Month: March 2018

This weekend was an excellent one. After the news from the doctor, I finally have hope again. Maybe if I have this heart surgery, I can get my life back. It was a stellar weekend with travels with my daughter and granddaughter to see one of my works of art. It was the first time it was seen by the public. It made me feel so good to share it with them and to see their response.

I went to my friends funeral. I wrote about how crazy it was to lose her, and how it scared me into getting all of my affairs in order.  I signed papers that day.

I also went to look at trailers. I have posted about loving to camp, and I had given up the idea of it for the last few weeks, actually the last couple of years. I have not been well enough in the months that we could camp here in Texas November – April.  But going to see the TAB trailers and discovering a group of women called Sister’s on the fly, who camp all around the US was giving me hope.  I’m allowing myself to dream of a future. Which is something after getting the scare that I did in January.

Please God, let the doctors discover and treat my heart so that I might get better. I’ll deal with the interstitial lung disease, but maybe this heart thing will give me back my energy.

” I know the plans I have for you,” sayeth the Lord
“Plans to prosper and not to harm you. Plans to give you hope and a future.” Jeremiah 29:11

Pusche

I was a bit freaked about today’s doctor’s appointments. After last month, when I told my pulmonologist that I had pain in my chest when I was doing the 6-minute walk text, they shuffled me down to Cardiology. I was bodily taken to another office because they can’t do any more tests on my lungs until they get an all clear on the heart.

A heart ultrasound and a stress test later, and we know how that went. ( See the previous post.) I’m back at University Of Texas medical school to get the results.  The cardiologist goes through the many tests and gives me an all-clear for most of them.  He does say my cholesterol is a little high, but they can give me drugs for that. I said, No thank you. I ask him how high is a “little high” and I tell him I’ll manage it with diet. He asks me if he gave me a heart-healthy diet plan. “Doctor, I have been doing this for six months long before this came up.”I’m probably eating the healthiest of any of his patients.

I must tell a back story… Long ago, 33 years to be exact I gave birth to a wonderful baby girl. I saw my gynecologist in the hall the next day, and I was walking holding on to the railing. I asked him when I could expect the dizziness and shortness of breath to go away. He took my pulse immediately and then it was a whirlwind of tests on my heart. Their thought was that I might have a hole in my heart.  They did a heart ultrasound. As I remember it, the ultrasound showed no hole. I was told to frequent a cardiologist for the heart murmur, and that was it. Three months later that cardiologist gave me an all clear.

So the cardiologist last month kept asking, “Are you sure there is no hole in your heart?”

I did get a clean bill of health for everything else but… There apparently is a hole in my heart.  He thought it was there since my daughter’s birth, but I’m puzzled because I recall them saying I was fine back then.

A hole in the septum between the heart’s two upper chambers is called an atrial septal defect (ASD). The tests also showed a slight enlargement of these chambers. So, I’m back to more testing. This time they are going to do an MRI on my heart.  They want to see how big the hole is.  I should have asked, do they have some gauge that lets them know, this size hole is o.k. But hey, you have gone over, and the next size up is not? Does it get bigger?

If it is too big, they will have to do heart surgery. They don’t open up your chest, but instead, they go through your groin.  This is not sounding fun.

The next appointment is at the Pulmonologist down the hall.

The pulmonologist is not that concerned about my hole in my heart. Apparently whatever tests they wanted to do, but could not do because of other heart problems they can do with a hole in my heart. The fellow sees me first and tells me that the next test will be a bronchoscopy. He explains that they will go through my nose, into my lungs and go through each area push water in there and suck it up. “Hey I say, from all that I have heard putting water in the lungs is not a good thing.” He assures me it is fine. They will admit me to the bronco suites. “You make it sound like a cool vacation,” I said envisioning rooms decorated with dinosaurs. He tells me it is a very easy procedure. “I have done 600 of these; your doctor has done far more than that. You will not remember anything and be very tired for a day or so after.

He says the sleep study showed mild sleep apnea and he is not worried about it.

I ask him, “So idiopathic interstitial lung disease is off the table right? I thought the word idiopathic meant that you didn’t know what caused it.”

“True.” he says “but idiopathic presents itself differently.” This is when he takes me to my CT scan and shows me the white film in parts of my lungs as compared to idiopathic interstitial lung disease, which I see has more of a popcorn appearance.  I’m immediately relieved.

I tell the doctor I did give up my feather pillow.  I hope he will encourage me with praise. “Your feather pillow did not cause this.”

“What? How do you know?” I think longingly of my sleeping comfort.

“Because we did a blood test for that.”

So apparently I gave up my feather pillow for nothing. I’m not going to fuss about it, after posting and hearing how many people had breathing problems from using feather pillows, I already ordered some new ones. I won’t be taking any chances. I loved my feather pillow, but it is not to die for.

I tell him I’m walking around more without my oxygen, but the moment I get busy, I need it. He said this is a good sign.  It is also more telling of the heart. Apparently, if you are short of breath all the time it is your lungs, if you are short of breath on exertion it is most likely your heart.

The doctor comes in and switches things up. I guess this teaching hospital is a good thing. You get two opinions.  He says he consulted with the cardiologist and they will schedule the MRI, in the meantime he wants to see another CT scan before the bronchoscope. He wants to see if there is any improvement. I chime in. “Wait? This could improve? I thought this was a progressive disease?”  The doctor says if there was infection it could have been that.  I do have Interstitial lung disease, but he wants to see a CT scan before the bronchoscope.

Then he says, “you do need a CPAP machine. ”

I looked at him and said.” I thought it was mild?”

He insists, and I chime in.

“Let’s look at this. I have had several procedures done in the last week. You are asking me to do another CT scan, and then possibly a bronchoscopy. Meanwhile, I have a heart MRI, and possibly heart surgery ahead of me. I pay a good portion of a lot of these tests and getting measured for a CPAP machine means another sleep study and $300.  So, if you had to pick which tests were a priority….”

” We will wait on the CPAP.” He concedes.

How am I supposed to feel? I don’t know. I just keep doing the next thing praying, working on my diet and exercise and moving forward. I did call my daughter’s dad. You get the Cupie Doll I told him, I just got back from the doctor. He chimes in. “You have a hole in your heart. I knew it. ”

I do know I have less breath and less deep breath. I think that is the ILD. But if I can function that way, watching out for bronchitis, etc. that will set me back and have my heart fixed so that I can do more without exhaustion, I think that will be good.

Feeling hopeful,
Pusche

Today I had a conversation with a vendor.  I remember I had heated words with this vendor in the midst of the big job last year. But then, it was a time in the business when everything was stressful. I still needed to work with them and order from them. This conversation yesterday wiped out those bad feelings from before.

I had asked the vendor, upon my last order, if anyone had mentioned a problem with the clay that I order. You see, I have to melt this clay. So, on any given day, in my studio, there are crockpots and hot plates with pans heating up this clay. Two months ago I had my interns set up a table in another room so that the clay will melt and smell out of the main work area. I did this in the hope of possibly protecting my lungs.

An art studio is not the best place for someone with lung problems and being that I am a very successful artist I don’t want the doctors or my health to determine that I must give it up.  We have made lung health important. We have done that by providing workers with masks and respirators.  In fact, when my daughter’s house burned down, I was able to take those respirators with me for all of those who entered the building. I think I provided 5 or 6.  But this melting of the clay was something that I could control, and as it compares to my lungs, I need to take control of something.

So I began to have conversations with my vendor about the clay. When I placed this reorder I mentioned it to the woman who I believe is in charge of this business. She answered the phone and took my order, and on the chance that the last guy didn’t mention my concern I asked her.
“You have been the topic of conversation in the shop of late.” She said. “Not by name but by association. We have asked some of the big users of our products if they have experienced any problems. So far no one has. But you do work with so many things.”

Yes, I do. She knows because I purchase from her. None of the following are consistent, but we do use them during different stages of the process.

Plaster- Plaster is used for the mother molds. I’d like to say we always use a face mask with plaster, but it is not so. Here we have been less diligent.

Resin- We do resin with respirators, and at times if we are also working with fiberglass we look more like a hazmat group then a studio of artists. In honesty, I am leaving more of the resin to my workers. I love this luxury. These are the perks of having people who work for you.

Rubber- there is different types of rubber that are used for molds. Mold making happens over several days.  I have never thought about wearing a mask during mold making because the rubber really does not smell bad.  I have heard rumors of one mold maker having health problems. I am not sure what the health problems were, or what type of molds she made, but I was lead to believe it was the rubber we use.  So the last time I wore a respirator or did it outside with a fan blowing away the fumes.

The clay that is melting in crockpots is a waxed base clay. We heat it up to make it malleable and then once it is on the sculpture, we often hit it with torches to soften it or to smooth. Sometimes we brush it with heated vaseline, which occurred to me yesterday. When we smooth it, we are heating up a small metal container of petroleum.  That can’t be good. Again, I no longer do a lot of the smoothing. Much of the smoothing is done by others. I come in sculpt and say, “Smooth all of this out here.”

Recently we started painting some small figurines, well, my interns are painting them after I give them the instructions. One intern, who is hyper-aware of lung things because of my new issues saw that it requires ventilation. I make interns aware of the dangers, suggest alternatives, such as have a fan blow the fumes away and open a door, and everyone knows where the masks and respirators are.  It is their prerogative about wearing them.

However, when I’m in the studio working, arrangements are made. For example yesterday I was sculpting in the studio. Well, two others were also working. One was grinding small resin pieces, and the other was painting them.  So they got to work outside, while I worked inside.

Back to my vendor. She asked me what happened and I told her about the doctor who scared me in January telling me I might have 3-5 years to live.  ( That death sentence is now taken off the table. But it was frightening at the time. ) This vendor had such great empathy and said, “I remember when they diagnosed me with pancreatic cancer last year, getting that news was devastating.” She said.

My heart sank. My mom had pancreatitis, and I am painfully aware of how difficult that was for her. We became quite informed about pancreatic cancer and new that of all of the cancers, well… that one kills fast.

“I beat it. I watched my brother die of it, and I beat it.”  She went on to tell me about a surgery and other things, and I was just on my end of the line thinking, “you just have no idea what other people are going through, what they don’t tell you.”  If we could all keep that in mind the world would be a better place.  I am reminded of this upon every doctor’s visit. It is very humbling as I see people with very little lung capacity or being wheeled in wheelchairs or a burn victim, and somehow I give thanks for right where I am. With all that I am dealing with, I am thankful by comparison.

So, this conversation gave me a new camaraderie with my vendor and softened our communication.  In the meantime, we are extra cautious in the studio, and I’m searching for a handyman or perhaps a son-in-law who can put in a shop vent to further move air out of that room. My interns are excited because they feel it will also help in the hot summer months to move air through. Of course, an intake vent is also important.

New materials are on their way, which means new creations and I’m excited that I can still create, for now.

Inspired,
Pusche

LINKS I HAVE FOUND ON STUDIO VENTILATION

Many of my friends where very helpful. One person reported that he could help me figure tit out because he took an industrial hygiene class on ventilation.

This guy tells how he created his workshop ventilation.

Photos are inspirational for me.

Love this over the work area hood ventilation.

Someone suggested kiln vents.  

I purchase this vent from Amazon