went for another outside walk this past weekend in a nearby park but it wasn't as invigorating as Alki was.  I tell myself that the fact that Opal and Bruce were no longer here visiting has absolutely nothing to do with it, but I'm not totally convinced.  Clay had plenty of walking today also, none of it outside, and he again came back invigorated. Hmmmm, daughter Georgina was there with us today.  Well, let's just say that if he has the same lack of energy after the next walk with me alone then I may have to  speak to him as sternly as it looks above!   

Received an email today from a friend of Clay's that brought up something I hadn't even thought about; Clay is getting very close to being able to take the trash out again!  Hurrah! 

Home again - home again - jiggidy - jig

Whew!  Clay was finally able to be discharged on Monday, February 7th.  And it was no easy task to get out of there either!   Here we are finally getting out the front door after 4 PM.  Clay has a mask on that he will wear any time he is in a crowded public place where there is concern about what he might breath in from others.  Especially over the next 6 months when he is most vulnerable. 

On Thursday (2/03) as the co-surgeon was putting Clay back on suction yet again, he stated that this time he was going to give the suction a day or two more before switching to water seal to ensure that was all it was going to take to get the leak to heal.  This meant that we were here for the weekend,  which was doing nothing for Clay's spirit. 

I have to thank friends Ellen and Jack for coming to our rescue, and to Jeff.  As Clay's spirits were lagging I reached out to them to come by and help reduce his sense of isolation.  Ellen and Jack were there the next day, Jeff came by that weekend.  You provided a lift that he very much needed.  

Friends Mark and Marjorie had stopped by when Clay was still in ICU, even brought "virtual flowers" since he couldn't have the real thing!  Only an art teacher would have had such an original thought! A number of Clay's support group came by routinely to offer support and encouragement.  Thank you so much to each and every one of you. 

We also had two other special visitors those last few days in the hospital.  The first was by my request also, Clay had been struggling with the acceptance of the transplant (I'll be going over that more in the future) so I asked if a single lung transplant that previously had IPF could come and speak with us; discuss what his experiences were, and how he dealt with each step along the way. 

The gentleman and his wife (I didn't ask if I could use their names) came and spent some time with us.  He had his lung transplant in August; explained that he is active in the IPF support group here at the hospital (for some reason we did not recall knowing anything about). 

He stressed that we are traveling along a road that many want to be on but few are fortunate enough to get to.  How long had Clay and I waited anxiously to not only be on "the list" but to leap to the other side onto post-transplant?  According to this gentleman only 3% of IPF sufferers get a transplant and a new opportunity of life.  Wow; 3%.   Glad we hadn't known that number earlier! 

And while each post-transplants' travel along this sacred road is unique to each individual fortunate to get here, it is also impacted by each person's body, habits, and reactions. This man encouraged that the more we talk and listen to others who have gone before us, the more we are at ease and we become with what is happening to us. 

He encouraged Clay to remember how fortunate he is to have received such a wonderful gift, to acknowledge there is great instability at the moment with his body as it heals and adjusts to a new organ within, plus all the new medications he now has to take.  His visit was very informative and uplifting!

Our other visitor was also an organ recipient; he received a heart about two years ago.  He currently volunteers at the hospital as a Patient Advocate, especially for transplant patients.  A common question (as we are discovering) is to ask if the organ recipient has had the opportunity to learn about the donor.  This is also something I will be discussing more in future blogs.  We have heard some amazing stories about donors and recipients; but this one immediately brought me to tears. 

The man had been able to meet the donor family; he was a high school student, killed in a car accident in Spokane.  There were many that benefited from the organs this boy had donated.  Several of them were able to meet with the family; at what would have been this boy's graduation the organ recipients went up on stage together and received an honorary high school diploma for the parents.  And this is only one story of many.  I hope to bring more to people in the future. 

On Sunday Clay was taken off suction, water seal was working.  Co-surgeon even went to the point of clamping off  tubes Sunday evening to make sure all was moving in the right direction.  Sure enough, Monday morning all was looking good.  X-rays showed no issues; no leaks. 

Then it was up to each aspect of his teams to sign off on his discharge; PT was in and signed off, Respiratory Therapy signed off, transplant team signed off, Pharmacy signed off, nursing signed off, and who the heck else was involved signed off.  

We were discharged, massive pill box in hand; 20 separate prescription drugs per day, equals 52 tablets or so per day, several change weekly.  Which is why it took us until after 4 PM to get out.  Staff thought we were doing really good too, they thought it wouldn't be until after 5!  

So we finally had Clay out the door and into the car (rental) of our friends Opal and Bruce.  And off we went for home!   

Recovery is not a straight line process - Day 14 Post Transplant

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.   

January 21st - Transplant Day



Nurse Anthony taking Clay to
pre-op, Stef and I in tow


We had originally thought that surgery was scheduled for about 3:30 AM, then it was pushed back until 8 AM.  Of course, we have no idea why, it was just what we were told to expect.  The latest we knew was that Clay would be taken to pre-op about 6 AM.  Good to their word, Clay is being wheeled off to pre-op right at 6 am.  We are still apprehensive since we have been told any number of times that until a person is in the operating room and the incision made that it could still be called off.  So we are being extremely cautiously optomistic.  And just for the record; we saw Doug being wheeled into the elevator just ahead of Clay!

We get to pre-op and we're warned that people are going to literally "swarm" onto Clay, good to their word they did.  They were inserting IVs into numerous areas.  Since this is also a teaching hospital there were some good pokes and there were some not-so-good pokes.  But all lines were placed and Clay was ready to go. 

And here is a very interesting fact; Doug, the man getting the other lung was in the cubicle to Clay's left.  It was determined that Clay would receive the left lung and Doug will receive the right.  Doug's wife Kathy, (I can use first names since that does not disclose identity) was pacing with him as I was with Clay. 

Just across from Clay was Greg, the man receiving the heart.  His wife Lynne was there with him.  Everyone was going thru the same processes and each was giving the others the support and encouragement to meet and conquer this surgery.  It was incredible!  I truly cannot describe what it was like in that small pre-op space with these three men and us three women.  I don't think any of us were prepared for it.

At about 7:40 Clay was finally prepared and the surgery staff were done with him.  He was scheduled for 8 AM to be taken into the "inter pre-surg" area that I was told would require another hour of getting him trached and whatever else they were going to do.  We chilled our heels for the 20 minutes, which is tough to do in a small curtained area, but we did our best. 

Just for those that might be wondering; we did not speak about "what ifs" it didn't go well.  Clay was completely confident in his gut feeling that this was going to happen and that it would be successful.  This is his thumbs up prior to having all the stuff done to him but the feeling remained as strong. 

As Clay was wheeled away, right behind Doug and then Greg, the surgery nurse told me that she would call up to surgery waiting to let me know when the incision was made.  

Because, until that incision occurs the surgery could still not happen.  There have been people rolled into the operating room for a transplant, put under anaesthesia only to wake up in recovery being told that they did not receive the transplant for one reason or another.  Which is why I was so adament about saying that until that incision is made it could still not occur.  Clay was rolled off and out of sight and all I could do was find Stefane in the waiting room and truly wait to find out if the incision was made.  

Getting to the hospital on time!

After receiving that all important call our task was to get to the hospital by 4 PM.  Our daughter Stefane leaves work, arrives at our door "dghter on duty" to help with whatever is to come.  She is so wonderful - we are truly grateful to have her close by and caring. 

Clay at the backdoor as we left for
hospital; pointing at the portable
oxygen he hopes to never have to
carry again.



We have waited years for this special call, been on the list for 14 months before, spent 10 years going to monthly support group meetings where we heard all about what that call was going to be like.  Now we actually get it and it isn't anything at all like we had prepared for.   

Anyone waiting for a transplant (lung anyway) had to be within a 3 hour range of getting to the hospital.  Which is why I was so uncomfortable being at our weekend place on Whidbey Island; what if the power went out (cell phones didn't work there)? What if the ferry was late?  And why people on the list have to move to Seattle regardless of where they normally live (Montana, Idaho, Northern CA, Oregon). 



We get the call but we're told that surgery won't be until the middle of the nite and to just take our time getting to the hospital; don't deal with rush hour traffic.  We hadn't planned on that.  Now we had too much time on our hands!
For those of you who have scheduled a time to meet with Clay (for whatever reason) during any number of years; you know that he never gets anywhere on time.  I say this now because I can, because he is not right here to correct me.  Clay will adamently tell you that he is not always late; those of us waiting for him know he is!  We love you Clay, but you are not a punctual person. 

Another thing about those on transplant lists; the vast majority that get the call have at least one "dry run" in which they get called in only to be sent home again.  Even during that marathon 14 months on the list previously we never received a call.  So heading out this time we couldn't help but wonder if this was going to be Clay's dry run. 

We had been told that Clay was to receive one lung and someone else would get the other.  We were also encouraged when told that the team knew the lungs were in great shape which eliminated the prospect of finding the donor lungs were not viable.  We felt that with both of these pieces the chances were heavily weighed in favor of the transplant actually happening. 

We get to the hospital around 4:40 (see!  There were several stops we needed to make on the way to the hospital, according to Clay, as well as his waiting to the last minute to shower), check in goes smoothly (you would have thought we were buying a house!), and when all forms were signed and the admit person calls up to the floor we find out that there is no room yet.  We were told to go and have dinner since there were hours before surgery, so we did.  Obviously, getting there on time wasn't as essential as we had thought. 

By the time we have dinner in the cafeteria (hospital food, obviously we needed to get used to it) and went back to admissions the room was close to being ready.  We were sent to 5 SouthEast, told to check in at nurse's station.  We didn't realize that 5 SE is ICU until we arrived.   But in we went, Clay settled in, tests were done, and the wait for the morning began.  Notice the time on the clock when Clay was able to finally get into the room and "gown up."



Since we knew that someone else was receiving the "other" lung we were guessing who that might be.  We had it down to only two of the people in our support group that we figured might be the other recipient. 

When we arrived at the ICU we ran into the wife of someone in our group and they were one of the two that we had guessed!  Regardless of who the other person was we would celebrate with them as we know exactly what they have been experiencing.  The other recipient was a man about Clay's age, who also had IPF, and has been on the list for 7 months.

When I was writing my last blog I had meant to discuss one other person when referring to the 1st and last lung recipients of 2010.  Having not discussed them was purely my error.  During each support group we go around the room, introduce each person, state the disease, post or pre transplant, and discuss any issues that are personal to them.  One gentleman sitting next to me explained that he had IPF, been called for a transplant last summer but had been just getting over phenumonia - which eliminated him from a transplant at the time.  He was then called again in October, but told that he would be the backup to receive a single lung if the other recipient didn't require both of them. 

Unfortunately for him, the other person received both lungs.  As we continued around the room another gentleman stated that he was the one that had received both of those lungs in October!  I swear, these group meetings are amazing. 

But this is the gentleman, Doug, was to receive one lung while Clay received the other!  Is life amazing or what?  I guess one could say that while Clay never received his "dry run" Doug had two of them so it balanced out in the end. 

Stefane and I remained there during the night.  Clay was able to sleep due to pain meds he was given for his chronic neck pain.  Stef and I were completely unable to sleep at all.  During all the training on what to expect we were told to plan on being with the transplantee 24/7 for the time they are in the hospital (largely to learn what to do for them later after they were home) and that there would be cots provided.

Unfortunately, there were non available since the ICU was full.  We have no idea what other people were there for, we just knew that we were incredibly uncomfortable in chairs or on the couches in the lounge and thus there was no sleep that nite for us. But things do happen as they should; Stef and I were moving between Clay's room and the lounge area around 2 AM when we ran into someone who was also just passing time.  She stated that she was there for her father, who was scheduled to receive a heart transplant around 8 AM.   

Through one process or another we discovered that the donor for Clay was a very healthy teenage boy, lived in Alaska, his lungs were very healthy due to not being on life support for long or having endured vigorous CPR.  His lungs were to provide a new life for Clay and Doug, and Greg was receive his heart.  Other organs that were transplanted here at UWMC from this boy were his liver, kidney, and pancreas. 

Now we just needed to wait for the morning and find out what happened at that point. 

Day 12 with new lung - still in hospital

Darn it!  Yeah, he's still in the hospital but even so we are reassured daily that he is recovering well; that this is all pretty normal within the realm of transplants.

I will go back in this blog to detail the amazing process we have been going through later but wanted to let everyone know the latest. 

Discharge originally was thought to be Friday, Jan 28 or Saturday the 29th based on how well he was doing, his being up and walking, feeling pretty doggone good, etc.  He has two chest tubes which drain off any fluids that accumulate around the new lung as a result of the surgery.  These tubes are attached to a sucture machine initially and then when any fluids being extracted are minimal sucture is turned off.  At that point the tubes are placed on what is called a "water seal."  This is where any air leaks show up in the water as bubbles.  It also indicates (with no air bubbles) that the body is sealing the area by itself and it is safe to take out the tubes.  We need to all agree here that I have not given the most medical description of the process, and there may be some slight errors as well.  However, for the most part, you should all get the basic idea, right?

When the suction was turned off and transferred to the water seal step it became apparent that there was an air leak going on somewhere.  We were reassured that this was normal, that we shouldn't immediately think something was wrong with the lung (which of course we did).  Since it was now Friday the decision was made to leave him on the suction until Sunday, then switch to water seal, and if all went well the tubes would be removed on Monday and we could bring him home.   

When Clay was originally diagnosed back in late 2001 we went thru this same thing.  He was in and out of the hospital for over three months because each time the surgeons went into his lungs/chest for biopsies they could not get the area to seal.  While we don't expect to go thru all of that again, we are certainly familiar with it. 

A side effect of this air leak can sometimes develop into what is called rice krispies (not the clinical term of course).  Clay had this back in 2001 and again this weekend.  This is where the air that is being released inside the chest cavity moves into surrounding tissues causing swelling from the air pockets.  Pressing on these areas of the chest both sound and feel like pressing on rice krispies.  Quite weird.  It isn't necessarity painful for the person having it, however, when it becomes extensive it puts pressure on the chest making it difficult to breath.  This had just started prior to the suction being turned back on so it didn't develop far and was not putting any pressure on that gorgeous new lung.  The air will dissipate by itself in the couple of days/weeks, does not require any specific treatment.  

Which is why his discharge was moved back from Monday to Wednesday.  Again, darn it!  Also, over the weekend Clay's white blood count went up - which is an indicator of either infection or rejection.  None of the tests could determine which it was or why the count went up.  He wasn't developing a fever, didn't feel bad, none of the indicators of infection.  Blood tests continued routinely over the weekend to see if the count went up or down or if any symptoms would develop. 

Come Monday blood tests showed that the count had gone up even higher even though Clay still appears asymptomatic.  The infectious disease folks have been called in to lend their decision on this, we are still awaiting that. 

The rice krispies are now minimal and while the doctors say that they would take the suction off again moving to water seal they feel that given what is going on with the white cell count he might as well stay on it for another day.  The earliest chance of discharge right now Thursday. 

That may be more explanation that you wanted but it's where we are!  Clay continues to progess although it's that stair step method.  Pain remains to be only from the tubes, he gets up and walks several times a day (making about 6 loops around the floor at a time!), maintains 97 - 100% saturation level breathing room air, and is more than ready to get out the hospital and home.  

Heading out to the hospital now, hopefully I will have the time and energy to start blogging again this evening and fill in the gaps from the time the phone rang and where we are today. 

Ring,ring.......RING RING!!

At 12:40 am today we received the much anticipated call.  Kathy, from the UW transplant team called to say that there is a young donor who Dr. Mulligan, the surgeon, believes has the perfect lungs for Clay.  While we didn't get all the info we would like, Kathy said that it is anticipated that Clay will receive one lung and someone else will receive the other.

Our instructions at this point is to be at the hospital by 4 PM, Clay will get checked in, and the surgery won't begin until sometime late this evening or tonite.  We do know that the donor is not here is Seattle but that Dr. Mulligan will be flying where ever.  Kathy is not at liberty to let us know the location, only that it is not here in Seattle. 

That is all the info we have for now.  I will keep you all informed as much as I can along the way.  Keep those prayers coming!

Day 20 - After the Support Group Meeting

As I said, we always gets lots of good info at our monthly support group meetings.  And today did not disappoint.  There were about 27 people there, made up of post and pre transplant people along with caregivers and supporters. 

First for the stats I was looking for; last year there were 52 lung transplants.  The most they have done in a single year is 53.  So last year was great, they averaged one per week. 

And the fun thing was that both the woman who had the 1st transplant of 2010 was there as was the man who came in at #52!  He had his transplant on December 22nd and up until he said that I would never have guessed it.  He looked like someone who was there supporting someone else, I was truly surprised.  Obviously, he is doing very well. 

There were several post transplant folks there, several of us pre people, on the list and waiting, and a few people who are in the process of getting onto the list.   Currently, there are 40 of us on the list, waiting for the appropriate donor to provide the gift of life. 

All of our meetings involve sharing experiences, concerns, and lessons learned from each aspect of our individual, and shared, experiences.  We boost the morale of those who are feeling beaten down by the process of waiting, either by the advice of those who are now post transplant, or by those of us who have battled that same demon in the past and found a way to get past it, at least for the moment. 

Several months ago I was so discouraged myself that I told Clay I wasn't going to go to another support group, that we have attended enough already, I just wanted this process to end.  And as I was explaining to a woman today, it really doesn't matter if you decide to have a hissy-fit or not, it doesn't change anything, the wait doesn't suddenly end, the call doesn't miraculously come because you've had enough. 

And then she said something that I have said so many times myself, that part of my "lesson" out of all this is to be forced to learn patience.  And I explained to her how I had actually entertained that thought for a number of years myself.  I do believe that there are lessons to be learned in everything we experience.  But there came a time when I just had to finally admit learning patience thru this process is just hogwash!  I'm no more patient today than I was 9 years ago!  I'm being forced, and the key word here is "forced," to tolerate this process - because I have no choice - but I certainly am not patient with it. 

Patience would denote some type of acceptance, an understanding, a feeling of peace, and let me state right now that I have none of that!  The person who has evolved enough to gain patience and acceptance from this process is someone I have yet to grow into.  I feel that I have been forced to learn tolerance, not patience, of a situation I cannot change, control, or escape.  We will ride this thru to the end , regardless of the outcome, but I'm not seeing any sign of  "acceptance" here. 

What these meetings do is to remind each of us that we are all dealing with the same issues, we ride our own private roller coasters but we have the same highs and lows.  And we hopefully get to be one of those people who gets to come back to the group as a "post" and tell all the "pre" people to maintain their hope, that when all the waiting is behind them that it will seem like just a blink of an eye, that it will all be worth it.  Which is what we hear also at each meeting, and that continues to give us hope.   Today did not fail either. 

The last stat that I was looking for was to find out how many, if any, transplants have occurred this year so far.  We always like know that surgeries are happening even if it isn't us on the table, ya know?  It means that we are getting that much closer.  At the beginning of the meeting we were told there have been no transplants.  Midway thru the meeting however, we learned that one of the "pre" people from the group actually was being taken into the operating right then for his transplant!  How exciting!  The only way it could have been better is if it had been us.  But hey, we're that much closer now, right?

Day 18 on the List

Nope, no phone call as yet.  Hear us drumming our fingers on the table?  You should, it sounds that loud - to us. 

Clay hasn't been feeling very well this week.  He's done battle with one of those irritating viruses going around; something like a cold that seemed to be building but doesn't actually go anywhere other making the person feel achy, weak, and tired.  He's feeling better today though, not totally over it, but says the achy feeling has gone.  He's laying low to ensure that he's on the mend. 

Good news about his weight - it continues to move in the right direction, as of this morning he weighed in at 218.  Max weight for listing was 230 with a BMI of 30.  Remember the surgeon explained that studies are showing people with a BMI of 28, rather than 30, do even better?  He assured us Clay is fine to be listed (which he was just a day or two later) but encouraged him to do what he could to continue to bring his weight down.  A BMI of 28 for Clay equates to a weight of 215 lbs.  When we heard that number we both felt a little weak in the knees sine it was about 10 lbs less than where he was at that time.  We all know how hard it is to loose 10 lbs.  I've been trying to do for about 5 yrs now with no success.  But hey!  It's only 3 lbs away at this point so everything continues to look good for a successful transplant. 

If you read my previous blog you know that I was able to track the actual number transplants; how many had occurred each month and for that year.  Those stats aren't available to me anymore.  Not because they are a secret but because the person who maintained the website passed away and the person who picked it up doesn't do it the same.  But the best we can figure out is that there were 53 transplants at the UW Medical Center in 2010.  Which has been about the average for the last several years, the highest being 55 early in 2000 (I think). 

I will attempt to find out more exact numbers (not necessarily because any of you are interested but because I personally like stats and this way I will have that info for myself).  The monthly support group is this coming week so I should have more info after that. 

Keep your positive thoughts coming this way.  And please, everyone, just think about - consider - being an organ donor.  If you aren't comfortable being one then don't, but if you feel that it could be the right thing for you then please make sure your driver's license marks you as a donor.  And please, discuss your choice with family and friends, let everyone around you know that should something horrible happen and your life is cut short, you want to donate life to anyone else that can benefit from an organ donation. 

Talk to you all soon!

Happy New Year 2011

We are feeling so excited and encouraged that 2011 will bring a new set of lungs for Claiborne!  He was officially re-listed on 12/23/10, we even received actual listing in writing by certified mail yesterday.  What a great way to leave 2010 behind and embrace the wonderful possibilities of 2011. 

As I write today we are on day 10.  People who are waiting on these lists count first the days, then weeks, moving into months, and unfortunately into years.  Last time, as I said, it was 14 months.  And again, we don't have 14 months this time to wait. 

Let me remind those of you who have traveled this road with us, and explain for those who are new, being on the "list" is not like going to the DMV and pulling a number out of the slot to let you know when your turn will come.  You can't sit with number 75 in your hand and watch the number board slowly creep upwards toward your number. 

Envision this (I'm very visual so I try to write in those terms for others); those who are fortunate enough to make the "list" get permission to enter this imaginary room where everyone just wonders around waiting to be called.  No numbers, no line in which one can see themselves moving forward toward the surgery room.  The order in which names are called are dependent on a scoring based on disease, current condition, blood type, lung size, etc.  It can get very complicated as I said in my last blog.  And we do know that this time Clay is in the top third of the list, given his current condition.

On 12/29 Clay had the right heart catherization done.  Went absolutely smoothly.  Only issue was the cath lab was backed up, we got there on time but has to wait about an hour before they could take Clay in. 

The right heart cath is much easier than the left heart, which Clay has also done.  The left heart is done by snaking a tube from the femoral artery requiring 6 hours (or so) laying completely flat and still before a person can be released to go home.  The right heart is done using the jugular vein, takes about 20 actual minutes of procedure (the pre and post time adds another hour) and allows the person to be released promptly.  Hurrah!  I didn't even get through a whole magazine I had brought.  

So all the tests are done, all details completed, Clay is on the list (nationwide, by the way), and now we watch Clay's weight and wait for that all important call.  And let me add here, after the entire battery of tests that have been done on him, it appears that Clay is in extremely good health other than this bumm set of lungs he continues to carry around. 

I encourage anyone who would like to respond to this blog to do so, Clay would love to hear your responses.  With the last blog I didn't have the right settings marked but I think I have corrected that now.  If not, please let me know by email.  

So Happy New Year to everyone who continue to send us positive thoughts and I will let you know as we continue on our way.