Step down

I made it to the step down floor yesterday morning about 3 a.m. What a relief. Bigger, more quiet, a bathroom with a SHOWER, more freedom, and no more heparin shots. I was able to get in the shower yesterday after almost a week in the ICU unit. I got to take a walk from one end of the hall to the lounge area with my husband. We found a banana in one of the patient/family kitchen nooks and I hid it away for this morning. For some reason bananas are a hot commodity. For breakfast they offer peaches and pears but they come in sealed plastic cups full of heavy syrup. I keep having issues with low potassium so I'm concerned about getting enough. At home I usually have coconut water mixed with orange juice in the morning. I can at least hunt down orange juice here. But I also worry about blood sugar spikes since they monitor EVERYTHING that goes in and OUT. They will happily give me pills and medicine for anything that needs it, but I'd rather let my body try to work that out with some natural food. Natural food around here seems to be an unusual thing.

The Hickman was not as traumatic as I was imagining. Everyone told me the hearth cath was nothing to worry about but they just numbed the area and started cutting into the jugular vein. Isn't that enough to make someone scared? I suppose if it was over and out, it would be different but they placed what is called a Swan-Ganz in my neck. The tube remained in my pulmonary artery, up through the heart and out my neck for a couple days while they monitored the pressure inside. Anyway, I thought it was traumatic. Much to my relief they gave me something to make me groggy when the Hickman was placed. I remember the doctor talking to me about Tony Packo's and the bridge in Toledo but don't remember much until I was back under the care of my nurse. They said I was upset with the Novocaine shots in my chest and they upped it. I don't remember but that sounds like me so I believe them. I was itchy after the surgery so they gave me Benadryl through the IV, probably contributing to my already drunken state.

They are upping the meds today and I am hoping to have some progress concerning me going home soon. They say I need to talk to this person and this person, so on and so forth, but everything has to be ordered and reviewed and faxed to Santa's workshop and back so it takes forever. Okay, I'm kidding about the Santa part but that's what it feels like.

Hickman

Today is the placement of the Hickman cath. Hopefully. It will be placed in my chest so that the IV med can be distributed. For now it has been in my neck from where they did the heart cath. Mostly I've spent the last few days riding out the effects of the medication as it is raised to a higher dosage slowly. Yesterday I experienced a bigger headache, more flushing, and some leg and jaw pain. But, it eventually dissapated. The good thing with the Hickman is I will get out of the ICU, into a regular room, and have more mobility and privacy.

Everyone wants more details and it is really hard to give too much at this point. We know, left untreated I won't have much time left. We won't know how much the meds are helping until about two months down the road. I will be continuing the therapy, raising the dosage about once a week at home. At that time I will have some tests to see if the meds have helped stabilize the lungs, perhaps letting the right ventricle of the heart become stronger. That is what we really want to see because I could stay on the meds and have a few good years with a lifestyle change. If not I will be reevaluated on my placement on the transplant list.

Then we get to the transplant part. I started the tests and evaluations required. Of course they want to make sure the person receiving new lungs will be able to support the new lungs--both physically and mentally. For now I'm still being considered and then will be placed accordingly, depending on how I am doing on the meds and all these other tests. From what I understand, if I'm approved and don't do well then there is a chance to move up. But, as with the meds, we still have to wait and take it one day at a time. The double-lung transplant is a risky surgery and doesn't have the best outcomes for lengthening one's life. (Maybe I'll post those statistics at a later time.) But when you don't have a choice, it may be the only shot you have available.

I cannot express how wonderful everyone has been. My mother-in-law has been an angel, providing me so much comfort. Friends have banded together to help teach my daughter and providing food for my family. A lot of you have asked how to help and what we can do to prepare for the future. I think we will be needing a lot of help so ideas are welcome.

Tubes and wires...

Heart cath went fine this morning. Not the most pleasant experience but in the scheme of things... well... you can understand. What they found confirmed all they suspected so far, so the port was left in my neck and out of it runs all sorts of tubes, ports, etc. They started the Flolan at a very low dose this afternoon through the port. Tomorrow they will try increasing it. It seems that every time someone comes into the room they are coming at me with something to attach, draw, or poke me with. Much to my dismay, I have to have shots in my stomach twice a day as a standard protocol for bed-ridden patients in order to prevent blood clots.

I'm supposed to be moved to another room so I really cannot get comfortable. I have a family member with me and have been grateful for her help and support. With as bad as it already seems, the day would have been a whole lot worse without her here.

The transplant team is supposed to start their testing and evaluations this week. Supposedly they have to pick out the best candidates to receive new lungs. There's a lot involved, including your immune system, your age, your overall health both physically and mentally, and even the support team behind a patient. So, keep rallying the troops!

Friends and Family

I am so very thankful for my friends and family. It's reassuring to have so many offers of help... everything from rides to food for my family. Even my friends far from here are doing what they can, including sending well wishes and keeping me in their prayers.

This weekend was a whirlwind as we made plans to prepare for my stay in Cleveland. So many calls and emails were left unanswered as we knocked things off our list. The emotions are so raw. My mood ebb and flows through the day. I'm trying to stay focused on the positive but at the same time I just want to scream. Perhaps I'd even have the urge to kick something if my feet were not so swollen and weak.

One of my wonderful friends drove me over last night and her mother, who works at the Clinic, opened her home to me and made sure I got here early for my appointment. What a blessing and how so very kind they are. I cannot thank them enough... my words of appreciation seem so little in comparison. Having always been so independent and strong, it is hard to be at the receiving end. 

In the short time I was home we received two very large dinners and another friend, who makes the most awesome quilts, dropped off one of her treasures to cuddle with. We have several friends stepping up to help with our daughter so that she can still do her studies and be able to stick to her scheduled activities.

A huge thanks to everyone. This is only the beginning... so for those of you insisting on doing something and haven't been called upon yet, you will have plenty of opportunities. I have promised to keep you all updated and involved the best I can. Many of you know me well enough to know how hard it is for me to be this open, to ask for help... and I will struggle with a different level of discretion. Maybe perhaps the universe is telling me it is time to talk about me. After all, someone else may be looking for the answers I'm looking for. I've been searching the Internet to find others who will share their experience with me. I've been reading their stories and their blogs and getting a feel for what's to come. The success stories offer me hope. And I certainly pray that after this struggle, it'll be my story offering someone, somewhere, hope.

Diagnosis

The Cleveland Clinic gave me a diagnosis and it's not the news we were hoping for. I have pulmonary veno-occlusive disease and it is aggressive. It's a rare disease and it's almost impossible to pinpoint why or when it started. I will be starting the approval process of getting on the list for a double lung transplant. I will be back to Cleveland for another test and then they will try a medicine through an IV pump with several days of observation before releasing me to do the IV meds on my own. They are hoping this will stabilize me and perhaps make me more comfortable.

A lot of people are offering to help and we really appreciate it. We've already called upon several of you and your help has taken some of the stress off of us. We will definitely be relying on others as we have no other option but to lean on our friends and family at this point. But, please be patient with us through this difficult journey. The calls can be exhausting and more than enough people have offered to watch our daughter or keep her overnight. At this point in time we are going to do our best to keep some sort of normalcy to her schedule and have her sleep in her own home as much as possible. We feel this is important. I had a talk with her about what the future may hold and I think we are all trying to ease into what may be...

Oxygen

It has been a month now that I've been on oxygen. I think I would prefer to complain about how inconvenient it is, but it helps my oxygen saturation level. So, it is difficult to gripe about something that plays such an important role.

I haven't ventured out much since getting on oxygen. But, when I have gone places I've noticed people looking at me. Usually they quickly look away before I can give them a reassuring smile. Being that I'm in my late thirties, I assume they may wonder why I'm on oxygen. No stranger has asked yet.

The first few nights I felt depressed about being hooked up to a big air compressor with tubing in my nose. I hated listening to the hum, click, swoosh, hum, click, swoosh of the machine that has taken over the living room. I avoided looking into mirrors. I suppose, like those who see me when I'm out, I too was avoiding my response. The tubing that snakes across my face is, for the most part, the only obvious outward sign of my illness.

Most people walking around with oxygen are older than I am, but there are young people on oxygen for various reasons. I'll leave you with words from Christine, a 43-year old who will be on oxygen for the rest of her life: "I want to let people know that even those of us who use oxygen, whether it's part of the time or all of the time, our lives are what we make it.... Life is worth living no matter what your challenges are. My challenges get me down but I don't let the keep me down. I wear a smile and look forward for those happy days..." You can learn more about Christine and why she is on oxygen at her blog, Living on O2 For Life.

Update

The last few months have been a struggle as my illness progresses. Doctors here have been unable to get to the root of the problem so I am being referred to the Cleveland Clinic and hope to have some idea of what to do next by the end of this week. There is something wrong with my lungs and they are thinking that this is what induced the congestive heart failure.