Happy Thanksgiving!

I hope you had a good Thanksgiving meal and enjoyable time with your family. We sure have a lot to be thankful for as Americans. I thank God for the many blessings in my life.

The heart cath went well Monday, however, it did reveal that I have moderate to severe pulmonary hypertension, which is new to me. That was not there last year when I had a right heart cath done. The heart itself does work well, so when I get new lungs, the hypertension should correct itself.

Last weekend I ran low-grade fevers all weekend. Sunday night I noticed a rash on my trunk and upper legs. I also was very short of breath with exertion, so I knew something wasn't right. It's a long story, but Monday my heart cath was delayed, as the rash was something they felt needed attention, as it had worsened and spread further. The doctors finally decided to proceed with the heart cath.
It is strongly suspected that I am allergic to one of the IV meds I was using, so my doctor called off all meds to give my body a break over this weekend (yeah!). However, the rash keep going, even though the meds had stopped. So, I got to spend Thanksgiving morning at the ER. They gave me some IV Benedryl and a pretty good dose of steroids and that really helped! I will continue steroids for 4 more days. I so hope this rash will go away soon. It's terribly itchy. I am going to post a picture of my PICC line (rash very visible). I figure some of you may be curious what a PICC line looks like, and others will have no desire to see what a PICC looks like! lol
My PICC has 2 lumens, which means I can receive 2 meds at the same time if I want to. The medicine travels thru a vein in my arm and empties into the chest cavity, close to the heart, so it can be distributed.

  I apologize for the low quality phone picture!

The heart cath procedure went well. I'm going to rest and will try to share more news about the heart cath in the next couple of days.
Hugs to all

quick update

Just a quick update. The oozing got a little worse overnight, so we stopped by the ER, mostly for my peace of mind, and they said that some oozing was normal and that my line actually looked good. This was coming from the head nurse, another nurse, and a doctor, so I guess I can stop worrying about that! The low-grade fever all day yesterday has me puzzled a bit, but it seems better today.  So onward and upward for the heart cath on Monday, God willing!  Will update when I can!

Heart Cath

The heart cath has been rescheduled for Monday morning. I have not coughed up anything resembling blood so far today :) and yesterday was pretty good too, so hopefully that's behind me for now. OH, some good news, I must have misunderstood the doctor about both left and right heart caths--only the right was originally scheduled :)

I may have another issue, but I sure hope not. Since approx Wednesday my PICC line has been pulling or stinging when I reach for something or hyper-extend my arm. The home health nurse was scheduled to change the dressing on Monday, but I called her to reschedule, due to the heart cath being rescheduled for the same time she was to be here. She came by yesterday to change it. The site is a bit red around it, and there was something there that she thinks is just a scab trying to form. I'm not so sure...

I have been watching it and it doesn't seem to be worsening, but I figured out that the pull was that scab or whatever crusting over, then when I use the arm, it pulls against the scab or whatever. If it looks nastier as the day goes on, I will have to put another call into the on-call coordinator. The heart cath team can look at it and tell me if all appears OK to them on Monday.

Prayer requests for today are that there is no infection in my PICC line and that the heart cath goes well on Monday. Thanks sooo much!
Lynda

No Heart Cath

My old "friend" visited me around midnight last night--hemoptysis :( I was sleeping and felt like there was an obstruction of some type to clear and had a sneaking suspicion what it was, so I coughed and sure enough, bright red sputum! I then called the transplant coordinator on call (who happened to be my coordinator) and explained that there was no way I could lay flat on my back for the 2+ hours required after a heart cath without coughing up more blood, so the heart cath(s) for today are canceled.

The hemoptysis is a little better now, but there still is red in there, but luckily it's not all red like it was at midnight. I'm going to take it easy today for sure.

Thank you for checking in and for the thoughts and prayers.
Hugs
Lynda

L and R heart cath

I had a consult with a cardiologist yesterday and during the conversation it was decided that I not only need a right heart cath, but a left one too! Eeks! Both of these are planned for tomorrow (Nov 22). Prayers that these go well, heal nicely and no complications, please.

Also, today I have my first appointment at 9 a.m. and will conclude the day at approx 5 p.m. Full pulmonary function testing with an ABG is one of the items on the schedule. ABG=arterial blood gas--blood drawn out of an artery in the wrist to see how oxygen and carbon dioxide is being exchanged in the blood stream. Not terrible, but not necessarily fun either. :/

Prayers and thoughts always appreciated :) thanks

Misc

No big news to report, just sharing…

We are somewhat settled in Durham. We are living in a hotel now, but we plan to move to an apartment if/when I get accepted into the Duke transplant program. Durham is a nice city, with a lot of trees! We were a week or two late to experience the full splendor of Autumn here, but we caught a glimpse of it with a few trees that haven’t shed all of their leaves yet. Often times the streets are lined with trees, which I’m not used, but I think it’s kind of neat. The traffic here surprised me, for sure! It’s Kellogg and I-135 at rush hour, combined! I thought Durham would be a sleepy little college town…ha! I think the fact that Raleigh is so close contributes to the traffic. In all fairness, I have to admit that Garry and Shelly have done all of the driving thus far, but I still experience the traffic as a back-seat driver (which is accurate, just ask them)! lol

I'm glad a lot of people in the medical profession have weekends off! Finally, a couple of days to rest some! This last week has been a whirlwind between packing, arriving in North Carolina, continuing IV therapy, and starting pulmonary rehab. I must say that pulmonary rehab is a little more than I was used to in Wichita, but I had already heard that through the grapevine. I started rehab by walking 15 minutes on a track (not a treadmill) and they encouraged me to not take breaks during this time, if I could stand it. I whizzed right through it, which surprised me! I do have to say that I have had more energy than normal lately, and for that I am thankful! That can all change tomorrow, but I will enjoy it as long as I can. After the walk, I did arm weights on various machines, did some exercises with a big ball, and then moved to the "bike". To me a bike is where your feet go in a downward/upward rotation on pedals; to them a bike is where you sit, place your feet on square pedals?, and push your feet forward, in front of you, against some resistance. I think I'll take the rotation for $200, please. lol I then went to a floor/mat group and did stretches and weights there. I did well on the walk, but learned that I sure need to build strength in the other areas. I'm so glad I had already been working some of these muscles with the group in Wichita (miss you guys!), or I would be in worse shape.

This next week is going to be packed with a lot of testing; finishing off the week with a right heart cath on Friday. Of course, your thoughts and continued prayers are appreciated.  Have a great week!

Hugs,
Lynda

Durham!

We arrived safely in Durham tonight. We went thru some heavy snow in a few areas, but we had a safe, long trip with no medical mishaps! Thank you for the prayers. Will update more later in the week.

Everything is still going well with home IVs. A home health nurse did blood work today to check kidneys and to make sure blood isn't too thin. I expect to hear something on that tomorrow.

Speaking of tomorrow, we are planning to leave for Duke then! Please pray for our family unit as we transition into this process--it's hard on all of us to have to say temporary good-byes. Prayers for safe travels and for us to handle all that God has in store for us, please and thank you.

More updates to come...
Hugs,
Lynda

IV progress

I was dismissed from St Francis yesterday and started home IVs last evening. So far, so good with everything! Kidneys checked out well while in the hospital and they will re-check them Friday. No blood in sputum so far (sorry if TMI), despite being on blood thinners, so that's Huge!

Continued prayers, please and thanks SO much!
Hugs
Lynda

I've done OK with the second drug so far! I hope my kidneys will check out OK when they do the blood work. The plan is to be discharged tomorrow and continue IVs at home. 

update

The PICC line procedure went well and I've had one of the 2 IV meds and tolerated it ok. Getting ready for the other one. So far, so good! 

Thanks for the prayers and thoughts!

IVs...

I am scheduled to start IV therapy Monday. I asked to be in-patient at first, to see how I tolerate them, so will be in the hospital (St Francis) for a few days, then do them at home until I go to Duke, then continue with them, most likely until transplant.

I asked NOT to be placed on blood thinners, but my doctor really thinks I should be on some level of blood thinners so I don't get clots with the PICC line. The thing with being on blood thinners is that I often cough up blood when my blood gets too thin, and as you can imagine, that's not a fun experience. Lots of prayers, please, so that this doesn't happen! I feel like I can see the light at the end of the tunnel and don't want it to be messed up with more complications/set backs. All in God's timing...just have to remind myself.

I will update more in a few days. As always, thanks :)
Hugs,
Lynda