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.

Stage 4; Year 4

Shortly after my last post my kidneys slipped into stage four chronic kidney failure. This has required closer observation and an additional doctor closer to home that I see every three months. I’m still getting blood work done every two weeks to monitor everything. The doctors have since made some medication changes trying to keep my kidneys stable and thankfully, so far it has worked. It is actually very stressful mentally to wonder if the kidneys will hold up and how long they will remain stable. I try not to worry but it’s always in the back of my mind—what if. Lately my hemoglobin continues to drop  so I’ve been going in for Epogen injections every two weeks. Even though on paper my numbers look better I’m still tired and fall asleep easily. I’m extremely fatigued and I still battle chronic migraines on top of all of this. I do my best to just keep up with the basics and have to prioritize daily activities because I get sick easily. I still look normal and young on the outside, which makes it a bit difficult when I need to ask for a special privilege—a closer parking spot, being able to sit and rest, leaving early, etc. I wish people would understand being disabled doesn’t always mean a person is in a wheelchair or old and decrepit.

Passing of time

I was surprised when a friend mentioned my long absence from this blog. So few people check it now for updates. Very few seem concerned with my trips to Cleveland and so much time has passed they’ve forgotten I’m still not out of the woods.

Several months have passed since I last posted. Since my last post several people in my support group have died, including my friend Janet from pulmonary rehab and Craig, who got his transplant only a couple months after I got mine. Their deaths forced me to reflect on the horrors transplant patients face. Many transplant recipients seem to possess an essence—a deep quality that is never afraid to take life by the horns. I think it may have something to do with being swept out of the arms of death and having that second chance. So it really sucks when these wonderful people fight with everything they’ve got for their second chance and then they die. Five years later. Three years later. Eighteen months later. One year later. Five months later. It’s never fair.

As I approach my fourth year anniversary I struggle with several health issues due to the surgeries and immunosuppressant medications, but I continue to be happy simply because I have escaped death. As I get closer to the four year mark, my transplant friends continue to die, and my body continues to hurt and fail me in little annoying ways. I am now in stage three chronic kidney disease, have joint pain, IBS, chronic migraines, and osteopenia. But I try not to complain. With all the hurt in the world right now, I always feel like I shouldn’t overshare my problems. I just continue to do what I can to reduce my risks on a daily basis, like wearing masks out in public and constant hand washing. I take my medications and listen to my body.

Each day I hold onto the hope that I will outlive the statistics. I am thankful for my donor and his family who gave me his lungs and the team who works so hard to keep me alive. Thank you to those who continue to walk beside me through it all. You are the best of friends.

Three years

I made it three years.

It was almost three years ago I woke up. I had to relearn how to walk and how to swallow.  I have a reminder--a six and a half inch scar from a sternotomy--a cut made down the middle of my chest, from the top of the sternum to the bottom. My heart was stopped and I was put on life support while surgeons removed my diseased lungs and replaced them with donor lungs.

I live each day with the statistics of lung transplantation hanging over my head. Many people tell me to ignore the statistics, but I will be honest with you. It's difficult when I deal with the physical and emotional pain of transplant. I have, since transplant lost friends waiting for transplant and I have lost friends who have received their transplant. How quickly one and two years go by and how many friends have died, either of rejection or infection or some other transplant related complication. Lungs are fragile and they don't last forever. Lungs are exposed to the outside air, pollen, pollution, germs, spores, and can suck up whatever is floating around. By one year doctors expect about twenty percent of us transplantees to die off. By five years, about forty to fifty, and by the tenth year, only about twenty-five percent will be going strong. And, all too often we deal with other health problems because of the effects from the medications we take.

Year three has been full of wonderful memories. I've been able to do much more than the second year, even with my limitations. This past year I've logged several health issues, a couple more surgeries, Gamma Knife radiation, several trips to Cleveland for follow-ups, many blood draws, and more. I keep photos of my donor on my shelves at home and can tell you that I sense that I am a whole lot happier than most people I meet on a daily basis, even on my toughest days.

Gamma Knife worked

I have, since the Gamma Knife procedure, had another surgery. This time I left the hospital with fewer parts. I had a complete hysterectomy and have another scar to add to the collection. One of my dear friends came to stay with me to keep me distracted and drove me around for two weeks while I healed. I was extremely appreciative of her visit because I was sore, tired, and grouchy. I am hoping this improves several problems, including the failed uterine ablation, the horrid menstrual migraines, and the pain that I have on top of the chronic migraines. After the surgery, my doctor said I had Adenomyosis, which explains why I had the extremely painful cramps during my periods.

I have seen my doctor who was in charge of the Gamma Knife procedure and was able to tell him how I felt about the pain I experienced. "Well, we do things a bit differently since you had your procedure," he told me.

He described a new machine in which some patients can be fitted with a suctioned mask, avoiding the pins in the skull altogether. And, speaking of those pins, when I expressed the pain experienced when the frame was taken off my head, he said they now give patients a shot of morphine when they take the frame off. They realize the headaches patients get are "extremely painful." I wonder why it took them thousands of procedures to finally do this. I am glad to hear others are getting more pain relief during the procedure than what was offered to me but I am confused as to why it took them this long.

The good news is that the Gamma Knife worked. The latest MRI shows a small reduction of the size of the tumor. My next MRI will be in six months but I will be returning to the clinic before the end of the year so that the transplant team can check on the lungs.

In January I will be celebrating year THREE with my recycled lungs! Even though I still deal with a lot of pain issues and an uncertain future, I am so grateful. I was once on a list where twenty-two people die each day waiting for a transplant but I was one of the lucky ones. I received a life-saving transplant because someone said YES to organ donation.

Gamma Knife Radiation

I am now over two months out from the Gamma Knife radiation. I can now rate it up there with the some of the top hated procedures. I guess I cannot complain about heart catherizations without sedation anymore after experiencing that. The frame was absolutely awful. But, I'm a big baby when it comes to people messing with my head anyway. The pressure of the frame was extremely painful, to the point where it felt as though my skull would crack when they were screwing the pins into it. The process includes only a tad bit of sedation so I was fully aware and alert. They injected lidocaine into the pin sites and then they screwed the four pins of the frame, two on the forehead and two on the back of the head, through the skin and tissue all the way to the skull. I was hoping they'd put me in some sort of twilight sedation but that was not the case. I was extremely agitated and upset.

By the time my CT scan was done and I had waited around for some time, the lidocaine had worn off and the pin sites were sore. They offered no pain killers and I had a migraine. The actual Gamma Knife procedure was 80 minutes long and I had to lie flat with my head still in the Gamma Knife machine. The weight of my head was basically on the two pin sites and by then they were sore and my head was throbbing. I had taken my migraine medication but I had a frame squeezing my skull and four pins screwed through my head and I was trying to tolerate lying 80 minutes on two of them poking me directly through the back of my head.

Surprisingly removing the frame hurt and caused a strange intense headache that lasted about an hour after it was removed. I still had a migraine but suffered from the pain of the frame too. Afterwards, the nurse tended to the pin sites, which were oozing a bit and swollen.

I was able to leave after I was settled and bandaged up. I felt nauseated at first, especially with the migraine, but was able to eat a little later in the day. For the first couple of days I slept a lot. My pin sites remained swollen for several days and were sore for more than a week. I had an area on the left side of my scalp that remained numb for a couple of weeks.

Now I wait until we do the follow up MRIs. That will let us know whether it was all worth the trouble. Hopefully the Gamma Knife radiation stopped the growth of the tumor or killed it completely.

List

Somehow when I returned from Cleveland Clinic I had a whole list of things...
1. The meningioma has grown. It is now time to take action before it presses into the optic nerve and causes issues. Because of the area it is in, they want to do Gamma Knife Radiation. I will be meeting with the neurosurgeon soon.
2. At a little over two years out I am suffering from bone loss due to the transplant drugs. (No, you are not getting taller... I am shrinking!) They have added a weekly oral bone drug to my regimen. Hopefully this helps so I can avoid shots or infusions.
3.We have switched my main anti-rejection drug from Tacrolimus to Cyclosporine. Cyclosporine was considered the gold standard, the original anti-rejection medicine that was used for many years before Tacrolimus became available. Unfortunately it is nasty. Each capsule comes in a foil pouch, not to be opened until use. I realized when I first took it why it comes in a foil pouch. It smells like skunk. That's why it's in a nice little foil pouch. It's like a little skunk bomb when I open it, and I have to open several foil pouches twice a day. How pleasant. Anyway, the switch is happening in hopes it will help with the migraines. Anything to help keep me out of the emergency room. I am still ending up there about once a month. Anything is worth trying so I am glad the transplant team is finally playing around with the big meds a bit.
4. I have another case of tendinitis. Different leg, different spot. Yes, it hurts. But, I don't know why. It just happened. Didn't do anything to it. But, it's not too bad. I need to limit walking, especially downhill, and I have some special stretches for it. It is slowly getting better.
5. Cardiac function looks fine. Even though my heart rate is still high (and will probably always be) due to the heart failure in the past, considering everything, hey... that's okay!
6. Spirometry readings are good. Lung function is wonderful. Thank you to my donor. I wouldn't be alive without you. And despite everything, I am not complaining.