Home again!

Though it was a drizzly day, walking out the front doors of the hospital and standing in the cool air was a thrill! With 5 IV lines at one point (including out my neck) and never less than lines from both my arms, it felt odd to be able to move without restriction. Odd in that the thrill of freedom was shadowed closely by the fear of disconnection–that nobody was monitoring me and anything could happen.

In the hopspital, especially in ICU, eyes are on you always. No cough, not a drop of urine, not a single heartbeat passes without recording. Flickering yellow daylight never ends. Night and day pass marked only by the arrival of food, the change of shifts and the vague quietness of fewer visitors.

I could say I hated it–which I did, the complete lack of privacy, the beeping monitors, the bed restriction, total acquiescence to the process–but it was like a cocoon. Especially on the day of all the tests , last Friday, when with each successive trip to another part of the hospital I felt weaker and more scared, each return to ICU was a return to safety.

It’s a university hospital so residents and nurses showed up in pairs and gaggles at any hour, all intense and earnest and kind. I loved it.

   Eventually I was moved to 4A, the hospital’s somewhat famous ward where the heart transplants go through recovery. Though the aloneness of a beautiful single room (with my own actual PRIVATE bathroom) was a bit jarring, the darkness and quiet were not. It was in the few days on 4A that the reality of heart transplant really hit me.

That’s a next post, though. I’m pretty whipped.

I’m home. I’m much better than I was when I went in last Thursday, though another 4 pounds thinner. No appetite yet (can you imagine that?). I gave myself my first injection in the stomach–5 more to go. I’m strapped into my portable defibrillator which will help keep me alive until a transplant. More about that later…

Thanks again for all the notes, the prayers, the kindnesses. And props to Pat for stepping in and throwing up a great post while I was out. I’ll rest a bit and maybe be able to finish this post.

Rough day for Mike

Hey everyone.  This is Pat again.  Mike is still at OHSU in Intensive Care – best place for him to be for monitoring purposes.  He had a pretty hard day today.  Lots of activity and not much energy to give to it.  He had x-rays, an echocardiogram, and if that wasn’t enough, also had a heart catheritization.  Busy day for Mr. Ashland.  The echocardiogram showed little or no changes from the previous one, but Dr. Hershberger says that it suggests that the right side of the heart’s function is not as bad as the first echocardiogram showed.  Nothing definitive, but that is his interpretation of it.  Mike had x-rays today which he had to stand up for.  When he did this, he noticed his own weakness and in his words, he was weaker today than any previous day associated with his heart issues.  He was very very tired and weak and didn’t even know if he would be able to get up for the x-rays, but he made it through somehow.

We were told that Mike had a fever today (it seemed to have broke as Jen and I were leaving tonight) and his doctor believes that it is most likely caused by a virus.  In a proactive approach to this situation, Dr. Hershberger ordered a boatload of antibiotics to attack whatever Mike may have (could be a cold, could be bacterial, viral, who knows…it is all about getting it out of his system).  Seems to be working well.

Mike wanted me to pass on a couple of moments that profoundly impacted him today.  First, he had two young female residents in the room (it is a teaching school so there are often students observing and assisting in procedures).  They were feeling his chest to determine the size of his heart and he said that their hands on his chest gave him a “stunning sense of comfort”.  The care and tenderness that they used in their examination really moved him.

The second moment came right before Mike had his heart catheterized (yes…a catheter went into the side of his neck and monitors the pressure within his heart).  In addition to feeling very weak and tired, he was very nervous and apprehensive about this procedure.  He said that his nurse who was helping him get up and change beds (which was akin to climbing a mountain at this point for him) gave him a kiss on the shoulder area after he laid back down.  This helped to ease his mind a bit.  He said it was a very maternal kind of feeling that he got from it.

It’s in the small things that we can measure other’s greatness and he is getting plenty of attention to detail during his time at OHSU.  He feels very comfortable knowing that he is surrounded by very good doctors and nurses.

Mike’s sense of humor is still present when we are bedside.  While that is nice to see, it is painfully obvious that he is very scared and rightfully so.  There are times it feels like his life is hanging in the balance, holding on by a thread, whatever cliche you like.  It is emotionally devestating to see someone so active and healthy laid out on a hospital bed in intensive care having every breath monitored.  It is definitely the best place for him right now and until he gets home and cranks out one of these entries himself, Jenny, Judy or myself will keep everyone posted.

A sidenote:  They ask that people please don’t call OHSU or their ICU as Mike doesn’t have the strength to talk on the phone and they don’t have the time to take a bunch of phone calls for patients.  Your replies to these blog entries are most appreciated and I know Mike looks forward to reading them when he comes home.   Jenny will continue to send out emails and keep everyone informed as she has done very well thus far.  Please pass Mike’s blog site to anyone you know that would benefit from the information contained in it.   His doctor believes that Mike’s severe weakness is not related to reduced cardiac output, but more likely the fever and whatever bug that he had that caused it.  Dr. Hershberger also said that the heart catheter (also called a swans catheter) produced better readings for the pressure within the heart than he anticipated.  We will post more tomorrow and hopefully have positive news on his condition.  Keep him in your thoughts and prayers.

Pat

Up on the hill

That is where Mike is as I type this. He is at OHSU (on Pill Hill as us Portlanders call it) and will be having a “Bubble-EKG” That should happen sometime in the first part of this morning (can’t believe it’s Friday already – what a wild ride of a week it has been). Although Mike (or dad as I like to call him now) has had a very rough last few days, his sense of humor did return last night. He was joking a little bit and laughed a couple times. More detailed information is in the e-mail that Jenny sent out last night. She is so good about getting the info out. Hopefully we will know more about the Bubble Echocardiogram later today. It appears that Mike is going to be at OHSU for at least another day, maybe two. Observation under a controlled environment is the best situation for him right now. Judy, Jenny, or myself will keep you all posted.

Pat

Moving and breathing

Breathing. Everyone makes such a big deal out of it.

Since my last hospital stay a few days ago, things seemed to have gone south frighteningly fast. You know something’s out of skew when you sweat like a pig typing on a keyboard and can hardly catch your breath from simply laying down. Man, what happened so fast?

I know I had an “important” heart event when I went to the hospital. But I wonder how important? Hopefully I’ll find out today at OHSU.  Blood presser at 62/46–pulse 106.  Not good.
That little bastard, pain, has been creeping around and jumping out of dark corners to get me. Vicodin worked.

Jenny went through all the medical bills stacking up, medication and treatment documents, applications for insurance, disability, etc. WOW. What a pile of work and yet it’s all laid out so neatly with notes and directions and post-its.

Plus the list of questions for the Cardiac Transplant Team today, including some for the social worker. I don’t know what we would do without Jenny and Pat’s help. And companionship.

Feels like my job is to make it to a transplant, or whatever will be done. Some days making it seems more likely than others. I know everyone in the house has been watching me these last two days and wondering what’s going to happen next. I’m going to do the next thing, that’s what. Take the medications, go to the appointments, get on the transplant list. Get well. Breathe.

I wish I could talk to everyone who’s called and return a note to everyone who’s written or emailed. I am so touched by your care and words and prayers. THere is a sustaining love and grace that will get me to wellness. I can make it.

love and peace

mike

2 more steps backward

Sorry, not much on here.  Best I could do today was lay in bed and not move.  Having very hard time breathing, especially if I get up and move to another room and lay down again.

Old chest pain is back with ferocity.  Cough coming back, too.  HOpe tomorrow I can write more.  It is scary.

OHSU tomorrow.  To all who have emailed me, I’m sorry for not returning.  Just don’t have it.

Jenny Pat and Judy keeping me so good.  Spectacular people.  If you need anything, they will talk to you.  I can’t handle phone yet.

Tomorrow will be a better day.
Love and peace

mike

love and peace

1 steps forward, 2 steps back

For a few days it seemed like the medications word kicking in.  I went to the coast and to a bridal registry event at Crate and Barrel with Jenny and Pat. It felt good to feel good, to be able to breath and have enough energy to walk a few blocks.

Monday morning at 4 am the feeling good stopped in a rude way.  As I lay in bed my chest suddenly felt like a large farm animal was sitting on it, the pain started in chest and and it got tough to breath.  Even though this definitely felt like “it” I took nitro and monitored my blood pressure.  By the third nitro we left for the hospital

With nurses and doctors flying around me, I suddenly had IV”s everywhere, tons of drugs and monitoring devices–including another EKG.  Evidently the results of the EKG scared the attending doctor and there was a rush to get my pain down to 0 so they could rush me to OHSU.  Unfortunately they couldn’t get there and brought in my first cardiologist, who wanted to do an angiogram.  All physicians had been avoiding an angiogram believeing my heart cound’t take it.  But, with a plan to do a “low contrast’ angiogram and not go into the heart at all, I found myself in the catheterization room.

I was scared.  But it went well and we confirmed what all had though–I have no blocked arteries.  I do have one that is completely shut down going to the left ventricle–but we had known that. SO there’s no magic bullet like stents or bypass, etc.  We’re looking at a new heart.

It’s been about 24 hours.  I”m home and still have substantial presure and pain in my chest.  It’s about all I can to lift my head or walk to another room.  Certainly as bad as I have ever been.  One of th new pieces of informarmation is that my ejection fraction has fallen even more.  Normal is 50 to 70%, mine had fallen to 15 to 20% .  It is now 11%, meaning that 89% of the blood in my heart is not getting pumped out.

For now I am laying on the couch and just trying to breath and keep my pain to a minimum.  I just don’t have the enrgy to talk on the phone.  Even typing right now is exhausting and I need to stop.

OHSU wants me back this Thursday.  My doctor wants transplant as soon as possible.

A bad couple days.  Certainly some good ones will follow.

Good news, Jenny and Pat got officially engaged–ring and all!  The best people.

I have to lay down.

thanks,

mike

The Day After

As with any “big” day, I sort of crashed after OHSU. Started the new medication Toprol-XL and have some strange new feelings in my chest. Not alarming, but will have to check out with OHSU.

Today I started thinking more about a transplant and what it means. Walking into the Cardiac Transplant unit at a hospital is an experience. Lots of people with masks. The reality of transplant is a bit overwhelming. Finding out that my heart was just as fragile even though I feel better was a little frightening. Jenny said it’s a little like taking the pain medication for a bad back. The pain is better and you can do more, but the back isn’t better and it’s easy to injur it more.

In this case, doing more is a lot more dangerous. Or so it feels.

When I ran marathons, I remember how in touch with my body I would be during a race or really long training run. After a couple hours of running, every cell seemed to be checking in: “I don’t hurt.” “Nope, neither do I.” “Uh, right shin here. I’m feeling a little sharp pain running up and down.” And so on. In most ways it was both a good exercise and great distraction.

Now every pain and pressure in my chest registers a lot higher on my radar. I have questions: When to take nitro? When to call in? When to let it ride? This is probably normal for everyone who has a heart attack and looks at transplant. But it is kinda weird.

I’m very weary today and maybe a little pre-occupied. Spent part of the morning putting all my medications in order and sorting out and posting all the medical bills that are piling up. Jeez, that’s enough to get some chest pains cranking!

I have a very goofy sense of humor and I’m recognizing that I often laugh when I’m in pain and make jokes when I’m scared. Not bad things. Just a little thing I saw in the Heart Failure Mirror.

Thanks for reading these posts and not calling to find out how the appointment went. Talking on the phone can still get me coughing, but even if I don’t cough, it’s exhausting for me for too long. Your notes and comments and prayers and cards and encouragements–well, it’s all a powerful counterbalance to whatever fears or anxieties I dredge up.

Thank you.

A new start

With chest x-rays in a big brown envelope, current medication packed in a little ditty bag, and a folder filled with forms, a complete record of my blood pressures, weight and pulse, and a list of questions, Judy and I made our way up to OHSU’s Cardia Failure/Cardiac Transplant unit. I was nervous all morning. But two hours later we were both reassured and feeling that we were now really beginning the process of getting my health back.

We were brought into an examination room by Donna, one of the unit nurses, who clarified medication data, history and took my vitals. Then she took me to a hallway for a 6 minute walking test. I was simply to walk from one end of the hall to the other, back and forth, for 6 minutes. A chair sat at each end for rest if necessary. Donna started the stopwatch and I walked under her supervision. Twice I had to sit down to rest both from dizziness and breathing. I was surprised.

Back in the exam room, we finished vitals and then Judy and I waited for Dr. Rami Alharethi, Assistant Professor and teammate with Dr. Ray Hershbergon on the Cardiac Transplant team.

(I should say that when I got home I ate some lunch and sat down and wrote the above paragraphs. I was so tired I laid down to rest and 3 1/2 hours later I’m finally back)

Here’s a summary of what I learned today and what the next steps will be:

• my heart is damaged and is continuing to get worse.
• Why? With alcohol, cholesterol, high blood pressure and smoking eliminated as causes, I fall into a category that is “without known cause” or idopathic.
• feeling better at this point is from the Digoxin. My heart is as fragile today, or more fragile, than a month ago when I went into the hospital. I am not to stress it in any way.
• I’m only at about half the target doses for the primary heart medications I’m taking. We need to move these further up but allow 2 to 4 weeks for each change to monitor my low blood pressure. Some people do not respond to these medications and others cannot tolerate adequate dosages due to allergy or low blood pressure. That will take more time for me–probably 4 to 8 weeks at least.
• These drugs interfere with the hormones generated by my brain and kidney that are trying to compensate for my heart weakness. That compensation, speeding up my heart and increasing it’s size, is very long term destructive.
• My average high end blood pressure is in the 80’s/90’s–not a lot of room to drop.
• On what to do about chest pressure and/or pain, I have new directions (before, I was allowed to take one nitro only): take my blood pressure, then take a nitro. Wait five minutes, take blood pressure again and–if room–take another nitro. Wait 5 minutes and, if chest pressure or pain is still there, take blood pressure again and–if room–take another. At any point my blood pressure is too low to take nitro (assume a 10 point drop from one nitro, so systolic blood pressure should be at least in high 70’s), call 911. Chest pressure or pain happen frequently with me.
• Angiogram is a critical test I have not yet had. My cardiologist has been unwilling to stress my heart at that level. Dr. Alharethi feels that there is a way to do the test that will be as low risk as possible for me. The information from the angiogram is critical to making decisions about next steps. Despite my low blood pressure, low cholesterol and the cardiolite stress test that indicated no blocked arteries, he wants to absolutely rule out artery blockage.
• We went over the risks of angiogram, the procedure itself and also had a discussion about the finances of this test and my treatment–since I do not have health insurance. More on that later.
• A heart pressure test is also important, but also quite expensive. There is a study of a new medication to control pressure in heart failure patients. He is going to try to get me in that study, which would require an overnight stay in the hospital–but all costs would be paid by the study.

So this takes us through the medication/testing route. Can I tolerate the maximum dosage of medication? If I can get there, will the medications improve my life and/or give me enough quality of life? Is there any artery blockage and, if so, is it going to healthy heart tissue? If the answers to these questions become no, transplantation is my only option.

Transplantation is a decision based on risk versus quality of life. There is a critical window for transplantation. It is between being too healthy and too sick–transplanting before health degrades to a level so poor that puts the success of the procedure at risk but not before trying to improve health and quality of life with medications. I am in the latter.

Dr. Alharethi went over some of the mortality rates for heart transplants, especially for OHSU and the prospects are pretty good.

He spent a lot of time in discussion of the finances of treatment. The Cardiac Transplant team includes a social worker who will call me tomorrow to go over options. He said this is not uncommon and that they work hard to find ways to help patients with financial hardships. It was a relief to have that issue on the table with clarity and understanding…and some hope. Rather than delay testing that I need right now he is going to go ahead and set them up. I’ll have to figure out how to pay as we go, and follow through on working with the social worker and other options for insurance support.

I really felt like I was getting a team that was working on every level for my health. We decided to move all my care to the OHSU Cardiac Transplant team. It was a beginning. A good beginning.

Just a note about care. When Dr. Alharethi began his own check of my vitals, he had me take off my shirt and lay down on the table. I thought he would place his stethescope on me to listen. He laid his hand on my chest for quite a long time. Jenny says he was probably feeling for my heart size. Probably. But it was a profoundly human, healing thing.

I am still pretty tired so going to leave it at this. Thanks to all for the prayers and thoughts and notes and cards. Thank you for your offers of support. We are definitely on the right path.

Mini crash but no burn…

Okay, it’s an idiotic thing–maybe a man thing. I heard we have a cold front coming in along with some rain (and maybe snow), so went out to the woodpile to chop and stack some extra firewood while it was still sunny outside. I know.

But I did it slowly, had Nitro in my pocket, and was supervised by Jenny and Maddie.

By the time I got back into the house I was a bit gray and wiped out, so I crashed on the couch with absolutely no sympathy from anyone and pretty much spent the rest of the day trying to get my energy back up. It’s idiotic, like I said. But just hanging around waiting for the next doctor appointment or run to the emergency ward doesn’t cut it either. So there’s a fine line between activity and rest–the latter following closely on the former.

It felt good to walk and move so much at the coast on Saturday. Chopping a bit of wood Sunday morning wasn’t so much about feeling physically good as feeling like a contributor and not an invalid. Though the old chest pressure returned for most of the afternoon on Sunday, it disappeared shortly after going to bed and I slept like a rock.

This morning, though I’m still tired, I feel pretty darn good. BP is holding at 98/56 and almost no pain. Two days to OHSU.

A walk on the beach.

It was a near perfect day in Cannon Beach yesterday. I woke up wondering how my body was going to react to the all-day walking, including up and down the beach and dunes. It feels good! I’m a bit weary, but I was more active yesterday than the total of the month before it. Blood pressure holding in a 93/56–pretty good for me.

I don’t understand if this is something to be trusted. Is it the digoxin that makes it feel better but doesn’t actually improve my health, or is it one of the ACE Inhibitors or the Beta Blocker actually kicking in and correcting something? Yesterday was the first day since the beginning of January that I didn’t have to lay down. Coughed very little. This sudden change in less than a week feels like a miracle.

Seems serendiptous that this change coincides with the appearance of sunshine !?

The worst thing on our big adventure was Maddie chewing all the seat belts off the jeep. They’re replacable.

I’ll rest a bit today and keep on pushing the heart medication.