MIA

It has come to my attention that I’ve been missing in action at some of my usual haunts. And, people have been peppering me with reminders... they still want updates on my life. I can tell you this: The last couple of months have been stressful. The new year brings unneeded nonsense for the chronically ill.

Unfortunately I’ve reached a point where I am now having more bad days than good. I am back to frequenting my old suite at the emergency room. And since it’s the first of the year I have spent hours on the phone and online doing insurance stuff—out-of-network waivers, calling for pre-authorizations, etc. For example, I had a certain pill I knew I was going to need a pre-authorization for. This meant that the doctor writes a prescription for 30 pills. The insurance says, “Um, no, we will only help you cover 24.” But I need 30. Then that means having to wait for the doctor to write a letter to the insurance company saying why I need 30. Duh, one for every day of the month. Insurance company finally says okay. I finally get 30 pills. Meanwhile about 4 days have gone by. Ack! Last year when this happened I paid about $70 out of pocket for several pills just to have enough medicine until they were able to fill my prescription. Well, this year I was a little more prepared and was cutting pills in half and half again so I could make 3/4 pills. Then I pieced together 3/4 pills out of the 1/4 pills I saved from the ones I cut and saved. That way I had cobbled together some reserves for those days when I had to wait for my insurance company to approve the pre-authorization.  But this. This is stuff that makes me stressed; mad. And this is stuff that kills patients. This is why people hear about patients running out of pills or rationing something like insulin. It’s ridiculous. If a doctor says to take 30 pills, then one shouldn’t need to have a doctor submit a letter explaining why they need them.

I realize I left my blog hanging at this summer. I had the Epogen injections a couple times and when they didn’t produce the results the doctors were looking for, they started me on weekly iron infusions. My ferritin stores increased and my hemoglobin increased slightly but it never went over 10 grams per deciliter, which is what they were aiming for. I am still anemic and tired all of the time. My creatinine is slowly creeping up. There's still talk of the kidney transplant in the near future. There's not anything I can do to stop it; no diet or supplements are going to fix it. My anti-rejection medications are damaging my kidneys and I cannot stop taking them.

Among this storm, there's a rainbow: I made it five years! If you are not familiar with lung transplant survival rates, I challenge you to google them, and then you'll understand why five years is a big deal.

Celebrating two years

My two-year lungiversary went by with little fanfare, much to my dismay. The only ones to acknowledge it were those within my household. But, that is because I have declared it an official holiday, penciling it on the calendar and announcing it days before. For me it is a second birthday. I'm sure it's a feeling that only fellow transplantees can understand. Silly I suppose. But when cards and greetings didn't roll in, I felt a bit... a bit, well, forgotten. Then I had remind myself that almost dying and getting a transplant was a battle that was how long ago? One year? Great. Two years? Come on. Life goes on. No one wants to have to remember to celebrate ME twice a year. Except for ME.

Thankfully, I had less anxiety this year as I reached the date. I think this is because I now have a relationship with my donor's mother. At this time last year, it bothered me greatly that I didn't have anyone to focus that energy on. I had reached out to the family with a letter through LifeBanc and told them how much I thought of them each and every day, and how much their gift meant to me and my family. I wanted them to know that every single breath I take is because they said yes to organ donation. But, by the time I had my first anniversary I had not heard back.

Eventually, I did hear back and since then, we have exchanged several letters. This communication means so much to me. Even though there are no words powerful enough to express the thanks I feel for this gift, at least his mom knows that this wonderful gift is allowing me to spend more time with my family, and is allowing me to selfishly celebrate two birthdays.

Health-wise I am holding in there. I'm working on getting that room in the ER named after me. Yep, I'm back to my old record of going in once a month with the usual--migraine, vomiting, and dehydration. I don't know why it's happening and wish it would stop. Also, I recently found out the pain in my left ankle I have been walking around with for over two months is tendentious. I did not do anything to it... supposedly the medicines can cause it. I guess I have been getting so used to walking around in pain and not realizing what is normal, or rather the new normal. Basically any time I have had aches and pains the doctors usually tell me the medicines can cause it and then they shrug it off. So with this, I just kept shrugging it off until I couldn't take it any longer. But surprise, now I am hobbling around on a walking boot. I'll see the podiatrist again in a couple of weeks to see what my next step is.

Certainly not the fanfare I was looking for, but I hobbled right along and continued my celebrations throughout the weekend. I look forward to celebrating my real birthday soon enough... and perhaps I won't be hobbling around for that one.

Eighteen Months

Eighteen months.

Eighteen. I just caught myself humming the Alice Cooper song. I got distracted.

I've been distracted a lot the last few months but over all, I've been relatively well enough. There seems to be transplant patients who do better than I do, who come out of the hospital without any issues what-so-ever, feel great, and their blood-work and kidney and liver functions are wonderful. Then, there are transplant patients who are constantly ill and always in the hospital with infections, breathing issues, fungus or bacteria growing in their lungs, low white blood counts, and/or low kidney functions. I have discovered it's not unusual for some lung transplant patients to need kidney transplants some time after their lung transplant because the medications can destroy the kidneys. Also, the medications transplant patients take can destroy bone and weaken muscle. Some patients have problems with osteoporosis. And not life-threatening, but certainly inconvenient, are the other usual side effects of the medicine, like tremors and forgetfulness.

Anyway, I seem to be somewhere in the middle. Nothing majorly wrong, thankfully, but enough to limit me. I've adjusted my days and weeks accordingly. It does frustrate me but I think I'm getting somewhat used to it. Perhaps I'm dealing with it more efficiently. Or at least I am trying. Transplant life is different. But it's my life now and I don't complain.

My latest trip to Cleveland revealed that my pulmonary function is wonderful. My meningioma (brain tumor) has not grown. Good! We are still working on controlling the migraines. I have pretty much run the gamut of migraine medications so my doctor has switched up some of my other medications to see if we can have any success that way. I cannot take some migraine medications because they will interact with what I'm already taking, or they will be too hard on my kidneys (which are not functioning all too well due to the harsh medications I am taking). I was also allergic to a migraine medication I tried recently, adding to the already limited list of options. I also completed my third round of Botox injections into my head and neck and my neurologist raised the dosage on one of the preventatives I am on.

At this point we will see where this takes me. I am having blood-work done weekly until my levels stabilize. And, I am focused on reducing my migraine triggers and trying my best to stay out of the ER. I also ordered new prescription glasses that have rose-colored lenses. A rose tint is supposed to help reduce light sensitivity, which many migraine sufferers have. Maybe in a few weeks I'll be humming a John Conlee tune. I'll let you know.

Six months and beyond

It is actually closer to the seventh month mark but we were checking out some other issues and that set us a little further behind... or ahead, depending on how you look at it. I went to Cleveland with a lot of anxiety since quite honestly, I had not been feeling all that well the last couple of months. But, I have good news. No rejection.

I saw a hematologist about the blood issues and for now I am on a wait and see what happens basis. They may take me off the Valcyte at the one year mark but for now they won't chance that. So, I must continue the Neupogen injections. So, until then, I will have to suffer through the side effects and I will just have to deal with them the best I can. They made a few adjustments to my medicines and will continue to do so as needed. The whole thing is a delicate balance. I'm already at half of the suggested dose of Valcyte. My donor was positive for CMV, while I was negative. Take the Valcyte away and I'm at risk for infection. Being that I'm immuno-suppressed, getting any infection is bad. Of course, it can be treated... but, my body is not very strong right now. It all makes me nervous.

The migraine treatment is not going as well as I had hoped. Thankfully I am staying out of the ER. But, I haven't had any luck weaning off the triptans. The preventative has not kicked in yet even though I am now at the full dose. I'm still waiting for another miracle. The insurance company constantly fights me about the dosage of the triptans, so I would really like something to happen soon. I'm afraid that one of these days I may not have enough medication. I had a pharmacist tell me I may need to "white knuckle it through a few days." Obviously he has never had a migraine. Sure. Try vomiting for 24 hours straight and not be able to take your life-saving anti-rejection medications. Then talk to me about white knuckles.

I was on a mission this trip to Cleveland and with help from a couple of friends I was able to pull it off. Thankfully we didn't run into any problems with traffic or weather or have any extra long tests, procedures, or ER trips beyond some additional bloodwork. In all of my trips to Cleveland I had always been too sick and too hurried to see or do anything. I had never been anywhere other than to the clinic or the hotel. I knew about all the great places in Cleveland but my adventures included stepping out a few times to buy slippers at a department store and to the pharmacy to pick up prescriptions. But this time changed all that.

First thing on our to-do list: we went shopping. We picked up a bag of toys for the Cleveland Clinic Children's Hospital in memory of our dear friend who died last year. We also put together a a bag of snack items for families staying at the Ronald McDonald House in Cleveland. We delivered the items when I was finished with my appointments.

Then we visited the Rock and Roll Hall of Fame. We walked halls of memorabilia taking us through a timeline of history from the birth of rock through the present day. It was interesting seeing stage costumes, props, and instruments of the legends. I will have to admit that after comparing the 1980s heavy metal case, the music of our formative years, with all the other decades, I am surprised we turned out okay.

I lost more than two years of my life. I am still picking up the pieces. It is still harder for me to do normal things and it takes longer for me to do anything. I lost a lot of muscle strength while I was ill. I am doing pulmonary rehab and working on some strength training and cardio with supervision. But with the injections I still have a lot of joint and bone pain so I am limited. It is expected. I have weird side effects from the meds. I deal with tremors, some neuropathy, tingling, headaches, aches, moods. It is the new me. I cannot do what I used to do. I feel different. I have to be different obviously because of various things. It is okay. It is better than the alternative. It is not easy. But, I am okay with that.

This week was amazing. It was on a roller coaster of pain and emotion and sheer happiness. I was among the most sick, the healthiest, those in pain, and those who were happy. I was scared and delighted. I smiled, I cried, I laughed with old friends, and laughed with new friends. I was thankful. I came home to my family, with no rejection, again...

Medicines

See that little group of words, down towards the bottom, in the right hand column? Notice how big the word medicine is? That's because, as of this date, I have blogged more about medicine than anything else. I was hoping to change that one day, but today is not the day. Several people have asked for more details concerning the type of medications I take, so here they are, in no particular order.

Veletri is an intravenous medicine that is given continuously through a catheter that runs into my chest and straight to my heart. Veletri is an epoprostenol, which helps dilate (open up) blood vessels in the lung, allowing blood to flow more easily. The PVOD has scarred much of my lung tissue and there will be no regeneration of this tissue. However, the Veletri is opening up what is left. (The scarring the PVOD left behind causes the backing up of blood in the pulmonary artery and that is what caused the right sided heart failure. The Veletri helps relieve some of that pressure on the heart.)

Digoxin is a medication used to treat heart failure. It helps make the heart beat stronger and with a more regular rhythm. The interesting thing about Digoxin is that it is made from the leaves of the digitalis, or Foxglove, plant.

Furosemide is a diuretic that is used to treat edema, or swelling. Unfortunately, some diuretics, like Furosemide can cause hypokalemia, low potassium levels. So, potassium supplements are often prescribed.

Spironolactone is another diuretic that treats edema. It's actually a potassium-sparing diuretic. However, I take this in addition to the Furosemide and still have to take Klor-Con Potassium several times a day due to hypokalemia.

Furosemide and Spironolactone are often called water pills. Without them I'd probably look like the Stay Puft Marshmallow Man. Those little pills do amazing work.

Warfarin is an anticoagulant that is used to prevent the formation of blood clots. A lot of people refer to these as blood thinners. Warfarin is essentially rat poison. It was created in 1948 and used to kill rats and mice. Lovely, eh?

In addition, I take a Vitamin D3 supplement. Most people, especially those living in Ohio, are deficient in Vitamin D3 and should have their levels tested. Research has shown that Vitamin D3 is essential for aiding in the absorption of calcium.

I have very low blood pressure, so I walk a fine line between what medicines I can take and still be properly treated. I've been asked why I'm not on this or that, but I leave such medical decisions up to my team of doctors--pulmonary doctor, cardiologist, transplant doctor, bone doctor, allergist, and more. They include some of the best at Cleveland Clinic and are specialists in their field. And, just as their patients are different, so are the treatments they prescribe.

The big switch

My pulmonary doctor said we could look into switching to Veletri, from Flolan, after my right heart cath. As promised, he had the wheels in motion by the time I was home. Last week an Accredo nurse came to my house to monitor me during the switch.

Basically Veletri is the room temperature stable version of Flolan. It's the same medicine but contains a preservative that reduces the need of the medicine cartridge to be sandwiched between ice packs constantly (with the exception of those really warm days). Since Veletri has a different chemical structure, the nurse monitored my vitals for a short time to make sure I had no adverse reactions.

Several cartridges of Veletri can be made at one time and stored in the fridge until I am ready to use them. So now, when I travel to appointments, I should not have to mix medicine away from home. I can plan ahead on what days we will mix cartridges and then have some flexibility on the other days.

Not having the constant need for ice packs is liberating. It also lightens the IV pouch by about a pound. And, that makes a big difference when I must carry the IV pump with me everywhere.

Seeing red...

I've heard stories, from others with permanent IV lines, about the tubing disconnecting, the IV pump beeping in the middle of the night, medicine cartridges running empty, and waking up in either a pool of leaking medicine, or worse yet, a pool of their own blood. One story came from a friend who forgot to clamp the Hickman tubing before disconnecting the extension tubing. There's a little device, mine is called a BD Q-Syte, that goes on the end of the tubing that is spring-loaded and holds back the powerful pressure from one's heart. It is replaced every week to reduce the risk of infection. When a person forgets to clamp and takes this device off, blood shoots out. And I've heard, it's a lot of blood. That's why, when I change this little extension piece, I chant: "Don't forget to clamp."

Yesterday my BD Q-Syte malfunctioned on the way to my mother-in-law's house. I felt something wet on my shirt when I realized it was blood I pulled the tubing out of my shirt. Blood and medicine were leaking from the joint. We pulled up to the house and hurried in to change the piece, which we assumed had gone bad. (Thankfully I am a good patient and carry my suggested medic bag, that includes extra medical paraphernalia, tubing, a backup meter, batteries, etc., wherever we go.) We acted quickly and my husband got the Accredo nurse on the phone. She assured us we did the right thing and that the line would eventually run clear. Sure enough, the blood in the line was eventually pushed back by the medicine but it had been a relatively frightening experience.

This is the tubing I keep tucked in my shirt. The white tubing (and clamp) is part of the Hickman catheter that goes in my chest and directly to my heart. The round thing on the extension tubing is a filter. The joint between the extension and the white Hickman tubing is the BD Q-Syte device. That is the piece that malfunctioned and caused blood and medicine to leak out.

Delivery Day

Ever wonder why you never hear from me on Accredo's delivery day? I'm busy counting and sorting 4 weeks worth of medicine vials and diluent, syringes, cartridges, tubing, dressing kits, and more... 

Medical paraphernalia piled on my kitchen table...

A healing heart...

I returned Thursday night after two days of testing at the Cleveland Clinic. I'm still gong through the necessary steps for the lung transplant listing, and had several tests and blood-work done. The poking was never-ending. Every time a nurse, therapist, or doctor turned the corner, she/he was ready with some form of needle. I had blood draws from both arms, a blood draw from the wrist, a small series of injections on my upper arm for allergy testing, and the Hepatitis A and B vaccine in the other upper arm. I can be thankful though that everyone I encountered was pretty good with their aim. And, I got my favorite phlebotomist for the main blood-draw that required several vials. My husband saw her in action and commented later that it was like watching a magic trick. One minute she had the needle in her hand and the next it was in my arm and blood was coming down into the tube. This girl is good.

The two different blood draws at the same time is something that was implemented after an error in blood typing took place at Duke University about ten years ago. So now, in order to double-check and confirm a recipient's blood type, they have two different people draw one's blood. Two people armed with needles and two different pokes. Thanks a lot Duke University. I've had my blood typing done a couple times before and I am happy to report it has not changed. I'm still the same type I was a couple months ago... and the same type I was years ago. No surprise there. So, there should be no mistakes in that department, right?

The heart can be a resilient organ. And, if healthy otherwise, and treated well, it can bounce back from stress and trauma. And my heart, I'm happy to announce, showed a tiny bit of improvement. And, even though it was a tiny bit, I was happy. I have been told that, in my condition, as long as things are not getting worse, it's good. The heart is still working hard, still has a bit of fluid around it, and the the right side is still dilated. But testing reveals it's not working as hard as it was.

The diseased lungs appear to have responded well enough to the Flolan treatment. The Flolan dilates blood vessels and is very risky. It's an extremely powerful drug that is administered through IV tubing that runs to a port in my chest--a direct line to my heart. It is dispensed through a pump that I wear around my waist and the medicine cartridge must be kept cold--sandwiched between ice packs--at all times.

But drugs are stupid. Flolan doesn't just dilate blood vessels in the lungs. It dilates blood vessels everywhere. So, some of the side effects I have to live with include leg pain, jaw pain, and headaches. But, it's keeping me stable and that's the important thing.

I am still at a fairly low dose of Flolan, so we are going to try raising it again each week in very small increments now that my body has had some time to get used to it. When we attempted to raise it after returning from the hospital I didn't do well. The side effects overwhelmed me and my blood pressure dropped significantly. I was miserable for days. The doctor had me drop back down to the previous dose and I felt better. It's not unusual to feel awful the first couple days after increasing Flolan, but side effects should always return to a tolerable level and one should not experience a significant drop in oxygen saturation, blood pressure, or experience trouble breathing.

The lungs are not so resilient and a transplant is in my future. We know that things can change at any time. So, the social worker says it's time to think about fund-raising because we will need help. The transplant surgery is extremely expensive, even with insurance. And, the medications needed afterwards are expensive. There are other costs, too. There's the hospital stay, the after transplant care, lodging, travel expenses, food, etc. It feels uncomfortable to put this need out there but we cannot get through this alone.

There are non-profit organizations that hold donated funds for transplant patients and the social worker gave us information for a couple organizations to consider. I struggle with this. I never intended to be a financial burden on my family. We had always hoped to pay off the house and the student loans and help our daughter get through college when the time comes. We've always lived within our means and budgeted trips and larger purchases, avoiding the all powerful credit card trap. But this illness has ruined all of that planning. We now owe thousands in medical care. We are still paying on medical care I received last year. And, the bills continue to roll in, adding to the ever mounting debt and stress. So, even though I struggle with this, I know I must, for the sake of my family, be open to this type of help.

Speaking of help... April is National Donate Life Month. If you want to learn more about organ and tissue donation, visit the Donate Life website. Donate Life is also on Facebook.

What's this PVOD thing again?

A lot of people have been asking specific questions about PVOD, or Pulmonary Veno Occlusive Disease. So, I'm going to do my best at explaining my version of what happens with PVOD.

PVOD is a rare condition that causes Pulmonary Hypertension and symptoms can include dyspnea, dizziness (and fainting), fatigue, edema, and a dry cough. In PVOD the small pulmonary veins in the lungs are affected. Pulmonary Hypertension should not to be confused with Hypertension, or High Blood Pressure. They are two different monsters and are very different.

In PVOD, I imagine the lungs as a tree with big branches and small branches coming off the big branch... and even smaller ones coming out from the small branches. Then I imagine someone snapping off those smaller branches until there is nothing left but the bigger branches. Basically, that has happened to my lungs. PVOD has destroyed all those small branches. And unfortunately, those branches are not expected to regenerate.

No one knows why a person gets PVOD. There are so few of us with PVOD they cannot make any connections. Researchers have a general idea of what we've been exposed to and there are suggestions as to what it could be linked to, but the statistics are just not there. In fact, if I've done my math correctly, a total of 32-63 people are diagnosed with PVOD in the United States each year. Compare that to over 232,000 cases of breast cancer diagnosed each year in the United States. Chances of being diagnosed with PVOD any given year is approximately 1 in six-million. I have a greater risk of being struck by lightning: 1 in 700,000, in any given year, in the United States.

I wonder if I should I buy a lottery ticket.

Anyway, there is no cure for PVOD. It is somewhat similar to stage 4 cancer. I know it's going to take me down, but I just don't know exactly when. And, at this point, treatment options are extremely limited.

A double-lung transplant is an option for some. But, it's not a cure. Double-lung transplants are risky and the recipient has about a 50% chance of surviving into the 5th year on the new lungs. As doctors explain, when a person has a double-lung transplant, they give up one problem for another.

The current treatment for PVOD is to use a variety of medications that dilate the blood vessels and target the symptoms of the PVOD. Other medications are prescribed to help counter pain and side effects of the drugs. It's a vicious cycle. This treatment can include the use of oxygen and additional heart medications when the heart is exhibiting signs of failure. None of these medications cure PVOD. Medication may keep a patient stable or make them a little stronger. But, medications can also do nothing, and in some cases, make things worse.

There is mention of stem cell research eventually providing treatment for Pulmonary Hypertension. Researchers are hoping to find something that will regress the disease. And, perhaps they will find something eventually but it may take many years to research and test, and then gain approval for such treatment. More than likely it won't happen in my lifetime.

I'm thinking a lottery ticket is sounding pretty promising after all. Perhaps it would increase the odds of being able to pay off my medical bills...

Titrating up...

Wednesday was my follow-up at the Cleveland Clinic. It was a long day but fairly simple - a walking test, in which they measure oxygen levels for six minutes of walking; blood-work; and a visit with the doctor. The good news is that I appear no worse. So, we will continue the Flolan therapy as planned and hope for the best.

Thursday, as instructed by my doctor, I raised the Flolan at home. I took Tylenol beforehand, anticipating some pain. I got the usual flushing, headache, and some pain in my calves. But, overall, it was not as bad as when I was in the hospital. That may be because they were upping it about one time each day, where here at home they may up it once a week. The jaw pain while eating (at the beginning of meals) also increased.

Being tethered to an IV pump is awkward. I'm still dependent on the oxygen, too. So, wherever I go I feel like I take up a lot of space, encumbered with tubes and other breathing paraphernalia. I must look a bit like Doctor Octopus and sound like Darth Vader. So, needless to say, between that and my lack of energy, I don't get out much.

My husband and I mix my medication each evening. We timed it the other day and found it takes a little over 32 minutes to mix and change the cartridge on the pump. And, that was on a good day. Once a week I have to change the dressing and one of the connectors that go on the Hickman. And, three times a week I have to change the extension tubing. To shower I have to cover the Hickman site and hang the pump from the towel rod.

Again I cannot express how thankful I am for all the help from family and friends. I hope everyone remembers that this is going to be a long process so please do not hesitate to keep reminding us that you can help.

And for now, I will leave you with a link to an article about Carson Smith, a wonderful lady who is also living with PVOD. The article is six years old and I am happy to report that Carson is still doing well and has been stable on medications.

Flolan

In case anyone wants to see what I have to do every day concerning the medicine visit Flolan Preparation or, How to be More like Rambo at Leela's The Heart-Lung Thing Blog. She does a wonderful job explaining the steps involved in preparing the medicine, complete with photos.

Home sweet home...

Tuesday night I was released from the hospital. I was away from home for a total of ten days and I was horribly home-sick. My mother-in-law was so wonderful, staying several nights camped out in the smallest of chairs and eating the leftover food from my meal trays. My husband was there for a couple nights and was there for the Hickman placement. His voice was one of the first voices I heard when I was coming out of surgery. When I was at the step down floor he made several origami cranes for me and placed them along the windowsill. On the day I was planning to leave, the Accredo nurse, who was training me on the IV pump, turned all the cranes to face home. Through the rest of the day, all the cranes and I looked towards home, anxiously waiting.

Since arriving home I've had daily visits from an Accredo nurse. Each day she has helped us go through the steps of mixing the medication, changing the cartridge on the pump, and starting the meter on the pump. She demonstrated changing the dressing on the Hickman yesterday. I thought it was disgusting seeing the hole in my chest with the tube sewn in. I suppose I will get used to it, but it is so weird. The nurse is extremely sweet and I like her a lot, so when she starts leaving us on our own, like tomorrow, I will miss her visits.

Every day I've been home I've had a gigantic appetite and keep eating. In the hospital I got very little protein. The majority of the food they offered was starches and sugars. What little hunk of meat showed up on my plate, I devoured. The vegetables were canned variety and much of the fruit offered was swimming in artificially flavored syrup. Dessert options included packaged cups of stuff--sherbet, pudding, frozen yogurt--all with artificial or substitute sweeteners, artificial flavors and artificial colors, emulsifiers like headache-causing carrageenan, and other stuff people should never be eating anyway.

Today I started getting my INR monitored, so that I don't take too little or too much blood thinning medication. Being on a thinner means being more careful as the blood will not clot as quickly as normal. I also have to watch certain foods that can alter the function of the medicine or else my INR reading could be thrown off.

I go to the Cleveland Clinic next week for a follow up and more blood-work. I am pretty sure they replaced all of my blood with saline while I was there. So, I assume they want to make sure they drain me again before my body has time to recover.

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!