It must have seemed like forever since I dropped out of sight and stopped posting on my blog. Well, it’s not your imagination; it has felt like forever – for me too.
Many of you know (and for those who don’t), I spent the last 66 days tethered to an IV pole and a hospital bed with some “House”- like (remember the TV show?) ailment that eluded doctors and rendered me helpless.
It started with 103-degree spiking fevers and chills once or twice a day. The fevers were often high enough to cause my eyes not to track and mild hallucinations – I could see the room, and people but nothing made sense. I was out of it. (But I really wish I could remember some of those Age of Aquarius visions and feelings … for my art, of course).
Finally, after bone marrow biopsies (looking for cancer), kidney biopsies (looking for my kidney transplant rejection), a Bronchoscopy, multiple MRIs, x-rays, CAT scans (good news, I don’t have to turn on a light when I get up at night for the bathroom – I glow), talk of removing my spleen, and finally a major surgical jaunt into my lungs (yup, there were clouds forming – but not until 2-weeks after I was hospitalized!), an answer was found.
I spent a great deal of the time in isolation. My white blood cells fell dangerously low making me even more susceptible to anything and everything flying by. Then, not to be outdone, my red blood cells took a nosedive, which meant several platelet and blood transfusions.
Over two months alone in a room, with the exception of Mr. Electric who tried to balance a fulltime job, a household and a very sick husband. I was losing it.
I was finally diagnosed with something called histoplasmosis and is also known as Ohio Valley Disease. Histoplasmosis is a disease caused by a fungus. Symptoms of this infection vary greatly, but the disease affects primarily the lungs] and it can be fatal if left untreated. Here’s the rub: There are areas of the country where certain fungi live comfortably. There is a fungus in the Arizona area. Another in the San Diego area. Another type in the Minnesota area. And another in the Ohio Valley where I grew up (Pittsburgh). These fungi are endemic to the specific areas and many, many people carry the fungus in their bodies them their whole lives.
I haven’t lived in Pittsburgh since September 1975, but guess what settled in my lungs? It wasn’t until I became immune suppressed due to the kidney transplant anti-rejection drugs that this fungus among us reared it’s ugly, and rare, head. Lucky me.
While the cure is almost worse than the disease (the side effects of the IV drip were nothing less than horrifying and torturous), I will be being treated for this using massive (and also somewhat rare) antibiotics for at least a year.
Two days ago I was sent home.
After months in a bed, I have to tell you I’m as weak as a kitten and can barely walk or get up or down stairs (it’s going to take fortitude), I’m extremely emotional (crying 24/7 and I don’t know why), I am having a hard time walking, and also have a slight tremor in my hands, which I hope is temporary.
And just like Jesus (sorry) I have a hole in my left side with stitches from where the lung tubes and cameras and tools were forced into my chest (and it still hurts like a moth …. never mind).
I want to thank everyone for their prayers, and messages, and cards (which were all hung on my wall and amazed everyone who walked into the room), flowers, quilts, cupcakes, and gifts.
When the going gets rough I go inward (you might find this hard to believe but I’m an introvert at heart). I didn’t post much, but your thinking of me meant the world to me and kept me going when I didn’t want to – or when I never thought I’d leave that hospital without a hearse (yes, it got that bad).
The medical team demands that slow down and take it easy for the next several months so I will be forced to cancel several gigs (and I’ll get by on my looks, I guess).
The experience, while frightening and grueling, was also so illuminating and such an opportunity for spiritual growth, that I am reminded once again – no matter how bad it gets, there is ALWAYS something to learn, an opportunity for growth, and a silver lining.
Most importantly, the greatest lesson I learned through one particularly high fever and I was sure I was closing my eyes for the very last time …. There is nothing to fear in this world, and nothing can stop your dreams if you just go for broke. When our end does come, nothing matters or makes a difference except how much you have loved, how much you have given of yourself to others. The rest is all illusion. The rest is just bullshit.
Thank you for still being here with us. I prayed that your transplant was not giving you a problem. I have had Rocky Mountain Spotted Fever and It is no fun. Two or three days in IV and don’t ask what they did. Still praying for you and your joyful spirit. Sue McKelvy
Mark, I’ve been worried about you and was so relieved to see your post today. Please take all the time you need to recover fully. Just relax and listdn to your hair grow!!!
Oh my goodness, Mark – so very sorry for all you’ve been through! Sounds like a miracle you’re still here. But I’m thankful you’re getting better. I thought histoplasmosis was something you got from pigeon droppings. Had you been feeding the pigeons?? Lol. I wish you a Merry Christmas, continued healing, and an abundance of blessings in 2016!! Sewingly, Annette 😋
Thank god they finally figured this out. We always knew you were a rarity. What a happy New Year you have to look forward to. All the very best,
I had no idea you were going through all of this..tears for what you’ve been through. I have a son that had a transplant 15yrs ago so I know how tricky things can get. Praise God you are home and on the road to recovery…And with your sense of humor intact. Be Blessed!
So happy you are home, even if you still have a long recovery ahead of you. At least it’s a recovery! What a freaky thing to happen. At least you won’t have to worry about dieting. I hope Evan has come around. His attitude was probably just covering his fear. He’s still so young. I know it’s none of my business, but I worry about how you guys are doing financially. Coming from Canada and socialized medicine, up here it would all have been covered. I hope whatever insurance you have has shouldered some of the burden. If I win the lottery on Friday I’m sending you money!! Much love, -Suzanne Stranks
Sent from my iPad
Wishing you a speedy recovery.
Dear Mark – I am so sorry to hear you have been so unwell. I hope you continue to recover and Nelson and I are thinking of you. With all good wishes Lucie