Pulmonary Function Test results

My Boston doctor sent me an email earlier this week and told me that my blood work looks good and my pulmonary function test (PFT) was better now than it was in April.  That is great news because it means that I don't have GVHD in my lungs!!

I'm still struggling with fatigue, but the more I walk the better I seem to feel.  It's still a struggle.  I always try to remind myself that it could be a whole lot worse and I'm doing pretty well considering my body took another substantial hit.  Tired I can handle.

I've been taking a stand up comedy class, so I spend a lot of time writing.  It's keeping my mind busy and it gives me something fun to do.  It may be the best thing that has happened to me since the tick bite and transplant.  For the first time in almost three years, I'm starting to feel like myself again.  My teacher and the people in my class are great.  I literally spend two and a half hours once a week laughing my ass off.  They will never know how much they have all done for me. Every single one of them are some of the funniest people I've ever known and on top of that, they are all so nice. I didn't even realize how sad I was until I wasn't sad anymore.  I'm so glad that I followed my gut and took this class.  I may take the next one too!!

Peace out Peeps 🐥

Yale Doctor Visit

Last month I had to visit my Yale doctor just so he could order a PFT (pulmonary function test) for me.  I asked him if one of the side effects of my anti-rejection drug was hair being f'ed up.  He said he didn't know so he began typing away on the computer and it looked like he Googled it!!  Maybe there's a medical Google?!  I mean, I know how to Google!  He proceeded to say that it is known to happen about 35% of the time.  Of course I'm in that category!  The weirder or less common something is, it seems to find me.  It has worked against me a few times and in my favor a few times.  I like my Yale doctor and he was happy to put in the order for my test.

The test itself was done in Danbury and it's basically just breathing into a tube in certain patterns. One portion has to be done in an enclosed glass box.  I'm not claustrophobic, but the guy doing the test told me that people do pass out occasionally.  I assume my results were okay because I never got a call from either doctor.

My labs looked a little off to me last month, but no one seemed concerned.  That's okay because I was concerned enough or everyone!  I never really ever stop worrying.  After the first transplant, I was convinced that I would always be fine, but after the bottom fell out last year, I'm never comfortable.  I hope I will get to that point again some day.  I doubt it!  Once you have relapsed, I don't think you ever relax again.  I don't dwell, but it is there hanging out in the back of my mind.  The sense of security and complete health is gone forever.

Good news...my labs looked better this month!!  I can breath for another month!!  Next month is Boston and with any luck, my meds will be lowered.  I hate the yellow liquid I take every night, but maybe now that I finished my shots, they'll take me off. Fingers crossed!!

I almost forgot, the rude scheduler from my doctor's office, is no longer there. Hip, hip, hooray!! The new guy is very nice and pleasant!!

Enjoy this amazing weather.
Peace out Peeps 🐥

More results

Now that I'm further out from my transplant, I have to get back to all my yearly appointments.  Last Monday I had my appointment with the lower region doctor.  As every woman knows, it is the least liked appointment of all appointments.  Number one, the boobage gets severely smooshed between two plates and sometimes, for those of us who have a little extra love under the boobs, the tech has to push the fat out of the way.  Always makes me feel really sexy...not!  Then there is the complete lifting of the knockers up and on to the plate, because they are not the perky girls they once were and I know for sure that the poor tech's hands were covered with under the boob sweat. I mean, when your bazoombas look more like rice in a tube sock and hang almost to your waist, what do you expect?  Also, when I lay on my back and the jugs end up in my armpits, I wonder what is really sweating?  That's right, I have boob sweat and armpit sweat!  Oh my gosh, how humiliating!!  The humiliation continues as I continued to see the doctor.

First of all, I met with the nurse, who asked me to pee in a cup.  I don't know about anyone else, but I always pee before I leave the house and I'm not a pee on demand type of person.  This time I remembered not to pee ahead of time and it was a urination success!!  The nurse proceeded to weigh me and ask questions about my health since my last visit and my med list.  This is when the poor nurse got an earful.  Then I was brought to an exam room and told to take everything off with the gown opening in the back and a piece of paper to cover the punana region.  I don't know why, but I always hide my unders, when I disrobe.  I think it may be the whole cotton granny panty thing or the little balls from wear on my over the shoulder boulder holder.  Why am I shy about that when everything else is out in the open?  Yikes!!  Then the exam of the lower region took place and I couldn't get dressed fast enough after it's over.  There is a huge sense of relief when I'm out of there and back in my car.  Done for another year, but now I have to wait for results.  I feel like all I ever do is wait for results!!  A few days later there is a letter in the mail that my mammo was good!!!  Phew, another good report.  Next stops are a breathing test, colonoscopy and dermatologist, but they won't happen for a while.  I just want to get all this shit over and done with and get back to my life.  Every good test result is another step away from being sick! YAH!!!!

I'm not going to include any photos to this post, because that would just be gross!! Okay, I have to add a picture, because some weird ass thing showed up on Facebook! So strange!

Peace out Peeps 🐥

Bone density results

Hey everyone,

I never received a call about my results, so I called Boston.  My doctor is on vacation so his PA returned my call.  I have good bones!!!  WooHoo!!  I proceeded to ask what happened during my last biopsy when they had such a hard time getting the sample and she said she didn't know.  I'll ask my doctor when I see him in three months.  I'm a little concerned about what kept causing the instrument to slip. Also, I received more immunizations at my appointment and I had a bad reaction.  The whole upper part of my arm blew up and itched like a bitch.  I had a massive gun on my left arm.  I called my nurse and we were both surprised, because I've been handling all my shots very well.  I started Benadryl and within two days, my arm was back to its flabby ass self.  You know, the underarm wave that never ends!!

Then I had to call the scheduler to try to find out when my breathing test and labs and doctor appointment are scheduled for in October, I was told that the PA never put in orders for my breathing test.  We had agreed that I would get it done in Boston and then do labs and then see the doctor all in one day.  Well, when the PA called to tell me the results of the bone density, she said the agreement was that I would get it done locally.  I asked Lee and he heard the same thing that I did and it was all supposed to be done at once.  Whatever!!!  I have to contact Yale to get it done closer to home.  The PA then gave me an attitude about spreading my appointments out to 3 months.  She checked with my doctor and told me he said 12 weeks.  I said, "Oh, that's 3 months."  Did she think I was stupid and wouldn't realize that 12 weeks is 3 months?  I don't think she likes when I'm right and by the way, I usually am.

I had to speak to the scheduler again to see if I could move my labs and appointment up an hour, to the times I normally go.  She gave me an f'en attitude too!!  This might be their first rodeo, but it isn't mine!  She told me that he (the doctor) has other things to do and I'm not his only patient.  I told her this is how we always do it. She told me she'll speak to my doctor when he is back from vacation.  I asked if I should give her a call back in a couple weeks and she told me she'll let me know.  Yeah, right, I'll hold my breath for that phone call.  I don't know what was in the water in Boston that day, but no one is going to treat me like I don't know what is going on.  I've been there longer than both of them.  I really hope they aren't treating all the patients that are going through this hell, like they do me. Maybe they don't care for me.  Oh, who am I kidding, everyone likes me!! LOL!😂  Till next time.

Peace out Peeps!

Quick update

Good Morning,

Next week I'll be heading back to Boston to have my bone density test done.  It seems like I was just in Boston and this shit is getting old.  I'm sure it's getting very old for Lee too having to drive there in the early morning hours and then wait.  I will admit that I'm a little nervous, because things tend to go sideways at times.  I need to remind myself that it will be fine, but it's always a nerve-wracking appointment.

Remember when I wasn't able to eat?  Well, I've completely gotten over that and I've been gaining weight.  I'm happy and sad at the same time.  It's so good to be able to taste food normally again, but it sucks putting weight back on.  After my test next week, and I find out what is going on, maybe it will be easier to be more active and the pain will be managed.  What a pain in the ass! 😁

That's all for now and my next post will tell you how the test turns out.
This is a cool picture of George Washington's Headquarters in Newburg, NY. We visited there yesterday.

Have a great week and safe travels for those who are vacationing!

Peace out Peeps!

Feeling a little better

My hips and back are feeling a little better this week.  The fatigue is still pretty major, but I need to remember that my body has been through another shit storm and it will take some time.  I know it may never get better, so I'll just use it as an excuse to be lazy and watch TV.  Speaking of TV, for those of you who don't know me very well or at all, I am a major fan of ghost hunting shows.  Maybe I was preparing myself just in case things didn't turn out well with my last transplant, so I could haunt the shit out of people who had pissed me off!! BOO!  There was a show called Ghost Hunters and I was such a huge fan that Wednesdays were called Ghost Hunter day and we even went to see the guys on the show twice. The show went off the air a few years ago and I went through withdrawal.  Here's the big news...each one of the lead guys are coming out with new ghost hunting shows.  I'm so excited that I can barely contain myself.  TWO new shows!!  👻👻

That whole thing about ghosts really came out of left field, but I just write what pops into my head.  Well, not everything because that would be very disturbing to most people.  Lately, I've been thinking about my donor quite a bit.  My taste is still a little off and now I'm wondering if it's because of my new cells.  Pizza is not something I love anymore.  My favorite foods used to be cheeseburgers and tacos (I think I said that once before) and now I'm not much of a fan of either. I used to be able to put massive amounts of tacos down my pie hole and now I'll eat a couple and not love them. It's the weirdest thing. Yes, I still love soup! I wonder what Hans enjoys eating.  I also wonder what he looks like. 

My hair is still a travesty and I call it my Fred Mertz hair (google "I Love Lucy" if you don't know who he is).  It's a sad situation, but there are strands of hair in certain spots that are coming in black.  Even when I was young, my hair was brown, so this is very interesting.  I do miss my own hair, but the bottom line is, there is nothing I can do about it.  I'm just making the best of it.  The up side is that I can shower in like 7 minutes,  I can change my hair whenever I want to without having to live with a bad decision and I look kind of cute in a baseball cap. I can't wear fake hair while I'm cooking, because it will melt, which would really not be a good look.  I'm sure there are great quality wigs that it doesn't happen to, but I'm not buying them.  They can be thousands of dollars.  Anyway, back to Hans and how the hair thing ramble began, I think he has black curly hair.  I'm guessing that he is about 5'8" tall and a slender build and hazel eyes, leaning more toward green.  This is what I picture and I could be completely off base, but that's what I see in my minds eye.  My curiosity about him builds every day. I may never meet him, but I would like to know some details, if nothing else.  10 months to go before I can ask if he wants to be in contact with me.  Some donors say no.  That would be a little sad.  He's actually done more than enough for me, so it would be icing on the cake to be in touch with him.

Update on the bad dog:
Her new nickname is Shady, because that's what she is.  We started her on a new medication and she's doing much better.  She's more relaxed and not in a constant state of anxiety.  She seems happier and I think she's putting on some weight.  Her nightmares are also lessening.  All in all, we've seen progress.
She's demanding belly rubs this very minute.

Peace out Peeps

Sadie on the left and Jimmy on the right (he looks good for being 15 yrs old)

Stupid hips

Hey Everyone,
I know it's been a few weeks since I've blogged, but I needed a break after the waiting for the biopsy results.  It was very stressful waiting, I just needed some non-"c" word time.  I was attempting to be normal for a little while.  Okay, the being normal part wasn't very successful, so don't mock me out loud or in your heads!  The break from always thinking about this baloney was extremely needed.

I began my stress free time with Lee going to France for 5 days with his oldest son, Matt. Hahaha! 😂 They were there for the 75th anniversary of D Day.  Lee's dad had landed on Omaha Beach a few days after the initial wave and was a real life war hero!!  He earned a Purple Heart for injuries sustained and a Bronze Star for bravery.  Amazing, and I only wish I had had the distinct honor to meet my father-in-law.  Lee and Matt were able to follow some of the route that the original Bill Teicholz took while serving in the war zone.  What a great experience for both of them and some day I hope to be well enough to return with Lee and to head into Germany to follow more of Lee's dad's footsteps and to meet Hans (my donor).

Then to further alleviate my stress, Sadie, aka devil dog, aka cujo, aka bitch, went to the kennel while Lee was away. Phew, it was so relaxing.  Jimmy (our other dog) and I smiled with glee for the break from her highness.  Oh, did I tell you that we found her in a tree?  Yes, that is right, she jumped into the Y on a tree in order to catch a squirrel.  She also recently destroyed my prescription eyeglasses.  GRRR!!!!

I bet you are wondering about my stupid hips.  Well, they hurt really friggin' bad.  They are actually getting so uncomfortable, that it's becoming difficult to raise my leg to get into Lee's Grand Cherokee. Sleeping is not very comfortable, because every time I try to move, the pain wakes me up. One night I think I woke Lee up with my groaning and not in a good way. 😏 I can't wait for next month when I go back to Boston to have the bone density test done.  I'm praying that they can give me a shot or meds or something to help with this discomfort.  I'm also praying that it isn't something more serious than just some bone softness that can be corrected.  It's always something! LOL!

Here's a link to an article about my husband's trip to Normandy.
https://patch.com/connecticut/danbury/danbury-man-retraces-dad-s-wwii-journey-75th-d-day-anniversary

Happy Father's Day to all the Dads out there!  I know I'll be thinking about my Dad tomorrow.

Peace out Peeps!