Welcome to Duke Lung Transplant Friends
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Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
Diane Detmer
Website designed, published and maintained by Diane Detmer
Contact Webmaster: dinki@charter.net
The first few months following the lung transplant may be considered by many to be the roughest. The goal for most of the patients we have known was to get through the required Rehab sessions and return home. Many patients move to Durham for the transplant and by the time they get to move back home they have spent more than a few months living in Durham. Bill and I and our daughter Allison lived in Durahm for 4.5 months.
Next to being released from the hospital after the transplant, I think moving back home was the scariest thing I've done in my life! The responsibility was enormous and the hospital isn't just down the street any more to run to if something goes wrong. We were on our own! Although no one likes being the hospital, that place was the safest place to be after a lung transplant. A real security blanket most of the time.
Ater moving back home not only did we have to get Bill settled in, we had to get food in the house, make sure everything was clean and get the van unloaded while making sure Bill's IV's and other drugs are kept on schedule. It was exhausting and scary. Although we were only home two days before we had to go back to Duke for Bill's first followup appointment; we were home and that's all that mattered. The followup appointment went fine and we were confident we had everything under control. Bill's second followup appointment was about 10 days later and was sure to be "different".
October 24, 2005 we returned to Durham for that second follow up appointment. We were thrilled that we had gotten settled in at home and Bill was doing so well. I stayed at the hotel while Bill went to the clinic and got his bloodwork, PFT's and chest x-ray done. I relaxed a bit and took my time getting ready for the day. Bill called to tell me that he was on his way back to the hotel to pick me up for lunch. He then informed me that his transplant coordinator had called and told him NOT to go to his clinic appointment but to go to the hospital right away! As it turned out he had a condition called Pneumatosis. Neither of us had ever heard of this before and the reaction of the Drs. was frightening. Leave it to Bill to have another weird complication.
Since Bill had been doing so well and our confidence was so high, we just packed an overnight bag for the trip and expected to go home after his clinic visit. Now, Bill was being admitted to the hospital and we didn't have any clothes! The GI surgeon explained that they saw "free air" in Bill's abdomen which caused great concern. There isn't supposed to be "free air" in the abodmen. He wasn't allowed to eat or drink ANYTHING. What made things worse was the fact that Bill felt fine. He just sat there day after day. The GI surgeon came into his room three times a day to see how he was doing and then called him on the phone every night after he went home from the hospital! He finally told us that his concern was that Bill's colon was going to rupture and they would have to take him to surgery and remove his entire colon! So everyday he would come in and ask Bill if he had any pain or other symptoms besides hunger.
True to his CF digestive system I warned the Drs. that if Bill didn't recieve any nutritian beyond the IV liquids he would loose three pounds a day. Of course they didn't belive me; no one looses weight that fast. Well, Bill does. True to form Bill lost about three pounds a day. After TEN days they decided that even though they didn't want to give him a reason to get an infection they had to give him some nutritian. So, he had a line placed for TPN. TPN contains some fats (I think) that cannot be purified, so the risk of infection for a transplant patient is higher. They tired to get an IV line in big enough for the TPN but they discovered he has clots in his shoulders and they couldn't get past them. So he had to have a central line placed. Thankfully there was no infection, no surgery and he was able to gain back the weight he lost with the TPN and we are thankful for that.
Did you remember that we went to Durham WITHOUT CLOTHES? Bill didn't need any because he could wear a hopsital gown, but he likes to dress while in the hospital if he feels well enough. He hates hospital gowns. I waited until the Drs. had more confidence he wasn't going to explode and I made a couple of late night trips to Wal-Mart to get the things we needed. What an ordeal. After two weeks in the hospital, Bill was released from the hospital but we still couldn't go back home. We had to get an extended stay hotel room and stay an additional three weeks in Durham, hoping that Bill wasn't going to explode. I visited a local craft store and purchased some knitting needles and yarn to pass the time. I knitted 10 scarves during our stay in Durham!
We learned a very important lesson. Don't ever go to Durham without at least a weeks worth of clothes and personal items (we actually pack for two weeks...just in case). You just never know when you'll get to go home again. Oh and take along a little project or maybe a long book!
The Pneumatosis eventually resolved itself and we are so thankful. We are also thankful that Dr. Maroquin exhibited such restraint. After all as he explained to us; he is a surgeon and when something is broken he goes in and fixes it or... takes it out. Whew!, that was a close one to say the least.
Next to being released from the hospital after the transplant, I think moving back home was the scariest thing I've done in my life! The responsibility was enormous and the hospital isn't just down the street any more to run to if something goes wrong. We were on our own! Although no one likes being the hospital, that place was the safest place to be after a lung transplant. A real security blanket most of the time.
Ater moving back home not only did we have to get Bill settled in, we had to get food in the house, make sure everything was clean and get the van unloaded while making sure Bill's IV's and other drugs are kept on schedule. It was exhausting and scary. Although we were only home two days before we had to go back to Duke for Bill's first followup appointment; we were home and that's all that mattered. The followup appointment went fine and we were confident we had everything under control. Bill's second followup appointment was about 10 days later and was sure to be "different".
October 24, 2005 we returned to Durham for that second follow up appointment. We were thrilled that we had gotten settled in at home and Bill was doing so well. I stayed at the hotel while Bill went to the clinic and got his bloodwork, PFT's and chest x-ray done. I relaxed a bit and took my time getting ready for the day. Bill called to tell me that he was on his way back to the hotel to pick me up for lunch. He then informed me that his transplant coordinator had called and told him NOT to go to his clinic appointment but to go to the hospital right away! As it turned out he had a condition called Pneumatosis. Neither of us had ever heard of this before and the reaction of the Drs. was frightening. Leave it to Bill to have another weird complication.
Since Bill had been doing so well and our confidence was so high, we just packed an overnight bag for the trip and expected to go home after his clinic visit. Now, Bill was being admitted to the hospital and we didn't have any clothes! The GI surgeon explained that they saw "free air" in Bill's abdomen which caused great concern. There isn't supposed to be "free air" in the abodmen. He wasn't allowed to eat or drink ANYTHING. What made things worse was the fact that Bill felt fine. He just sat there day after day. The GI surgeon came into his room three times a day to see how he was doing and then called him on the phone every night after he went home from the hospital! He finally told us that his concern was that Bill's colon was going to rupture and they would have to take him to surgery and remove his entire colon! So everyday he would come in and ask Bill if he had any pain or other symptoms besides hunger.
True to his CF digestive system I warned the Drs. that if Bill didn't recieve any nutritian beyond the IV liquids he would loose three pounds a day. Of course they didn't belive me; no one looses weight that fast. Well, Bill does. True to form Bill lost about three pounds a day. After TEN days they decided that even though they didn't want to give him a reason to get an infection they had to give him some nutritian. So, he had a line placed for TPN. TPN contains some fats (I think) that cannot be purified, so the risk of infection for a transplant patient is higher. They tired to get an IV line in big enough for the TPN but they discovered he has clots in his shoulders and they couldn't get past them. So he had to have a central line placed. Thankfully there was no infection, no surgery and he was able to gain back the weight he lost with the TPN and we are thankful for that.
Did you remember that we went to Durham WITHOUT CLOTHES? Bill didn't need any because he could wear a hopsital gown, but he likes to dress while in the hospital if he feels well enough. He hates hospital gowns. I waited until the Drs. had more confidence he wasn't going to explode and I made a couple of late night trips to Wal-Mart to get the things we needed. What an ordeal. After two weeks in the hospital, Bill was released from the hospital but we still couldn't go back home. We had to get an extended stay hotel room and stay an additional three weeks in Durham, hoping that Bill wasn't going to explode. I visited a local craft store and purchased some knitting needles and yarn to pass the time. I knitted 10 scarves during our stay in Durham!
We learned a very important lesson. Don't ever go to Durham without at least a weeks worth of clothes and personal items (we actually pack for two weeks...just in case). You just never know when you'll get to go home again. Oh and take along a little project or maybe a long book!
The Pneumatosis eventually resolved itself and we are so thankful. We are also thankful that Dr. Maroquin exhibited such restraint. After all as he explained to us; he is a surgeon and when something is broken he goes in and fixes it or... takes it out. Whew!, that was a close one to say the least.
Lessons Learned
by Diane Detmer
by Diane Detmer
Duke Lung Transplant Friends Caregivers Stories