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.