TRANSPLANTED!

I know I’ve been gone a long time. Back in January, I had an acute exacerbation of my COPD. I spent a few days in ICU for the first time in my life and then a few more in a regular room for a total of 10 days. I got out late on the 24th of January and finally got home about 6:30 that night.

Man, it was great to be at home. Cuddled with the crazy dog for a bit, drank a little coffee (decaf) and just chilled with the hubby for a while. Then it was bed at 9:30 for a much anticipated night in my own bed. Until…

The phone rang at 11:30 PM, just a mere 2 hours later. It was one of the doctors at UT Southwestern.

“I think we have a set of lungs. Get up, get dressed and standby.”

Talk about caught off guard. I was supposed to come off the list temporarily to give me time to recuperate from the exacerbation. So we certainly were not expecting that call. Second, I didn’t know what to think or what to feel. I was nervous, pacing the floor, trembling even. To give it one name… terrified.

Thirty minutes later the second call came. “Come to the hospital.”

I know she said more, but I don’t think I heard her. Now everything kicked into high gear, including the level of my terror. I was so scared I don’t even remember part of the trip there.

I won’t bore you with the blow by blow of everything that transpired. The fact is I don’t remember several days of it. I vaguely remember a few individual moments or events here or there in ICU. Especially my husband rescuing me by insisting that they get the #@%^*) BIPAP off of me. It was naturally a very tough time, one of the toughest I have ever faced. I ran more than one poor therapist or others out of the room when I just couldn’t take any more. And from what I’m told it was most definitely not always nicely. I think I might have embarrassed the husband a time or two and that’s tough to do.

Before I knew it they were all expressing their surprise at how rapidly I was progressing. That expected 4-6 week stay turned into 2 weeks. I think that was due in part to how well I was doing and, even though I was in isolation with a now suppressed immune system, they wanted to get me out of there to get me away from all the germs that float through any hospital. I did not argue.

Thank God that one of my sisters had (or manufactured) the opportunity to come and spend some time with me. I have no idea what I would have done without her. I was so sure I could take care of myself when I got home. Boy was I ever wrong! She has been invaluable. Thank, Sis!!!

So it has now been 3 weeks. I feel guilty that I waited such a short time for my lungs after going on the list (25 days) and that I am doing so well when I know other transplant patients are not. I’m walking on my own, doing more and more every day. Yesterday was my second visit to the clinic this week for follow-ups. They are more than pleased over the rapid recovery that is going on.

I know I am blessed. The timing alone should convince anyone of that. The rapid recovery is another blessing. I so look forward to the day when I won’t need to cause so much disruption in the lives of others.

My heart and prayers are with the family on the loss of the generous donor. I will never be able to express the full gratitude that I feel for the gift they gave to me. I haven’t quite come to grips with all that has happened, but there is no doubt that my profound gratitude runs true and deep.

My family, my friends, and all of you are certainly a huge part of this. Your support and your ongoing prayers and well wishes have meant so much. You have sustained me through it all and I am living proof that prayers work and I humbly ask you to continue to pray for the long road I still have ahead of me. Thanks to you all, thank you to God, and thank you to some pretty amazing doctors.

And I have to especially thank my wonderful husband. He has been right there with me step-by-step for the whole past year of struggles. I am not exaggerating when I tell you that he saved my life. I would not even have lived the last year. I would have never sought out the treatment that he pushed me to get. And I most definitely would have never even considered the transplant if not for his love and encouragement. He started the ball rolling that has now brought me to the day that I no longer have to wear oxygen and after the 25th of this month there should be no more breathing treatments. I’ve worn the oxygen so long that it took them several days to convince me I could take it off. Instead they finally just turned it off without telling me until I took the cannula off on my own. This day would have never happened without the other half of my heart. He gave me a second birthday and us a second chance at life.

Now… I know you have heard this before, but I kept ending up in the hospital. We really are getting close on “Michael”. Barring any new issues or problems with the new lungs, it should be out in a very short time. Thank you all for waiting so patiently and hanging in there with me.

Until later, have a great day and Happy Reading!

~Raeann

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We Are Expecting!

It’s official and I can now announce that we are expecting…new lungs at some future date.

I thought hard about the pro’s and con’s. And then I thought back over the battles that John and I have waged for the last year. There have been many. I would have never made it this far without him and he has been much stronger than I through it all. I cannot give up on him now.

I also went back to Mamma and Daddy and talked to them for a while. I sure wish they had phones in Heaven. But I know what they would tell me. They raised four strong girls and they didn’t raise a single one of them to be a quitter. I figure if I started now that Daddy would reach down and thump me on the head for even thinking about it.

So with all that said, I am at peace with any possible requirements and procedures. I am now officially listed on the transplant list. What a great way to start the new year.

Thank you all so much for your well wishes and prayers. They have meant so much to me and will continue to do so in the battles to come. Happy New Year to each of you. Have a safe one and remember, if you drink don’t drive. If you drive, don’t drink. We want you all right back here tomorrow.

Happy Reading! ~ Raeann

Quality of Life vs…

Well it has been a while, hasn’t it? Since I was last here the days have been filled with some hospital time, some time feeling not so great, and some feeling okay. I’ve worked some on the books as has my editor who is currently working on ‘Michael’ (coming real soon). I have reached the point where I can no longer work up to my own personal standards in a full-time capacity and have been forced to reduce the number of hours I spend working at the day job. The passing time has not been easy as you could guess from my conspicuous absence from Facebook, Twitter, and this blog.

As most of you know, I’ve also been through some very extensive testing for evaluation of my suitability for a lung transplant. Thankfully I am nearing the end of that process and have been approved to be placed on the list although I would be considered a high-risk candidate and rejected by most transplant facilities. Which brings me to a question that I have asked myself several times since all of this started but have never felt as deeply as I do with the decision I face now. When does the quality of life outweigh the quantity of time you have left to spend with those you love? Knowing that there is no guarantee of another day with or without the transplant makes it even more difficult to answer that question.

Depending on the final tests, I may require the permanent placement of a feeding tube to be put on the transplant list. One of the earlier tests showed an issue with reflux up to the point that it could reach the juncture with the windpipe and thereby run the risk of food and/or acid seeping into the lungs and cause either damage or aspiration. I personally think their initial test provided a false result, but who knows. The first of the last two tests came back normal. The other test is not until Jan. 9th and 10th. But, in the meantime, I have to make a decision whether I will or will not agree to the placement of the tube if it is deemed by them to be medically necessary. If I say ‘yes’, I am on the list. If I say ‘no’, I am not. On the surface it sounds like a no-brainer. Of course I will accept it. Well…hang on a minute.

Let’s think about this. While a transplant is my best chance of living more than one or two more years, it is not a guarantee. I may not make it out of the operating room. I may reject the lungs in one day, one week, one month. And while I absolutely LOATHE dragging this oxygen tubing around behind me 24/7 and would enjoy nothing more than chopping it into tiny pieces, I would be swapping that for not only managing the anti-rejection medication, but also a myriad of procedures and rules that transplant patients must adhere to. But, if the tube is needed, then I’m also adding all of those pieces required to “feed” and hydrate myself several times a day and make sure I carry all the supplies around for that wherever I go. Looking at it from that perspective, the oxygen tubing doesn’t seem to be so evil after all. It’s at least six of one or half-dozen of another. Or to put it another way, damned if I do and damned if I don’t.

And what about the food? This means nothing by mouth…EVER. Fried chicken with white gravy. Steaks. Hamburgers. McRibs! Burritos and tacos. Black-eyed peas and cornbread with fresh tomatoes and corn on the cob. Homemade stew. Pecan pie. Ice cream. And let’s not forget…sweet tea and coffee. Holidays must be fun smelling all those wonderful smells and watching the “mouth eaters” feast while you slink away with your little can of food and a syringe. You get the picture…or at least the picture in my brain.

So what is the answer? Is it worth it knowing that it comes with no guarantee of more time knowing that the high risk of complications could actually cost you time?

I do not know. I just know I have to make a choice. I could choose to accept it and then not need it, but I can’t count on that. If I say ‘yes’ then I have to be willing to stand behind that decision, regardless of the consequences. I just don’t know.

Week One of Testing Done

Just after the heart cath.

Just wanted to drop a really quick note to let everybody know that I am still kicking. Made it through all 20 of the appointments this past week for the transplant evaluation. I had one more scheduled for this week but they have added a few more based on some of the results found this week. Everything is pretty much normal. They just want to make sure. They’ve pretty much declared me as being disgustingly healthy other than the whole can’t breathe thing and that I’m still underweight. But… I am up to 105!!!!!!  Yippee!!!! Only 5 more pounds to go to meet my goal of 110.

I know this is short and sweet. It has been an extremely exhausting week. Up at 4:00-4:30 every morning to be on the road by 5:00-5:30 in order to make it over the UT Southwest in Dallas for the first appointment of the morning every single day. And they were not short days. I’ll be back with more later.

Until then… Happy Reading and have a great week.

Raeann

Good Riddance to September

I, for one, will not miss you. Most of it was spent on the couch unable to walk much at all. Only a few steps would shoot my heart rate into the 130’s, blood pressure into the 160’s/110’s and O2 saturation down to 85. Just typing anything took studied concentration and a truck load of patience (something I’m still struggling with). All rehab had to stop. I left the house only for doctor appointments. I lost back all the weight I had worked so hard to gain. And the panic attacks came back in a big way. That was depressing enough, but having to sit back and watch everybody else go about their daily lives as normal when I couldn’t was even worse.

And now, one medication change and one week later, here I am. Still struggling with the typing, but walking and talking (at the same time even). I’ve been to Wally World to ride around on their nifty little scooter while I shopped. I walked all the way back to the car unassisted and did just fine. We went to Mickey D’s where I ate an entirely unhealthy lunch that was SOOOOO good. And we finished it up at CVS to pick up a prescription and get my flu shot where I walked in, out and around without help except for John carrying the concentrator for me so I wouldn’t have to carry the heavy little sucker. The appetite is back so maybe I can gain that weight back. And I feel GREAT….today. We will see what tomorrow brings.

I will admit that I am definitely NOT looking forward to next week. I have 20 appointments next week for the evaluation testing for placement on the lung transplant list. There are 2 that concern me. If any of you know me you know I am extremely claustrophobic. I really would appreciate everybody sending me plenty of prayers around lunchtime and a little after on Monday because that’s when they do the MRI and it’s not an open-air one. And I wouldn’t say no to a few more on Friday around the same time when they’re doing a heart cath. It will not be a pleasant week for me and thereby not for John, poor guy.

On another good note, I’m almost through with my first self-edit for Michael. One more quick skim through it after that and it will be off to Sharon while I work on the cover then get started on Tommy.

Thanks to everyone who has bought any of my books. You all really lift my spirits with your comments and reviews here and on Goodreads, Facebook, and Amazon. I LOVE MY READERS!!!

I hope you all have a super happy weekend. Grab a book and cuddle up somewhere. Happy Reading!

Raeann

See…I knew that was a train!

In fulfillment of my promise that I would most surely complain during this journey, here I am. On my last visit to UT Southwestern, we were given a little hope, a little tiny beam of light at the end of the tunnel. It was called Endoscopic Bronchial Lung Volume Reduction. To make a long story short, they wanted to go in via the throat and use a sealant to seal off the worst damaged areas which would then die back and give the remaining parts of the lungs room to expand. No incision, couple of days in the hospital and in about 3 months I would be rocking and rolling. Well…we went back again yesterday and found out whoever predicted that the light at the end of the tunnel was often an oncoming train was right. I am not a candidate for this. First my FEV1 is 17% and it needs to be over 20%. The damage to my lungs is too diffuse rather than concentrated more in the upper lobes as it would need to be. To do that surgery would actually make me worse. So the only option I have is the transplant.

Sometime within the next few weeks, I will be running back and forth from the west side of Fort Worth to UT Southwestern in Dallas every day for 6-7 days straight for a whole myriad of tests. Everything from colonoscopy, to heart cath, tests and scans for brain, liver, lungs, kidneys, bones, and heart. The list they gave me is heart catheterization, echocardiogram, head MRI, EEG, skin tests for TB and skin cancer, Mammograms, bone density scan, etc., etc. I also have to see a cardiologist, transplant surgeon, neurologist (brain and nerve specialist), pulmonary specialist, gastroenterologist, nephrologist (kidney specialist), and dietician. And if that’s not enough then along comes a social worker to do a psychosocial assessment to assess my ability to comply with a complex medical regime as well as my social support during the  immediate transplant period and for a minimal of four to six weeks after the transplant. And THEN they get to decide if it is indicated that a psychologist/psychiatrist should also be consulted to help them further assess my needs. As if by then ANYBODY wouldn’t need a psychiatrist. How many points do you think I would get taken off for the “and the horse you rode in on too” remark that I’m bound to make before we are through?

Then and only then will they compile all that information (assuming they didn’t find something that is prohibitive like any kind of cancer) and present it to the “Selection Committee” who has the power to deem whether or not I am an appropriate transplant candidate. Only then can I go on the transplant list and we would wait for somebody who is a donor that is approximately my size with good lungs and blood type which could happen in days, weeks, months, or years.

And if this all comes to pass then I would be in the hospital for 2 weeks, have to go to the hospital 2 x week for a month, then 1 x a time for month, then I think he said 2 x a month for a while then once a month for a year. Off work for 4 months so worry about the bills. Worry about rejection and anti-rejection medication for life. His assessment of my life expectancy if we do nothing: 3 years. Average life expectancy after a transplant: 6 years.

Oh…and I have to gain 10 pounds and tone up the muscles in my legs.

Now for those who know me, they will already know this. I am extremely claustrophobic and I have control issues (I guess that’s what you’d call it) to the point that if you ever tie my arms down you better damn well be gone when they turn me loose and hide very, very well for the rest of your life. Now think about this surgery. I will have to be on a ventilator…which is the one thing I have listed in my advanced directives that I do not want. When I’m on the vent, they’re going to tie my hands down. They might fix my body, but my mind will never be the same.

Just shoot me now!

Davis now available in paperback!

Yep. It’s finally ready. You can find it on Amazon OR, by next week, if you just happen to be close to NE Texas or find yourself traveling through that area, you could always stop by:

Barbara’s Books & Treasures, 208 N. East Street, Atlanta, TX

For those who are keeping up, Atlanta is where this series gets its start. What cooler place could you possibly purchase your own copy?

I hope you enjoy Davis and Dusty’s story. And now… man, just wait ’til you read MICHAEL! LOL… I know, that’s just mean.

Happy Reading to all!

Well this just sucks…

Last week I probably felt better than I have in at least six months, almost like my old self except for having to drag oxygen tubing around everywhere I go. And then it went downhill all week. I only got to work one day. Missed the whole week of rehab. And I feel just about as good as I did when I first woke up in the hospital back in February.

And the reason that seriously sucks besides just feeling so sick is that two of my sisters came to see me a few weeks back. At that time I was still struggling with the anxiety in the worst way and spent most of the time standing up behind the couch in a spot that somehow seemed to be my “safe spot”. And they are coming back this weekend. With the anxiety completely under control now I so wanted the “old me” to be with them this time.

I hate this friggin’ disease!

Special Announcement…DAVIS is here!!!!!!

Finally, right? Davis (The Seven Brothers of Elko: Book Two) is now available for Kindle. Look for the paperback version in the next few days.

Davis (The Seven Brothers of Elko: Book Two)

Davis Reardon was a persistent man. Lonely, but persistent. For two years he happily watched love grow and deepen between his brother and the woman who completed his life. Jake and Brinley were two halves of a whole. And Davis was patiently waiting for his turn. Waiting for the one woman who was meant to be the other part of him.

He thought the wait was over when Dusty Lawton drove into his life. That connection, that instant recognition of matching pieces came immediately. Still, he tried hard not to slide down that slippery slope too quickly. But sliding he was. Right up until he discovered the one thing he didn’t want to know.

Gold ring. Third finger. Left hand. Married! Now what?

He was raised to never touch another man’s wife. He could practically hear his daddy rolling over in his grave at just the thought. He pretty much figured the man would rise right up out of it if he couldn’t stop that downhill slide and actually touched her. But if she wasn’t meant to be with him, how could he explain all the things that said she was?

The man who raised Dusty always told her the right man for her was out there somewhere. How cruel that she should find him when it was too late, after she was trapped in a marriage she never wanted. A marriage her husband would kill to keep her in.

In a dangerous game of cat and mouse, the crosshairs land first on Owen Lawton, while Davis, Jake and the rest try to unravel the mystery of why Dusty insists she must remain in a marriage that’s in name only, before it was too late. Just when they think the game is won, things take a deadly twist.

How it is…

So…I’m pretty sure you probably all thought I died or something. I apologize for not being around. I am still breathing…most of the time. I’m not sure I’ve ever specifically spelled it out before, but I have severe COPD with very little lung function left. This whole process of learning to cope with the disease, the side effects of the medication, the treatments, tests, depression, and an overwhelming anxiety has been just more than I could bear and truly interact with all of you. I cannot promise you that it is going to get any better although the doctors seem to at least for now have a handle on the anxiety to the point that it’s not just completely debilitating anymore. But I face many struggles coming soon and as I reach each one, I can’t tell you what will happen then. There are many tests yet to be done and we have already taken the first step of many towards the recommended lung transplant. And if that happens, that’s a whole different road to go down once the surgery is done.

I am not a fan of sharing too much personal information either on the web or even in person. Some things just seem to be better kept private. The state of my health has always been one of those things, but I think my readers should know what is happening. I’m hoping that posting a few updates here will not only update you but could be therapeutic for me. I can’t promise you that I’ll update it every day. In fact I can almost guarantee you that I won’t. And I can’t promise you that I’ll update it every time something happens. Each setback tends to push me farther inside myself and it is usually days or even weeks before I can discuss it with anyone. I still want to respond to each of you individually when you post here or on FB, but it just might not be possible or may be a while coming.

I’m not doing this for everyone to try to cheer me up or send me ‘be strong’ quotes for the day or anything like that. I’m doing this for me. Although there is no cure for COPD, I want to get better. And if writing things out helps me mentally or emotionally then that is a positive step. And if it keeps you updated on the progress of the books then that’s another benefit.

I’ve tried so hard to get back into my writing. I only have a little bit left to do on the final pass-through of Davis before it will be ready to go, but I have had so little interest in anything at all that it is very difficult to get myself to sit down and get started. I’ve been trying to write this post for over a month now and finally managed it. Maybe that’s a good sign that I’m ready to start back.

If I can just get a little healthier I just know that all the things that used to interest me will start to come back. I have to get my weight back up again. I weighed 97 pounds when they first put me in the hospital and I had gained up to 107 at one point. But I’m back to 97 now. It’s so difficult to force food down your throat that just tastes burned. Some of the medications have killed my taste buds and there are only a few things that I can taste at all. So I have no appetite but have to eat and drink nutritional supplements to try to get my weight back up. And then my physical ability has waned again since I’ve missed so much of my pulmonary rehab while we were struggling to control the anxiety. Bottom line is that I don’t weigh enough and I’m not strong enough for a lung transplant now, so that is the number one priority at this point.

On the up side, I am breathing better right now than I have in months as long as I’m not engaging in any physical activity. (Update…I was until another exacerbation sent me back to the ER on Saturday…doing fair now.) I know that sounds sort of stupid, but when you can’t even breathe freely while sitting in a chair for several months and now you can, it’s a big deal even if a weather front comes through or some other trigger crops up and messes it up again tomorrow. I’m lying down to sleep again and I’m turning the TV and lights off at night again. That was mostly a side effect of the anxiety.  I still haven’t been back on the bike but once since the last setback, but to ride again anytime, anywhere is one of my goals.

If you are inclined to follow these sparse update posts, I can promise you a lot of bitching, whining, and just generally feeling sorry for myself. Hopefully those days will be balanced with ones where I can express that I really do know how lucky I am to still be here and remember to see the good things along with the bad.

While you are so patiently waiting on the rest of The Seven Brothers of Elko, remember there are so many gifted authors out there. Some are established and some are brand new. Yes, there are some that are not so great, but keep searching. There are diamonds in the rough. Happy Reading!.