June ain't springin either - health update

Dear friends,

Please forgive me for the delay in getting an update. As the end of term closed in on us I faced a number of challenges. My health was failing, with me getting weaker and my breathing difficulties and pain increasing. My one goal was to finish the term and everything took a back seat to that. 

Part of the problems were driven by an attempt to switch me from one prescription to another. Namely from neurontin (which I had first started taking for the trigemninal neuralgia, and then was also useful for the neuropoathy that is being caused by the remodulin)  to lyrica. The lyrica did not agree with me and gave me a number of negative side effects (headaches, nausea, and unfortunately a resurgence of the trigeminal neuralgia). So after a month of worsening symptoms I am now titrated back to the neurontin.After my first trip down to Stanford, I had a significant worsening of my condition. I had about a 30 minute oxygen deficit on the flight down, and it had really messed me up. I went from being able to walk about 10 blocks  a day (broken up) to only being able to walk slowly about 2 minutes (without a load using a rolling walker) with 2 minute breaks for a total of about 15 minutes. I also had to go from a pulsed oxygen system to and continuous O2 system, and increase my O2 doses. So this was a very big deal.

[For those of you I work with, the last division meeting I came to was under the above circumstances. It is really important to me to feel like I am still a part of the Division and our shared goals going forward.

I was not there because I was doing better, but the participation was good for my emotional well being. I really miss being among you.]
I was scheduled to come down to Stanford the week of 6/13 (right after end of term). I tried informing the insurance carrier transplant coordinators who arrange my travel and care around the transplant, that my O2 needs had changed significantly from my last trip. However, they told me not to worry about it. About 2 weeks later I called to remind them that my needs had changed, and they told me not to worry. Then around June 1 I get a call from the insurance carrier transplant coordinator who said that everything had changed and that my O2 needs were too high to fly and that I would need to drive. This floored me because I had been told in the beginning that if I went above needing 4 liters of O2 they would take me air ambulance. The new coordinator 

said I needed to drive (a 14-15 hour straight thru drive with no over night because we couldn’t haul enough oxygen for an overnight stay.)
So there is a whirlwind of phone calls, and attempts at coordination, and all the sudden I am in the logistics business on Monday of finals week.

The calls and complaints have some effect and by Tuesday they are scheduling all kinds of doctor’s appointments to “prove” my O2 needs and then I am set to fly on an Air Medical flight. So I'm back to logistics; hours on the phone trying to coordinate O2 and transportation on the San Francisco end. 

Then I start getting thrombophelbitis from the various blood draws (blood clots with massive swelling.) Treatment? Hot compresses and elevate my arms. So I am sitting there with my laptop trying to grade papers one handed trading off elevation and compresses from right to left and grading while I wait on hold for one person or another while I continue to make plans for the trip on Monday 6/13. This was a comedy routine even as I was clawing my way through it.

If you are laughing or groaning at this point, either is appropriate. I was just wondering how all this got dropped in my lap when I had been trying to get the issue dealt with over a month before.

So scrambling my way through end of term, wondering how I can possibly keep things together, by 6pm friday night it looks like we are basically as organized as is possible.

Monday and we are off to the airport. Kelly, Kathi (Kelly’s sister who is accompanying me this trip), and myself all with two 3 foot O2 bottles in tow show up at pdx, and make it relatively smoothly to the gate. I won’t even talk at this point about getting through security with all my medical paraphernalia. 

We get to the gate and wait a while and then one of the gate folks decides it is time to load. Takes me off O2 and heads for the plane. Kelly starts to leave, gets a cold chill and comes back. Sure enough the plane is being held and I need the O2 that Kelly was just leaving with. We wait another 45 minutes and finally they really are ready for me to board. I get on and they are settling in to my seat and connecting up the O2 when the Flight Attendant who has told us at least twice she is an EMT, says that the regulator (on the oxygen) isn’t working. She calls for an engineer who shows up and takes a look and says he would need to replace the unit and call in for a new one. 

He leaves the plane and the rest of the passengers start boarding and we are sitting on the ground for a while. San Fran is fogged in. Finally we are in the air and I am struggling to breathe. I tell Kathi I can’t function and I can’t keep my O2 sats up. I check my oximeter and I am down to 87%. I start pursed lip breathing (a breath conservation technique and get it up to about 91 - I am supposed to stay above 94%). I get too dizzy and stop, my sats drop, and we start over again. At one point they drop as low as 77%. The “EMT” comes by and asks if I am doing OK with the oxygen and i tell her “No. Not really” She smiles and goes on. I struggle through the whole flight feeling worse and worse.
We are finally on the tarmac in SF and I am still struggling with the oxygen. I’m only able to get to 93% on the ground so I know there can’t be more than 2 liters O2 coming through their regulator. Kathi and I wait for the O2 to arrive at the plane so we can get off. The Flight crew leaves and there we sit. Finally an officious looking woman shows up saying that we need to get off the plane and we ask where the oxygen is. She demands my paper proving that i need oxygen. It is a nightmare, but finally both the wheelchair and the oxygen get there. We get off the plane and take the trek through to baggage, get our bag, and both the man with the oxygen and the guy pushing my wheelchair take us to where I had reserved a shuttle trip to the hotel. These guys are both real nice and helpful.

The shuttle arrives and we think we are on the way, except next thing we know we are circling back around and we pick up someone else. Off we go and it is another loop. We wait and some other folks get on. I’m texting Kelly as we do this merry-go-round and she says to pave a smooth trip. I say that maybe we are going in circles because I am so dizzy from lack of oxygen. One more circle and we are in I would categorize as a stage coach ride. The driver is a weaving and driving 70 mph and the shuttle has no shocks. It truly feels like an old western with a runaway stage coach. I have a relatively new remodulin site it in which hurts like a son-of-a-gun and its like a knife in my abdomen with every bump and lurch. We also have two lose canisters of O2 rolling around the back of the van. If the T breaks off one of those it will literally take off like a missile.
Finally we arrive at the hotel (Creekside Inn in Palo Alto and they are just a tremendous group of folks) and if I could get down on the ground and kiss it I would, but I am in total agony. I give the driver a $10 tip in hopes that he will be in a better mood for the next set of passengers. My chest hurts, pain through my shoulder and down my arm, my remodulin site is off the scale. Things are finally settling down. One of the Creekside staff is hauling all the O2 paraphenalia to the room and I am setting it up while I dig out my pain medication. It is almost 6 and Kathi and I have had basically nothing to eat on top of all the drama. We headed for the Portland airport at 11am and now it is 6pm and we are finally stopped.

We go to dinner and come back and I just crash crying. It has just been too much of a day with too many knocks and I feel like shit. Kathi is fried and she has been a trooper throughout. I am so glad that she is with me.

I have a pretty ragged sleep Monday night, but feel slightly better on Tuesday. Kathi goes in search of coffee while I start trying to contact the Airline’s Aero Medical office to issue a complaint about the disastrous flight. I am told by the woman I am talking to that she heard that emergency call come in for a regulator for that flight. Then she says, “Didn’t they replace it?” I said “No, the engineer got off the plane and they took off without doing anything.” She responded “Oh My”. She said she would pass it up to her manager and gave me the email address for customer relations, and her office’s email as I wanted to copy them on the complaint. I also copied my insurance transplant coordinator. Then it is off to Stanford for my first appointment - which luckily happens to be with the head of the Pulmonary Hypertension unit.

We introduce ourselves and he says that I don’t match the image that he had formed of me. That I was looking pretty washed out and tired. I said I was, and told him about the oxygen debt on the flight. He is tremendously alarmed and says he wants to admit me to the hospital for observation. I said I would consider it but would appreciate him talking with my doctor in Portland.

More waiting, conversation, and waiting and I am in a hospital bed in Stanford Medical Center.

They schedule some tests on top of the ones I was already scheduled for. Thursday morning the nurse takes me for my appointments with the pulmonary function lab. I do the function tests and do well. (This is pretty typical of folks with pulmonary hypertension. We frequently do well on the standard function tests). Then comes the 6 minute walk - kind of a standardized load function test. We start the test and my O2 crashes. I stop to catch my breath, and take about 10 steps and it crashes again. The nurse and the Lab Tech stop the test and take me back to my room. 

Suddenly I am no longer heading home I am heading for a CT scan and an angiogram. My 6 minute walk was ⅓ shorter than it had been just two weeks before (on June 3).

The doctors are weaning me off of one medication that may be causing me some problems and hoping that I stabilize with a bit more bed rest. I am in the hospital at least until Monday. 

In talking with one of the doctors about what happened on the flight, he said that it was likely that I was experiencing high altitude heart failure due to lack of oxygen.

I am hoping that Kathi and I will be getting out of Palo Alto by Wednesday. I don’t know if I will be coming home commercial or by air ambulence, but if I have to be hospitalized I want to get home and not be here in Palo Alto. While being in the hospital in Portland is not home, it is closer to my support group and my family. Kathi has also put so many things off and changed numerous plans to stay here with me, and I am eternally grateful.. But we will somehow find a way home.

All of that and I moved from 33.8 to 34.4 on the transplant list. As I mentioned above, the system is biased against folks with PH as it scores high of the function test and low on the load test (6 minute walk). However, I’ve been told that I have come up a couple of times already on the prospects list. That means that organs came in that were not the best of matches for me and/or people were higher on the list. Stanford aims for trying to transplant between the 30-50 range. Unfortunately, because of the UNOS procedure, I might be very, very sick before I ever get to 50. Things will be what they will be.

There have been lots of tears and frustration and a few laughs over this last 2 and a half weeks. I want to thank all of you for all of your support, prayers, well wishes, and financial contributions. Believe me we need all of them. Please keep Kelly and Kathi and our extended families, and all of our families 4 legged companions kindly in your thoughts. They are my closest supports and the load on them has been more than heavy. I hear that our companions, Fox, Kacey, Mossy are pretty down missing me (as I am missing them).. Deeter, I haven’t heard about though she is attached to us it is in a different way than the dogs.

Enough already. I needed to get the “news” portion out to you all so that I could get to some of the heart and mind stuff I really need to write.

Sorry this has been so long and I tried for a cliff notes version, but as Kathi said, the shuttle ride by itself could make a book.
My love and humble thanks to all of you for your caring and support,
rowan